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.

Dehydration and Parkinson's Disease

It's so easy to confuse PD symptom side effects with dehydration 

You don't have to be in a desert, the middle of the ocean, an athlete in training or even a gardner pottering around under a hot summer sun to suffer from dehydration.  Dehydration is always a risk of disease and aging.  For a Parkinson's disease patient it is very easy to misread symptoms of dehydration.  Dehydration is an urgent condition.

We've talked about the effects of weight loss on PwPs and some of the causes and effects in previous posts.  There is no question that some medications and improper diet can also cause constipation.  In all of these posts we have touched upon dehydration. Now it is time to get serious about the effects of dehydration, the symptoms, why they are easily overlooked in PD and why dehydration must be treated immediately. 

Water is 75% of our body weight. Wrestlers, dieters and models know this fact when they need to drop a few pounds quickly to make weight class.  In the body it really is "water water everywhere".  Water in the cells, the blood and in the spaces between the cells.  And that is what Mother Nature intended. 

It is easy to forget that a significant amount of water is lost every day when we breathe it out with every exhale, when we sweat and lose more water, when we urinate or move our bowels even more water is gone.  This lost water has to be replaced to avoid kidney damage or failure, cardiac problems, coma caused by reduced blood flow to the brain, and death as a worst case scenario.  Along the way there can be some very unpleasant problems.

Body chemistry is in constant flux and requires balancing to maintain homeostasis.  Parkinson's Disease is all about the loss of balance in so many areas.  Prompt treatment is the best possible way to approach restoration of balance. Dehydration is no exception.  It is crucial to avoid the effects of the loss of fluid balance as dehydration can acerbate existing Parkinson's symptoms and take you to a very bad place.

When concerned about urinary frequency, many people with Parkinson's simply stop drinking enough. There are Depends for that - not drinking is NOT an acceptable option.

Swallowing problems create another reason for fluid avoidance because of the fear of choking. 

Medication side effects can also contribute to to loss of interest in eating and drinking.  Another medication side effect is nausea (leading to vomiting) and diarrhea which deplete even more body fluids.

The problem is that when a PD patient stops drinking for whatever reason, additional damage is done to the kidneys and bladder, to the circulatory system as heart rhythm is affected, to the GI tract as constipation is made worse and the cycle feeds upon itself and to the brain.

Many patients can't tell you or won't tell you that they aren't drinking enough.  Some PwPs are so prone to depression or apathy that they just can't. Being dehydrated also feeds upon itself, as it progresses, you feel less inclined to drink anything.  So when symptoms are noticed, that's the alarm indicating it is time to look for more clues so that you can take action.

Some of the warning signs of dehydration are:

• Dry Mouth, Lips and Nasal Passages (can also be a side effect of the meds)
• Lack of Tears (and there are other reasons in PD)
• Muscle Cramps (always suspect fluid loss, potassium imbalance)
• Nausea leading to Vomiting
• Lightheadness - Syncope - Dizziness (can occur for several reasons)
• Blood pressure changes (both high and low can occur)
• Heart palpitations
• Feeling too warm (may also indicate fever)
• Lack of sweating
• Confusion (is not just meds, disease progression, or lack of sleep)
• Weakness (another sign of low potassium levels)
• Tiredness
• Lack of skin elasticity (a common and rapid symptom in the elderly)
• Changes in behavior and mood - irritability
• Darker colored or strong smelling urine (concentrated urine)
• Headaches
• even Allergy symptoms.

Although dehydration can cause dizziness which we often see as lower blood pressure, blood pressure may of necessity rise as fluid levels drop. Hyoptension or hypertension can occur and can create additional problems

Electrolyte homeostasis is effected.  These electricity conducting salts are found throughout the body in fluids, blood and skin and muscles.  Sodium, potassium and calcium are the salts most commonly out of balance in dehydration but chloride, magnesium and carbonate can also be affected.  We know how important electrical conductivity is for PD and how delicate that balance can be.  Electrolyte balances can be checked through blood tests ordered by your physician.

At the doctor's appointment when dehydration is suspected, blood pressure will also be checked, temperature taken, urinalysis performed  If the problem is too extreme or if swallowing is a serious issue, it may be necessary for IV fluid administration.

Don't wait for that appointment to make sure that the fluid levels are gradually increased.  Water is most important, ice chips, fruit juice, sports drinks designed to restore electrolyte balance, soups or broth, popsicles are fun and easy; jello has a high water content.  Since tea and coffee act as diuretics, they should not be included. You can also go online to find herbal remedies which might help to increase thirst as well.

When there are swallowing problems which prevent drinking, do not postpone the home vocal exercises, but also consider getting speech therapy.  In addition to exercise, address the eating and drinking issues associated with PD and consider the need to purchase drinking utensils which will facilitate holding a cup that doesn't spill.

Dehydration can sneak past a caregiver just as easily as it can the patient. If you notice changes, are aware of water left in the glass or consistent lack of thirst, it is time to rehydrate. Don't wait - Drink up.

An observation: 
In the dehydration process, there seems to be a connection between not drinking enough and not feeling thirsty. 
As a caregiver you may find resistance in your patient because they do not perceive what you actually can see, that they simply don't have a sufficient fluid intake. 
As a patient, the less you drink, the less thirsty you feel and you need to help your body...your self...by supplying it with the necessary fluids so that you do not become sicker. 
It does not take long for confusion and disorientation to appear, not to mention many of the symptoms listed above.

On a personal note:
Our beloved Harry, the Lab mix, became quite sick a couple of months ago.  I knew he was sick but the diarrhea (which I addressed immediately) didn't immediately signal me to check his skin resiliency and then the alarm went off.  He who normally drinks like a horse, had stopped. I realized it when I didn't have to add a quart of water to the cat fountain a couple of times a day. 
A pinch of his skin prompted me to whip out some chicken rice soup which he loves. I kept diluting it but he didn't care, it was wonderfully flavored "people food" and he drank and drank...not all at once but gradually.  He went through a half gallon over two days before he began drinking from his water dish and the fountain.

On an informative note: Apparently the chicken soup had a good electrolyte balance for Harry. Had he been a human child, he would have been on Pedialyte or an electrolyte drink such as Gatorade. Or I would have made a drink for him using the following formulation:

• 1/2 teaspoon salt
• 6 level teaspoons sugar
• 1 quart (1 liter) drinking water

Change the formula above and you can actually do more damage than good. For an adult daily fluid intake you should multiply that by 2 or 3. I suggest dedicating one ice cube tray (if you have any) and using at least 1 quart or more to make ice cubes. We have found that Steve prefers very cold drinks when we feel his fluid intake is dropping.

Addendum:  Steve suffered another bout of stress induced dehydration in late July of 2011. We caught it early but he relapsed and we are still working through those issues which have had a swift and profound effect on his cognition much like his first bout.