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.

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