tag:blogger.com,1999:blog-85765185340438432342024-02-20T00:27:52.876-05:00Parkinson's Focus TodayWelcome to my PD journey of discovery,
progress and stops along the way...
Read comments for more information, add a comment to join in the discussion. Select from the topics. click Older Posts to read all. Use Contact Us to do just that... Subscribe in the box below Search this BlogMagshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.comBlogger191125tag:blogger.com,1999:blog-8576518534043843234.post-81820942834280910012018-01-12T12:17:00.002-05:002018-01-12T12:17:58.679-05:00An Act Relative to Parkinson's Disease, Disability and Death in FirefightersThis post is for an issues which needs to be shared and to be acted upon post-haste. We know that the triggers for Parkinson's disease have been ignored so that people in positions of trigger exposure have been left in the cold when it involves treatment.<br />
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Some state governments have already recognized that the exposure to certain chemicals, heavy metals can be a trigger; some need encouragement to do the right thing for the people daily who put their lives on the line. Even the US Department of Veterans Affairs finally recognized that agent orange could be a causal factor in developing Parkinson's Disease.<br />
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The exposure risk of firefighters can occur over many years. Their service and their risk should not be ignored any longer.<br />
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<b><a href="https://www.change.org/p/disability-for-firefighters-with-parkinson-s-disease-due-to-toxins-on-the-job-ma-bill-h-1455-an-act-relative-to-parkinson-s-disease-disability-and-death-in-firefighters?recruiter=59266969&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=225799" target="_blank">Please click on this link, read the petition and do what you can do by lending your voice.</a></b><br />
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Share this petition with friends and family. If you live in Massachusetts, make the calls to the Speaker of the House <strong><a href="http://www.mass.gov/legis/member/rad1.htm" target="_blank">Representative Robert A. DeLeo</a> <a href="mailto:Robert.DeLeo@state.ma.us">(617-722-2500)</a></strong><br />
or send an email to <a href="mailto:Robert.DeLeo@mahouse.gov">Robert.DeLeo@mahouse.gov</a><br />
BTW the fax number is 617-722-2008 - so you have a third option. <br />
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Thank you for supporting the PD community.<br />
<b> </b><br />
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Parkinson's Focus Todayhttp://www.blogger.com/profile/01787927553995158387noreply@blogger.com3tag:blogger.com,1999:blog-8576518534043843234.post-15011398352940474212017-08-01T18:59:00.000-04:002017-08-01T18:59:08.346-04:00<b>The Blue Water Navy Vietnam Veterans Association Has a Serious Request</b><br />
The Association Needs Veteran and/or Family Assistance<br />
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The Blue Water Navy Vietnam Veterans Association posted <a href="https://www.surveymonkey.com/r/X3WK3KH" target="_blank">a link</a> several weeks ago. Below is is their request: <br />
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<div>
<span style="font-family: "Trebuchet MS",sans-serif;">We are asking
if you would donate $10.00 a year in your income tax to provide medical
and financial help to the Vietnam Blue Water Veterans whom the VA
refuses to recognize as being exposed to "Agent Orange". </span></div>
<div>
<span style="font-family: "Trebuchet MS",sans-serif;"> </span></div>
<span style="font-family: "Trebuchet MS",sans-serif;">
</span><div>
<span style="font-family: "Trebuchet MS",sans-serif;">The Agent Orange Act of 1991 was implemented to provide much-needed
care to veterans who were exposed to the harmful chemical cocktail
Agent Orange. Many of them thought the fight to get the medical
attention we deserved was over, but that wasn’t the case. In 2002, the
VA amended its initial plan and excluded thousands of “Blue Water” Navy
vets -- vets who served right off the coast -- from receiving their
rightful benefits. Because they hadn’t served on land, the VA tried to
say they were unlikely to suffer the effects of Agent Orange poisoning.</span></div>
<div>
<span style="font-family: "Trebuchet MS",sans-serif;"><br />Even
though we didn’t serve on Vietnamese soil, we were still exposed to
Agent Orange. In fact, a 2011 study by the National Institute of
Medicine found that Blue Water veterans could have been exposed in
multiple ways, including via the ships’ water distillation system and
through the air. The National Institute of Medicine also stated, “Given
the available evidence, the committee recommends that members of the
Blue Water Navy should not be excluded from the set of Vietnam-era
veterans with presumed herbicide exposure.”</span></div>
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Please note that because of exposure to Agent Orange whether directly or indirectly, a host of conditions can and have developed in anyone exposed including cancers and neurodegenerative disorders such as Parkinson's disease.<br />
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Here is a <b><a href="https://www.surveymonkey.com/r/X3WK3KH" target="_blank">link to the survey</a></b>. It will ask at the bottom if you agree to make this donation. If you will do so, click OK which will take you to the next page for additional questions.<br />
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I should have posted this earlier. For that, I apologize.Parkinson's Focus Todayhttp://www.blogger.com/profile/01787927553995158387noreply@blogger.com2tag:blogger.com,1999:blog-8576518534043843234.post-32379736607672649332012-04-03T20:08:00.002-04:002012-11-26T14:42:59.130-05:00PD News: Neupro and Parkinson's Disease Awareness Items<b>PD Items of Interest Worth Repeating</b><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhumLlzueBQAwxCubIFFgJZ3C-qgCtBnTBgGKBVyZzrfdPERgpgy7CoxRKxEKTo2UZzEH4zKNe4y6Awj1qKrhoYLh3xPIW-Fn5IdkLyHDhsbjWPnbqtHJokmomdwv_GKcNY02WFiHbNMJM/s1600/ReddishPinkForeground-LotsOfTulips_IMG_3638.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" dea="true" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhumLlzueBQAwxCubIFFgJZ3C-qgCtBnTBgGKBVyZzrfdPERgpgy7CoxRKxEKTo2UZzEH4zKNe4y6Awj1qKrhoYLh3xPIW-Fn5IdkLyHDhsbjWPnbqtHJokmomdwv_GKcNY02WFiHbNMJM/s200/ReddishPinkForeground-LotsOfTulips_IMG_3638.JPG" width="150" /></a></div>
Don't look now - and I mean that literally - but it is official, the FDA (US Food and Drug Administration) has approved the <b>Neupro Rotigotine Transdermal Patch</b> (again) It is estimated that the Neupro patch will be back in pharmacies by July of 2012 - then you can look.<br />
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For those who would like to relish the moment, you can <a href="http://www.ucb.presscentre.com/News/Neupro-approved-by-U-S-FDA-for-Parkinson-s-Disease-and-Restless-Legs-Syndrome-2d6.aspx" id="t_h_" title="Data Demonstrated Symptom Improvement for PD and RLS">read the press release from Neupro</a> headquarters in Brussels, Belgium as it was published earlier today, 4/03/2012.<br />
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For those who have been curious about the pharmaceutical grade micronized<b> creatine monohydrate</b> and the NETPD project to evaluate neuroprotective ability, I have little to report as I have not heard from the NETPD project coordinators in response to two simple questions. For those interested in the Steve's motor improvement on 10mg daily, partial arm swing returned to his left arm - the right one has been fine all along. <br />
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The CREST-E Huntington's disease study professionals generously included the information that the test subjects would receive 40mg daily. So after we increased Steve's daily amount to 20mg I noticed him walking down the hall with both arms swinging, shoulder's fully engaged. An email acquaintance who has neurdegeneration but not PD reported an improvement in his speech after taking micronized creatine monohydrate. That's really exciting.<br />
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And yes, we will be reducing the daily creatine dosage and even taking a couple of off-days every month for renal and liver protection. And yes, we are increasing his fluid intake with water, juice and electrolyte drinks.<br />
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Have you visited <a href="http://voiceaerobicsdvd.blogspot.com/2012/03/device-interventions-coming-soon-to.html" id="feak" title="Read the articles and don't forget to click on SHOP in the top tabs">Mary Spremuli's website</a> for PD and stroke <b>Speech Therapy</b>, breathing aids and DVD classes. Don't forget to SHOP while there. I can't think of a better present for someone with swallowing, breathing and speech issues and one of her classes on DVD. They are especially great for folks who don't get out.<br />
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Things we are trying: <b>Coconut Oil</b>, for the medium chain triglyceride (MCT) benefits. This time we're shooting for moving from 2.5 tablespoons (or 7 tsps) to 3.5 tbsp a day but it isn't easy. We're supplementing with capsules but that is really expensive. You can also buy MCT oil to combine with coconut oil. Don't eliminate the <b>Omega 3</b> fish oil, coconut oil doesn't contain those essential fatty acids. <br />
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I didn't know that another use of <b>Amantadine</b> is to reduce the side effects of dopamine agonists such as Mirapex and Requip. I wish we'd known this when Steve and his Neuro removed the Amatadine from his early regimen because that was when the hallucinations and impulse control problems began. It is also used later to help relieve dyskinesia, a wearing-off side effect when there is excessive cell death.<br />
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Another thing I'd like to mention in passing is that when taking levodopa as <b>Mucuna Pruriens</b>, it is possible to overdose because there is little equivalency information. I can tell you that we have ordered EGCg and green tea capsules for Steve to take with the Mucuna Pruriens rather that the Curcuminoids (MAO-A and B inhibitors. Just a test with nothing to report yet.<br />
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I got a real eye opened at the recent Parkinson's Disease Foundation Expert Briefing: <a href="http://event.netbriefings.com/event/pdeb/Archives/anxiety/" id="ibfx" title="The podcast moves rapidly but you will find helpful information here">A Closer Look at Anxiety and Depression in Parkinson's Disease</a> by Laura Marsh, MD of the Michael E DeBakey VA Medical Center and Baylor College of Medicine, Houston, TX. It is now archived at PDF for your listening and slide viewing. <br />
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We'd had to stop the <b>medical massage</b> back in 2010 when Steve became dehydrated because of the BPH and the PD incontinence issues. It was a mistake not to pick it up again once he became healthier. So we're trying to find a more convenient location despite the excellence of his previous therapist. Massage is also <b>behavioral therapy</b> which might help get him back on track or at least pointed at the tracks.<br />
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The National Parkinson Foundation (NPF) launched the first-ever nationwide initiative called <a href="http://parkinson.org/About-Us/Press-Room/Press-Releases/2012/February/National-Parkinson-Foundation,-Its-Leading-Medical" target="_blank">Aware in Care which features a free kit</a>. The kit includes the tools to make <b>hospital stays for patients with PD</b> safer. According to NPF, "<i>emerging data shows that poor hosiptal care for people with PD is on the rise - very often resulting in serious complications that are completely preventable</i>." <br />
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When you go to ORDER you will be pleasantly surprised some of the forms simply by clicking More Information under a manual and can then download it in pdf format. They are also available in Spanish. Although there is <a href="https://secure3.convio.net/prkorg/site/Ecommerce/1523245735?VIEW_PRODUCT=true&product_id=1101&store_id=1362" target="_blank">no charge for the kit</a>, you are welcome to make a donation.<br />
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Also from the National Parkinson Foundation is their announcement of a <b>Yoga Retreat for people with Parkinson's and Caregivers</b>. You can read more about the 4-day Spring or Fall programs at the Kripalu Center in Stockbridge, Maryland in <a href="http://www.parkinson.org/NationalParkinsonFoundation/files/c1/c1de5e96-e33d-424a-b4a9-28531105eb3d.pdf" target="_blank">the eBrochure</a>.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwcp9_1bNLWNRyK-xLB-Nr4TTDLqvfhwl0dg0KnUTbgCAbmaQw1lrr-vfp7kO-JntEZQZ3XuwmakvJ2t3cuaDuu7SvlBrmdhYYoue0ic3t-JWyMwGOzofHhwuOAXf_8YtutmSd0IRZh6A/s1600/Blakey+and+Steve+on+bed_.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" dea="true" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwcp9_1bNLWNRyK-xLB-Nr4TTDLqvfhwl0dg0KnUTbgCAbmaQw1lrr-vfp7kO-JntEZQZ3XuwmakvJ2t3cuaDuu7SvlBrmdhYYoue0ic3t-JWyMwGOzofHhwuOAXf_8YtutmSd0IRZh6A/s200/Blakey+and+Steve+on+bed_.jpg" width="200" /></a></div>
We received an email from Mike Justak, a YOPDer who is undertaking the task of putting together a video presentation called <a href="http://www.mjfpd.org/FaceProject/FaceWall.htm" target="_blank">Faces of Parkinson's Video Wall</a>. as a Parkinson's Awarness project. If I can ever figure out how to upload videos - videos used to be Steve's territory - he and his companion, Blakey the black cat, will be there too.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com6tag:blogger.com,1999:blog-8576518534043843234.post-36068123068337015072012-02-17T16:06:00.002-05:002012-02-17T16:21:40.244-05:00Exercises for Postural Instability and Gait Disorders in Parkinson's disease<div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong>Help for Balance,Tight Muscles and Sore Joints of PD</strong></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_iKDO4vzyN7Xae_j2ccfgartpEBP3GH43qT_d6eazH4hD-sfEHEUBc_tlr0EeH8kkujZ1DIOi4hQHSRr1eT2Q3j_-zXAjFXPilsSzbr1n5tOwhVj_TX1hxz5c3ywKUZ5Li0SI__CBdrE/s1600/MongoStretched-BlakeySleeping-DeskChair_IMG_4557.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_iKDO4vzyN7Xae_j2ccfgartpEBP3GH43qT_d6eazH4hD-sfEHEUBc_tlr0EeH8kkujZ1DIOi4hQHSRr1eT2Q3j_-zXAjFXPilsSzbr1n5tOwhVj_TX1hxz5c3ywKUZ5Li0SI__CBdrE/s200/MongoStretched-BlakeySleeping-DeskChair_IMG_4557.JPG" width="200" yda="true" /></a>The success of exercise comes from the willingness of the person with Parkinson's (PwP) to help himself or herself. Going through the motions but not applying yourself will not produce enough positive results. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">One of the early symptoms Steve developed many months before his diagnosis was Postural Instability. It is frightening not to know where your vertical or center is. We take this marvel for granted and don't realize its importance until it's gone. For those who have suffered from dizziness or vertigo, you know. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">If possible, get other friends or family members to lead you or your person with PD in exercises to vary the routine. I do not make the best exercise leader for my husband because I want him to push and that feels like work to him. I am too emotionally invested and therefore have a higher frustration level; I don't always have the patience he requires. My sister is a great exercise leader because she is patient as she moves from step to step. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">In the past Steve didn't do more than go through the motions especially after his Exercise Therapist told him that he didn't need to push through. Steve loved the idea; I hated it! Great therapist but for that bad idea - you do need to give exercise your all once you have learned the motions. Like dancing. And I propose rhythmic music to make your routine feel less like a regimen and more like a dance.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I do posture exercises regularly but I don't plan them. I sneak them in before I get out of bed or when I'm sitting at the computer or about to stand and cook. Mongo and Blakey stretch all the time - they know intuitively how important it is to jump successfully to all of those forbidden places. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<div style="text-align: left;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGchgEx92kIZ2lo34qK48pZ63SslqjncJALkRG5rpDZC56a0kLKiHclMFn-XOFjBJDEnDS8ndBD6GLeGS-f25D6BKz2kceBpdhqNOQcAXwb28PQxWjM9ft79DcAIgRowsMOCkLs3Boty0/s1600/SomethingsWrongWithMyMonitor1_IMG_2010.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; height: 158px; margin-bottom: 1em; margin-right: 1em; width: 162px;"><img border="0" height="162" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGchgEx92kIZ2lo34qK48pZ63SslqjncJALkRG5rpDZC56a0kLKiHclMFn-XOFjBJDEnDS8ndBD6GLeGS-f25D6BKz2kceBpdhqNOQcAXwb28PQxWjM9ft79DcAIgRowsMOCkLs3Boty0/s200/SomethingsWrongWithMyMonitor1_IMG_2010.JPG" width="200" yda="true" /></a></div> <strong>Chair exercises</strong> should begin with back stretching followed by body twisting. <br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> Back stretches help to strengthen those muscles responsible for posture </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> as well as reducing stiffness and promoting flexibility (range of motion) </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> And it wouldn't hurt to stretch your arms as well as your hands and fingers.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> <strong> </strong></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong> Back Stretch</strong>: </div><ol><li>Raise arms to shoulder height in front of you </li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Bend the elbows and bring palms together in front of face with fingers pointing towards ceiling - press hands first gently together and breathe through the nose - in slowly, then hold, then out.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Press hands firmly together while sitting up as straight as possible - you will feel this in the arms and the front of the chest and abdominal areas</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Next open arms wide - moving them apart with fingers now pointing at the walls - feel the stretch across the chest and shoulders - even in the wrists</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now comes the tricky part - the idea is that with arms stretched in an open position, they push backwards so that the shoulder blades are pushed together as closely as possible. The stretch will be felt in the shoulders, the shoulder blades and the neck and even the chin. </li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Repeat this exercise 10 times and relax</li>
</ol><strong> Twist the Body for Balance</strong> <br />
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<ol><li>Sit up in the chair - do not lean back - arms straight down, palms towards your body</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Still sitting as erect as possible, slowly bring arms up to shoulder level forming a cross – fingers separated. You should already feel a pull in the shoulder area.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now bend your arms and bring your hands to your shoulders - it may only be possible to have finger-tip contact</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now slowly turn/twist the upper torso to the right, let your head follow the motion as you try to look over your right shoulder</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Slowly return to face forward - hands still at shoulders</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Next slowly turn the body from the waist to the left, again let the head follow to look over the left shoulder.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Slowly return to a forward position - check posture: are you still sitting tall ?</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Stretch arms out - keeping them parallel with the shoulders and rotate arms in a small circle with the movement coming from the shoulders.</li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Slowly breathe in and out through your nose and </li>
<li style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Repeat this exercise 9 more times</li>
</ol><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNU-CYbWR1RZdihtGNhko8h3J3teB2YpxLf2GT9-fzUbZzhIcuaqTU4pxiVvjNgKtCZhGOpIZ7L_IpUKzsjNR4oXbigsX7AE8-g2HsFMxly0ovWOxIgkVi9E8iAaUYlOUER38tej7jp8Y/s1600/SomethingsWrongWithMyMonitor2_IMG_2011.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNU-CYbWR1RZdihtGNhko8h3J3teB2YpxLf2GT9-fzUbZzhIcuaqTU4pxiVvjNgKtCZhGOpIZ7L_IpUKzsjNR4oXbigsX7AE8-g2HsFMxly0ovWOxIgkVi9E8iAaUYlOUER38tej7jp8Y/s200/SomethingsWrongWithMyMonitor2_IMG_2011.JPG" width="187" yda="true" /></a><em>Note: I had hoped to have photos of Steve doing these exercises. Unfortunately he is not willing to pose for photos at this time. I will add them later</em>.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong>Marching in Place</strong> whether sitting or standing is an excellent exercise for freezing, balance, walking. You can march in place while holding on to the back of a chair or even your walker as long as the brakes are on or the walker is braced against immovable furniture. It is easier to get going from a march gait than a walk. You can march while at your desk or as a passenger in a car - don't try it while you are driving, however. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The back is as straight as possible in a march. Just play a Sousa march and you'll feel yourself sitting taller. The movement doesn't come as much from the spine, shoulders and hips as a walk but rather from the knee to the hips. Feet land squarely on the floor. It is easier than a walk in some ways. So march away.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><em>For more exercises and to read about Forced Exercise to relieve PD symptoms:</em></div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://parkinsonsfocustoday.blogspot.com/2009/02/shakin-all-over.html" target="_blank">Chair Exercises</a></div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://parkinsonsfocustoday.blogspot.com/2009/02/fly-with-me.html" target="_blank">More Shoulder Exercises</a></div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://parkinsonsfocustoday.blogspot.com/2009/05/forced-exercise-to-relieve-parkinsons.html" target="_blank">Forced Exercise</a> and other links for Dr Alberts' work</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://www.youtube.com/watch?v=-r3YxsHHSPU&feature=related" target="_blank">March Music</a> you can choose your own at You Tube. Clicking on the link will open your sound track in a new window. Yes, Sousa marches are fast.. As a child, my Grandfather played many of them on the piano but slower and they work well that way.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">But pop over to the <a href="http://www.youtube.com/watch?v=h-IoH9VCVXg&feature=related" target="_blank">Regimental Marches of the Foot Guards</a> for slow marches and work your way up to Sousa.</div></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-674891159442569072012-01-29T23:55:00.000-05:002012-01-29T23:55:46.081-05:00Postural Instability and Gait Disturbances in Parkinson's Disease<div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLG926gNq2hy-M1EZj3Jm7vfh4zk9KCIOao9yE5JlvvdtVV4aQahki0bK2Ni2EMNmO4RmRD6UtLpoNU903CNmqhkzZVOGYV5bN40-jf0oL2piIc2RClxFaMezjGAF4FVSbFjV830aa10/s1600/AlligatorLakeEffectSky_IMG_2968.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gda="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguLG926gNq2hy-M1EZj3Jm7vfh4zk9KCIOao9yE5JlvvdtVV4aQahki0bK2Ni2EMNmO4RmRD6UtLpoNU903CNmqhkzZVOGYV5bN40-jf0oL2piIc2RClxFaMezjGAF4FVSbFjV830aa10/s200/AlligatorLakeEffectSky_IMG_2968.JPG" width="200" /></a></div><b>PIGD not helped by current PD medications but there is hope for treatments</b></div><br />
Steve had several PD precursor symptoms for years. Some motor symptoms appeared early but did not interfere with lifestyle. Postural Instability appeared about a year prior to his diagnosis. The appearance was subtle. He would climb a ladder to perform some honeydo chore and come back down saying that he felt uncomfortable, unsteady, <i>not right</i> about being on a ladder. And this was inside the house. He felt that the sensation was real - as his wife I had some doubts. He was right; I wish he'd been wrong. He was exhibiting one of the Big 4 Parkinson's symptoms.<br />
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What is Postural Instability? To my eyes it is the failure to be able to identify the vertical but really it is much more. It occurs when reflexes are unable to adjust or compensate for sway, vertical, horizontal and diagonal and environmental changes. Gait Disturbances such as freezing or the loss of the natural rhythms which initiate and maintain gait, the rhythm aids in turning and in stride length are interrupted or short circuited.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcIDsU36JZpKZu0Vo94draD7JnX52-RHARocmZHhL6QhU2hKMd0tmx17kkGoa2BtVHAzEah3Ntv4FGisqk63HTuDLvyXcU_FA7wUaD2uTVJ_jXaUe3pTThABcdLWqzdVXRFS0OqSeDivU/s1600/1-Waves+of+the+Jersey+shore+rocks-1999.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" gda="true" height="147" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcIDsU36JZpKZu0Vo94draD7JnX52-RHARocmZHhL6QhU2hKMd0tmx17kkGoa2BtVHAzEah3Ntv4FGisqk63HTuDLvyXcU_FA7wUaD2uTVJ_jXaUe3pTThABcdLWqzdVXRFS0OqSeDivU/s200/1-Waves+of+the+Jersey+shore+rocks-1999.jpg" width="200" /></a></div>An easy way to identify how a PwP might sense the problem is to visualize a set of steps which do not conform to the normal rise and/or tread depth. Imagine (feel) walking up or down the stairs where the next step you take is not the same height difference as the previous step so that the spacing rhythm is disrupted. Perhaps one riser is the code max of 7.75" while another is 8" or 8.5". You automatically reach for the next step and it isn't where it is supposed to be. I've seen it when an amateur cuts a step stringer and it can kill you. Your body has a natural rhythm when descending or ascending a flight of stairs. You can simulate this by placing a magazine on one step, two on the next, none after that. You'll feel very disconcerted and off balance. You grab for the handrail. What should come naturally doesn't. That's just a part of Postural Instability and Gait Disturbance. <br />
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We recently received an email asking for information about a procedure known as ExAblate®. The writer wanted to know if there was hope for Parkinson's patients with Postural Instability after she had seen the Diane Sawyer segment on ABC World News in which a ET patient of Dr William Jeff Elias <a href="http://www.insightec.com/61080.html" id="lmwl" title="If you missed the episode about the Exablate procedure, you can see an excerpt here.">discussed her Essential Tremor life</a> before and after this unique targeted laser procedure. Although there may be a genetic link between some cases of ET and some cases of PD, the targeting will be different.<br />
<br />
ExAblate® is a procedure done using Magnetic Resonance guided Focused Ultrasound *MRgFUS) technology developed by a Swiss company, InSightec. Although there is a study underway for Parkinson's patients, it will only take place at the Center of Ultrasound Functional Neurosurgery in Solothurn, Switzerland. The studies being conducted by Dr William Jeff Elias in the US are directed to Essential Tremor as the specific brain targets have been identified. <br />
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<span class="Apple-style-span">The Parkinson's study by Insightec is geared towards long-term chronic, therapy-resistant movement disorders. Perhaps there will be some surprise results as Postural Instability (PI) or Postural Instability and Gait Disturbances (PIGD) are inadvertently addressed as well. We can only hope.</span><br />
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<div><span class="Apple-style-span">There is some research in progress. In 2009 the Michael J Fox Foundation awarded five research grants totaling $2 million for research addressing Postural Instability and Gait Disorders. </span><span class="Apple-style-span"><br />
</span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zd_idSYXwcQAxtZcpSzgxPTPbCvttTv4nyXdg7YJG3CbnomxXV3DT3y5B_jKhwGSReeAfRW5-iKTJb75fVncxl_IsRP2GdRqCK5eXKR_JMnSrV0-DInoi7D4eAFKG5zgvcpR7ULdsmM/s1600/9b-Clouds+and+soaring+bird_scan0229.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="109" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1zd_idSYXwcQAxtZcpSzgxPTPbCvttTv4nyXdg7YJG3CbnomxXV3DT3y5B_jKhwGSReeAfRW5-iKTJb75fVncxl_IsRP2GdRqCK5eXKR_JMnSrV0-DInoi7D4eAFKG5zgvcpR7ULdsmM/s320/9b-Clouds+and+soaring+bird_scan0229.jpg" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span class="Apple-style-span">Over the last few years there has been research into a part of the brain stem known as the pedunculoponitine nucleus (PPN) which is a bi-lateral target for stimulation to address gait freezing. We plan to write more about it. The PPN processes sensory and behavioral data, is related to arousal, attention. learning, locomotion rewards and voluntary limb movement. While the PPN gets input from several areas of the brain, it sends but does not receive information from the substantia nigra pars compacta. Autposies of PD brains show degeneration of the pedunculopontine nucleus. Researchers identifed the PPN as a target for Deep Brain Stimulation and the first PPN DBS surgeries have shown promise. <span class="Apple-style-span">The point is that the PPN seems to be very significant in Parkinson's disease. </span></span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span class="Apple-style-span"><br />
</span>While there don't seem to be medications which work effectively to address Postural Instability, there are some exercises which might help if done on a regular basis. We covered <a href="http://parkinsonsfocustoday.blogspot.com/2009/02/shakin-all-over.html" id="av3m" title="Scroll down the page for Marching and farther down for a march music link">marching in place as a chair exercise</a> a few years ago. <a href="http://parkinsonsfocustoday.blogspot.com/2009/02/fly-with-me.html" id="ri1q" title="Range of motion, strengthening back and abdominal muscles, maintaining posture">Shoulder exercises</a> are important for posture and range of motion. This week we'll post two more excellent exercises.<br />
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</div></div><i>Additional reading - just click the links while holding the shift key:</i><br />
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<div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbjcEsRpq9Eiqks4GlJdn2joZeyJdv3yU3lLN3DTquvKbA2EDoS9IDhF-FXlaPUQUSpK5DlpzCMvWtR0rD4CnRK6MQMy6A2tyxIavhF6zgxAnd6Rqt9vkvNS7nm21QDZ36ZyjclidebEA/s1600/6-Before+sunset+-+Mt+Pleasant+inlet_scan0129.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" gda="true" height="134" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbjcEsRpq9Eiqks4GlJdn2joZeyJdv3yU3lLN3DTquvKbA2EDoS9IDhF-FXlaPUQUSpK5DlpzCMvWtR0rD4CnRK6MQMy6A2tyxIavhF6zgxAnd6Rqt9vkvNS7nm21QDZ36ZyjclidebEA/s200/6-Before+sunset+-+Mt+Pleasant+inlet_scan0129.jpg" width="200" /></a></div><a href="http://www.prnewswire.com/news-releases/michael-j-fox-foundation-awards-2-million-for-clinical-research-on-postural-instability-and-gait-disturbances-in-parkinsons-disease-80207887.html" id="htzs" title="Here you can see the study targets of the grant recipients">Michael J Fox Foundation grant awards</a> </div><div><a href="http://www.prnewswire.com/news-releases/michael-j-fox-foundation-awards-2-million-for-clinical-research-on-postural-instability-and-gait-disturbances-in-parkinsons-disease-80207887.html" id="ocfx" title="The Start/React response and the startle reflex - the panic response">Pedunculopontine nucleous stimulation for gait freezing in Parkinson's disease</a></div><div><a href="http://www.ncbi.nlm.nih.gov/pubmed/19479730" id="lw1_" title="Suggestion that PPN mudulation may induce functional changes in neural networks associated with control of lower limb movements">Cerebral blood flow changes induced by pedunculopontine nucleus stimulation</a> in patients with advanced PD</div><div><a href="http://www.ncbi.nlm.nih.gov/pubmed/21194002" id="vkxg" title="from the University of Toronto in 2011">PPN as a target for DBS</a> </div><a href="http://www.mrc.ox.ac.uk/pdfs/martinez-gonzalez2011frontiersneuroanat.pdf" id="v.81" title="A remarkable work published in 2011">Topical organization of the pedunculopontine nucleus</a> by <span class="Apple-style-span">Christina Martiniz-Gonzalez, J Paul Bolan and Juan Mena-Segovia from the Medical Research Council Anatomical Neuropharmacology Unit, Dept of Pharmaacology, University of Oxford, Oxford, UK </span>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-4279042942138072702011-11-14T18:26:00.005-05:002012-03-15T01:08:28.041-04:00Anxiety and Parkinson's Disease<div class="title"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8EBUYl3evTxnGwpScVxT7zIxBWoC-N7jWCq9qRMD_10tjbR6c7anksAiGTC-9_D0t5Ql4V53TbkEmxFZwbRDGrSUuuUO_BLG116JtIByXu3VdJsQ54W4gA7cujJR_XwO_LxZzI1M56Ew/s1600/EastLakeTohoThruTrees_IMG_5163.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="133" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8EBUYl3evTxnGwpScVxT7zIxBWoC-N7jWCq9qRMD_10tjbR6c7anksAiGTC-9_D0t5Ql4V53TbkEmxFZwbRDGrSUuuUO_BLG116JtIByXu3VdJsQ54W4gA7cujJR_XwO_LxZzI1M56Ew/s200/EastLakeTohoThruTrees_IMG_5163.JPG" width="200" /></a></div><b>We Don't Know Why but Anxiety Is a PD symptom</b></div><div class="title"></div><div class="title">Frankly, at this time, I'm not so concerned with the <em>why</em> but rather the <em>effect of anxiety</em> on Steve's Parkinson's disease progression. While anxiety is not unexpected when one receives a diagnosis, from what I've read, it is a more common symptom in PD than in say Diabetes, Rheumatoid Arthritis and Multiple Sclerosis. As a matter of fact it is a PD precursor symptom, often accompanied by pessimism. I always thought that Steve was over-thinking things and expressing them in a negative way; now I realize that this was a PD potential rearing its head when he was still a young man.</div><br />
<div class="title"><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div>What we do know is that embarrassment is a risk factor for anxiety and social fears. We know that there might be an association with levodopa although probably not the other PD meds. We know that there may be an association with norepinephrine (dopamine is the norepinephrine precursor so you can't have one without the other) and we know that there are several other neural pathways which might contribute. We've got our eye on Serotonin and GABA. </div><br />
<div class="title"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWEGjfrgDS-Ay1CQzPG3d_ZrDPoK1PtSq7wWFhXQ3lBFU7Rgxf1hO9IL8o9TsdWDlxc3eXhZN04OGyQyQE65o53SMlhrOSyUX0B6minfXRKtjwrhlQIB83x4dHSVayJfOadWn6gNJoV28/s1600/1-TreeAgainstFlaSunset10-06_IMG_4385.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="146" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWEGjfrgDS-Ay1CQzPG3d_ZrDPoK1PtSq7wWFhXQ3lBFU7Rgxf1hO9IL8o9TsdWDlxc3eXhZN04OGyQyQE65o53SMlhrOSyUX0B6minfXRKtjwrhlQIB83x4dHSVayJfOadWn6gNJoV28/s200/1-TreeAgainstFlaSunset10-06_IMG_4385.JPG" width="200" /></a></div>Here's the thing, we know that anxiety was behind <a href="http://parkinsonsfocustoday.blogspot.com/2010/01/dehydration-and-parkinsons-disease.html" id="kecg" title="You can read about dehydration symptoms in the 2010 post, Dehydration and Parkinson's disease">Steve's first bout of dehydration</a> even though the underlying issue was actually Benign Prostatic Hyperplasia (BPH) or enlarged prostate. This in turn exacerbated feelings of urinary incontinence which in its own turn triggered extreme anxiety - enough to stop all fluid intake except for a morning cup of coffee and enough water to swallow pills and supplements. We focused on the dehydration, how to rehydrate and how to get him back on his feet to think and to function on his own again. We treated the cause and he started taking a common (and risky) prostate medication which he had turned down a several years earlier when he and his doctor discussed his prostate issue and actually checked for and ruled out prostate cancer. But we never looked at the other issue - the anxiety which overrode all else.</div><br />
<div class="title">The treatments for PD anxiety at this time are problematic. Antidepressants of various classes: Tricyclics, SSRIs, Anti-psychotics, Benzodiazepines, and non-selective MAOIs. In early 2010 we just weren't ready to risk the motor symptom treatment for the anxiety/non-motor symptom.</div><br />
<div class="title"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIjTkUB8TKcntHUjAJ0HojtkIcudJb6eNVmb1t3AWlO4QM9W187jwZXhv27wyTHeiv2oPFt3nawG1YYHd6C3ueoEMJuIk59V_61JLWgl0ygTYHNuWiUddJw-7g2bN-OdX-f0jxqjp89FA/s1600/1-WideAngle-ELake-RetentionBond-SUNSET-Clouds-Blue-DarkLowerClouds-Nice_IMG_0192.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIjTkUB8TKcntHUjAJ0HojtkIcudJb6eNVmb1t3AWlO4QM9W187jwZXhv27wyTHeiv2oPFt3nawG1YYHd6C3ueoEMJuIk59V_61JLWgl0ygTYHNuWiUddJw-7g2bN-OdX-f0jxqjp89FA/s200/1-WideAngle-ELake-RetentionBond-SUNSET-Clouds-Blue-DarkLowerClouds-Nice_IMG_0192.jpg" width="200" /></a></div>So what happened in the late summer and early fall with <a href="http://parkinsonsfocustoday.blogspot.com/2011/08/effects-of-added-stress-in-parkinsons.html" id="js9e" title="We caught this one early but the recovery is not as complete this time">the second round of dehydration</a>? The second time around was easier to spot and know what to do. I was prepared already with electrolyte beverages - mostly fruit flavored. We kept the drinks flowing. He prefers ice water from the pitcher. We had the adult incontinence briefs on hand to relieve the issue of weakened ability to get to the bathroom on time and to get through the night. Although there was no question of doing the right things for recovery, each time there seems to be a larger cognitive deficit. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We recently made some other nutritional supplement changes and I adjusted up and down to determine if they constituted any part of the problem. All the time, the vivid dreams, the hallucinations and illusions increased making Steve's reality very confusing; contributing to the a high anxiety level.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We finally resorted to using an herbal to help with the anxiety after I realized that he was self-medicating with aspirin and found an empty bottle - which had been almost full a week before. I read everything I could find about the herbal components because it does help relieve the anxiety on a short term basis. The best I can say is that it seems to have the fewest contraindicated ingredients. Certainly a better option now than prescription medications. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="title"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5KjknL5ZIf1svP6BSnHqjyX_TSOI71UAE8vbc8jWE1AZwnDUZVx5G74BUWCcQCBap3m2Pb0OY_hXp45_tnxnmqRmaLN6hxnvW7IppymLt6VnWW2dg7C-3qZ6PbCVn_5M9_TEXQcg2Tw8/s1600/Mongo+Napping_IMG_0455.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5KjknL5ZIf1svP6BSnHqjyX_TSOI71UAE8vbc8jWE1AZwnDUZVx5G74BUWCcQCBap3m2Pb0OY_hXp45_tnxnmqRmaLN6hxnvW7IppymLt6VnWW2dg7C-3qZ6PbCVn_5M9_TEXQcg2Tw8/s200/Mongo+Napping_IMG_0455.JPG" width="133" /></a></div>In addition to retreating to the safety of his bedroom for frequent naps - mostly because he feels anxious, one significant new issue was freezing. We are still working through this problem. Steve now has his <i>key words</i> to help him through the tight spots but it took 3 months and he intermittently lets panic rule so that he mixes up the words in the commands: <i>Look Up </i>and<em> Walk Forward. </em>Mostly they had a calming effect and then anxiety takes over and the words become other words - the wrong commands. </div><br />
<div class="title">I can now see that fear in his shuffle step. It makes me wonder how many shufflers out there are just plain scared. I hadn't seen it in those movements for many months but now I recognize the enemy. It isn't just postural instability - a precursor or early symptom of his - it is his terror that something bad will happen on the next step. <br />
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I know he has recovered just enough arm swing with the new form of buffered creatine monohydrate that he can walk at a slow pace but with a normal balanced stride, shifting his weight from side to side, using his shoulders to propel himself forward (that's <i>Walk Forward</i>) He has to be reminded in the early morning, when he wakes from a nap and in the evening but sometimes he can let himself relax enough to walk without anxiety. That makes my heart sing.</div><br />
<div class="title"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCJyakKoGZsoMJ0qLoNOyBJf7Uo8a5GywzAImeUJcfk41L5hPYy-U5NmjVlCtqY2ugBDdGcPT40O_hY_V7x7KYBUcNd2FOktDzhunaoLFtMU783U2v6V_QSmwyNPTl8z5l1SyTdA-UmRM/s1600/Watch+the+steps2_IMG_0463.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="153" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCJyakKoGZsoMJ0qLoNOyBJf7Uo8a5GywzAImeUJcfk41L5hPYy-U5NmjVlCtqY2ugBDdGcPT40O_hY_V7x7KYBUcNd2FOktDzhunaoLFtMU783U2v6V_QSmwyNPTl8z5l1SyTdA-UmRM/s200/Watch+the+steps2_IMG_0463.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Watch those stairs</td></tr>
</tbody></table>Our next project will be stairs. He's gone downstairs only a few times since the dehydration but he had few problems going down and none on the way back up. But he is afraid. He sees a black hole and not the steps leading to the 1st floor. He is anxious every time he walks past the stairway. His sister, a nurse, mentioned that perhaps it is eyesight issues which help trigger the fear and we'll check that possibility. </div><br />
<div class="title"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXN4cjK_oXMTmkoYuy0U_wmCJhcCl-yXPHPGQXXv083_4ZloYZuWfn2UAFjltNKiL4-E7t5NmPxMkXQIg_YhKxig8hMNIPACQ7r6bmm-a7jeRYuV50gW9EiDCFGTdu5g44yCQk2ocSfec/s1600/1-YellowSunset-Greyclouds-GreyShawow-ELakeToho_IMG_0522.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="120" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXN4cjK_oXMTmkoYuy0U_wmCJhcCl-yXPHPGQXXv083_4ZloYZuWfn2UAFjltNKiL4-E7t5NmPxMkXQIg_YhKxig8hMNIPACQ7r6bmm-a7jeRYuV50gW9EiDCFGTdu5g44yCQk2ocSfec/s200/1-YellowSunset-Greyclouds-GreyShawow-ELakeToho_IMG_0522.JPG" width="200" /></a></div>We're looking for solutions to the anxiety, the cognition losses, and the PD psychosis which play a large part in making his world a more frightening place. One possible solution may lie in a clinical trial taking place in our neck of the woods. We provided a link to the <a href="http://www.michaeljfox.org/foxtrialfinder.cfm" id="m9ls" title="Registration is quick - even if you do it each time you sign in. We found a two possible trials this morning.">Fox Trial Finder</a> in the right column under <strong>Clinical Trials</strong> but how serendipitous to have a reminder email from PAN (Parkinson's Action Network) this morning. I used that link, and looked at trials in our area again and found some new ones. So we sent an email to the <a href="http://www.acadia-pharm.com/pipeline/pimavanserin.htm" id="qw7i" title="Pimavanserin selectively blocks the 5-HT2A receptor, a target which has a role in psychosis plays an im">Pimavanserin</a> Trial, heard back promptly with a phone number and are waiting to hear back from the Cleveland Clinic Study Coordinator. We are hoping that if the psychosis can be treated, we can work more effectively to lessen the anxiety.<br />
<br />
<em>Addendum 3/12</em>:<br />
On 3/06/12 The Parkinson's Disease Foundation presented an Expert Briefing, <em>A Closer Look at Anxiety and Depression in Parkinson's Disease </em>led by Dr Laura Marsh. The archived webinar/podcast is now <a href="http://event.netbriefings.com/event/pdeb/Archives/anxiety/" target="_blank">available at PDF</a>. Listen rapidly as Dr Marsh covered a lot of material in a short period of time. I plan to listen again.</div><div class="title"><br />
<em>Additional Reading:</em><br />
<span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="font-family: Georgia, "Times New Roman", serif;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/20461800" id="u-de" title="A 2010 abstract from Brisbane, Australia: Anxiety lowers quality of life">Anxiety disorders in Parkinson's disease: prevalence and risk factors</a></span></span></div><div><a href="http://www.macalester.edu/psychology/whathap/UBNRP/parkinsons/AnxietyPD.html" id="w5c6" title="Most studies give figures between 29% and 75% for the fraction of Parkinsonian patients who have or have had anxiety disorders to accompany the motor disabilities of the disease."><span style="font-family: Georgia, "Times New Roman", serif;">Anxiety Affliction in patients with Parkinson's disease</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> </span><br />
<span class="Apple-style-span" style="font-size: x-small; font-weight: normal;"><a href="http://www.mydr.com.au/seniors-health/parkinson-s-disease-depression-personality-and-anxiety" id="zpxz" title="MIMS is the leading supplier of quality, independent medical information to Australian healthcare professionals."><span style="font-family: Georgia, "Times New Roman", serif; font-size: small;">Parkinson's disease: depression, personality and anxiety</span></a><span style="font-family: Georgia, "Times New Roman", serif;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, "Times New Roman", serif; font-weight: normal;"><a href="http://www.webmd.com/parkinsons-disease/news/20050413/pessimism-anxiety-linked-to-parkinsons" id="mgrp" title="Pessimistic and anxious personalities are associated with the development of Parkinson's disease years down the road, researchers say">Pessimism and Anxiety Linked to Parkinson's</a></span></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com1tag:blogger.com,1999:blog-8576518534043843234.post-87784448645039446082011-08-05T17:50:00.005-04:002011-08-07T09:31:49.439-04:00The Effects of Added Stress in Parkinson's Disease<strong>Does Stress Exacerbate PD Symptoms?</strong><br />
<strong>Dehydration Brought on by Stress</strong><br />
<br />
Things have been a bit hectic around here for the last several weeks. Hectic means that Steve will be become stressed no matter how things are handled. And stress means that there is little predictability about how he will react. Here it meant that Steve was growing steadily more anxious about the impending appearance of the roofing crew. Strangers were going to be all over his roof doing work which he could no longer supervise let alone climb the ladders to monitor. To top it off family dogs were spending their parents' vacation with us. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5J9M2HZTyZE4j_hb-EyBRl3adTZlPLTM1zXiqg007MgxJPaeCOnBW-_80UtP-ce6B2Y7N2DdoI58zxM7m3QO6Se9zICaoB9Qw8_6UWCgKFq83wCbCIsE3rDXhSlvOnUcq2fa85hlaV8Y/s1600/Lois+and+Steve+sans+Corgis-2011_IMG_0292.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5J9M2HZTyZE4j_hb-EyBRl3adTZlPLTM1zXiqg007MgxJPaeCOnBW-_80UtP-ce6B2Y7N2DdoI58zxM7m3QO6Se9zICaoB9Qw8_6UWCgKFq83wCbCIsE3rDXhSlvOnUcq2fa85hlaV8Y/s200/Lois+and+Steve+sans+Corgis-2011_IMG_0292.JPG" t$="true" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having a father-daughter chat</td></tr>
</tbody></table>The Corgis didn't come to Ohio this summer to brighten the days with their grins and antics but our daughter was able to spend some quality time with Steve. After Lois left for Georgia, the English Setters arrived while their mom and dad traveled to New England to repair plumbing and visit aging AD parents . <br />
<br />
For me the roofing job was stressful in terms of $$$$$ spent and the not-so-hot clean-up which followed but it was a relief to have the roof leak-free. It should outlast us. For Steve it was the stress of unknown people, sun-up to sunset noise, and chaos that sent him around the corner to a darker place. <br />
<br />
We know that stress means that the PD patient will become more symptomatic. Tremors appear more frequently. If Steve is severely stressed, his entire body might shake. As soon as he calms down, that shaking will stop as abruptly as it began. But it is the psychological symptoms which really affect his physical state. When feeling stressed, one symptom is that he manifests is feeling that he has to urinate more often - not unusual - but in the case of many men, it means that he is going to lower his fluid intake to avoid accidents. His body also becomes more rigid and he walks with a tiny shuffle severely impacting his balance.<br />
<br />
In this hot summer with fans but no central air conditioning, the sweat level has also been high. And that feeling of heat fatigue is not conducive to drinking more water to compensate but rather to begin the shut down. Dehydration looks a lot like the end stages of Parkinson's.<br />
<br />
Although I caught the dehydration symptoms early and tried to monitor the water consumption, he pulled a water bottle bait and switch on me and it was a few days before I realized that he was showing me the older empty bottles. And then...the bottom fell out.<br />
<br />
Let's face it, caregivers are often pushed to their limits by their charges. Whether you are a spouse, sibling or child, there comes a time when the fear and the urgency of the situation (feels as if it) forces us from gentle into harpy mode. He complains that he is dying and you find yourself in the body of a screaming bitch who is yelling, <em>Do you want to live? Then stop trying to kill yourself. Help me help you! </em>There is no question that the fear-factor forced him to give this some thought by the next morning and he was more open to suggestion but still quite demanding..<br />
<br />
Even though Steve never cared about really cold drinks, ice water has helped more than anything else. It isn't a lot of ice water at one time but rather, smaller amounts frequently...we topped off everything with a few sips through the straw. (Yes, I know he doesn't like straws but they are helping) I mixed his creatine (which must be first dissolved in very warm water) with ice cold blueberry/pomegranate juice. And he now downs it promptly. We use 2 or 3 trays of ice cubes a day just on his ice water. Too much water can also be damaging to the system - more is not always better just as less is always not more.<br />
<br />
Instead of going through weeks and weeks of a debilitating condition as he did in the winter of 2009-2010, he is coming back steadily from that horrible place. He can walk down the hall without help; although the cane is useful with four dogs around. He can get into bed on his own again. Am I going to let him select his medications and supplements from the organizer? Not for awhile yet - perhaps not again. <br />
<br />
Eventually we will report on adult underwear and other incontinence aids we have used. Some are clearly more absorbent than others. For now, the fever is gone, the total confusion is ending, he is neither helpless nor totally rigid in the morning, unable to get out of bed. Yes, he needs encouragement to gently stretch before sitting up. At least now he can do that.<br />
<br />
He has been miserable as he saw everything seem to vanish over night. Cognition, movement, bladder control, ability to dress, to function. He couldn't even use the TV remote a few days ago; now he's back to switching programs I am listening to in midstream. He walks down the hall easily pushing aside the rawhide dog chews and gently tapping with his care to ask a resting canine to move clear of his path. He has even become more careful with his special PD prisim lenses because he is back online and can't see the monitor without these glasses.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZiKF5iAzQHYWfvjE6mta4u8Oo1zFQuEE8GMfflCAODJtsJyFDcmhwvW40XmHqp7WZ_Aq6qIj8HFX1N1lgSqdw_mntPAHx-9u9-ZagsVusvFEL0ToNzTueFUseXhN6u-8XyL6JXbaSBYI/s1600/Topper+Watching+Roofers+while+WIllson+Sleeps_IMG_0341.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="151" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZiKF5iAzQHYWfvjE6mta4u8Oo1zFQuEE8GMfflCAODJtsJyFDcmhwvW40XmHqp7WZ_Aq6qIj8HFX1N1lgSqdw_mntPAHx-9u9-ZagsVusvFEL0ToNzTueFUseXhN6u-8XyL6JXbaSBYI/s200/Topper+Watching+Roofers+while+WIllson+Sleeps_IMG_0341.JPG" t$="true" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Topper watching roofers<br />
Willson sleeps comfortably</td></tr>
</tbody></table>Despite Steve's fussing, I firmly believe having the Setters visit was a help for both of us, not to mention Harry and Rita. The silky Setters make for delightful and calming petting in the temporary absence of the cats. While Blakey comes upstairs to complain from time to time, he has chosen to spend most of his time in the much cooler dehumidified basement with Mongo who does not like any dogs but his own. <br />
<br />
Next year we may add a dehumidifier for the 2nd floor. And next week I'll lay in a better supply of drinks to compensate for electrolyte loss. We're going to add cocomut water and Gatorade to the pantry.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com4tag:blogger.com,1999:blog-8576518534043843234.post-11204506190797893532011-06-24T15:14:00.012-04:002011-07-16T19:13:21.198-04:00Parkinson's Disease Clinical Trial Finder Customized for You<b>You can now register for the Fox Trial Finder for PD Clinical Trials</b><br /><strong>Follow the link at the bottom of this post</strong><br /><br /><div style="TEXT-ALIGN: center; CLEAR: both" class="separator"><a style="MARGIN-BOTTOM: 1em; FLOAT: left; CLEAR: left; MARGIN-RIGHT: 1em; cssfloat: left" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdLLnF6g4_8f5aDWSzjw_JUHDxaGXOP-hIh3clJBZp0ruMI2GNwgac_RRTHjH6oP-UA8MdJ5wClnDnHzaJCOcnTTO2J4CUpfs3lLWTKqyDvhjs_F44sXjtZ5RoMip9d4TjFfe2cIayDIA/s1600/Red+and+Yellow+tulip+bed_IMG_2325.JPG" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdLLnF6g4_8f5aDWSzjw_JUHDxaGXOP-hIh3clJBZp0ruMI2GNwgac_RRTHjH6oP-UA8MdJ5wClnDnHzaJCOcnTTO2J4CUpfs3lLWTKqyDvhjs_F44sXjtZ5RoMip9d4TjFfe2cIayDIA/s200/Red+and+Yellow+tulip+bed_IMG_2325.JPG" width="200" height="175" /></a></div>As you have probably surmised, we are believers in clinical trials. For some they are a way to contribute to the body of knowledge, for others they are a way to gain early access to potential treatments which might work for them. Early access generally means that the treatment will be available at no cost until it is marketed.<br /><br />The Michael J Fox Foundation has created a new way to find a Parkinson's disease clinical trial suited for your personal needs in a location close to your residence. You have the option to select the distance from your home and to change it later if you cannot find trials within the initial range.<br /><br />Although the <a id="tr1r" title="Pre-Registration page: Enter your email address, zip code and the way you learned of the Fox Trial Finder and SUBMIT - you will then receive email notifications of the opening of the Trial Finder so that you can enter your personal info and be notified of trials for which you might be eligible." href="http://www.michaeljfox.org/foxtrialfinder.cfm">Fox Trial Finder</a> won't be up and running for a couple of weeks, it is not too soon to register to receive notification. We've already registered; you can too.<br /><br />Entering your information into the Trial Finder itself can take a few minutes. You complete by checking the boxes on the form, save the info and move on to the questions on the next page. By doing this you can make sure that you are not wasting your time later or getting your hopes up for a trial which is too far away or for which you cannot participate. You can always reset the distance from your home or make other adjustments in the search parameters as there are changes in your life or lifestyle.<br /><br /><div style="TEXT-ALIGN: center; CLEAR: both" class="separator"><a style="MARGIN-BOTTOM: 1em; FLOAT: left; CLEAR: left; MARGIN-RIGHT: 1em; cssfloat: left" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAN4j6TXoxilSJ_dZ7FlVUSYwgLAaCgXp-iIL_CTm4f3VxnRejJL2jYTby-q6SrNbZHpKgxWI91QOw8SDCs_6mRKIle60PG2oIOgs9-79Rwqt3HWshSzEhFo0WIswOBSGvE63w83lZNRg/s1600/BlakeyTestingMongoOnScreen_IMG_2117.JPG" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAN4j6TXoxilSJ_dZ7FlVUSYwgLAaCgXp-iIL_CTm4f3VxnRejJL2jYTby-q6SrNbZHpKgxWI91QOw8SDCs_6mRKIle60PG2oIOgs9-79Rwqt3HWshSzEhFo0WIswOBSGvE63w83lZNRg/s200/BlakeyTestingMongoOnScreen_IMG_2117.JPG" width="200" height="150" /></a></div>For those of us who have used <a id="abdx" title="The parameters are set to Open Trials for Parkinson's disease" href="http://clinicaltrials.gov/ct2/results?term=parkinson%27s+disease&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=">Clinical Trials.gov</a>, the initial input - the search parameters - are brief but you still have to do considerable reading to find a trial that is specific to your needs. Although you will still have to review the exclusionary info, you will have a personally directed search.<br /><br />We've been fortunate enough to be able to preview the Fox Trial Finder and think it will benefit those in search of trials because of their specific PD issues. We'll post a direct link in July when it is up and running.<br /><em>July 14, 2011</em><br /><strong>Check out the new Fox Trial Finder: </strong><strong>Click here for a direct link to the </strong><a id="wh1w" title="This link will open to the first page of the Fox Clinical Trial Finder. Just click, open the page and answer the questions for a personalized and streamlined search for suitable trials in your area." href="https://foxtrialfinder.michaeljfox.org/"><strong>Fox Trial Finder</strong></a><br />According to MJFF: <em>With Fox Trial Finder, you can create a profile including basic information about yourself (such as location and experience with PD) to identify your potential clinical trial matches. Registered users have the ability to review trial matches, bookmark interest in trials, and send messages directly – and anonymously – to trial coordinators registered on Fox Trial Finder</em>.<br /><br />Don't forget to adjust the mileage bar in the left column to the farthest distance you are willing to travel for a trial - if you don't, you'll receive results from the next state or more.<br />You can also see the subjects of the trials in the left margin and can simply select a topic.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-21553552220221240902011-06-17T14:00:00.077-04:002014-08-19T19:36:44.344-04:00Random Thoughts and Ideas about Parkinson's Disease<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1hOCoWDyClbYhSvLLAMcMBDjuFFOlD_YlyCUQdfSr3OelaQw8FNbZfAnXidBPXz4GxzOy-qLE9_65mKeyGkez4XcFoTNjNDsk8dJ3q6s2tPiQTthKsndXfqF-PJudkk9EOnHFiJXG3MM/s1600/Rhodies1-random+thoughts_IMG_0110.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1hOCoWDyClbYhSvLLAMcMBDjuFFOlD_YlyCUQdfSr3OelaQw8FNbZfAnXidBPXz4GxzOy-qLE9_65mKeyGkez4XcFoTNjNDsk8dJ3q6s2tPiQTthKsndXfqF-PJudkk9EOnHFiJXG3MM/s200/Rhodies1-random+thoughts_IMG_0110.JPG" height="128" width="200" /></a></div>
<b>PD is always with us even when we ignore it </b><br />
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An apology is in order for the dearth of posts lately. We've been tweaking past posts and side column information and now we'd like to share some random thoughts we've had recently.<br />
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<b>Lifestyle aids</b> - If you look hard enough you'll find several interesting products including <b>scissors</b>. At one point in our household there were two lefties. One had to have a lefty scissors, the other couldn't use one. But this is different. There is a <a href="http://www.caregiverproducts.com/site/270651/product/AMCPTC2" id="i3:g" title="Extra large handle for swollen or stiffening fingers">long reach scissors</a> for helping with toenails. We don't know if it is really long enough but it might help. There is also a <a href="http://www.caregiverproducts.com/site/270651/product/AMCPTT1PB" id="j9ie" title="According to the copy, this scissors is spring loaded.">table top mounted scissors</a> which might help for those who can only use one hand.<br />
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<br />
We wrote about other <a href="http://parkinsonsfocustoday.blogspot.com/2009/06/dressing-for-parkinsons-disease-can-be.html" id="l-9-" title="Aids for dressing, eating, food preparation, walking, bathing, reading">basic assistive devices</a> a few years ago. It's always a good idea to keep checking because people are always finding clever ways to help adapt to PD issues. <i>We would appreciate your input on experience with <b>adult incontinence underwear</b> brands through your comments below or by </i><a href="mailto:parkinsonsfocustoday@gmail.com" id="l-.n" title="We'll post the results of reader opinions anonymously"><i>email</i></a>.<br />
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<b>Toe Cramps</b>? If a calcium/magnesium along with a potassium supplement doesn't work, perhaps <a href="http://www.amazon.com/Gel-Flex-Toes-Toe-Stretchers/dp/B003L63UZM" id="ht.e" title="There are different options, this is just one">Gel Flex Toe Stretchers</a> or YogaPro Yoga Toes might help. They look sort of like the foam pads I tried to use for separating my toes to keep nail polish from smearing. Would those work too? Those will cost about $2.00 for a pair.<br />
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The <b>laser </b><a href="http://www.ustep.com/" id="l_g0" title="Just click the link to go to the store"><b>mobility walker for Parkinson's disease</b></a><b>.</b> Made by U-step who also makes a laser cane, these walkers are not inexpensive although you can still get considerable support form Medicare for their purchase. This is a <b>heavy duty walker</b> with seat and basket, the laser device which helps to break a freeze can be purchased separately.<br />
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We've only mentioned<b> medical alert tags</b> once, but the more we read anecdotal experiences, the more we realize just how important these dog tags, pendants, wallet cards, bracelets can be. It is important that the information be on the tag itself. There are several companies which can create this identification for you. Consider how symptomatic you might become or how painful withdrawal might be if medical personnel did not have your medication information upon admission to the hospital...or even before that. <br />
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<b>Multi-tasking</b>. In ADHD low levels of dopamine prevent a child from focusing - is that similar to the lowered ability of PwPs to multi-task?<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_eyCmavfNvasHtznPyfGPGpDFHbV2ciPeck4PzVQArvs_swCtX0LpCYAj7H3tNwnQnoF0PqE_8EfuGA4BrJr2FchzKpG1m6QXQHE3ZzF2NUs0LTfkeJiF13PhegzKvQqJmkQ9azMoiqc/s1600/Deer+down+the+street-Random+Thoughts_IMG_0066.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_eyCmavfNvasHtznPyfGPGpDFHbV2ciPeck4PzVQArvs_swCtX0LpCYAj7H3tNwnQnoF0PqE_8EfuGA4BrJr2FchzKpG1m6QXQHE3ZzF2NUs0LTfkeJiF13PhegzKvQqJmkQ9azMoiqc/s200/Deer+down+the+street-Random+Thoughts_IMG_0066.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saw this little guy down the street<br />
We were delighted to see him<br />
No imagination required</td></tr>
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<b>Hallucinations vs imagination</b> How do we distinguish between seeing faces and animals in the cloud shapes and hallucinating that we are Seeing Faces in clouds, carpets and patterns when dopamine levels are elevated? "<i>Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." "Will you, won't you, will you, won't you, will you join the dance?"</i> And if not the dance, will you walk or march with me? <br />
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<b>Walking and arm swing</b> - did you know that it takes more energy to walk with your arms still than to swing them? Arm swing helps to counterbalance the body - keeping your hips from <i>twisting</i> too much. It has been learned that if you walk with the leading leg and the arm swing on the same side of the body (think Pacer in horse racing) it actually requires 25% more energy than a normal walk with leading leg and opposing arm swing. So where is it in the brain? As evidenced by DBS surgery and possibly PD levodopa treatment, upper arm locomotor synergies are influenced by the basal ganglia. <br />
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Steve has been taking a different form of <b>Creatine</b> for the last few weeks and has regained a small amount of arm swing on <i>that</i> PD side. Although we switch brands of supplements from time to time, we're going to be sticking with <b>CreaSol</b>, a flavored powder which is mixed with warm water. It is the micronized form of creatine monohydrate which is also available at about 1/2 the price, although a bit tricker to dissolve.<br />
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Ayruvedic medicine promotes <b>walking as an activity</b> which will bring the various energies of the body into balance. Walking is low impact and considered to be a healthy activity for all body types. We're glad to report that Steve has started taking walks again. This means that he has been reporting back on the garage sales and who is setting up a wedding tent in the back yard. Walking can be very valuable.<br />
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We know that the <b>rhythm of the dance</b> apparently helps people with PD move in ways their condition suggests they can no longer move. How do You walk to music? We know that music is an anxiotic -an anti-anxiety aid. We know that music can actually have analgesic properties. It can decrease heart rate, respiration rate, and blood pressure. Music has been used for therapy since early times. Rhythm is just one aspect which seems to be very helpful in PD. If you don't want to get out of that chair, listen to the music.<br />
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So what about <b>melatonin</b>, the nighttime hormone produced by the pineal gland? Is it just another push-me-pull-you of PD? Exposure to sunlight suppresses melatonin production. Melatonin release then inhibits the release of dopamine in specific areas of the central nervous system (hypothalamus, hippocampus, medulla-pons, and retina). It is possible that this in turn plays a role in the causation of PD since inhibition of dopamine will have consequences on bodily movements. Although the antioxidant effect of melatonin may offer neuroprotection for mitochondrial activity, the inhibition of dopamine release is not a goal of PwPs. <br />
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<b>CoQ10 and Parkinson's disease</b>. OK, CoQ10 trials have come to a halt. Co-enzyme Quercetin 10 does not slow the progression of PD. Steve found that it definitely made him feel better in the early years of his PD. He found that it did help with tremor easing. Did he think it was slowing progression? He felt that it was helping with symptomatic relief. And that in itself is significant. We need larger studies in the improvement of PD visual function because another small study had positive results. Moreover, two studies for cardiac patients had positive results. In one CFS study, patients who took CoQ10 demonstrated a serious reduction in congestive heart failure symptoms and had required fewer hospitalizations. One heart transplant patient study had only minimally positive results while a shorter, smaller study had some positive results. <br />
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<tr><td class="tr-caption" style="text-align: center;">Steve and Rita on a walk in the park</td></tr>
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<b>Rhinorrhea</b> or Rhinitis is increased in PD. Who would think that a runny nose would be symptomatic of PD but according to Dr Joseph H Friedman, that is exactly the case. They have not determined whether it is related to olfactory deficits as well but it is not only a symptoms but it can be a precursor symptom as well. I've noticed the increased need for throat clearing due to post nasal drip with Steve. Once he's done that, it is much easier to understand him when he speaks. <a href="http://www.riapda.org/cmsb/articlesDetail.php?Rhinorrhea-in-Parkinson-s-disease-by-Joseph-H.-Friedman-MD-11" id="gevy" title="We need more of this kind of thinking">Rhinorrhea in Parkinson's disease by Dr Joseph H Friedman, MD</a> Rhinorrhea: <a href="http://www.experts.scival.com/umichigan/pubDetail.asp?t=pm&id=20842685&n=Nicolaas+Bohnen&u_id=1607" id="ek1n" title="A small study from the University of Michigan - published in 2011">a common nondopaminergic feature of Parkinson's disease</a>. <br />
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<b>Seborrhoeic dermatitis</b> - autonomic symptom - immunodeficiency - aloe vera or coconut oil - crude diluted honey - avocado extracts and supplements such as lactobacillus, B vitamins: B7 (biotin), B6, B2, B3. Alternative treatment= apply milk of magnesia to face or scalp when showering (rinse off at end of shower) <br />
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<b>Autonomic Neuropathy</b> a form of peripheral neuropathy, is found in symptoms which occur when there is damage to the nerves which regulate blood pressure, heart rate, bowel and bladder emptying, digestion and impotence. So that helps to explain the Pd symptoms: constipation, urinary incontinence, urinary hesitancy, incomplete emptying of bladder and yes, RLS. It also helps to explain postural instability or dizziness upon standing or sitting up, hyperhidrosis (excessive sweating, difficulty swallowing.<br />
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In Parkinson's disease concerns are very real. Falling, weight loss leading to malnutrition, dehydration and electrolyte imbalance, choking. although rarely mentioned there is also a risk of kidney failure caused by urine back up accompanying incomplete emptying of bladder. <br />
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<tr><td class="tr-caption" style="text-align: center;">Steve loves marigolds</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Which leads us to the symptoms of <b>kidney problems</b> which can lead to kidney failure if untreated. Headaches, aches and pains. Feeling tired all of the time. Loss of appetite. Bone and joint issues, itching and restless leg feeling. One problem is that a lower backache can be the only symptom and is associated more with stiffening muscles that with a kidney infection. It might be ignored. Anemia can develop because the red blood cell count is low. Low red blood cell count = low oxygen levels for cells. Insomnia/daytime sleepiness. The basic problem is that <b>UTIs</b> are common in latter stages of PD when organs begin to shut down and when catheters have become necessary. It is important for caregivers to be on the lookout for the signs.<br />
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<b>Exercise aids</b> - we've talked about the portable assisted pedaler in a previous post. We'll add the findings of other PD users as the reports come in. If you can find a therapy center or club which has <b><i>forced exercise</i></b> on its program, join it! <br />
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<b>Voice Exercises</b> - in the comfort of your own home, you can take Mary Spremulli's <i>Voice Aerobics </i>class on DVD. She also as Songbirds in an audio CD and offers The Breather to aid in breathing in and exhaling. Mary is a medical speech-language pathologist who has many years of experience in her field. <a href="http://www.voiceaerobicsdvd.com/">Visit her website </a>to learn more, you won't regret it.<br />
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On 9-18-11 we were sent a link for a pocket sized breathing exerciser:<br />
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<a href="http://www.voiceaerobicsdvd.com/respiratory_muscle_strength_trainer.html" id="l8tg" title="You can order your Respiratory Strength Trainer from Voice Aerobics">Respiratory Muscle Strength Trainer</a>, a simple hand-held device looking very much like a large whistle. Regular use should help improve the strength of the muscles used to inhale and exhale. Most everyone remembers having a whistle as a child. This devise might appeal to the aging but young at heart and demonstrate important therapeutic results.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-85743043463734437562011-04-02T20:30:00.018-04:002021-02-28T13:17:56.726-05:00Early Warning Signs of Parkinson's Disease<div style="margin: 5pt 0in;"><b><span style="font-size: large;">Precursor Symptoms of PD - What's the Tipoff? And What Were Your Earliest PD Symptoms?</span></b></div><div style="margin: 5pt 0in;"><i><b>In retrospect; in hindsight; if only I'd known; I wish I'd looked for more answers; why didn't the doctor say something?</b></i> <i><b>I should have...done something more... </b></i></div><div style="margin: 5pt 0in;">If the precursor symptoms are recognized as Parkinson's disease, can early intervention at least delay the onset? </div><div style="margin: 5pt 0in;">Earliest warning symptoms of Parkinson's usually go ignored or are attributed to some other condition. There isn't a single symptom you or your loved one can have that is unique to PD, although as a group some are more unique. There are diagnostics which can rule out some many differential diagnoses even at this early date.</div><div style="margin: 5pt 0in;">The biggest impediment to addressing the developing Parkinson's disease after the <b>early warning signs</b> or <b>precursor symptoms</b> appear is that we do not recognize them for what they are. We don't even know what they are.</div><ul style="text-align: left;"><li><div style="margin: 5pt 0in;">Leg drag</div></li>
<li><div style="margin: 5pt 0in;">Lack of Arm Swing</div></li>
<li><div style="margin: 5pt 0in;">Loss of Sense of Smell - decreased sense of smell - phantom smells</div></li>
<li><div style="margin: 5pt 0in;">Changes in Handwriting </div></li>
<li><div style="margin: 5pt 0in;">Changes in Voice</div></li>
<li><div style="margin: 5pt 0in;">Change in Facial Expression</div></li>
<li><div style="margin: 5pt 0in;">Pain or achiness in the Shoulder or Neck, more common in women</div></li>
<li><div style="margin: 5pt 0in;">Depression, anxiety, stress</div></li>
<li><div style="margin: 5pt 0in;">Sleep problems - especially with especially with <a href="http://parkinsonsfocustoday.blogspot.com/2011/04/early-warning-signs-of-parkinsons.html" id="s9ep" title="Early Symptoms of Parkinson's Disease Revelaed in Dream Sleep">REM sleep or more specifically RBD sleep</a>. Sleep issues may also include "acting out" during sleep: Yelling, kicking, punching. </div><div></div></li>
<li><div style="margin: 5pt 0in;">Signs of specific Vitamin Deficiencies: Ds and Bs especially</div></li>
<li><div style="margin: 5pt 0in;">Sharp small pains - pinprick pains - or perhaps small areas of numbness</div></li>
<li><div style="margin: 5pt 0in;">An odd type of vertigo - which may actually be Orthostatic Hypotension which is known to develop years before the actual PD diagnosis </div></li>
<li><div style="margin: 5pt 0in;">Dizziness</div></li>
<li><div style="margin: 5pt 0in;"><i>Adding additional symptoms beginning 4-05-11 with THANKS to the folks at Patients Like Me</i></div></li>
<li><div style="margin: 5pt 0in;">Urinary issues such as urinary incontinence or frequency</div></li>
<li><div style="margin: 5pt 0in;">Impairment of color discrimination - may improve with levodopa</div></li>
<li><div style="margin: 5pt 0in;">Fatigue - tiring more easily at routine tasks - lack of stamina - daytime sleepiness</div></li>
<li><div style="margin: 5pt 0in;">Cramping</div></li>
<li><div style="margin: 5pt 0in;">Rhinorrhea - that's a runny nose to most of us</div></li>
<li><div style="margin: 5pt 0in;">Seborrhoeic dermatitis - an autononic symptom, an immunodeficiency - flaking is often confused with dry skin - possibly seen as dandruff</div></li>
<li><div style="margin: 5pt 0in;">numbness - usually in extremities</div></li>
<li><div style="margin: 5pt 0in;"><i>We would like to learn if people experienced any of the following as precursor - earliest - symptoms</i></div></li>
<li><div style="margin: 5pt 0in;">Sleep apnea ?</div></li>
<li><div style="margin: 5pt 0in;">Constipation</div></li>
<li><div style="margin: 5pt 0in;">RLS - restless leg syndrome?</div></li>
<li><div style="margin: 5pt 0in;">Excessive sweating - an autonomic nervous system dysfunction?</div></li>
<li><div style="margin: 5pt 0in;">Personality changes or changes in Executive functioning</div></li>
<li><div style="margin: 5pt 0in;">Hyperhydrosis or excessive sweating which can sometimes appear as Seborrhoeic dermatitis - might feel like hot flashes</div></li>
<li><div style="margin: 5pt 0in;">Erectile Dysfunction</div></li>
<li><div style="margin: 5pt 0in;">Vision issues such as difficulty focusing</div><div style="margin: 5pt 0in;">I'd also like to add: Unexplained tripping or falling which I overlooked <br /></div><div style="margin: 5pt 0in;"><br /></div></li>
</ul><div style="margin: 5pt 0in;">In an era when there is access to symptoms of every conceivable disease at our fingertips, there is little information about PD precursor symptoms on the Internet. If you do a web search, you won't find much about them. I just did that and mostly what I found were articles I'd already written. </div><div style="margin: 5pt 0in;">Think back to the months and even years before your diagnosis, what do you recall of the precursor symptoms? We're talking about those symptoms which you attributed to being tired, to stress or anxiety, to physical exertion, to anything but PD because that wasn't even a consideration. </div><div style="margin: 5pt 0in;">So you are X-rayed, MRI'd, you have endocrine tests, thyroid tests, blood tests and a few more for good measure and that's good because it makes sense with these early symptoms. But PD doesn't show up on these kinds of tests currently. And then what happens?</div><div style="margin: 5pt 0in;">The doctor rules out a condition or two and then gives you the verdict: "Well, you don't have <i>X*X?</i>." And that's it. You pay your bill, you go home, your spouse asks what the doctor said and you say, "Well I don't have <i>X*X?</i>." Many of us have been trained to accept this kind of negative diagnosis, but that's wrong. We can all do better. </div><div style="margin: 5pt 0in;">As families and patients we have a right to expect some positive action. And doctors should certainly know this. That message needs to be sent from the patient base if it isn't taught in medical schools. As patients we have a responsibility too. We have to overcome the relief that we don't have <i>X*X?</i> and the fear of what comes next and we have to ask, "What comes next?"</div><div style="margin: 5pt 0in;">The very early warning signs are now being recognized as an significant area of study but the symptom list is not ready for prime time yet. The communication from the research front will be forthcoming when the studies have been completed. The good news is that studies are now underway.</div><div style="margin: 5pt 0in;">These <b>studies represent a way in which people with PD can contribute</b>. Even if we can't improve the future for ourselves, we can use what we have learned to improve the precious future of someone else, perhaps our children or grandchildren.</div><div style="margin: 5pt 0in;">Listed at Clinical Trials.gov are three studies of especial interest:</div><div style="margin: 5pt 0in;"><ol><li><div style="margin: 5pt 0in;">Investigate neurophysiologic tests that have the potential of serving as <a href="http://clinicaltrials.gov/ct2/show/NCT00117195?term=Parkinson%27s+disease&recr=Open&rank=9" id="ra0f" title="Developing better diagnostic tools - an opportunity to contribute your experience">screening tools</a>- New Haven, CT</div></li>
<li><div style="margin: 5pt 0in;"><a href="http://clinicaltrials.gov/ct2/show/NCT00104585?term=Parkinson%27s+disease&recr=Open&rank=13" id="dpj6" title="Scientists hope this multi-center study will increase the current knowledge of PD and that the identification of the factors that cause PD will lead to better diagnosis and treatment. This is your chance to contribute to that effort.">Consortium On Risk for Early-onset Parkinson's Disease (CORE PD)</a> It is still recruiting at <a href="mailto:research@corepdstudy.org" id="ga9l" title="To email Helen Mejia-Santana or call 877-305-2438">Columbia University</a>, NY, NY and at <a href="mailto:Lucia_M_Blasucci@rush.edu" id="z1ea" title="Email Lucia M Blasucci or call her at 312-563-2900">Rush University Medical Center</a>, Chicago, IL </div></li>
<li><div style="margin: 5pt 0in;">Developing hindsight: <a href="http://clinicaltrials.gov/ct2/show/NCT00775853?term=Parkinson%27s+disease&recr=Open&rank=83" id="zufq" title="NCT00775853 is currently recruiting subjects and controls for this NIH Clinical Study in Bethesda, MD"><span style="color: #810081;">Biomarkers of Risk of Parkinson Disease</span></a> </div></li>
</ol></div><div style="margin: 5pt 0in;"><div class="header1">Another source of information is found in the notes in patient files tucked away in doctors' offices. This is the information that needs to be shared at seminars, in articles. There would be no HIPAA violation, names would not be named but the symptoms could be compiled. Yes, it is a huge undertaking but it would make a remarkably useful study.</div><div class="header1"><br />
Our best body of knowledge now comes from proactive patients who share their stories. Not all are sucess stories but they demonstrate the importance of a the current studies and the importance of a productive doctor-patient relationship. Many thanks to those enerous folks on Patients Like Me who added to the list of early warning symptoms.</div><div class="header1"><br /></div><div class="header1">It is far more important for both the medical profession and the general public to raise their awareness of early warning symptoms of neurodegenerative diseases, especially Parkinson’s disease, because treatment can begin earlier. Now that there are more treatment and therapy options, it makes sense to try to slow onset. <br />
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What we are wondering is whether the immediate treatments will lie more in Alternative Medicine in the form of Nutritional Supplements rather than in pharmacological medications. What will be the role of therapies such as <a href="http://parkinsonsfocustoday.blogspot.com/2009/05/forced-exercise-to-relieve-parkinsons.html" id="bj4:" title="If you haven't read about Jay Alberts work, begin with this post.">Forced Exercise</a>?</div><div class="header1"></div><div class="header1"><i>Previous posts on subject</i>:</div><div class="header1"><a href="http://parkinsonsfocustoday.blogspot.com/2010/03/differential-diagnoses-and-parkinsons.html" id="plmd" title="Written and posted in 2010">Differential Diagnosis and Parkinson's disease</a></div><div class="header1"><a href="http://parkinsonsfocustoday.blogspot.com/2009/03/questions-about-parkinsons-disease.html" id="u9gi" title="One school of thought about the earliest symptoms is that as dopamine and subsequently norepinephrine cells die, the limited dopamine resources are allotted to other body functions. Sense of smell, a precursor symptom, may be seen by the brain as peripheral and therefore reduced or shut down.">Questions about Parkinson's Disease</a><br />
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You might also be willing to contribute to the knowledge base by registering to participate in an NIH study: <br />
<div>Study Link for <a href="https://pdrisk.ninds.nih.gov/Welcome.aspx" id="n90." title="To read about or to register for this annonymous study, click here.">Biomarkers of Risk of Parkinson's Disease</a> at the National Institutes of Health. </div></div><div>Check our this discussion of the <a href="http://www.youtube.com/watch?v=h78x80xAMEk" id="h1r5" title="Turn up the volume for this You Tube video and enjoy this animated computer Q & A">Top Ten non-motor symptoms</a> of Parkinson's disease from Dopadoc.</div></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com27tag:blogger.com,1999:blog-8576518534043843234.post-14454105143578865552011-03-31T17:22:00.001-04:002011-04-04T10:59:40.461-04:00Cogane Clinical Trials Phase II for Parkinson's Disease<strong>The long awaited Cogane trial is recruiting</strong><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi46GsWMVqkxd3KHluxVg9vC4VpTqqIQWBVsXOnlhVJbyg6c_JAOjCHtmLz-W6Uctpu8Szm8p21bqzkptFQ3NhiyMaZGEKyBUazm073P-2HyyUjQsjZBo_WzkqpRGTuLc5cC8NCXew6Diw/s1600/PowerLinesAlongRoadBlueSkyWhiteCloudsYellowSunGlow-FaintRainbow-OK_IMG_0212.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi46GsWMVqkxd3KHluxVg9vC4VpTqqIQWBVsXOnlhVJbyg6c_JAOjCHtmLz-W6Uctpu8Szm8p21bqzkptFQ3NhiyMaZGEKyBUazm073P-2HyyUjQsjZBo_WzkqpRGTuLc5cC8NCXew6Diw/s200/PowerLinesAlongRoadBlueSkyWhiteCloudsYellowSunGlow-FaintRainbow-OK_IMG_0212.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Is there a rainbow over the PD road? </td></tr>
</tbody></table> If you are between 35 to 75 years of age and have a confirmed early-stage idiopathic Parkinson's disease within the last two years and are not receiving any PD treatment, you may be eligible for <a href="http://clinicaltrials.gov/ct2/show?term=cogane&rank=2" id="dzcf" title="Go to Clinical Trials.gov to see recruiting information for the Cogane Phase II trial">NCT01060878</a>. Women of child-bearing potential are excluded although the study is open to both genders. The other exclusionary conditions are prior neurosurgical PD procedures and history or severe psychiatric illness.<br />
<br />
The investigation into the efficacy, safety and tolerability of Cogane has now reached the phase II stage of clinical testing. This trial will be a double-blind, placebo-controlled study. We are not sure if it will be followed by an open label trial - wouldn't that be terrific if this GDNF approach is actually effective. <br />
<br />
<a href="http://clinicaltrials.gov/ct2/show?term=cogane&rank=2" id="dzcf" title="Go to Clinical Trials.gov to see recruiting information for the Cogane Phase II trial">NCT01060878</a> is sponsored by Phytopharm. The investigation of Cogane (PYM50028) in Early-stage PD is now recruiting at the following locations:<br />
<br />
<em>In the United States</em><br />
La Jolla, Sacremento and Sunnyvale, California <br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC7lyHKIDkrApzXbvCEJv50LwTIrIL2GSws3YHQ7RU8vCy0m6eR40BKpNtXtAjPuJ-i8MJwosw-ydOZ51hRI2QJLs073FgnpPunYWnryy5H4yIM5Rlzi-KeeISDHHiE7FVLPUt4tFgDkc/s1600/VividColors_IMG_8450.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC7lyHKIDkrApzXbvCEJv50LwTIrIL2GSws3YHQ7RU8vCy0m6eR40BKpNtXtAjPuJ-i8MJwosw-ydOZ51hRI2QJLs073FgnpPunYWnryy5H4yIM5Rlzi-KeeISDHHiE7FVLPUt4tFgDkc/s320/VividColors_IMG_8450.JPG" width="320" /></a>Manchester and New Haven, Connecticut</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Chicago and Sprinfield, Illinois</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">St Louis, Missouri</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Manhasset, NY</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><em>In Canada:</em></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">London, Ontario </div>Ottawa, Ontario<br />
Quebec City, Quebec<br />
<br />
<em>In the United Kingdom</em><br />
Luton, Bedfordshire<br />
Newcastle upon Tyne, Tyne and Wear<br />
<br />
<em>additional reading</em>:<br />
<div><a href="http://parkinsonsfocustoday.blogspot.com/2009/05/cogane-future-treatment-with-hope-for.html" id="ke:x" title="About Cogane, GDNF and BDNF">Cogane, a Future Treatment with Hope for a PD Cure</a></div><div class="articleTitle svTitle"><a href="http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6SYR-523JY2X-1&_user=10&_coverDate=03%2F10%2F2011&_rdoc=1&_fmt=high&_orig=gateway&_origin=gateway&_sort=d&_docanchor=&view=c&_searchStrId=1701339495&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=8d6d170db2bae6037c40834f11555b92&searchtype=a" id="gyvv" title="An abstract published 3/10/2011 - from Oslo, Norway">Cytoprotective effects of growth factors</a>: BDNF more potent than GDNF in an organotypic culture model of Parkinson's disease</div><div class="articleTitle svTitle">There is additional <a href="http://www.ncbi.nlm.nih.gov/pubmed/21240939" id="yd4o" title="Published 1-14-2011 from University of Colorado, Boulder">ongoing research</a>: The administration of BDNF and GDNF to the brain via PLGA microparticles patterned within a degradable PEG-based hydrogel: Protein distribution and the glial response</div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-85832047789742056042011-03-01T04:09:00.007-05:002011-03-07T18:38:25.728-05:00Call on Congress to Advocate for Parkinson's Disease<div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbg99iSdnjIDAGp3CCtBpzQCCG01lj5MpsY4RbypwGq-8ibMNPPiyV7c8xHViqJ2kgIQ_c36iRWXFb2WDGwZv73Le6gXNi-MFbYzssTalE9VQW0LkdiHLCrnVjY0VQXXz-h6y-og_QJKM/s1600/Updates-3-01-11.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="142" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbg99iSdnjIDAGp3CCtBpzQCCG01lj5MpsY4RbypwGq-8ibMNPPiyV7c8xHViqJ2kgIQ_c36iRWXFb2WDGwZv73Le6gXNi-MFbYzssTalE9VQW0LkdiHLCrnVjY0VQXXz-h6y-og_QJKM/s200/Updates-3-01-11.jpg" width="200" /></a></div><strong> Take a few minutes to support PD</strong></div><div></div><div>It isn't often that we have an opportunity to do something important to help the Parkinson's disease cause. We know that people want to contribute. Now there is an opportunity for you, your friends and family to add your voice in grassroots support of to <a href="http://capwiz.com/pan/issues/alert/?alertid=31500501" id="cy01" title="You can add your voice in a few key strokes. Send an email directly from the PAN webpage. The time is NOW!">Call on Congress</a>.</div><div></div><div><br />
On <strong>Wednesday, March 2, 2011</strong> a few hundred advocates will be personally meeting with Senators and Members of House of Representatives to ask that they join the Congressional Caucus on Parkinson's disease, to Co-sponsor the National Neurological Diseases Surveilance System Act and to support biomedical research as well as therapy development at the National Institutes of Health. </div><div><br />
</div><div>While Parkinson's disease may discriminate about whom to attack, PD knows no political party boundaries. <a href="http://capwiz.com/pan/issues/alert/?alertid=31500501" id="wim4" title="Fill in the form - your ZIP Code is very important - then add a few lines about your own Parkinson's story and hit SEND/">Call on Congress</a> is more than a way to add your voice to the rest of the Parkinson's disease community while approximately 250 PD advocates have personal meetings with members of Congress and their staff members to advocate for awareness of the disease and the significant issues about PD. Call on Congress lets your legislators know that there are many PD constituents out there.</div><div><br />
All it takes is a simple statement to your Congressman/woman begins with a single phone call or <a href="http://capwiz.com/pan/issues/alert/?alertid=31500501" id="ew7e" title="The letters are prepared, edit as you wish, add a few lines of your own experience or relationship to PD, fill in the brief form and SEND MESSAGE">email</a> in support of the passage of the revised National MS and Parkinnson's Disease Registries Act (HR 1362 and <a href="http://www.govtrack.us/congress/bill.xpd?bill=s111-1273" id="r7p:" title="Click the links on the page to read a summary or the full text of the bill">S 1273</a>) now known as the National Neurological Diseases Surveillance System Act of 2011-2012 <a href="http://thomas.loc.gov/cgi-bin/query/z?c112:S.425:" id="z984" title="To read the text of the revised bill - Click Here">S.425</a>. It will be introduced by <a href="http://capwiz.com/pan/issues/bills/?bill=13572016&cs_party=all&cs_status=C&cs_state=ALL" id="yngc" title="Current Co-sponsors of former S 1273 - If you see your Senator listed, please take the time to send a thank you and a reminder about S.425 through the envelope link next to his/her name. Thank you">Co-sponsor</a> Senator Mark Udall, son of the late Morris Udall. As a matter of fact, PAN has already written the statement which you can edit to personalize or send as is.</div><div></div><div><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1kw900UTbaiNV_NwQh0Z2Uem4_tQwIg9PfazsfU4_N29gXRLnKx2992xTAol1TXV8tH7adIrpzH1t6t5dwmrqqAbL3YawmmgC18ha27w5fKacGcLcpZZ2O5T8N1IbeX5yDscZDp1uElQ/s1600/Coast+to+Coast+August+2010.jpg" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="247" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1kw900UTbaiNV_NwQh0Z2Uem4_tQwIg9PfazsfU4_N29gXRLnKx2992xTAol1TXV8tH7adIrpzH1t6t5dwmrqqAbL3YawmmgC18ha27w5fKacGcLcpZZ2O5T8N1IbeX5yDscZDp1uElQ/s320/Coast+to+Coast+August+2010.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">USA coast to coast</td></tr>
</tbody></table>One purpose of the bill is establish a national data surveillance system which can track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and MS. A primary goal is to be able to collect information from many sources in order to measure the incidence and prevalence of the disease. The implications of having accurate data and geographical information open doors to problem solving.</div><div><br />
</div><div>This afternoon we "attended" the Parkinson's Action Network webcast, <i>Research Public Policy Forum.</i> where the importance of Your/Our PD stories carries great weight not only with legislators but also the public. For the last several years we have begun to see the humanizing of a disease which for so many years was seen as a stereotype. We share our patient and caregiver back-stories with each other and now it is time to share a few lines with people who have the power to represent us.<br />
<br />
Please remember to thank your legislator if you see <a href="http://www.parkinsonsaction.org/federal-initiatives/national-pd-database/support" id="bm6h" title="To see representation for HR 1362 or S 1273 follow the click her links on the PAN Congressional Support page.">your State</a> represented.<br />
<br />
<strong>Update</strong>: As you know, the National Neurological Diseases Surveilance System Act of 2011-2012 S.425.IS was introduced by Senator Udall. That does not mean it is a done deal. Continued public support is necessary. <a href="http://thomas.loc.gov/cgi-bin/bdquery/D?d112:1:./temp/~bd7Zmq:@@@X|/home/LegislativeData.php|" id="bzqw" title="You can follow any Federal bill through the Library of Congress">Follow the bill</a> so that you can send the necessary reminders to your government officials.<br />
<br />
"<em>The bill will create, for the first time, separate, permanent, and coordinated MS and Parkinson's disease national registries at the Centers for Disease Control and Prevention (CDC). The registries will rely upon existing databases including Medicare, Veterans Affairs, state registries, and other databases to determine the incidence and prevalence of MS and Parkinson's disease across America."</em></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-18877249816704297512011-02-07T15:24:00.003-05:002011-02-07T15:44:54.895-05:00It's Hard to Sleep with Parkinson's Disease<strong>More on Sleeping Problems and PD</strong><br />
<br />
Steve's sleep problem has reared its nasty head again. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9hL7NQwGX-4tJPtr412t4Kbot2w_0V8Db5U-XYGhyphenhyphenDYMy_a1TCtEn8LJxWmCWr4Z5iwZo0LLaSZ-Uti6ITQw_RuOAgiAlGTjxPRJOmgq2ETkvKuEEE9WfGS07gBZen9FfASeRfrKGW4/s1600/HarryMongoSleeping-Sweet_IMG_1554.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" h5="true" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhn9hL7NQwGX-4tJPtr412t4Kbot2w_0V8Db5U-XYGhyphenhyphenDYMy_a1TCtEn8LJxWmCWr4Z5iwZo0LLaSZ-Uti6ITQw_RuOAgiAlGTjxPRJOmgq2ETkvKuEEE9WfGS07gBZen9FfASeRfrKGW4/s200/HarryMongoSleeping-Sweet_IMG_1554.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some sleep and some can't</td></tr>
</tbody></table>As some readers know, Steve began a very low-gluten diet almost 1.5 years ago. He does not have Celiac's nor IBS but for some reason, it seemed worth a try. The result was that he found an improvement of his sleeping problems. Occasionally we will cheat or slip and a little too much gluten will find its way to his plate or glass with the resultant sleep disruption. That happened this week on a little status check.<br />
<br />
The good news is that he says that gluten-free pumpkin pie tastes like a regular pie and I will respond that it is a regular pie with slight variations. <br />
<br />
Steve did not have many sleep interruption issues prior to being diagnosed with PD, at least none that he would discuss or acknowledge. I do know that he would occasionally have very vivid dreams, some REM behavior, and some sinus breathing issues which he would ignore. In retrospect, the first two were alarms. What I do know is that he would fall asleep long before me and sleep through the night, oblivious to children or animals.<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyei_dqSyqXMXvgubgGVLndJOuDT0iLjrW3HjyZUsktRilImPD4KTGlDCNDSfH8IBREKbK4r7NPmN0tCBIJ2V4Se1E-qDdlcevk4Uty_CPiLi7p8kv6-KTlg3VxcsjMQuME8lDtNKKOnU/s1600/DrinkingatELakeRetentionPond_IMG_0336.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" h5="true" height="130" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyei_dqSyqXMXvgubgGVLndJOuDT0iLjrW3HjyZUsktRilImPD4KTGlDCNDSfH8IBREKbK4r7NPmN0tCBIJ2V4Se1E-qDdlcevk4Uty_CPiLi7p8kv6-KTlg3VxcsjMQuME8lDtNKKOnU/s200/DrinkingatELakeRetentionPond_IMG_0336.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On a hot day, the only option</td></tr>
</tbody></table> Another thing that we saw again this winter was a slip back into dehydration. Whew! We caught it before there was a serious progression and are addressing the problem in both Steve and Harry the dog. With Harry, starting him on chicken broth will usually do it; so I'm doing that again. He also likes to take a chomp from a snow pile on his way back into the house which suggests that he might prefer really cold water in his water bowl.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU_zdyQvbomt7NFc2tUvcvT8TlMjsSoA08sMPYTStTkOu7XoNfaiIjO5GbTJVf5mgwBePg4XKZPfpPr83IdG00F1g6Uy0Uz0glT4dlnKlAkmABEzXzL6u6q3uDOVxhNY40rWmw-LWFSqw/s1600/GriffinWithLois-LooksLikeLindaButNot_scan0081.jpg" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" h5="true" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU_zdyQvbomt7NFc2tUvcvT8TlMjsSoA08sMPYTStTkOu7XoNfaiIjO5GbTJVf5mgwBePg4XKZPfpPr83IdG00F1g6Uy0Uz0glT4dlnKlAkmABEzXzL6u6q3uDOVxhNY40rWmw-LWFSqw/s200/GriffinWithLois-LooksLikeLindaButNot_scan0081.jpg" width="123" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table> This morning I was trying to recall whether any other family four-foots had suffered similar issues. And there it was the seasonal changes which can cause horses to upset their electrolyte balance by not drinking. Griffin, our daughter's appendix registered Thoroughbred-Quarter Horse had the problem one fall. It’s pretty easy to see a pinch of skin that doesn't retract very rapidly. What to do? You can lead a horse to...but you can't...We had to go the electrolyte route. Sprinkled over feed and in a tubed paste - it worked; and he started sucking up water again.<br />
<br />
That beer for the Super Bowl XLV was not a good idea; it could have upset all sleep for Steve last night. Not only was there gluten, there was alcohol which is dehydrating. He was smart enough to take a gulp or two and then set it down for the evening. I should have <a href="http://www.beerfestboots.com/blog/list_of_gluten_free_beers">read the lists</a> first - what wasn't I thinking?. The information abounds for <a href="http://www.gluten-free-for-life.com/gluten-free-alcohol.html">gluten-safe alcoholic beverages</a>. <br />
<br />
Because the sleep issues are a PD symptom, they will not vanish. Because they can be exacerbated by dopaminergic treatment, they are not going away. The most common are the levodopas (Sinemet) and ropinerole (Requip). <br />
<br />
We often forget the association between depression and sleep problems; how do you treat your depression?<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicgBVRCosRrpym3ZcXskGHf7brXkKoOk-gU-IzkIo4O0xmu7nk0OxLOMXRRuKeiZ33PJAB6p97a4b-_1VG9zkCNCpO2sKMychHsOM6MJGePTkJzv55y5b3QzaUoWDGaC0xZLnPGs2aK7Y/s1600/Steve+and+Blakey+Sleeping_IMG_2173.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" h5="true" height="136" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicgBVRCosRrpym3ZcXskGHf7brXkKoOk-gU-IzkIo4O0xmu7nk0OxLOMXRRuKeiZ33PJAB6p97a4b-_1VG9zkCNCpO2sKMychHsOM6MJGePTkJzv55y5b3QzaUoWDGaC0xZLnPGs2aK7Y/s200/Steve+and+Blakey+Sleeping_IMG_2173.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A helpful catnap</td></tr>
</tbody></table> Steve still has some prejudice against the afternoon nap, he feels he must resiste what he sees as excessive daytime sleepiness which he often feels after taking Sinemet. Nonetheless, he knows enough to take that nap.<br />
<br />
Occasionally he will take an aspirin before bedtime. As a NSAID, it can't hurt and for some reason - perhaps pain relief - it helps him fall asleep. We also time the Vitamin B complex to just before bedtime. If he will drink plenty of fluids (water) during the day, he can ease of in the evening. If not, I am more concerned about the dehydration than his sleep - heartless creature that I am. <br />
<br />
The best thing that he has done is to drink a cup of unsweetened chamomile tea with a little milk. He has found that to be sufficiently relaxing to help him go to sleep.<br />
<br />
We've read that more than 80% of PwPs have sleep disorders or sleep dysfunction ranging from insomnia, excessive daytime sleepiness, and the parasomnias which include: sleep talking and walking, REM behavior disorders, sleep terrors. We have read about sleep apnea issues which should also be considered. There are CPAP (continuous positive air pressure) machines which can help. We;ve read and tried memory foam mattresses and Steve's favorite, the heated mattress pad, which is more effective for him than a heated blanket.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2ifMGoK1KZm79nf1_eu_jq9rJgn18cewonzPXjqWq4cU_QsXCxYEZxQpa8-B61vETDDOsWiMQYDZSRhN5mTnQc-Qs-i_w09R1M9FMSXJRbyirORQV1n5qeSlzPuLGTX-2OWbBqoq_IW0/s1600/MongoStretched-BlakeySleeping-DeskChair_IMG_4557.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" h5="true" height="163" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2ifMGoK1KZm79nf1_eu_jq9rJgn18cewonzPXjqWq4cU_QsXCxYEZxQpa8-B61vETDDOsWiMQYDZSRhN5mTnQc-Qs-i_w09R1M9FMSXJRbyirORQV1n5qeSlzPuLGTX-2OWbBqoq_IW0/s200/MongoStretched-BlakeySleeping-DeskChair_IMG_4557.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh for a Cat Nap</td></tr>
</tbody></table> <br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I'm over-the-top about some things but in treatment, I prefer the less is more approach to start. I'd like him to try <a href="http://parkinsonsfocustoday.blogspot.com/2009/02/breathing-exercises-for-pd-yoga-and.html">breathing exercises</a> again to help him relax before bedtime but since he is no linger having swallowing problems, he bristles at the words exercise and sleep in the same sentence. Still, I think they might help to release the tension and frustrations of the day. I cannot stress enough the importance of <a href="http://parkinsonsfocustoday.blogspot.com/2009/02/importance-of-good-breathing-pattens.html">healthy breathing habits</a>.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We are interested in hearing from others about what works for them...even the medications that work. We are also interested in hearing about things that worked for awhile even if they stopped working.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">additional reading:</div><a href="http://emedicine.medscape.com/article/1151267-overview">A must read</a> by Dr Robert A Hauser etalMagshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com6tag:blogger.com,1999:blog-8576518534043843234.post-34207646628584501002011-01-31T00:50:00.012-05:002011-09-27T15:32:24.068-04:00Parkinson's Updates, Odds, Ends, Beginnings<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5m3vhPKIoW0t7rfqYndCuA850iPLUJOPmVky0vc56QnNxNfZcvrz93V52iFrPsJ14-G2xsF_YOzT81oSUl2x3dyBQ5kqAJkTQhHlYFYMDEMz82AHuzR57h_rBjFy0AP2pzV1eZpkyiLM/s1600/ParkinsonsNewsUpdatesBanner_3.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5m3vhPKIoW0t7rfqYndCuA850iPLUJOPmVky0vc56QnNxNfZcvrz93V52iFrPsJ14-G2xsF_YOzT81oSUl2x3dyBQ5kqAJkTQhHlYFYMDEMz82AHuzR57h_rBjFy0AP2pzV1eZpkyiLM/s200/ParkinsonsNewsUpdatesBanner_3.jpg" width="200" /></a></div><strong>PD Community Info Including Neupro Updates</strong><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">If you missed the <strong>PD Expert Briefing on</strong> <strong>Physical Therapy and Parkinson's</strong>, What You Need to Know, you may have a <a href="http://event.netbriefings.com/event/pdeb/Live/ptherapy/register.html">second chance to watch</a>, listen and to ask questions. Heather J Cianci, PT, Geriatric Clinical specialist, MS, trained in Lee Silverman Voice Therapy will be presenting the program again following a technical glitch.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div>We did attend the first broadcast - minus the slides - and although there wasn't a lot that we haven't written about on this blog, we still learned a few things. <a href="http://event.netbriefings.com/event/pdeb/Live/ptherapy/register.html">Parkinson's Disease Foundation</a> (PDF) has announced that the rebroadcast will take place on Tuesday, February 8, 2011 at 1:00 EST<br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBzTcQPaN-HdDjeIfX4r68BK7U1n5gK4xSSRkwbeqSnS3Nw7HTVm1jmMZgKzsqzDTEcrI5nTK2a0GHwWLvTIdbz9M3r3qm_hs5M-HmXycFDJTgE3135Lp7BmjiDmF2Z_mPdTxZU3aRp_k/s1600/LookingDownAtClouds-Earth_IMG_2743.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="178" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBzTcQPaN-HdDjeIfX4r68BK7U1n5gK4xSSRkwbeqSnS3Nw7HTVm1jmMZgKzsqzDTEcrI5nTK2a0GHwWLvTIdbz9M3r3qm_hs5M-HmXycFDJTgE3135Lp7BmjiDmF2Z_mPdTxZU3aRp_k/s200/LookingDownAtClouds-Earth_IMG_2743.JPG" width="200" /></a></div>We have questions about the use of <a href="http://parkinsonsfocustoday.blogspot.com/2009/05/ldn-parkinsons-disease-treatment-or.html"><strong>Low Dose Naltrexone</strong></a><strong> (LDN)</strong> by people with Parkinson's and are hoping that people who who have or are currently using LDN will provide some feedback about the experiences. There is an <a href="http://www.ldndatabase.com/">LDN Worldwide DataBase</a> that would also like to have your input. There is quite a bit of information submitted by Multiple Sclerosis (MS) patients, but very little on PD. Just select Parkinson's from the left hand buttons. We have also posted links in the LDN articles.<br />
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Currently there is a study funded by a grant from the Michael J Fox Foundation, <a href="http://clinicaltrials.gov/show/NCT01052831" id="l3oa" title="If you are in the Philadelphia or surrounding area, please consider this LDN and PD trial if you meet the eligibility criteria">NCT01052831</a> Dr David Weintraub of the University of Pennsylvania in Philadelphia is studying the safety and use of LDN for impulse control disorders in PD. This study is still enrolling and Dr Weintraub reports that there is some limited travel money available.<br />
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Because LDN already has FDA approval for one use, it is not economically feasible for a pharmaceutical company to fund one for the use of LDN and Parkinson's disease. For this reason much of the information is going to be anecdotal. That is why adding honest information at a website or database is important. To add a comment at this website, there is always the option to remain anonymous.<br />
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We’ve also read the responses to LDN discussion at <a href="http://www.patientslikeme.com/home" id="hl-v" title="If you are not a member, you should be. Join the new improved PLM as a patient or caregiver. You'll find some very helpful ways of charting progression, medications, therapies and supplements">Patients Like Me</a> and we are encouraged enough to make this a priority for the next neurology appointment.<br />
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We just came across LDN Science and think you might want to check this site for <a href="http://www.ldnscience.org/" id="f-0v" title="You can submit your questions about LDN at this site">LDN information</a>. </div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfX6Brloi0bQe52TGYI2mTw3frcuWS_URKdkF6AywP4weppPKWOxSeark_dZu8glclLZKAikizy3_sClyLurc19NK87rLy0Rx_9v-sP8WRf2F6jxn6WGGzPI1V4zdS2tjI4Js2cBA2EU/s1600/1-3arc_IMG_8451.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="198" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfX6Brloi0bQe52TGYI2mTw3frcuWS_URKdkF6AywP4weppPKWOxSeark_dZu8glclLZKAikizy3_sClyLurc19NK87rLy0Rx_9v-sP8WRf2F6jxn6WGGzPI1V4zdS2tjI4Js2cBA2EU/s200/1-3arc_IMG_8451.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There is hope for getting Neupro now</td></tr>
</tbody></table>I'm sorry for the delay update about the <strong>Neupro (rotigotine) Transdermal Patch</strong>. I am pleased to report that although there is no program called "compassionate use" for people who were already using the patch prior to the withdrawal from the market and who have not been able to locate suppliers in other countries, <strong>there is an opportunity for people who have been on the patch and potential new users to receive it through the Named Patient Program, clinical trial</strong>.<br />
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We are providing a link to <a href="http://clinicaltrials.gov/ct2/show/study/NCT01095484?term=NCT01095484&rank=1&show_locs=Y#locn%20">NCT0195484</a> which is a Named Patient Program with Rotigotine Transdermal System by invitation only study. The locations for the study are in Alabama, Arizona, California, Washington DC, Florida, Georgia, Hawaii, Illinois, Michigan, New Jersey, New York, North Carolina, Oregon, Texas and Washington. <br />
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We now have the contact email address and phone numbers so that your doctor can contact UCB to be sent the request for study enrollment form. The form would then be completed and mailed or faxed to UCB for consideration. A patient must be under a doctor's care for consideration. I suggest speaking with your prescribing doctor. We will be provide you with all of the contact info (email, phone, fax) at UCB by email if needed. Just click the <a href="mailto:ParkinsonsFocusToday@gmail.com">email link</a>.<br />
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OMG! We just found <a href="http://clinicaltrials.gov/ct2/show/study/NCT00086073?term=parkinson%27s+disease&recr=Open&state1=NA%3AUS%3ANV&state2=NA%3AUS%3AOH&rank=4&show_locs=Y#locn"><strong>another Neupro Clinical Trial for PwPs</strong></a> in the USA who wanted to start the Neupro (rotigotine) Transdermal Patch only to find that it had been withdrawn from the market. There are strict inclusion and exclusion criteria but if the patient meets these, there is a possibility that you will be provided with the real patch. We don't know if there is an open label trial at the end or not but we will try to learn more. The trial is <a href="http://clinicaltrials.gov/ct2/show/study/NCT00086073?term=parkinson%27s+disease&recr=Open&state1=NA%3AUS%3ANV&state2=NA%3AUS%3AOH&rank=4&show_locs=Y#locn">NCT00522379</a> and is of course sponsored by UCB, Inc. Check it out if you or a family member might benefit from this<strong> Neupro clinical trial</strong>.<br />
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Time may be running out to contribute to the funding supporting the making of <em><a href="http://ridewithlarrymovie.com/"><strong>Ride with Larry</strong></a></em><strong>,</strong> a documentary about the cross-state ride of a retired police captain in South Dakota who bikes to work every day despite or perhaps because he has had Parkinson’s disease for about 20 years. Although they've made their goal, they can still use your help. You can see a trailer of the documentary and donate at the site below.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdcYKNGGMfuBqLNBY_Gt-o25XnJYoqmMg_foH4kkbf7aO7hg-Dh3brBDHIGdJroDd5NrjlJ7-R9pGSCdmC2NCCfeWAMctoi46xyjyjgJXjuLuWv9XVc-Zmjnb5bDQlBTOn3ZU-eEIBxuk/s1600/DEB+Laughing_IMG_2933.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdcYKNGGMfuBqLNBY_Gt-o25XnJYoqmMg_foH4kkbf7aO7hg-Dh3brBDHIGdJroDd5NrjlJ7-R9pGSCdmC2NCCfeWAMctoi46xyjyjgJXjuLuWv9XVc-Zmjnb5bDQlBTOn3ZU-eEIBxuk/s200/DEB+Laughing_IMG_2933.JPG" width="156" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laughter is good medicine</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Paypal donations for the documentary can still be made at the <a href="http://www.documentary.org/community/IDA-resources/fiscal_sponsorship_donate?film_id=3616%20">documentary.org website</a>. Just click the Make a Donation box. This is a 501(c)(3) organization. </div><br />
People often ask <strong>what is the best medicine for Parkinson's disease</strong> and I must say that there is no best answer, what is best is what works to relieve your symptoms and will allow you to have the best quality of life possible. For most people, one medication, one treatment is not going to be enough. We still encourage everyone explore dietary adjustments; nutritional supplements of good quality; physical (exercise), speech, massage, occupational, music and dance therapy. Never forget the power of true laughter to feel better.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-52485497233074770412011-01-11T21:06:00.005-05:002011-11-30T14:48:30.839-05:00The Elephant in the PD Lab<div style="text-align: justify;"><b>We need a better roadmap for Parkinson's Disease</b></div><div style="text-align: left;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYUQ7hONZDHzbkl5P2P2nmoxm7M7g3Eg5tpf9d6lXmAFNPtRmB2lZbdChcHTl5yw9J_Kak6Ht2G6WkQfF4gdq_Epne1lsSgfewA4IRc37hghIrsWu_DLX4bvf3c15xCf1tmY7zwoaLdI/s1600/Mt+Si++with+small+cloud_IMG_2559.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYUQ7hONZDHzbkl5P2P2nmoxm7M7g3Eg5tpf9d6lXmAFNPtRmB2lZbdChcHTl5yw9J_Kak6Ht2G6WkQfF4gdq_Epne1lsSgfewA4IRc37hghIrsWu_DLX4bvf3c15xCf1tmY7zwoaLdI/s200/Mt+Si++with+small+cloud_IMG_2559.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The PD summit has yet to be conquered</td></tr>
</tbody></table>People with Parkinson's can feel overwhelmed by the search for the most effective treatments and therapies. There are so many information bytes out there. You read all day, maybe purchase some full scientific articles only to find you don't actually understand enough or you see that the focus is so small that only scientists can analyze it. Without a photographic memory to categorize input, without huge resources how do you find your direction through the maze? </div><div style="text-align: left;"></div><div style="text-align: left;"><br />
You wonder if you are the only one missing the keys? How do you take this mass of information and reduce it, refine it to create a map to actually get to a treatment which will not only stop progression but reverse it?</div><div style="text-align: left;"></div><div style="text-align: left;"><br />
We have Centers of Excellence for research and treatment. The <a href="http://www.ninds.nih.gov/research/parkinsonsweb/Udall%20Act.htm" id="hu8l" title="You can read the overview of the Act">Morris K Udall Parkinson's Disease Research Act of 1997</a> was established in part "to provide for the expansion and coordination of research regarding Parkinson's disease, and to improve care and assistance for afflicted individuals and their family caregivers." But much of the research being done for PD and other conditions does not fall under that umbrella.</div><div style="text-align: left;"></div><div style="text-align: left;"><br />
We have <a href="http://www.guidelines.gov/content.aspx?id=9628&search=Language+Therapy" id="c36n" title="Nice idea but very governmental">Clinical Guidelines</a> for diagnosis and management of PD - primary and secondary care at the National Guidelines Clearinghouse.gov. The concept is both reassuring and frightening because it has an inherent structure which can slow progress of care but may not allow for slowing the progression of the disease without a readjustment period.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmE5Mk1Dd2V7KnQE1HAMd2JC546YvSHR2ZGpxTsbqgp04wCs6Ds7SxMaz6RLM6WTJJD47KkEVIgY0wGQQRaFWXQFPFrO4Dwgu5q1NlYhYjN6MgnK8_lu7J0oEAo-RNncnfCQF-gTcGpbU/s1600/HarryRita+from+the+rear+at+EuclidCreek_IMG_2465.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="196" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmE5Mk1Dd2V7KnQE1HAMd2JC546YvSHR2ZGpxTsbqgp04wCs6Ds7SxMaz6RLM6WTJJD47KkEVIgY0wGQQRaFWXQFPFrO4Dwgu5q1NlYhYjN6MgnK8_lu7J0oEAo-RNncnfCQF-gTcGpbU/s200/HarryRita+from+the+rear+at+EuclidCreek_IMG_2465.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Searching for....</td></tr>
</tbody></table>Every day we search through abstracts about Parkinson's related global research. Sometimes it seems that the directions are so similar but we know that some replication is necessary. Other times we see dead ends - also necessary because they may be avenues for other medical conditions. <br />
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We worry that laboratory focus will be lost in the fascination for the details. Perhaps we don't comprehend because we are not scientists but as people with hope and confidence. Perhaps it is the frustration level and the fears that keep us from understanding. Or we don't see an organization of information, a compilation of past and present knowledge, because it just doesn't exist.</div><div style="text-align: left;"></div><div class="gmail_quote" style="text-align: left;"><br />
Previously we have discussed the importance of recognizing and treating the precursor symptoms, of identifying biomarkers in order to delay onset, to implement preventative therapy. We've talked about proactive patients being good "teachers" for doctors because the patient has the motivation to search for more therapeutic information about his/her condition. While some patients rely totally upon the medical professional, these days many more realize that they must integrate the common experiences of others in order to find effective supplemental treatments. And still others step completely outside the box on the promise of a cure.</div><div class="gmail_quote" style="text-align: left;"></div><div class="gmail_quote" style="text-align: left;"><br />
The beauty of patient experience is that it can open eyes to possibilities and potential as doctors begin to treat patients and not diseases. This is one reason that we go to every medical appointment with printed material even if it is a revised medication and supplemental list which explaines why, when, how each treatment is taken. Next we will add to a second list which explains changes in physical, cognitive and emotional condition. Many doctors do seem to hear better with their eyes...if they are going to take the time to listen at all.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaBqg0xBE1IkksFREKf_SvY-Yrx9NtsS87I2BdqxSYdJ6ZimFRr0OX-WDthP3vN_w79e_CR58h8Kp2kH_bznF8bB8UHv2A_TnjiZqMAhF0vAY9G4QMvAprEa93ulJvu4k1T5teWnPHoXE/s1600/ElephantFramed.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="155" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaBqg0xBE1IkksFREKf_SvY-Yrx9NtsS87I2BdqxSYdJ6ZimFRr0OX-WDthP3vN_w79e_CR58h8Kp2kH_bznF8bB8UHv2A_TnjiZqMAhF0vAY9G4QMvAprEa93ulJvu4k1T5teWnPHoXE/s200/ElephantFramed.jpg" width="200" /></a></div>Our perception of the Parkinson's knowledge base seems at times much like the assorted parts and pieces the blind men explore when surrounding the elephant while trying to describe it. Of course we need a complete description of an elephant, not an abstract simile nor an elephant by committee. That is where <a href="http://www.wired.com/magazine/2010/06/ff_sergeys_search/" id="kgdc" title="The best articles you will find on Sergey Brin - read all of it to fully appreciate it">Sergey Brin of the Google team</a> found himself when his genetic testing disclosed the same LRRK2 mutation exhibited by his mother, a PwP. <a href="http://too.blogspot.com/" id="ow7s" title="A link to TOO, Sergey Brin's brief blog">Mr Brin</a> has worked himself to a position where he has acccess to the resources to do something. He has means create the protocols to organize the data to see the patterns of the elephant. To bring, eventually, sentient life to the elephant.</div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-43810577250300247602010-12-17T18:42:00.002-05:002013-11-15T20:35:29.534-05:00It's Snowing All Over My Parkinson's <br />
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<tr><td style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFQ6PNT4baAwdjKTQeX5zmnJ13BzK_wL52RjwKbmH7Oncw5MjWfanqO-oSb8n-IXYw6piQOjk6nGiyZ19tfdw_cVtIg_y9DdU0o3nGk-n1SgRdg2Jh6dwbO0SqLxJqRIBLGDJa9X_5AME/s1600/BirdHouseSnowCover-2009_IMG_3282.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFQ6PNT4baAwdjKTQeX5zmnJ13BzK_wL52RjwKbmH7Oncw5MjWfanqO-oSb8n-IXYw6piQOjk6nGiyZ19tfdw_cVtIg_y9DdU0o3nGk-n1SgRdg2Jh6dwbO0SqLxJqRIBLGDJa9X_5AME/s200/BirdHouseSnowCover-2009_IMG_3282.JPG" width="116" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb597CiTw3U3TF8o53NckGMhDjcOStlL-br4PsuKGdUlJDVw2n1TnFup3d48FejRC29ax1f-jZD7GBJwHvjaDF_0Jcea64_j4oDWKaVutLMjrgGGiurS-uwE-Q8oZbCPfu5yxmit8CpkI/s1600/BirdHouseSnowCover-2009_IMG_3282.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=widgetsamazon-20&l=btl&camp=213689&creative=392969&o=1&a=" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0px; padding-bottom: 0px !important; padding-left: 0px !important; padding-right: 0px !important; padding-top: 0px !important;" width="1" /></a></td></tr>
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Snow on birdhouse</div>
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<b>WINTER DRIVING and Parkinson's disease</b> <br />
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Before I got Parkinson’s I enjoyed winter, even a heavy snow storm. I often spent a lot of time working outside in winter months and my wife marveled at the way I could handle the heat of the summer as well as the bluster of winter. </div>
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Before PD, I was fascinated by the way the normal functions of society broke down. When I was a kid there was a heavy blizzard in the early 1950s with so much snow that. trucks couldn’t deliver to stores.The streets were plowed by the National Guard. Grocery stores couldn’t open. My mother and I walked about a mile up to the Main St and bought milk and eggs and butter.from some soldiers. Cars could not get through. My father didn’t get home from work until the next day. It was the deepest snow I’ve ever seen and that was over 50 years ago.</div>
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<tr><td class="tr-caption" style="text-align: center;">What the snow feels like with PD</td></tr>
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My wife remembers that a bit farther north, milk trucks had to be pulled by horses for a few days. She and her friends actually dug a serious tunnel under the snow. The snow was way over her head even where it hadn’t drifted. She also loved those days when ice covered everything. Trees sparkled and yards were fairylands. For children, those days are magic. <br />
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About 25 years ago, I was often on call to deal with heating problems for the properties administered by the non-profit which I helped to found. I was out there on the road when few other vehicles were. </div>
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<tr><td class="tr-caption" style="text-align: center;">Our dog walk area in Winter</td></tr>
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My wife still talks about the way I handled the car in a snow storm on a Christmas night returning home to Cleveland from Dayton. Most of the highways had been salted and although slushy were passable. She remembers the huge pink Caddy directly ahead of us at the crest of a hill, unexpectedly hitting unsalted ice and then sliding down sideways down the hill. The median strip looked like a demolition derby, 30 or more cars facing every direction. I had to steer from the icy road to the shoulder next to the guard rail protecting us from going over the side of the hill and then down the shoulder. Piece of cake for me. She says we’d still be in the median if she had been driving. </div>
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I hardly drive at all these days. The last time I drove in snow I had to get towed out of snow drifts at a shopping center near our house. I know my reaction times are a little slower but I can backseat drive with the best of them. <br />
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<tr><td class="tr-caption" style="text-align: center;">Sunset, trees and snow</td></tr>
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Now bad winter storms give me anxiety and make me worry more about climate change, which many say is still just a theory and not a scientific fact. We’ll see about that.</div>
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Winter without climate change is bad enough, PwP worry about winter the way I do because we worry about anything that is change. My arm is stiffer and my hands shake Nothing helps very much except Sinemet and exercise and sometimes CoQ10 and relaxing. Those magic days become nightmares...and then Rita comes inside when I call her and I am rewarded with a smile and a nudge for a dog treat.<br />
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Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com1tag:blogger.com,1999:blog-8576518534043843234.post-83761050351627900202010-12-07T18:51:00.002-05:002014-08-21T18:04:07.050-04:00Isolation and Depression and Parkinson's Disease<b>Another Try as A Year Goes Bye</b><br />
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It’s been about a year since my bout with dehydration. I managed to get through that horror with lots of prodding and insight from my wife/caregiver. <br />
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The Great Recession and my Parkinson's has drastically cut our income, so I no longer get a massage every week or go to the Nautilus room at the aqua center - that originally stopped with the dehydration. Because I could barely walk down the hall, let alone attend either exercise or massage, I simply could not attend. That was true for going to the local PD support group as well. After that the financial limitations became a harsh reality. <br />
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I’ve tried to keep up with exercise using my hand weights and cardio equiment at home. There are also chair exercises which we do to stretch, relax and use a few different muscles. I have never been a well-motivated person for exercise but the social aspect of the Center seemed to help me exercise regularly. Now I have to depend upon my own motivation to get me going. <br />
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<tr><td class="tr-caption" style="text-align: center;">Harry with the brothers a few years ago</td></tr>
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You’d think that knowing it can help me live better and possibly longer would be enough but it isn’t. Sometimes I feel I have not left the second floor of my house for months - simply sitting at my computer without venturing out or seeing another human being besides my wife. The dogs have become my best buddies.next to what-ever hallucinations my brain has cooked up for me. Both dogs spend a lot of time near me...hoping for a treat but content to just be close. Blakey, the black cat, sits on my printer; while Mongo, the mama’s cat, still sleeps on my wife’s CRT. <br />
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I watch what’s happening to this country and I worry and despair. How can Congress go on vacation while millions of families have no wage earners? Politicians and even those people on the news and financial programs seem to be concerned with those who make $250000 rather than those who make $0.00. They give lip service to the rest but they have jobs, they are not on the ground floor. They don’t get it. I get the impression that they feel chronically ill people are slackers.<br />
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In the new Congress the conservatives want to cut spending when the economic situation demands that we increase it. We need to get out of Afghanistan and use the savings here. We need to leave scientists to do science instead of leaving it to ministers from bible colleges, online degrees or self-proclaimed. Could we cure PD sooner if we didn’t have one hand tied behind our backs? <br />
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<tr><td class="tr-caption" style="text-align: center;">Mongo and Blakey ready for winter </td></tr>
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<i>Note: </i><br />
<i>When I first read Steve's words, I could see how damaging both depression and isolation can be for a PwP. Even before we recognized the dehydration, Steve was already shutting down the concept of straying too far from home. No trips to Lake Erie to watch the sunset. No shopping, no trips to the park to walk the dogs together. That was the fear setting in. No matter what I suggested, the answer was, "Not today." </i> </div>
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<i>We'll get him back to the therapy center once I'm sure that he will put in 100%. You can't just go through the motions when exercising. It has to be felt throughout the body And that only happens when you are there working for yourself. In the meanwhile he is exercising at home with reminders.</i> </div>
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<i>He's making good progress just by getting the words onto the screen. And by reminding me that we are running out of dog treats. He's beginning to feel better about himself.</i> </div>
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<i>He has been helped by a few changes to his PD pill/supplement regimen.</i> </div>
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<i>Steve has now attended two monthly support group sessions and has walked with us at the park. He's getting out there again</i>.</div>
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<i>Mags</i><br />
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<i>Addendum: </i><br />
<i>Depression plays a huge part in Parkinson's disease. Obviously as a significant symptom of PD, depression can be caused by chemical imbalance in the body. But it is exacerbated by the very real saddness at the loss of losing ones body and self. Moreover, the old definition of depression being anger turned inward still applies.</i><br />
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<i>The "me" with whom a person identifies himself, begins to change so slowly at first that the loss of "me" is barely noticed and perhaps there is compensation in character - although sometimes defensive in nature. Eventually those initial changes accelerate to the point where each day begins with a profound sense of loss whether it is the difficulty one has in getting out of bed and making it to the bathroom safely or the inability to perform or even comprehend tasks that were at one time almost second nature.</i><br />
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<i>The hardest thing for related caregivers is to reassure their loved ones that they are still the same person when the visible indicators tell another story. Here's the thing, that person is still in there and it is often possible to encourage and lovingly support but usually not without outside help. In the case of depression, seek help for both parties. </i><br />
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<i>Here's one important tip: make sure that both the person with PD and the caregiver have regular outside contact. Whether it is daily phone chats with family members who live elsewhere or visits with old friends, it is imperative that both parties know that they are loved. Don't let the world become so small that it swallows you.</i></div>
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Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-75065254078859552452010-10-01T15:04:00.000-04:002010-10-01T15:04:22.714-04:00Glutamate, The Caffeine Gene, and the World Parkinson's Congress<div><strong>What are we learning about glutamate and Parkinson's disease?</strong></div><div></div><div> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">There's good news</td></tr>
</tbody></table> <div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">For years we've been asking restaurants to omit the MSG because we get funky headaches later after eating foods containing this excitotoxin. We'v been reading food labels to avoid monosodium glutamate. We were already working on an article about glutamate and the role this protein building amino acid and neurotransmitter plays in Parkinson's disease. We learned a little about the good, the bad and the ugly in the process. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We know that glutamate is a rapid, excitatory transmitter and that it can be associated to a <i>vulnerability to addiction</i>, so perhaps you could call it the smoker's nemesis. We also know that glutamate receptors are necessary for proper central nervous system functioning, for important cognitive function including memory formation and learning.</div></div><br />
<div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">This week everyone is talking about glutamate and GRIN2A because of the news from the <a href="http://www.medicalnewstoday.com/articles/202935.php" id="yxfg" title="Significant Development In Parkinson's Research Announced At World Parkinson Congress Today">World Parkinson's Congress</a> currently being held in Glasgow, Scotland.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td class="tr-caption" style="text-align: center;">The coffee cups are waiting </td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">It has been learned that GRIN2A, is the "coffee" gene which when combined with caffeine intake appears not only to be neuroprotective for PD in a certain percentage of the population but may also affect PD clinical trial results when some study participants may have the altered GRIN2A gene. This in turn raises the question of whether it can also influence medications used to treat Parkinson's disease symptoms.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Those people protected by the caffeine gene are carriers of a specific variation of GRIN2A according to information discussed at the World Parkinson's Congress. At this time the focus is on a limited population.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We already know from the long <a href="http://www.sciencemag.org/cgi/content/short/288/5471/1581a" id="ln_g" title="A quick discussion of the results of this study">Hawaii coffee study</a> that people who had regular caffeine intake were (48%-84%) less likely to develop Parkinson's disease. It would be more than interesting to know how many members of this study also had the special GRIN2A gene version. But that was then and we didn't have the same technology or gene bank.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">GRIN2A is a glutamate NMDA subunit receptor in a class of <a href="http://www.farma.ku.dk/index.php/Ionotropic-Glutamate-Receptors/2919/0/" id="ert9" title=""Binding of (S)-glutamate to iGluRs is a key step in the mechanism of rapid excitatory synaptic transmission among nerve cells within the mammalian central nervous system (CNS)."">ionotropic glutamate</a> <a href="http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/D/Diffusion.html" id="stp." title="Transport across cell membranes">gated ion channels</a>, permeable to calcium. There has already been research about Bipolar disorder, ADHD and <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2597910/" id="yi_3" title="A 2007 Study: Replication of twelve association studies for Huntington's disease residual age of onset in large Venezuelan kindreds">Huntington's disease</a> as well as <a href="http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T0G-5004R49-1&_user=10&_coverDate=07%2F05%2F2010&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1480453336&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=e1767ccffbb1069370b62b08901772b7&searchtype=a" id="bwwr" title="Not GRIN2A but GRIN1 and GRIN2B">Parkinson's disease</a> in connection to a hypoglutaminergic condition being involved in the pathogenesis. And certainly the negative role of glutamate in Parkinson's development is not unknown.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Researchers have been looking at the GRINB2 subunits for many years and their connection to PD in the forms of selective antagonists which can exacerbate levodopa-induced dyskinesia in animal models. In <a href="http://www.wikigenes.org/e/ref/e/10964492.html" id="islf" title="A nondopaminergic therapy for treatment of dyskinesia and other PD side effects">other animal studies</a> it was discovered that loss of striatal dopamine led to an increased stimulation of NR2B aka GRIN2B which contains NMDA receptors.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Basically glutamate becomes a link in the nitric oxide chain. Under certain conditions glutamate can break through the outer cell membrane via the NMDA (n-methyl-d-asparatate) receptors located on the neurons. This creates a <a href="http://www.springerlink.com/content/rh4ekv48yy3yq7y4/" id="k05j" title=""it is likely that sequence variants in IGR genes may have profound functional roles in neuronal activation and survival mechanisms"">breach through which calcium can enter the cell</a>. We already know that calcium is implicated in the death of dopamine neurons. If this chain can be interrupted...</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">To read more about the 2010 World Parkinson's Congress and to see folksy photos, check out <i><a href="http://talkparkinsons.blogspot.com/" id="g9ax" title="Hoping for more posting since these are just the teasers">Talk Parkinson's</a></i>. </div></div><div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><em>Additional reading</em>:</div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Gene reference: <a href="http://refgene.com/gene/24409" id="hlbs" title="Index of Genes and Antibodies">GRIN2A</a> </div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://www.tweelingenregister.org/index_uk.html?www.tweelingenregister.org/english/nieuws.html" id="evr8" title="Includes smoking and glutamate">Netherlands twin studies</a> </div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://www.tocris.com/pharmacologicalBrowser.php?ItemId=4919" id="qt6y" title="Agonists, antagonists etal">NMDA Receptors</a></div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/19243446" id="tn:x" title="A receptor gene involved in neuronal plasticity and the implications for spatial memory">Primate home range and GRIN2A</a></div></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com4tag:blogger.com,1999:blog-8576518534043843234.post-57907784912687017202010-09-16T18:01:00.000-04:002010-09-16T18:01:26.489-04:00Following the Latest Stem Cell Debate in D.C.<strong>News from Parkinson's Action Network (PAN) 9-16-10</strong><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8G1ZrNnZwzepXPgG4frwAVXQHSAcO0RTeKVhvZIajHcdNnMyti3YITpv7Q8UCR_dfsTRr9xWe4OuWgG_gG2Rl_QyEEmqtAQ33LmQtLI09AkrKkxPfTVnYP-PFSVhmPtT-eE30vimXmxg/s1600/SteveReadingNYTimes-closeup_IMG_1671.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="163" qx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8G1ZrNnZwzepXPgG4frwAVXQHSAcO0RTeKVhvZIajHcdNnMyti3YITpv7Q8UCR_dfsTRr9xWe4OuWgG_gG2Rl_QyEEmqtAQ33LmQtLI09AkrKkxPfTVnYP-PFSVhmPtT-eE30vimXmxg/s200/SteveReadingNYTimes-closeup_IMG_1671.JPG" width="200" /></a></div>A few PD-related news updates<br />
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If you haven't read the 9/16/10 Parkinson's Action Network letter for the Senate Hearings on human embryonic stem cell research, here is a <a href="http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=30fc79de-947c-4cb8-bb02-41022a9d4cae">direct link to the hearings</a> convened by Senator Tom Harkin.<br />
What you will see is a video of the hearings convened to discuss the science not the legal entanglements or the preliminary injunction.<br />
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You can <a href="http://www.parkinsonsaction.org/">go to PAN</a> to see the status of HR 1362 which is the National MS and Parkinson's Disease Registries Act. From the same page you will find the link to contact your legistlators: Help Make Stem Cell Research Legislation a Priority this Fall. It is not too late to contact your Members of Congress to express your concern.<br />
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If you missed some of the Podcasts offered through the <a href="http://www.michaeljfox.org/index.cfm">Michael J Fox Foundation</a>, it isn't too late to download them. We missed Dr Andrew Sngleton speaking on <em>What Causes Parkinson'sDisease?</em> so we'll be opening this download. You can still find the Podcasts listed under News & Events.<br />
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Lonnie Ali's recent remarks at a conference sponsored by GSK for PD patients and caregivers made it clear that the support of family and loved ones is so important to getting an early diagnosis. They were married a year after his PD diagnosis but 5 years after his parkinsonian symptoms were dx'd.<br />
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What we learn is that everyone does their part. If you can't be geographically close there is always email and the phone for quick contact. Just reach out.Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com0tag:blogger.com,1999:blog-8576518534043843234.post-12389669082679963352010-08-25T15:33:00.017-04:002012-04-17T21:41:40.894-04:00Parkinson's Disease News Updates: August 2010<strong>For PD not all of the news is good but there is plenty of reason to hope</strong><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbhFrDfqR64JlEqrSueYi-U7Kc13aJzRNjRF6-hrNxR5L5cLprK3K2kgWdl_achFu-TfgfUyYLCpWqf6iwn8WyhWLA5PxKjoMrbPzljDj4H-ZaIvbs3QcTbrmV4yWcMWlqkvlD31WmMKk/s1600/ParkinsonsNewsUpdatesBanner_3.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="112" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbhFrDfqR64JlEqrSueYi-U7Kc13aJzRNjRF6-hrNxR5L5cLprK3K2kgWdl_achFu-TfgfUyYLCpWqf6iwn8WyhWLA5PxKjoMrbPzljDj4H-ZaIvbs3QcTbrmV4yWcMWlqkvlD31WmMKk/s200/ParkinsonsNewsUpdatesBanner_3.jpg" width="200" /></a>Beginning with the fun stuff. How good is it to hear that <strong>Michael J Fox</strong> will be appearing again on the small screen, accessible to us all. Sometime in or after September 2010 an episode of <em>The Good Wife</em> will air on CBS with Mr Fox as a guest star in the role of an attorney. You may not like the character he plays but we're looking forward to a performance to rival his outstanding work in Dennis Leary’s <em>Rescue Me</em> on FX.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">About <strong>Cogane</strong> - not yet. The paper work for the Phase II Clinical Trials are being by prepared for submission to the FDA by Phytopharm. Phytopharm is a company which develops products from medicinal plants. <a href="http://clinicaltrials.gov/ct2/show/NCT01060878?term=Parkinson%27s+disease&recr=Open&rank=64">Clinical Trial NCT01060878</a> is not yet recruiting in New York.</div></div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTUgQXR7iYjCJdMi8Yo3qjVNFfGeYaYVzA4vIfm3pGooxzeWePhJfuwuyD8XokjieH_Jj3Ya6LGU2z-nqQr62lpk8noIRNAc2BF2x86pC850XYXG01g9spSBrKiUN_rpqMT_n_2xsrUNE/s1600/Pipeline_ChagrinRiverRd_IMG_3172.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="140" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTUgQXR7iYjCJdMi8Yo3qjVNFfGeYaYVzA4vIfm3pGooxzeWePhJfuwuyD8XokjieH_Jj3Ya6LGU2z-nqQr62lpk8noIRNAc2BF2x86pC850XYXG01g9spSBrKiUN_rpqMT_n_2xsrUNE/s200/Pipeline_ChagrinRiverRd_IMG_3172.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How is the pipeline doing?</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">There is no point in speculating on timeline to market because we’ve seen such nasty dates as 2013. Phytopharm is looking at two medications for <strong>Amyotrophic lateral sclerosis (ALS).</strong> One is Cogane and the other is a similar drug, <strong>Myogane</strong>, which already was awarded Orphan Medicinal Product designation by the European Agency for the Evaluation of Medicinal Products (EMEA) in 2008 following its orphan drug status by the FDA. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The financials for UCB look good this year with 63,500 patients in Europe alone using the <strong>Neupro</strong> <strong>Rotigotine transdermal patch</strong>. In the North America, Canadians and Mexicans can fill their Neupro prescriptions. This is not the case for those in the USA.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="text-align: center;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4dT-17fkvFQVf3BjWzKW7yXMrgZHRDqisvzyopUGYOzVIQuQu80l468icHbfRhL8BSi0atGfylyDwYtWQ44WohXUT4HSn0B0jZXa0ynJ3td_fkj7sjlSUepGVPI8nGDVMX3og8LfF6c/s1600/ShortagesExhaustMongo_0234.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="154" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn4dT-17fkvFQVf3BjWzKW7yXMrgZHRDqisvzyopUGYOzVIQuQu80l468icHbfRhL8BSi0atGfylyDwYtWQ44WohXUT4HSn0B0jZXa0ynJ3td_fkj7sjlSUepGVPI8nGDVMX3og8LfF6c/s200/ShortagesExhaustMongo_0234.JPG" width="200" /></a></div></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mongo hates shortages</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The Federal Food and Drug Administration <a href="http://www.fda.gov/drugs/drugsafety/drugshortages/ucm050792.htm">(FDA) has an interesting web site</a> where you can check current drug shortages. The site lists the drug name and the manufacturer as well as the reason provided for the shortage. The last UCB Neupro update was on 5/05/2010. The information provided: <em>FDA has requested that UCB reformulate Neupro (rotigotine transdermal system) patches. UCB is committed to bringing Neupro to U.S. patients and has already made significant progress in the development of the new formulation. </em></div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Unfortunately there has been no actual update for PD patients <a href="http://parkinsonsfocustoday.blogspot.com/2010/04/neupro-rotigotine-transdermal-patch.html">since we last reported about the Neupro patch</a> status. At the end of July, UCB announced <a href="http://www.ncbi.nlm.nih.gov/pubmed/20683503">the study</a> results which demonstrated that Neupro had proved effective for people with moderate to severe <strong>Restless Leg Syndrome (RLS</strong>), 80% of whom often suffer from Periodic Limb Movement Disorder. The question remains, how will people with RLS and PLMD obtain the patch if they live in the US? See: our <a href="http://parkinsonsfocustoday.blogspot.com/2011/01/parkinsons-updates-odds-ends-beginnings.html" id="q92g" title="Parkinson's Updates: Odds, Ends and Beginnings">January 31, 2011 article</a> for helpful links to the Neupro study for which you might just be eligible.<br />
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There does appear to be a <a href="http://clinicaltrials.gov/ct2/show/NCT00522379?term=rotigotine&rank=6">Neupro Rotigotine Transdermal Patch clinical trial now recruiting</a>. The NIH number is NCT00522379.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">In our search for the latest information about UCB and Neupro, we came across a document which is worth a read in the light of public animosity towards big pharma. It is a UCB corporate 2009 publication: <a href="http://www.kauri.be/Uploads/Documents/doc_0820.pdf">Patients, People, Planet, Ethics</a>. <br />
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<em>Addendum April 2012: The FDA finally approved the Neupro patch and UCB anticipates a return to the US market in July, 2012</em></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihLVui_hjyLhhpG4C5vdl3JTPq33kMu4mGjaT3UVt2pa8yHBKrUPHPmnQI28T7TcTEoq3sYrpprG9vU3MHiXWG1Xg9K-LW30kG02O-_C9aEwuMvNmPVsDPnXmLlLa5ZcTsxo-2lwLUhOU/s1600/RoadClosedBridge_IMG_3593.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihLVui_hjyLhhpG4C5vdl3JTPq33kMu4mGjaT3UVt2pa8yHBKrUPHPmnQI28T7TcTEoq3sYrpprG9vU3MHiXWG1Xg9K-LW30kG02O-_C9aEwuMvNmPVsDPnXmLlLa5ZcTsxo-2lwLUhOU/s200/RoadClosedBridge_IMG_3593.JPG" width="127" /></a></td></tr>
<tr><td class="tr-caption" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;">Road Closed again?</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong>Stem Cell research</strong> has been dealt a blow by a splinter group and a Federal judge. The Obama Executive Order funding stem cell research has been hit with an injunction. You can read more of the recent story in <a href="http://scienceblogs.com/pharyngula/2010/08/francis_collins_and_the_dickey.php">this blog article</a> by PZ Myers which references the New Yorker article which many have read. The basis for the injunction is the destruction of the embryo for research and means that the federal guidelines would need to be rewritten for those researchers receiving federal funding. Private research is not affected. Federal monies can be used if another lab supplies the stem cells. The basis for the injuction is the <a href="http://en.wikipedia.org/wiki/Dickey-Wicker_Amendment">Dickey-Wicker amendment</a>.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
One of the best articles for explaining the injunction which grew from Sherley v. Sebelius can be found in the <em><a href="http://jolt.law.harvard.edu/digest/district-courts/sherley-v-sebelius">Jolt Digest</a></em> of the Harvard Journal of Law and Technology. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">For those following stem cell research news, you can read more at the <a href="http://www.camradvocacy.org/stem_cell_news.cfm">Coalition for the Advancement of Medical Research (CAMR)</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://www.nytimes.com/2010/08/25/opinion/25wed1.html?_r=2&ref=opinion" id="uh2c" title="Wrong Direction on Stem Cells">We found this Op Ed piece from the New York Times very interesting.</a><br />
For more food for discussion and debate, take a look at <a href="http://www.huffingtonpost.com/don-c-reed/overturn-dickeywicker-abo_b_693426.html">Don C Reed's article</a> "Overturn Dickey-Wicker Abomination, or Forget Stem Cell Cures" for a Generation at <em>The Huffington Post.</em></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">For those PwPs concerned about a <a href="http://www.parkinsonsaction.org/sites/default/files/Sinemet-PANLetter08-19FINAL.pdf">shortage of Sinemet (levodopa-carbidopa)</a> we refer you to a public letter written to Amy Comstock Rick CEO of the <strong>Parkinson’s Action Network</strong> (PAN) by Michael Rosenblatt, M.D. Executive Vice President and Chief Medical Officer of <strong>Merck and Co, Inc</strong>. In the letter Dr Rosenblatt explains that the shortage arose as a result of changing the supplier of the active ingredient. The shortage was not due to a product defect. Generic substitutes which may not contain the exact proportion of the components but which are also safe and effective are also available.<br />
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September 2, 2010 addendum<br />
You can <a href="http://www.nih.gov/about/director/stemcell/stay_08312010.pdf">read the 8/31/10 Motion to Stay</a> filed by the Secretary of the Dept of Health and Human Services.<br />
You can <a href="http://capwiz.com/pan/home/">add your voice for support</a> through Parkinson's Action Network and letters to your elected officials in Washington, DC. Just click on <a href="http://capwiz.com/pan/home/">Take Action</a><br />
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<strong>September 9, 2010 addendum</strong><br />
Per an item from PAN: "...within the last hour the DC Court of Appeals issued a <strong>stay of the preliminary injunction halting federal funding for human embryonic stem cell research</strong>. It would appear that the stay is only in place while the full arguments about the request for a stay of the preliminary injunction are heard in the Court of Appeals, but the important aspect is that, for at least the time period that it takes for this next phase of the case, the injunction is no longer in place against National Institutes of Health (NIH) and funding can continue."<br />
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You can read a few more details at the <a href="http://www.npr.org/blogs/health/2010/09/09/129750869/feds-win-round-in-stem-cell-funding-fight">NPR website</a><br />
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At the PAN website you will also see a link to <strong>VA information</strong>: <em>VA Publishes Final Regulation to <strong>Aid Vietnam Veterans Exposed to Agent Orange</strong></em><br />
On August 31, 2010, The Department of Veterans Affairs (VA<em>)</em> <em> published its final regulation establishing Parkinson’s disease, ischemic heart condition, and B-cell leukemias as service-connected disabilities for Vietnam veterans exposed to Agent Orange. The final regulation grants a 100% disability rating for Parkinson's disease, as well as retroactive veteran and survivor payments for qualifying veterans</em>. There will still be a 60 day review period by Congress before payments go into effect.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The University of Maryland Medical Center recently published an article about the <strong><a href="http://www.umm.edu/parkinsons/diagnosis.htm">Parkinson’s disease diagnosis procedure.</a></strong> It is brief and worth a read for anyone with questions.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">On the fun side, the <strong>American Parkinson Disease Association</strong> (APDA) recently published the <a href="http://www.apdaparkinson.org/usernd/ViewWalkAThons.asp">Walk-A-Thon schedule</a> for September and October 2010. Just scroll down the page to see 3 upcoming events.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Although the <strong>Parkinson’s Disease Foundation</strong> has not announced its next Expert Briefing or on-line educational events schedule, you can still <a href="http://www.pdf.org/en/online_education_past">access past seminars</a>. The information remains both timely and helpful covering a broad range of information.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">For many people with Parkinson’s, when the “off” times become too symptomatic, there is little choice but to add a COMT inhibitor to the levodopa-carbidopa mix. <strong>Stalevo</strong> is the medication of many who need to add entacapone to their l-dopa-carbidopa regimen in order to control the dyskinesia - dystonia which occurs. The FDA has now announced a safety review of a <a href="http://www.pdf.org/en/science_news/release/pr_1282325508">possible cardiac risk</a> from use of Stalevo.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnHqi0V7wRuQDdPaRXhT_6JGRme5iv78eAMbcfjX_0fylUpa-73HUzprpFVfZGRAQOuNDxPpuaL7GchkcYSZrDalgorrBGTD4fLj4nTVBAufsAZlZGql-ydaItoC5v2smfFFehESe4Xrc/s1600/ScalesOfJusticeToCropStraighten_b60d_1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="200" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnHqi0V7wRuQDdPaRXhT_6JGRme5iv78eAMbcfjX_0fylUpa-73HUzprpFVfZGRAQOuNDxPpuaL7GchkcYSZrDalgorrBGTD4fLj4nTVBAufsAZlZGql-ydaItoC5v2smfFFehESe4Xrc/s200/ScalesOfJusticeToCropStraighten_b60d_1.jpg" width="158" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A bit off balance?</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">At Steve’s last neurology appointment he tried to discuss <strong>orthostatic hypotension</strong> (OH) with the doctor. The doctor was in agreement that the symptom could be PD related, medication related or a symptom exacerbated by medication(s). I think that he is waiting for us to propose something. We’ve mentioned Northera (TM) <strong>droxidopa</strong> before. I thought it was interesting to learn that <a href="http://www.irconnect.com/chtp/pages/news_releases.html?d=199736">Chelsea Therapeutics International, Ltd</a> is now considering droxidopa for Chronic Fatigue Syndrome (CFS) as well as <strong>neurogenic orthostatic hypotension (NOH)</strong>. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Droxidopa is a synthetic precursor to norepinephrine. Dopamine is also a precursor and it is thought that the serious symptoms of PD do not appear until norepinephrine neurons begin to decline in numbers. Currently in two <a href="http://clinicaltrials.gov/ct2/show/NCT00738062">phase III clinical trials</a> for NOH in a number of conditions with primary autonomic failure as well as fibromyalgia and ADD for which it is in phase II trials. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">If you are considering a Droxidopa Clinical Trial, there are <a href="http://www.pdtrials.org/en/browse/all/view/298">several locations</a> from which to choose.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Recently there was an announcement that a study by the NeuroGenetics Research Consortium has found a there is a <a href="http://www.michaeljfox.org/newsEvents_parkinsonsInTheNews_article.cfm?ID=654">link between immune system gene variants and Parkinson’s disease</a>. This particular study led by <a href="http://www.michaeljfox.org/research_MJFFfundingPortfolio_searchableAwardedGrants_2.cfm?Search=Yes&ProgramID=&Keyword1=&Keyword2=&Country=&State=&Last_Name=payami&Institution=&Grant_Funded_Year=&search.x=0&search.y=0">Haydeh Payami</a> has been active for at least 20 years. Based upon the study results closer scrutiny will be given to “the possible role of infection, inflammation and autoimmunity in Parkinson's disease.” Other Parkinson’s specialists have long proposed the possibility of PD as a disease on inflammation. </div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Then there is the news about the search and discovery of <a href="http://www.medicalnewstoday.com/articles/198654.php">LRRK2 blockers</a> for patients with mutations of that overactive protein which appears to cause neuron death and consequently PD. Two medications were found which appear to block <strong>LRRK2</strong> and to prevent neurotransmitter death in lab rodents. Hence is a new target for treatment development.</div></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwDCw9PCF9ltOPybPPrak9quxnzpSrXDTuNTsK_HmOwDhTveNn9PtLQP-7aHWkxnaKOd793UaHoH-OJ5_HXbc9DRNXGma7tPGHOOKUsRFtiPj1a7sbrgy7wWR046cICudWpOL3Pv5jo2c/s1600/IMG_3922.JPG" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><em><img border="0" height="189" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwDCw9PCF9ltOPybPPrak9quxnzpSrXDTuNTsK_HmOwDhTveNn9PtLQP-7aHWkxnaKOd793UaHoH-OJ5_HXbc9DRNXGma7tPGHOOKUsRFtiPj1a7sbrgy7wWR046cICudWpOL3Pv5jo2c/s200/IMG_3922.JPG" width="200" /></em></a><em>On a personal note</em>: Steve has been trying another herbal supplement. Huperzine A is a low level acetylcholinesterase inhibitor for improved cognitive function. It has been a few weeks and we have not seen any negative side effects although we have seen some positive effects, so we plan to order another bottle from Swanson.<br />
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We do realize that this is really an Alzheimer's disease (AD) supplement rather than a PD supplement so we are watching carefully and will probably stop for a few weeks to observe changes.<br />
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If you are interested in <a href="http://clinicaltrials.gov/ct2/results?term=Parkinson%27s+disease&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=">Clinical Trials with open recruiting</a> for Parkinson's Disease, check the NIH listings. You can select MAP in order to find trials in your area. <br />
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At this <a href="http://clinicaltrials.gov/ct2/results?term=Parkinson%27s+disease&recr=Open&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=">Clinical Trials.gov page</a> you will see <strong>a wide variety of PD specific trials now recruiting</strong> in such area as Transdermal nicotine patches, Transcranial Magnetic Stimulation (TMS), Overactive bladder, Urate elevation, antidepressants, Rivastigamine Patch, Rasagiline (Azolect) as an add-on to dopamine agonists, effect of exercise, Safinamide, Non9nvasive Brain stimulation, Memantine for gait and attention deficits, Ropinerole (open label), facial expression, efficacy of voice treatment, CoQ10 (there is also one for Huntington'sdisease), SAM-e, biomarkers, Naltrexone for impulse control disorders, Isradipine (Dynacirc), green tea (polyphenols), Vitamin B12, Apathy, Swallowing Training. In all there are 274 open trials although not all are recruiting yet.<br />
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One last note: the PD-chocolate trial is only being conducted in Germany at Dresden University of Technology. On a personal note, some of us are waiting for the caregiver trials involving fine chocolates.</div></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com3tag:blogger.com,1999:blog-8576518534043843234.post-41970169190977000342010-06-22T12:15:00.002-04:002010-06-22T12:22:45.915-04:00Webinars and Webcasts of Interest for Parkinson's Disease<strong>For PwPs, Caregivers and Families: </strong><br /><strong>You might be like to attend these online events</strong><br /><br /><div><strong>Drug Development Pipeline</strong> on Thursday, June 24th, 2010 </div><div> 2:00 pm to 4:30 pm EST</div><div>Direct from the Campus of Georgetown University, <strong>Parkinson's Action Network (PAN</strong>) is hosting <em>"Emerging Therapies: From Microscope to Marketplace"</em> featuring a panel of speakers from the scientific community. Each will address a different stage in the drug development pipeline process.</div><div></div><div>Howard Federoff, M.D., Ph.D.: Executive Vice President for Health Sciences and Executive Dean of the School of Medicine at Georgetown University will moderate.</div><div>The panel:</div><div>James P. Bennett, Jr., M.D., Ph.D.: Chair, Department of Neurology and Founding Director of the Virginia Commonwealth University Parkinson's Disease and Movement Disorders Multidisciplinary Research and Clinical Center </div><div>Story C. Landis, Ph.D.: Director, National Institute of Neurological Disorders and Stroke, National Institutes of Health</div><div>Raymond T. Bartus, Ph.D.: Executive Vice President and Chief Scientific Officer, Ceregene, Inc.</div><div>Jackie Hunt Christensen: PAN Minnesota State Coordinator and Clinical Trial Participant</div><div>Janet Woodcock, M.D.: Director, Center for Drug Evaluation and Research, Food and Drug Administration</div><div><br /></div><div></div><div><b>Registration is not required</b>. On the day of the Webcast, simply visit the PAN home page and tune into the Webcast from your home or office computer. <br />For more information on the Webcast, please <a href="mailto:info@parkinsonsaction.org" id="xl6i" title="If you have questions, simply send them to PAN">e-mail PAN</a> </div><div>Registration is not required. On the day of the Webcast, simply visit the <a href="http://www.parkinsonsaction.org/" id="kg4n" title="We are assuming that there will be a link rather than Mark Your Calendars">PAN home page</a> and tune into the Webcast from your home or office computer. </div><div></div><div>~~~~~~~~~~~~~~~~~~~~~~~~ </div><div>From <strong>AARP</strong> on the same day, Thursday, June 24, 2010 </div><div><strong>"The New Health Care Law: What It Means for People with Medicare"</strong></div><div>Times are:</div><div> 2:00pm -3:00pm EST </div><div> 1:00-2:00 pm CST </div><div>12:00 pm-1:00 pm MST</div><div>11:00 am -12:00 pm PST</div><div>To register at AARP for this event, <a href="https://ww2.eventrebels.com/er/Registration/RegistrationForm.jsp?ActivityID=5137" id="qtvh" title="Pre-registration is required">click here</a></div><div>There will be a Question and Answer period with AARP experts</div><div></div><div>~~~~~~~~~~~~~~~~~~~~</div><div>Did you miss one of the <strong>Parkinson's Disease Foundation (PDF) Educational Events</strong>?</div><div>You can see and/or hear them <a href="http://www.pdf.org/en/online_education_past" id="kh29" title="Link to all 6 Parkinson's Disease past events">here</a>.</div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com1tag:blogger.com,1999:blog-8576518534043843234.post-88520611024114217682010-06-09T14:51:00.003-04:002010-06-09T15:03:47.352-04:00Changing Stages of Parkinson's Disease<div><strong>I'm Back</strong><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgonkvkB9QvT35OBkiQ-zbBO-a8W6Rb-Lu4CoSBc6-kzizvODURyXiYM6nzSmJTkSMMaaSh68vZsNHG9LVF8r0D1uCPbAtFFCk2ofUHEDMyNSvtLdrlfxqdaHe4NokflQ6k-SflCaxapi4/s1600/CLoudDownTheRoas-GA-maybe_IMG_7812.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgonkvkB9QvT35OBkiQ-zbBO-a8W6Rb-Lu4CoSBc6-kzizvODURyXiYM6nzSmJTkSMMaaSh68vZsNHG9LVF8r0D1uCPbAtFFCk2ofUHEDMyNSvtLdrlfxqdaHe4NokflQ6k-SflCaxapi4/s200/CLoudDownTheRoas-GA-maybe_IMG_7812.jpg" width="200" /></a></div>This is the first article I have written for my blog in almost six months. After eight years of having Parkinson's disease and treating it fairly successfully with medication, alternative medication and nutritional supplements, exercise, massage and diet changes, I ran into trouble between Thanksgiving and Xmas last year. I thought they were symptoms of PD.</div><div></div><div><br />
The urinary symptoms which had been under control were no longer controllable; perhaps because I was neglecting to take the herbals which had helped for so long. Suddenly I had to urinate really frequently and didn't always make it to the bathroom even though my bed is only 20 feet away. I became afraid to leave home for fear of being too far from a rest room. Vivid dreams occurred so often that I could not tell what was real and what was not. My overall memory of this period is vague but I felt as if I were dying.</div><div></div><div><br />
Although I primarily stayed in bed, often I thought I was someplace else and worried about how I was going to get home. In an amazingly short period of time I went from the early stages of Parkinson's to an advanced state; it seemed to take 2 or 3 weeks. (Editor's comment:<i> it was practically overnight</i>)</div><div></div><div><br />
How did I get to that state?<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30juUmdhsAcNA7E_xFf4UzdBpC8STbO6plq21fSOyoQAid0-NGvCmj3gupPA-8QHdXQvk4U71ehdJIVDYzhYvdWXU_i_HAyVJZ1d51qGx9FAt4PhzAc8tI2O_o7kC-IJfPdBmhcnCe6Q/s1600/Moon-lightThroughDarkClouds_IMG_8870.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg30juUmdhsAcNA7E_xFf4UzdBpC8STbO6plq21fSOyoQAid0-NGvCmj3gupPA-8QHdXQvk4U71ehdJIVDYzhYvdWXU_i_HAyVJZ1d51qGx9FAt4PhzAc8tI2O_o7kC-IJfPdBmhcnCe6Q/s200/Moon-lightThroughDarkClouds_IMG_8870.JPG" width="200" /></a></div></div><div></div><div>In early November I had an appointment with my primary care doctor to discuss some alternative treatment options. He referred me to the neurologist to continue this discussion. The urinary issues were not discussed although we did discuss my arthritic knee and the loose tendons. One area of concern for me was the MRI he proposed. I do not like MRIs. I do not like being in places which I cannot leave of my own free will. <br />
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Even the open MRI which I was supposed to have done years ago, did not take place because it was too stressful for me. This doctor suggested that we could begin with an Xray and take it from there. He gave me the lab order but I was too shaken by the mere mention of an MRI to do even that.</div><div></div><div><br />
We made the neurology appointment as suggested and then my wife decided that the Xrays had to be done before that appointment in three weeks. She finally nagged me to the lab for the Xrays a few days before I was to see the neuro. That weekend I hardly slept and the urinary issues were getting worse. I wasn't eating as much and had been limiting my coffee and tea intake because of the urinary frequency and urinary hesitancy. As a matter of fact, I was limiting all fluid intake. No fluid - no urinary frequency - no problem. But there was a problem and the frequency urges did not stop.</div><div></div><div><br />
By the time we were talking to the neurologist, the transition was taking place. I asked not for the intended alternative treatment but for Sinemet which I thought would help the urinary issues. He agreed after the routine PD testing. By the next day the nightmare was developing full force.</div><div></div><div><br />
Almost overnight I was having difficulty walking down the hall. I could barely stand erect. Cognitive skills were muddled by hallucinations and illusions. I needed assistance to get into bed, instructions just to roll over. I needed help pulling up the blanket. Dressing and bathing without help was impossible. I would get up to eat but continued to drink only enough liquid to swallow a pill. I recognized the woman who prodded me about drinking more water during the day as being very similar in appearance to the woman who responded to my nightly hollering for help. Who was she? This nurse gave me my wife's name when I asked. What was this place?<br />
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My wife, meanwhile, was learning what you need to do to get a doctor's secretary to relay the seriousness of a condition. Because I had signed a release allowing the office to speak to my wife about my care, she knew she was on safe ground there. Her early calls were partially successful. The primary care office called back to refer her to the neurologist. The neurologist called back to say that Parkinson's disease can't go through such a short term transition and so we were looking for another cause possibly a UTI...and referred her back to the primary care doc.</div><div></div><div><br />
She made the appointment for the following Monday and sat down to think and to discuss the issue with the massage therapist when she called to cancel my appointment. Sleep deprivation was only part of the problem. So she gave me cranberry capsules insisting that I drink more water. For half a day, I had a return to normalcy. And she had an insight. I was <a href="http://parkinsonsfocustoday.blogspot.com/2010/01/dehydration-and-parkinsons-disease.html" id="i505" title="Hold the shift key, click the link to open in a separate window">dehydrated</a>. </div><div></div><div><br />
When we went to the doctor's appointment, she took my urine specimen along. She insisted that it be tested. When it came back negative the discussion turned to prostate issues. We left with sample bottles of Flomax. What we didn't know was how long it would take before the Flomax would work - that it actually would be another 5 weeks before for the compulsive insistence that she walk me to the bathroom every 20 minutes would stop.</div><div></div><div><br />
The <a href="http://parkinsonsfocustoday.blogspot.com/2010/01/dehydration-and-parkinsons-disease.html" id="z-8s" title="Hold the shift key and press the link to open in a separate window to previous article about dehydration">dehydration issue</a> was caused by the enlarged prostate which I knew about but didn't discuss much. Years earlier I didn't want to take the meds and had found relief with herbals. But this time I had confused the prostate problem with PD which exhibits the same symptoms. I'm an older man, older men frequently develop prostate issues. Had I talked to my new doctor about the problems instead of accepting that they were part of the disease, I wouldn't have had to endure all of this. The damage done by the dehydration, the stress for all of us except the cats - the dogs were very subdued during the first month - was intense.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNSAFq9cTBmzs1fJc9RrkDhcfIbF21dBfUx3bN5DDG6VuoQlSncUnWjwIh-EJlYbOCwLzjRgBg41f4ocMDW6fQF7W7qoUqykzHPAFiPkTz8kD85n1bms59eRt6tjwVvzi3nfoaw_XfqcI/s1600/PinkBudsSpring-TakenAtLagoonNotVisible_IMG_6461.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="174" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNSAFq9cTBmzs1fJc9RrkDhcfIbF21dBfUx3bN5DDG6VuoQlSncUnWjwIh-EJlYbOCwLzjRgBg41f4ocMDW6fQF7W7qoUqykzHPAFiPkTz8kD85n1bms59eRt6tjwVvzi3nfoaw_XfqcI/s200/PinkBudsSpring-TakenAtLagoonNotVisible_IMG_6461.jpg" width="200" /></a></div>It has been a long recovery and we learned a few lessons and revisited a few others. </div><br />
<div> 1) <strong>Protective underwear</strong> is cheap in comparison to losing 4 productive months.</div><div> 2) <strong>Sign that doctor's release</strong> now so that your spouse or other family member can talk to the doctors office</div><div> 3) Don't make that call or visit the doctor without a <strong>complete written</strong> <strong>list</strong> - make copies</div><div> 4) <strong>Symptoms of dehydration and sleep deprivation are similar to dementia and to PDD</strong></div><div> 5) Ask how long it will be before you can expect to <strong>feel results from a medication</strong></div><div> 6) If a nutritional supplement helps, <strong>don't stop taking it just because there are so many pills to take</strong></div><div> 7) <strong>Don't assume</strong> that the problem is caused by the Big Problem;there can also be other medical issues - tell your doctor. </div><div> 8) Just because a doctor prescribes it, that doesn't mean you shouldn't <strong>do your own research</strong> for contraindications. (I have a faxed-in prescription that we will never fill for just that reason - my wife did the homework)</div><div> 9) All of you <strong>caregivers out there deserve more credit</strong> than you receive! </div><div>10) Be persistent - it can be depressing - <strong>don't give up</strong>. </div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com4tag:blogger.com,1999:blog-8576518534043843234.post-65839736043611769442010-05-08T18:56:00.002-04:002010-05-08T19:01:29.980-04:00How Much Antifreeze Does a Parkinson's Patient Swallow?<b>What the Heck Is in My PD Medication and Why?</b><br />
<div></div><div><br />
A serious issue for people with Parkinson's disease is those times when medication wears off before the next dose is due. </div><div>Remembering to take the first dose in the morning but sometimes forgetting the next one can be a problem as well.</div><div>That's why there are pills specially designed to address and correct/remove those problems. We know them as timed release, controlled release (CR), sustained release (SR), extended release or long acting ER, XR, or XL), slow-release, and continuous-release (CR or Contin). </div><div></div><div><br />
We know we can't chew them. But else do we know about how they work? What makes it possible for this timed-release to occur after the pill is swallowed? Is it safe? </div><div></div><div><br />
And when we looked at the ingredients of these shinny pills. Sometimes there is polyethylene glycol (PEG) or ethylene oxide which we know is a precursor to ethylene glycol ... antifreeze...or we see <a href="http://en.wikipedia.org/wiki/Propylene_glycol" id="bts0" title="more about this double alcohol sometimes known as α-propylene glycol">propylene glycol</a> and butylated hydroxytoluene. We learned that part of the latter is a solvent. What's the story here? Why is this stuff in a pill which is supposed to help? How is it used?</div><div></div><div><br />
We know that when treating certain medical conditions it can be helpful to have a medication which can be released slowly and steadily throughout the day in order to maintain a constant blood serum level of the medication. Controlled release drugs have an advantage of being somewhat cost-saving and many may actually release a safer level of the medication. Most do this fairly well; a few have unresolved issues.</div><div></div><div><br />
The mechanism of burst-release still needs refining because on occasion more medication is released than designed. New technologies are developing which will use not polymers but possibly recently developed polypeptide agents possibly utilizing RNA and/or <a href="http://en.wikipedia.org/wiki/RNA_interference" id="wazy" title="RNA interference has an important role in defending cells, in directing development and in gene expression">siRNA</a> (small interfering RNA). Not yet, but perhaps within a few years. In London at the end of the month there will be a specific presentation for "Controlled release in chronic diseases" at a controlled release event. And we would expect these pills to be safer as well as having a higher efficacy rate.</div><div></div><br />
The mechanism is that either the drug matrix dissolves slowly and steadily or that the drug is released cyclically over a long period. The formulations may vary from chitin to acrylic to polymer based tablets with a porous membrane on one side with different processes occurring once in the body. The bursts seem to occur in the CRs but perhaps steadier control will be possible in the future. <br />
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But what about that<i> other stuff</i>?</div><div></div><br />
According to what we've read, polyethylene glycol (PEG) - as used in medications - has a low toxicity "When attached to various protein medications, polyethylene glycol allows a slowed clearance of the carried protein from the blood. This makes for a longer acting medicinal effect and reduces toxicity, and it allows longer dosing intervals." This would explain why it is in the Extended or Controlled Release pills. Is it totally safe? Apparently for now it will have to be safe enough. Even taking several pills of this type a day should not become an issue unless there is a intestinal blockage.<br />
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The differences between PEGs are molecular weight. What about polyethylene oxides (PEO)? We know that PEs are carcinogenic at certain ppms. But we are not chemists and that is an area for the experts to discuss. <br />
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These chemicals are sometimes used in laxatives and calcium channel blockers. The calcium channel blockers have a semi-permeable membrane which surrounds the actual drug. The core itself is bi-layered with the active layer of the medication and an inert layer, known as the "push" layer of an osmotic. And this is where we find the PEO polymer. The push layer will swell and force the active drug out of the membrane through a pre-drilled laser opening on the active layer side of the membrane. This creates a fairly steady release of the active chemicals into the gastrointestinal tract.</div><div></div><div><br />
What happens to the inert but actively working push layer when emptied of the active drug? It's already in the intestinal tract and so is simply taken out with the trash.</div><div></div><div><br />
In laxatives, osmotics create excess water in the intestine to loosen stool buildups. Taken with an electrolyte solution osmotic laxatives are often used prior to bowel surgery. Some of these contain polyethylene glycol and are intended for short term use only. Some Parkinson's patients take Polyethylene Glycol 3350, an osmotic laxative, in the form of MiraLax or Macrogol for constipation as a last resort because nothing else works for them. The caveat is that too much or too often can result in diarrhea. Side effects include nausea, gas and bloating.</div><div></div><div><br />
There is no question that it is not a good idea to take any medication with polyethylene glycol if you are allergic to it as it can cause rash, swollen tongue, hives and other typical unpleasant allergy reactions.</div><div><br />
Do not confuse ethylene glycol (EG) with polyethylene glycol (PEG). They are not the same thing. Ethylene glycol is metabolized into <a href="http://en.wikipedia.org/wiki/Oxalic_acid" id="mst-" title="a dicarboxylic acid - also present in Wood-sorrel - an early symptom will be joint pains">oxalic acid</a>, a poison that affects the brain, the heart and the kidneys. Ethylene glycol (EG) is toxic to people and to pets. Your car is happy with it because adding it to your radiator offers protection in cold weather. In your body it can kill. Polyethylene glycol makes your intestinal tract happier because it can get rid of toxins. In your body it has low toxicity.</div><div></div><div><br />
Propylene glycol, an organic compound (a diol or double alcohol) is used as a humectant (moisture retentive) food additive E1520, as a moisturizer in medicines, toothpaste, mouthwash among others. While it does have similar properties to ethylene glycol and is used in antifreeze and de-icers; it is less toxic. And of course, toxicity would depend upon the percentage used in a product. It metabolizes to <a href="http://www.biology-online.org/dictionary/Pyruvic_acid" id="xir9" title="an organic liquid produced during glycosis of carbs and sugars-the conversion to lactic acid or the Krebs cycle depends upon the presence or absence of oxygen">pyruvic acid</a>, as part of the normal glucose metabolism process. Although long term toxicity is low to humans; it can be toxic to dogs and cats (although the effects are apparently different in cats). Do note that this type of alcohol is different than that which you have in a drink.</div><div></div><div><br />
Who else has weighed in? From the CDC we learn that the FDA classifies polyethylene glycol as an additive that is "<i>generally recognized as safe"</i> for use in foods. In large quantities it will increase the acidity of the body. What is does not do is to form the harmful crystals which collect to the kidneys as ethylene glycol produces while it breaks down. Polyethylene glycol breaks down rapidly in the body.</div><div></div><div><br />
Although most of the warnings we saw related to overdose of the medication itself and not the individual components, this does not mean there is not room for improvement. As more is learned about our air, water and food, we think that more attention will be directed to medicines. It may happen very quietly within the pharmaceutical companies because of economic impact. At the same time, the drugs taken for Parkinson's disease are immediately necessary in their available forms and changes co$t.</div><div></div><div><br />
By the way, the chemicals are also found in most toothpastes. </div><div></div><div><br />
<i>Note: The title question is in part rhetorical, however, the answer would be based upon each individual's medicine cabinet. We looked at DynaCirc CR and Nimodipine labels for this article.</i></div><div><br />
<i>Additional Reading</i>:<br />
American Academy of Neurology, <a href="http://www.medscape.com/viewarticle/718759" id="ku.e" title="What is considered safe">Quality Standards Subcommittee guidelines</a> - published Neurology. 2010;74:924-931. <a href="http://www.medscape.com/viewarticle/718759">http://www.medscape.com/viewarticle/718759</a></div><div><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1727881/" id="y922" title="You might find this somewhat reassuring">Long term efficacy study</a> 2000 placebo/blind small doses of isosmotic PED electrolyte balanced solutions over 6 months was an effective constipation treatment; "appeared to be safe,tolerated and devoid of significant side effects" </div><div><a href="http://en.wikipedia.org/wiki/Polyethylene_glycol" id="dkel" title="Don't panic - scroll down to the medical uses">More about polyethylene glycol at Wikipedia</a></div><div><a href="http://pcc.com/lists/pedtalk.archive/0012/00008.html" id="tbz3" title="Yes, this is from 2000 but it has a helpful link as well as some reassurance">Ethylene vs polyethylene glycol</a></div><div><a href="http://en.wikipedia.org/wiki/Butylated_hydroxytoluene" id="v523" title="Good grief, not another one">Butylated hydroxytoluene</a>, a lipophillic (fat-soluble) organic compound that is primarily used as an antioxidant food additive as E321 </div><div><a href="http://www.atsdr.cdc.gov/tfacts189.html" id="k5j:" title="Essentially the CDC appears to defer to the FDA on this subject">From the CDC</a>: </div><div><i><a href="http://www.devicelink.com/mpb/archive/97/11/003.html" id="o89e" title="Published in 1997, this is still a must read if you want to know more">Polymers in Controlled Drug Delivery</a></i> by Lisa Brannon-Peppas </div><div><a href="http://www.pharm.org.tw/cjp/issue/58-1/J006.pdf" id="u82u" title="Research from Taiwan: Graduate Institute of Parmaceutical Chemistry, School of Pharmacy at China Medical University and School of Pharmacy at taipei Medical University">Drug Release from Hydroxypropyl Cellulose and Polyethylene Oxide</a></div><div>The <a href="http://www.dow.com/PublishedLiterature/dh_036b/0901b8038036b27f.pdf?filepath=dowexcipients/pdfs/noreg/198-02204.pdf&fromPage=GetDoc" id="ywec" title="From DowWolff Cellulosics">Use of Polyethylene Oxide Mixtures</a> to Study Formulation Robustness in Hydrophillic Extended Release Matrix Tablets </div><div>Formulation of a Model Poorly Soluble Drug with <a href="http://docs.google.com/viewer?a=v&q=cache:hOwG0M8a8tIJ:www.dow.com/scripts/litorder.asp%3Ffilepath%3Ddowexcipients/pdfs/noreg/198-02210.pdf%26pdf%3Dtrue+%22polyethylene+oxide%22+in+medication&hl=en&gl=us&pid=bl&srcid=ADGEESi9TEY2f691PSv9dEsXdf4z8f22yYShHpeXBRuleCCuKqRmyhkbaTkhCKNxkOrK5RSwZ5GieL91nH4iPvu4EoXN995K-RkpF5mR2rR_orzvzISLjPmxhAziMtMKwvdOCUiYEYhK&sig=AHIEtbQuOhja_OoEFbzGTu0njVaEYWaNPA" id="hhe1" title="More from DowWoldd Cellulosics - not in PDF format">Low Molecular Weight Grades of Polyethylene Oxide</a> demonstrates Improved Aqueous Solubility </div><div></div><div><a href="http://www.rxmed.com/b.main/b1.illness/b1.1.illnesses/Constipation.htm" id="p-yt" title="Suggestions and a list of the types and available medications">More information about constipation</a> </div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com2tag:blogger.com,1999:blog-8576518534043843234.post-11344253181127894622010-04-29T23:41:00.005-04:002012-04-17T21:48:35.500-04:00Neupro Rotigotine Transdermal Patch Ordered Back to the Drawing Board<div><b>Parkinson's disease and Restless Leg Patients Will Have to Wait - FDA Has Ruled</b></div><div></div><div><br />
The news for US Parkinson's Disease patients waiting for an early FDA clearance of the Neurpro patch formulation is not good. On April 23, 2010 <a href="http://www.ucb.com/media-room/newsdetail/?det=1407441&select-year=&select-archive=" id="os:v" title="UCB Receives Complete Letter from U.S. FDA Regarding Neupro® (Rotigotine)">UCB announced</a> the receipt of the FDA response letter. The FDA informed UCB Pharma that it will have to resolve all crystallization issues with the Neupro® patch. Apparently the policy is zero tolerance despite the fact that the patch was returned to the European market about 10 months ago.</div><div></div><div><br />
We already knew that if the patch received approval (again) from the FDA that there would be a delay while the new patches were produced. In all likelihood, the news would not have been officially released until the patches were on their way throughout the US to pharmacies for cold storage. This delay would have put the availability back to the end of 2010.<br />
</div><div></div><div>With the decision to order UCB to find a definitive solution to the crystallization issue which did not appear to negatively affect users, UCB will be back to redesign. The FDA acknowledged that the new refrigeration conditions - the cold storage distribution would "significantly inhibit the degree of crystallization on the batches but" the order is to reformulate the product to definitively resolve the issue.<br />
<br />
From the 4/23/10 announcement: <em><strong>"We have already been working on a room-temperature stable, improved formulation of Neupro® and have made significant progress in this area,"</strong> the Chief Medical Officer of UCB added. "Neupro® has made a meaningful difference for many people with Parkinson's disease and Restless Legs Syndrome. We are committed to obtaining FDA approval so that people in the U.S. who live with these diseases can benefit from Neupro." </em></div><div></div><div><br />
The good news for PD patients around the world with the exception of the USA are the results of the <a href="http://www.ucb.com/media-room/newsdetail/?det=1403319" id="lkb2" title="New data presented at the American Academy of Neurology meeting showed that Neupro® improved both motor and non-motor symptoms of PD">RECOVER</a> study were presented in at the American Academy of Neurology annual meeting in Toronto, Canada in April, 2010. The data demonstrated the rotigotine improved both early morning motor function and improved non-motor symptoms in Parkinson's patients. Symptoms such as sleep, mood, cognition and pain were measured and found to be improved. Nocturia, night time excessive urination remained unchanged and there were some adverse events such as site reactions, nausea and dizziness in both the rotigotine group and the placebo group. Rotigotine was shown to be effective up to 6 years and provided improvement in movement symptoms for up to 6 years.</div><div></div><div><br />
<a href="http://www.ucb.com/media-room/newsdetail/?det=1402984" id="f11_" title="The results of the Restless Leg Syndrom study">In another study</a> the Neupro® Rotigotine Transdermal Patch was shown to provide sustained benefit for Restless Leg Syndrome.</div><div></div><div><br />
One thing to remember is that rotigotine is a dopamine agonist and as such there are also side effects. It is unlikely that reformulation will alter those side effects because of the class of the medication. For the people who have been helped by this medication, its loss was quality of life altering.</div><div></div><div>Based upon the fact that reformulation could take at least a year or two and FDA approval would probably take as long as their denial, it may be 3 years before it is seen again in US pharmacies. After approval, there would probably be a significant period of time to begin manufacturing and distributing.</div><div></div><div><br />
We wonder why the the FDA did not allow for a provisional approval for, say 2-3 years, while UCB worked to meet the present requirements. Based upon the fact that the medication is on most of the world market already, it would be the humane thing to do. </div><div><br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB0HY82o9W9bNlwUIAHNmvA7gfWX4wGorVfixyvuhDVsNdLEVzIzR4Y2KFpsmeQrPVePphAtA5wVnyFbdHgw9YOaUzQb0e0_y0x8ENUAGYmif5ZQORLFlvTBO-_l5z0VkXySL3cAAFcMc/s1600/HarryLookingSad_IMG_3415.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB0HY82o9W9bNlwUIAHNmvA7gfWX4wGorVfixyvuhDVsNdLEVzIzR4Y2KFpsmeQrPVePphAtA5wVnyFbdHgw9YOaUzQb0e0_y0x8ENUAGYmif5ZQORLFlvTBO-_l5z0VkXySL3cAAFcMc/s200/HarryLookingSad_IMG_3415.JPG" tt="true" width="200" /></a>On a personal note, we'd like to apologize for the delay in posting the Neupro-FDA information. I found it so upsetting, that although Steve gave me the information immediately, I couldn't find the words to express my disappointment.</div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Previous Neupro posts:</div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://parkinsonsfocustoday.blogspot.com/2010/03/finding-safe-online-pharmacy-for.html" id="eyyc" title="Online pharmacies and Neupro availability">March 14, 2010</a></div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">On 3/11/2010, 12/23/2009, 12/11/2009</div></div><div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="http://parkinsonsfocustoday.blogspot.com/2009/11/neupro-availability-update-for-happy-pd.html" id="r8te" title="LInk to an online pharmacy which sells the rotigotine patch - we don't know how it is shipped - that is a crucial question">November 26, 2009</a> in a Thanksgiving hope</div></div><div><a href="http://parkinsonsfocustoday.blogspot.com/2009/08/whats-happening-with-neupro-patch-for.html" id="xy0w" title="When we thought the problem would be rapidly resolved.">August 16,2009</a></div><div><a href="http://parkinsonsfocustoday.blogspot.com/2009/04/rotigotine-transdermal-patch-for.html" id="bj_s" title="About the Rotigotine Transdermal Patch for Parkinson's Disease">April 10, 2009</a> in which we included many links about the patch.<br />
<br />
<em>Addendum: On April 3, 2012 UCB announced that the FDA has approved the revised patch. UCB has targeted July 2012 as for the return to the US market.</em></div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com7tag:blogger.com,1999:blog-8576518534043843234.post-65664922493677710042010-04-22T19:41:00.012-04:002010-12-31T21:23:31.353-05:00Coping with Problems of Postural Instability in Parkinson's Disease<b>Preventing those PD falls and What to do when you do fall</b><br />
<br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>In the <a href="http://www.umm.edu/parkinsons/signs.htm" id="ukas" title="The PD acronym: Tremor, Rigidity, Akinesia (Bradykinesia) Postural Instability">TRAP</a> of Parkinson's disease, postural instability is the last of the big 4 symptoms. It is also the symptom which can lead to one of the leading causes of death for PD patients.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>Postural instability can be caused by Parkinson's disease or can be related to syncope (fainting); orthostatic hypotension as a side effect of medications taken either for PD; neurogenic orthostatic hypotension as a result of a condition such as MSA; a cardiac condition, medication-induced dyskinesia, or another issue. Postural instability can also be a byproduct of depression for which PD does not lack.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>Because there is little help through medication, that leaves devices, caregivers, exercise and the patient to recover from a fall or to better train the body to withstand the problems of postural instability.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div></div><div>Although I do not trust a lightweight walker for stability in heavy lifting, it might be of value if that is all that is around. It can be used for the patient to pull himself/herself up if someone is present to stabilize the walker. Otherwise both patient and walker could fall over. A cane with those extra legs at the bottom might do the job if there is arm strength.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div></div><div>There is also value to having handrails installed in hallways and even bathrooms just as they are on stairways. Avoiding backless chairs or stools is also advisable in order to avoid the risk of retropulsion - leaning back to regain balance or because of loss of balance with the resultant fall.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>One important aid is exercise. Gait exercise can be crucial. We suggest asking for a referral to a therapy center so that gait training can be initiated. Gait training would include lengthening of stride, learning to open at the hips for a wider stance. The smaller the space between the legs, the less option to maintain balance. Lifting the legs almost in a march rather than shuffling and sticking to the floor may also be of value to provide a mental and physical cadence and to decrease the risk of the tripping on the shuffle.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>Exercise addresses range of motion, flexibility stretching and yes, even strength training (to assist in rising if you do fall) and breathing. Yoga and Tai Chi exercises can help with balance and even graceful falling. Nautilus is important exercise equipment and there are less expensivel pieces of exercise equipment which can be purchased for home use. Don't neglect hand exercises. Being able to grip is crucial; a weak or claw-like hand won't help you.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div></div><div>Dance therapy might be helpful. Although its effects will not be physically apparent after the music stops, there might be a psychological-confidence effect which impacts postural instability due to PD depression. And it's <span style="font-family: Comic Sans MS;">FUN</span>! Even in your living room. Get those endorphins going.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>Locate a therapy center which has Forced Exercise equipment and aqua therapy. Water exercises can be beneficial to a PD patient because of the buoyancy effects of exercising - marching in the water. And Forced Exercise - not on a treadmill in this case unless there are trained spotters or with a support vest which attaches to the ceiling - but on the motorized exercise bicycles which compensate for the patient's inability to maintain the necessary rpms on his own. For some people these bikes are an affordable option for home use - for others, they are not. But the bike must be able to maintain between 80-90 rpm. There are two types of therapeutic bikes for this purpose. One is the Theracycle (there should be an ad link on this page). The other company is Reck MotoMed which makes several styles for home and therapy center usage.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>Naturally there are aids such as shower seats (with backs or transfer seats), grab bars in the tub/shower area (no suction cups please), hand-held shower-heads with longer hoses and on-off buttons to prevent unnecessary standing in the shower. Soap on a rope.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>No PD home should be without bath/shower aids even if they are not needed immediately. Knowing how to use them and using them regularly helps to train the body so that when the equipment is needed, there is kinetic memory to reinforce the use patterns. (Yes, I am a believer in the possibilities of kinetic memory to resist the tightening muscles and we have seen it work with my husband in entering/exiting the shower after the side effects of dehydration - another story - had some temporary but dire cognitive effects).</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div></div><div>Little is available to address postural instability in PD. Usually discussed as a later PD symptom because it is apparent then, to many it is an invisible side effect as a very early symptom. Everyone talks about falls, the risks, prevention and the role they play, but we haven't found many solutions to address the problem by fixing the chemical imbalances which cause it because we are not sure precisely where in the brain the problem originates although the focus is on the brain stem.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>There is one rather expensive pneumatic device which can be used in the home to aid in lifting and there appear to be patent applications for more. The link to this inflatable device is provide below at a site with which we are unfamiliar.</div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div>Have a home safety evaluation conducted. These are often done by occupational therapists - they'll survey the home, watch the patient functioning in their own environment and make safety recommendations. They need to know the patient has fallen in the past and what the ensuing problems have been.<br />
<br />
<div>The process for assisting a patient who has fallen is step by step after you are sure there has been no injury. Do not move an injured person. Make the call for emergency medical assistance. Or use that MedAlert button.</div></blockquote><blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>No injuries? Whew! Let's catch our breath. Everybody breathe calmly a few times to relax. </div><ul><li>Encourage the patient to roll from the landing position to a prone face down position. You may be able to assist with that.</li>
<li>Next the patient must raise the upper torso onto bent arms. The lower part of the arm is on the floor.</li>
<li>The buttocks are next, assisted by the knees. </li>
<li>With weight on the forearms, rock forward and then back as you use those abdominals to lift your butt into the air. </li>
<li>The knees will <i>walk</i> forward and assist with the push up.</li>
<li>Once the patient is on his/her knees, you can assist them if they need help. If they are unable to rise from a kneeling position, they may be able to pull up on sturdy furniture or walker. Or you may be able to brace them (their arm around your shoulders and both of you rise from a kneeling position. The caregiver must keep a straight back to avoid injury. </li>
<li>If you are alone, you may be able to crawl on your knees to furniture solid enough to provide support for the pull to a standing or seated position. </li>
</ul>At this point prevention and exercise seem to be the best methods to reduce the risks. Many caregivers are simply not strong enough to pull or lift a person lying on the floor without assistance. This is also another argument for the other forms of exercise accompanied by strength training.</blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div></div><div>additional reading: </div><div><i>Chronic Dizziness and <a href="http://www.merck.com/mkgr/mmg/sec2/ch19/ch19a.jsp" id="b06e" title="More information of the general condition at Merck">Postural Instability</a></i> </div><div><i><a href="http://jnnp.bmj.com/content/75/12/1682.abstract" id="um12" title="A therapeutic approach for postural instability in Parkinson's disease - 2004">Repetitive training of compensatory steps</a></i>: </div><div><i><a href="http://parkinsonsfocustoday.blogspot.com/2009/05/forced-exercise-to-relieve-parkinsons.html" id="sr1f" title="With links to Rech MotoMed and to Theracycle as well as the work of Dr Jay Alberts at the Cleveland Clinic">Forced Exercise to Relieve Symptoms of Parkinson's Disease</a></i> </div><div><a href="http://findarticles.com/p/articles/mi_qa4108/is_200806/ai_n27901707/" id="vxp6" title="Discriminating Fallers from Nonfallers Based on Standardized Clinical Measures">Postural Instability in Idiopathic Parkinson's Disease</a> </div></blockquote><br />
<blockquote class="gmail_quote" style="border-left: medium none; margin: 0px 0px 0px 0.8ex;"><div>Links to <a href="http://www.techforltc.org/ltc.cfm?pageid=156&producttype=2366&careissue=1892" id="ys.h" title="Expensive but could be a back saver for caregivers - might be worth the investment">inflatable device</a> and <a href="http://www.mangarusa.com/yourbizsites/userfiles/mangarusa/files/CamelME0074_2.pdf" id="b6n6" title="pdf version of detailed pictures of the way the device is used">detailed advice</a> on its usage:</div><div><a href="http://docs.google.com/viewer?a=v&q=cache:UHT8CcmxusoJ:www.mangarusa.com/yourbizsites/userfiles/mangarusa/files/CamelME0074_2.pdf+inflatable+device+to+lift+a+fallen+invalid&hl=en&gl=us&pid=bl&srcid=ADGEESj5rtpFPQ0i0SRu3vdZlNhKw6mIXMkphmyYeuZq4xealP1mCF7F-ijmVqWYGphW9MapXN8W6kr9wLl9F_lwSymCLVYYaHPaN1C-3oUkQ7Mul5wRi6r8MNeGKYL_EeS5lo3fMkDO&sig=AHIEtbT5kShPNvXOvj2jOLOQCFNeRnnk4g" id="jayt" title="Scroll down the pages for a view of the way this inflatable device is used">Same information</a> if you can't view pdf format: </div><div><a href="http://docs.google.com/viewer">http://docs.google.com/viewer</a></div></blockquote><div><br />
It's being called WiiHab and we already know that it can help with PD depression, what about postural instability? As a diagnostic it has been found to be effective: </div><div><i><a href="http://frontierindia.net/pharma/nintendo-wii-balance-board-could-prevent-falls-study-reveals/694" id="t:-8" title="About a study by Dr Ross Clark, Phisiotherapy Dept at the University of Melbourne, published 12-09 in 'Gait and Posture'">Nintendo Wii Balance Board Could Prevent Falls</a></i></div><i><a href="http://www.gaitposture.com/article/S0966-6362(09)00664-X/abstract" id="qxct" title="The 2009 abstract of Dr Clark's study in 'Gait and Posture'">Validity and Reliablity of the Nintendo Wii Board for Assessment of Standing Balance</a> </i><br />
<br />
To try the Wii at home: you'll need the Nintendo console, the balance board and some accessories such as the WiiFit program and controllers. The balance board must be on a firm surface to work properly. If balance is a serious problem, make sure you have support or supporters handy.<br />
<div>For more information check <a href="http://en.wikipedia.org/wiki/Wii_Balance_Board" id="n4ow" title="We don't have one yet, so we're doing our homework first">Wikipedia</a> before you buy</div>Magshttp://www.blogger.com/profile/17436149078101579405noreply@blogger.com2