Tuesday, April 3, 2012

PD News: Neupro and Parkinson's Disease Awareness Items

PD Items of Interest Worth Repeating

Don't look now - and I mean that literally - but it is official, the FDA (US Food and Drug Administration) has approved the Neupro Rotigotine Transdermal Patch (again)  It is estimated that the Neupro patch will be back in pharmacies by July of 2012 - then you can look.

For those who would like to relish the moment, you can read the press release from Neupro headquarters in Brussels, Belgium as it was published earlier today,  4/03/2012.

For those who have been curious about the pharmaceutical grade micronized creatine monohydrate 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. 

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.

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.

Have you visited Mary Spremuli's website for PD and  stroke Speech Therapy, 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.

Things we are trying: Coconut Oil, 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 Omega 3 fish oil, coconut oil doesn't contain those essential fatty acids. 

I didn't know that another use of Amantadine 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.

Another thing I'd like to mention in passing is that when taking levodopa as Mucuna Pruriens, 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.

I got a real eye opened at the recent Parkinson's Disease Foundation Expert Briefing:  A Closer Look at Anxiety and Depression in Parkinson's Disease 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.

We'd had to stop the medical massage 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 behavioral therapy which might help get him back on track or at least pointed at the tracks.

The National Parkinson Foundation (NPF) launched the first-ever nationwide initiative called Aware in Care which features a free kit.  The kit includes the tools to make hospital stays for patients with PD safer. According to NPF, "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." 

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 no charge for the kit, you are welcome to make a donation.

 Also from the National Parkinson Foundation is their announcement of a Yoga Retreat for people with Parkinson's and Caregivers.  You can read more about the 4-day Spring or Fall programs at the Kripalu Center in Stockbridge, Maryland in the eBrochure.

We received an email from Mike Justak, a YOPDer who is undertaking the task of putting together a video presentation called Faces of Parkinson's Video Wall. 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.

Friday, February 17, 2012

Exercises for Postural Instability and Gait Disorders in Parkinson's disease

Help for Balance,Tight Muscles and Sore Joints of PD

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.

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.

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.

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.

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.

             Chair exercises should begin with back stretching followed by body twisting.
             Back stretches help to strengthen those muscles responsible for posture
             as well as reducing stiffness and promoting flexibility (range of motion)
             And it wouldn't hurt to stretch your arms as well as your hands and fingers.

                                  Back Stretch:
  1. Raise arms to shoulder height in front of you
  2. 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.
  3. 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
  4. 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
  5. 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.
  6. Repeat this exercise 10 times and relax
                                                       Twist the Body for Balance

  1. Sit up in the chair - do not lean back - arms straight down, palms towards your body
  2. 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.
  3. Now bend your arms and bring your hands to your shoulders - it may only be possible to have finger-tip contact
  4. 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
  5. Slowly return to face forward - hands still at shoulders
  6. Next slowly turn the body from the waist to the left, again let the head follow to look over the left shoulder.
  7. Slowly return to a forward position - check posture: are you still sitting tall ?
  8. Stretch arms out - keeping them parallel with the shoulders and rotate arms in a small circle with the movement coming from the shoulders.
  9. Slowly breathe in and out through your nose and
  10. Repeat this exercise 9 more times
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.

Marching in Place 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.

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.

For more exercises and to read about Forced Exercise to relieve PD symptoms:
Forced Exercise and other links for Dr Alberts' work
March Music 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.
But pop over to the Regimental Marches of the Foot Guards for slow marches and work your way up to Sousa.

Sunday, January 29, 2012

Postural Instability and Gait Disturbances in Parkinson's Disease

PIGD not helped by current PD medications but there is hope for treatments

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, not right 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.

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.

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.  

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 discussed her Essential Tremor life 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.

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. 

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.

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. 
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. The point is that the PPN seems to be very significant in Parkinson's disease. 

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 marching in place as a chair exercise a few years ago. Shoulder exercises are important for posture and range of motion. This week we'll post two more excellent exercises.

Additional reading - just click the links while holding the shift key:

Topical organization of the pedunculopontine nucleus by 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 

Monday, November 14, 2011

Anxiety and Parkinson's Disease

We Don't Know Why but Anxiety Is a PD symptom
Frankly, at this time, I'm not so concerned with the why but rather the effect of anxiety 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.

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.  

Here's the thing, we know that anxiety was behind Steve's first bout of dehydration 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.

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.

So what happened in the late summer and early fall with the second round of dehydration?  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.

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.

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. 

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 key words 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:  Look Up and Walk Forward. Mostly they had a calming effect and then anxiety takes over and the words become other words - the wrong commands.  

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.

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 Walk Forward)  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.

Watch those stairs
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. 

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 Fox Trial Finder in the right column under Clinical Trials 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 Pimavanserin 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.

Addendum 3/12:
On 3/06/12 The Parkinson's Disease Foundation presented an Expert Briefing, A Closer Look at Anxiety and Depression in Parkinson's Disease led by Dr Laura Marsh. The archived webinar/podcast is now available at PDF.  Listen rapidly as Dr Marsh covered a lot of material in a short period of time. I plan to listen again.

Friday, August 5, 2011

The Effects of Added Stress in Parkinson's Disease

Does Stress Exacerbate PD Symptoms?
Dehydration Brought on by Stress

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.

Having a father-daughter chat
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 .

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.

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.

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.

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.

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, Do you want to live? Then stop trying to kill yourself. Help me help you!  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..

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.

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.

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.

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.

Topper watching roofers
Willson sleeps comfortably
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.
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.

Friday, June 24, 2011

Parkinson's Disease Clinical Trial Finder Customized for You

You can now register for the Fox Trial Finder for PD Clinical Trials
Follow the link at the bottom of this post

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.

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.

Although the Fox Trial Finder 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.

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.

For those of us who have used Clinical Trials.gov, 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.

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.
July 14, 2011
Check out the new Fox Trial Finder: Click here for a direct link to the Fox Trial Finder
According to MJFF: 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.

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.
You can also see the subjects of the trials in the left margin and can simply select a topic.

Friday, June 17, 2011

Random Thoughts and Ideas about Parkinson's Disease

PD is always with us even when we ignore it

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.

Lifestyle aids - If you look hard enough you'll find several interesting products including scissors. 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 long reach scissors for helping with toenails. We don't know if it is really long enough but it might help. There is also a table top mounted scissors which might help for those who can only use one hand.

We wrote about other basic assistive devices 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. We would appreciate your input on experience with adult incontinence underwear brands through your comments below or by email.

Toe Cramps? If a calcium/magnesium along with a potassium supplement doesn't work, perhaps Gel Flex Toe Stretchers 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.

The laser mobility walker for Parkinson's disease. 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 heavy duty walker with seat and basket, the laser device which helps to break a freeze can be purchased separately.

We've only mentioned medical alert tags 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.

Multi-tasking. In ADHD low levels of dopamine prevent a child from focusing - is that similar to the lowered ability of PwPs to multi-task?

Saw this little guy down the street
We were delighted to see him
No imagination required
Hallucinations vs imagination 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? "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?" And if not the dance, will you walk or march with me?

Walking and arm swing - 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 twisting 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.

Steve has been taking a different form of Creatine for the last few weeks and has regained a small amount of arm swing on that PD side. Although we switch brands of supplements from time to time, we're going to be sticking with CreaSol, 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.

Ayruvedic medicine promotes walking as an activity 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.

We know that the rhythm of the dance 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.

So what about melatonin, 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.

CoQ10 and Parkinson's disease. 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.

Steve and Rita on a walk in the park
Rhinorrhea 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. Rhinorrhea in Parkinson's disease by Dr Joseph H Friedman, MD Rhinorrhea: a common nondopaminergic feature of Parkinson's disease.

Seborrhoeic dermatitis - 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)

Autonomic Neuropathy 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.

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.

Steve loves marigolds
Which leads us to the symptoms of kidney problems 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 UTIs 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.

Exercise aids - 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 forced exercise on its program, join it! 

Voice Exercises - in the comfort of your own home, you can take Mary Spremulli's Voice Aerobics 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. Visit her website to learn more, you won't regret it.

On 9-18-11 we were sent a link for a pocket sized breathing exerciser:

Respiratory Muscle Strength Trainer, 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.

Saturday, April 2, 2011

Early Warning Signs of Parkinson's Disease

Precursor Symptoms of PD - What's the Tipoff? And What Were Your Earliest PD Symptoms?
In retrospect; in hindsight; if only I'd known; I wish I'd looked for more answers; why didn't the doctor say something?  I should have...done something more... 
If the precursor symptoms are recognized as Parkinson's disease, can early intervention at least delay the onset? 
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.
The biggest impediment to addressing the developing Parkinson's disease after the early warning signs or precursor symptoms appear is that we do not recognize them for what they are. We don't even know what they are.
  • Leg drag
  • Lack of Arm Swing
  • Loss of Sense of Smell - decreased sense of smell - phantom smells
  • Changes in Handwriting
  • Changes in Voice
  • Change in Facial Expression
  • Pain or achiness in the Shoulder or Neck, more common in women
  • Depression, anxiety, stress
  • Sleep problems - especially with especially with REM sleep or more specifically RBD sleep. Sleep issues may also include "acting out" during sleep: Yelling, kicking, punching. 
  • Signs of specific Vitamin Deficiencies: Ds and Bs especially
  • Sharp small pains - pinprick pains - or perhaps small areas of numbness
  • An odd type of vertigo - which may actually be Orthostatic Hypotension which is known to develop years before the actual PD diagnosis
  • Dizziness
  • Adding additional symptoms beginning 4-05-11 with THANKS to the folks at Patients Like Me
  • Urinary issues such as urinary incontinence or frequency
  • Impairment of color discrimination - may improve with levodopa
  • Fatigue - tiring more easily at routine tasks - lack of stamina - daytime sleepiness
  • Cramping
  • Rhinorrhea - that's a runny nose to most of us
  • Seborrhoeic dermatitis -  an autononic symptom, an immunodeficiency - flaking is often confused with dry skin - possibly seen as dandruff
  • numbness - usually in extremities
  • We would like to learn if people experienced any of the following as precursor - earliest - symptoms
  • Sleep apnea ?
  • Constipation
  • RLS - restless leg syndrome?
  • Excessive sweating - an autonomic nervous system dysfunction?
  • Personality changes or changes in Executive functioning
  • Hyperhydrosis or excessive sweating which can sometimes appear as Seborrhoeic dermatitis - might feel like hot flashes
  • Erectile Dysfunction
  • Vision issues such as dificulty focusing
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.  
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. 
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?
The doctor rules out a condition or two and then gives you the verdict: "Well, you don't have X*X?."  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 X*X?."   Many of us have been trained to accept this kind of negative diagnosis, but that's wrong.  We can all do better. 
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 X*X? and the fear of what comes next and we have to ask, "What comes next?"
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.
These studies represent a way in which people with PD can contribute.  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.
Listed at Clinical Trials.gov are three studies of especial interest:
  1. Investigate neurophysiologic tests that have the potential of serving as screening tools- New Haven, CT
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.

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.
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.

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 Forced Exercise?
Previous posts on subject:
Questions about Parkinson's Disease

You might also be willing to contribute to the knowledge base by registering to participate in an NIH study:
Study Link for Biomarkers of Risk of Parkinson's Disease at the National Institutes of Health. 
Check our this discussion of the Top Ten non-motor symptoms of Parkinson's disease from Dopadoc.

Thursday, March 31, 2011

Cogane Clinical Trials Phase II for Parkinson's Disease

The long awaited Cogane trial is recruiting

Is there a rainbow over the PD road?
 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 NCT01060878. 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.

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. 

NCT01060878  is sponsored by Phytopharm. The investigation of Cogane (PYM50028) in Early-stage PD is now recruiting at the following locations:

In the United States
La Jolla, Sacremento and Sunnyvale, California        
Manchester and New Haven, Connecticut
Chicago and Sprinfield, Illinois
St Louis, Missouri
Manhasset, NY

In Canada:
London, Ontario    
Ottawa, Ontario
Quebec City, Quebec

In the United Kingdom
Luton, Bedfordshire
Newcastle upon Tyne, Tyne and Wear

additional reading:
Cytoprotective effects of growth factors: BDNF more potent than GDNF in an organotypic culture model of Parkinson's disease
There is additional ongoing research: 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

Tuesday, March 1, 2011

Call on Congress to Advocate for Parkinson's Disease

 Take a few minutes to support PD
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 Call on Congress.

On Wednesday, March 2, 2011 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. 

While Parkinson's disease may discriminate about whom to attack, PD knows no political party boundaries. Call on Congress 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.

All it takes is a simple statement to your Congressman/woman begins with a single phone call or email in support of the passage of the revised National MS and Parkinnson's Disease Registries Act  (HR 1362 and S 1273) now known as the National Neurological Diseases Surveillance System Act of 2011-2012 S.425.  It will be introduced by Co-sponsor 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.

USA coast to coast
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.

This afternoon we "attended" the Parkinson's Action Network webcast, Research Public Policy Forum. 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.

Please remember to thank your legislator if you see your State represented.

Update:  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. Follow the bill so that you can send the necessary reminders to your government officials.

"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."

Monday, February 7, 2011

It's Hard to Sleep with Parkinson's Disease

More on Sleeping Problems and PD

Steve's sleep problem has reared its nasty head again.

Some sleep and some can't
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.

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.

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.

On a hot day, the only option
 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.

 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.

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 read the lists first - what wasn't I thinking?. The information abounds for gluten-safe alcoholic beverages.

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).

We often forget the association between depression and sleep problems; how do you treat your depression?

A helpful catnap
 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.

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.

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.

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.
Oh for a Cat Nap

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 breathing exercises 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 healthy breathing habits.

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.

additional reading:
A must read by Dr Robert A Hauser etal