Tuesday, August 1, 2017

The Blue Water Navy Vietnam Veterans Association Has a Serious Request
The Association Needs Veteran and/or Family Assistance

The Blue Water Navy Vietnam Veterans Association posted a link several weeks ago.  Below is is their request:

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". 
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.

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.”

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.

Here is a link to the survey.  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.

I should have posted this earlier. For that, I apologize.

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.