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.

Pain and Parkinson's Disease

PD Is No Laughing Matter but Smiles and Laughter Can Help Ease the Pain
My husband has PD and I can tell you that his body aches nearly every day. As a matter of fact it was an odd sensation/pain running up his thumb that took him to the doctor for a diagnosis.

When you think about the variety of PD symptoms it is not surprising that there would be pain associated with increasing muscle stiffness. Although not everyone experiences all of the wide assortment of symptoms, as the disease progresses, probably every PWP will experience stiffness. And with the stiffness, the dystonias - the unwilled muscle contraction - comes twisting and pain, cramping and pain. But there's more.

Of interest is that even though Parkinson's disease usually begins unilaterally, pain can be bilateral. Also of interest is that men with Parkinson's have a higher perception of pain - lower pain threshold. Not by much, however. Steve's massage therapist says that the tension in the chest muscles on his bad side causes a pull and therefore pain on the good side.

The body posture of the Parkinson's shuffle can cause pain in the neck, shoulders, back, hips as the body maligns itself. Headaches are another result of this kind of pain.

PD pain can come from non-motor areas as well. There is neuropathic pain which can cause tingling, burning, numbness, sharp pain. The Parkinson's Disease Foundation breaks the causes of PD pain into five areas: Musculoskeletal, Non-Motor, Dystonia, Akathisia "discomfort due to extreme restlessness" and "a rare pain syndrome known as "primary" or "central" pain, arising from the brain." Depression can also cause and/or heighten sensitivity to pain.

Pain is not a punishment for having a disease. It is a symptom and/or a side effect and it should be addressed by you and your doctor. In some cases pain could be a side effect of medication or medication "off" times but by adjusting the dosage the pain can be lessened.

Lowering stress levels can also reduce pain. Adjusting the body through exercise and massage therapy can make a real difference. To counteract the pain of rigidity, my husband goes to exercise therapy and gets a weekly massage specifically addressing the target points of his stiffness: his bad side shoulder, neck and left leg in the course of the full massage. In between we have small hand held massagers that really do help his neck and shoulder even when only used for a few minutes at a time. At night he uses a heated mattress pad. Electric blankets don't work as well here because dogs have an affinity for chewing them...don't ask.

He does his breathing and voice exercises but not as often as he should. He does those not only to be heard and understood but to avoid the panic of choking and the fear of dying that way. So he is relieving a stress producer as well.

I can't stress the importance of exercise to stretch the muscles, help the body resist the stiffness, punch up the endorphins, resist the pain. Nor can I overstress the need to warm up slowly...not to hyper-extend...because you've already got enough pain. About exercise: ease into it and then persist. You may see some results and then plateau - that doesn't mean it isn't working. Just stay at it. But mean it. Don't just go for the motions. Don't lie to yourself. Don't be an exercise potato. You actually have to work at it. Otherwise you might as well just watch a a cooking show instead of an exercise video.

There are other courses of treatment including Forced Exercise which if done properly can abate symptoms for a couple of weeks: Aqua therapy (swim therapy); Dance therapy - amazing to see PWPs leave their walkers behind to dance - Breathing and Voice therapy, and one of the best, Yoga. Yoga for movement, posture, balance, mind, flexing the right muscles to for relief of constipation, breathing, anxiety-tension relief, depression all of which aid sleeping.

Who would have suspected that the PD associated sleep disorders might actually be a contributory factor to increased pain. A cancer pain study conducted in Tennessee recently demonstrated that lack of sleep/sleep disorders may make pain worse in cancer rather than the other way around which was expected.

Successful Deep Brain Surgery can result in the reduction of both meds and symptoms. This reduction can mean a reduction of pain or the absence of pain. Permanent acupuncture can also result in a reduction of symptoms and consequently... There are other therapies in the pipeline which may seriously impact symptoms with the same pain reduction ensuing.

A few words about TENs machines (transcutaneous electrical nerve stimulation) I can't find anyone who has had success, including Steve, using one. If you have used one, we'd all like to read about your experience in the comments section.

We know that cannabinoids and cannabis components do assist with certain kinds of symptom relief as an anti-spasmodic and muscle relaxant. Parkinson's Disease is on the medical marijuana list in the states which have that understanding. In a 2004 study which involved THC, a cannabis component, demonstrated the possibility that it will help with PD pain as well as ALS spasms. At present Riluzole (the only FDA approved med for ALS) extends life from 2 - 3 months. In mouse studies, THC prolonged life for a human equivalent of 3 years or more. There are several cannabinoid receptors in the human body waiting to help with pain and stress reduction.

Laughter is a great stress reliever. If you've ever laughed with your entire body and soul, you know what I mean. You feel euphoric afterwards. Because that laugh really got your endorphins going. With those natural pain killers aroused everything else disappeared into the background for a few minutes. The smiles can come from whatever, wherever. We need them. For big smiles I go outside to watch the dogs play together. Sometime Rita picks up one of her stuffed toys just to get Harry to chase her or play tug of war...which accounts for the loose heads, limbs and stuffing around the yard. The day she "found" the dead squirrel, I quickly called a halt to that tug of war...but we were laughing anyway.

So when you hear people say that you need a sense of humor to have Parkinson's, they're not kidding around...or maybe they are.

references and additional reading:
http://www.pdf.org/pdf/Pain%20in%20PD.pdf
http://www.cmellc.com/geriatrictimes/g001029.html
http://en.wikipedia.org/wiki/Laughter

Dancing Away the Parkinson's Shuffle

Join the Dance of  PD Neuroprotection

An inovativative program of the Brooklyn Parkinson Group and the Mark Morris Dance Center, Fort Greene, Broolyn has been bringing together professional dancers and people with Parkinson's Disease since 2001.

The first of its kind, the program was initated by Olie Westheimer, founder of the Brooklyn Parkinson Group, because she believed that dancing could improve the lives of patients treated by her husband, Dr Ivan Bodis-Wollner a medical expert on Parkinson's. He has said that "movement like dance exercise seems to be neuroprotective."

Patients wait for the class to begin in a spacious, brightly lit studio with their canes, wheelchairs and walkers. That don't look ready to dance but they are. Parkinson's patients, it turns out, can dance better than they can walk.

To see for yourself, take a look at this Mark Morris Dance Group website where you can read, see photos and watch the videos - this is good stuff:

Did you notice that there are chair exercises which involve the entire body? I was excited to see that some dancers did not have to adopt that wider standing stance for balance. They must have already integrated sighting for balance into those exercise. You can see improved coordination from the rhythmic movement.

Dance for PD is an outreach collaboration between the Brooklyn Parkinson Group, a chapter of the National Parkinson Foundation and the Morris Dance Group. Classes are provided weekly not only can people with PD attend but also their caregivers.

The classes led by professionally trained dancers teach using dance exercises which addresses not only balance, muscle stretching and strengthening but also how the dancer incorporates hearing the music with imagination, touch and sight to contol movement. What they don't have to teach is the joyful release which dancing can bring.

The Mark Morris Group has made their services available on the west coast, in Canada and the UK. Plans are underway for more PD dance training workshops.

additional resources:
From NPR: Parkinson's Patients Find Grace in Dance
Parkinson's and dance: An Unusual partnership unites
Dance for Parkinson's Disease Comes to Bay Area written after this post

SHALL WE DANCE?

The Value of Dancing for Parkinson's Patients

Oliver Sacks in his wonderful book Musicophillia writes about music "that the parkinsonian needs, for only music which is rigorous yet spacious, sinuous and alive, can evoke responses that are equally so. And he needs not only the metrical structure of rhythm and the free movement of melody--its contours and trajectories, its ups and downs, its tensions and relaxations--but the 'will' and intentionality of music, to allow him to regain the freedom of his own kinetic melody."

Research at St Louis University show that Parkinson's patients who dance the Argentine Tango developed better mobility and balance over the 20 week research period where one group of patients were given excercise classes and another was given Tango lessons.

Tango classes for PD patients are starting up across the USA and the world from New South Wales to Chicago. Some of the dancers could not walk without the help of a cane or walker but can take the dance floor and immediately be able to move gracefully around in a close embrace tango.

It is the kinetic response to the music/the rhythm of the music which may evoke this ability.

Kinetic energy, defined chemically as the work required to accelerate a body from rest to its current velocity - in this case movement. Once gained, the body maintains the kinetic energy unless or until its speed changes...the dance ends.

The term "kinetic melody" was coined by the Russian neuorologist Aleksandr R Luria studying automatic rhythm in the physical act of writing in The Functional Organization of the Brain. http://www.comnet.ca/~pballan/Functsystems.htm
Although written over 40 years ago the original observations and subsequent development may help to offer part of the physical explanation.

But what else is there about the tango that reaches people?
Is it the social aspect of dance?
Is it the archetypal beat of the tango which insinuates itself into the dancer's very being leaving him/her ready to be seduced by its rhythm?
When you listen to a tango, the music describes the dance and its vitality becomes the dancer.

Researchers don't know what causes tango to control PD symptoms so successfully but patients who have learned the long slow walk-likesteps don't care, I suspect, as they move slowly around the floor.

Want to give it a try?
Here are some links to the basic Tango steps:

To read aloud: http://home.att.net/~larrydla/sixty_second_tango.html

Videos to watch: http://www.expertvillage.com/video-series/773_tango.htm

And here's a link to a site with music you can download and lots of interesting
info about the Tango.
You don't have to rush out to buy the shoes but you will enjoy this site: http://www.totango.net/keys.html
You will also find the advice to take a few relaxing breaths before you begin.

To learn the steps, repeat them to yourself a few times a day while you feel where your feet, legs, arms, torso should be and don't forget to repeat them before you go to sleep. From your kinetic memory you should be able to tango in your dreams as well.