A Personal Reflection on Living With Parkinson’s Disease

Editor’s Note: In this guest post, Bill Patterson offers his perspective on living with PD. He shared some of his thoughts on a recent road trip to houses of worship sponsored by the Katz JCC in Cherry Hill, NJ. 

Did you know that in the United States about one percent of everyone over 60 has Parkinson’s disease? (And I am over 60.) We really don’t know that for sure because we have no formal registry, but it is the popular estimate. In 1817 British surgeon, James Parkinson, wrote An Essay on the Shaking Palsy and because he did such a fine job (for the day) in observing and describing traits common to people with a “shaking palsy,” the father of modern neurology, Jean Martin Charcot, in 1872 named the syndrome after James, calling it “Parkinson’s disease.”

It is well known. But it isn’t.

What I mean by that is that most all people in the US seem to have heard of it, but they really don’t know very much about it. I had been like that. We know it has afflicted high-profile public figures. We know about Mohammed Ali, Pope John Paul II, Janet Reno, and Michael J. Fox. Many of us have had relatives who have been afflicted with this. But even many doctors, even newly educated ones, know relatively little about it. One recently graduated doctor told me that in medical school she had only studied about Parkinson’s disease (PD) as part of one lecture. That is not nearly enough information for doctors to know so that they can refer patients appropriately.

And by the way, I am not a licensed medical provider and although it might seem like it, I am in no way providing advice about treatment strategies other than to say what I am doing for myself; if you have been told you have PD or suspect you may have it, remember that you are an individual and your situation may vary considerably from mine. You should consult the licensed medical provider of your choice whom you have reason to trust.

In early 2010 I was feeling particularly depressed. I found that riding an exercise bike helped my mood considerably for at least a day or two.

I was diagnosed with PD later on in 2010. Immediately after my initial diagnosis (in April of 2010 which I thought was a diagnosis of PD but was in fact a diagnosis of less specificity that subsequently became a diagnosis of PD) I decided to learn everything that I could about the disease. I grabbed whatever I could to learn. Inevitably there were sources of more credibility than others. Be warned that researching something like this on your own can lead to blind alleys and unscrupulous characters. Some of the less credible sources even have medical degrees. But I learned.

The PD experience varies from patient to patient, but there are some generalizations that can be made:

• it is progressive – it always gets worse;
• it is insidious – the non-tremor-dominant subtype often starts slowly on one side of the body, it makes you feel progressively paralyzed, and your balance isn’t what it used to be (with a tremor dominant subtype you might first notice a twitch that keeps intermittently happening, stopping, and happening again not getting better but always getting worse);
• it is incurable – there is nothing PROVEN to cure it, or even slow its progression much less stop it[i]; and
• it moves through stages and can lead to patients being wheel-chair bound and demented.

Depending on your literature source, there are three or four cardinal signs, some groupings of which can lead to a diagnosis:

• tremor (four to six times a second movement of a limb or similar body part),
• bradykinesia (slow movement which to me felt like partial paralysis),
• rigidity, and
• postural instability.

You don’t have to have a tremor. In fact, people with the non-tremor-dominant subtype of PD usually experience faster progression.

There are, however, treatments. Broadly they are prescription medication, over-the-counter medicines, nutritional supplements, lifestyle practices, and physical exercises.

Exercise

In 2009 a paper was presented to the Congress of the Movement Disorder Society in Paris (PD is a movement disorder) on the subject of bicycle riding as a treatment for PD. It came from a PhD research scientist at the prestigious Cleveland Clinic, Dr. Jay Alberts. Alberts showed that for his sample cohort of PD patients, riding a stationary bike at a high cadence could alleviate symptoms by 35 percent, as opposed to 38 percent from the best-known medication.

There is also a large amount of academic research on animal models of PD and the effects of vigorous aerobic exercise.

Developing My Own Exercise Program

Following my diagnosis I began a multifaceted treatment methodology. It took two weeks (it could easily have been much more) after my initial diagnosis from a general neurologist for me to first be examined by a movement disorder specialist (a neurologist with specialized training for diseases such as Parkinson’s). In the mean time while I studied everything I could, I began to put together my own exercise program involving intense aerobics.

To get started I took some information from those experiments in Cleveland. Those research subjects had ridden for an hour that included a 10 minute warmup period and a 10 minute cooldown period, and in the intervening 40 minutes rode at at a cadence of between 80 and 90 revolutions per minute (RPM). These sessions were held three times per week. They had found that many PD patients had trouble keeping up that pace, and so for the experiment they rode on tandem bikes (bikes for 2, but on stands as stationary exercise bikes so everyone stayed in the lab). The patients (a.k.a. research subjects) sat on t he back seat (the “stoker” position) pedaling the back crank. On the front crank, helping keep up the pace were healthy trainers who could maintain the pace but also ensure that the research subject did some of the work (just having someone else move your limbs doesn’t help you).

Not having those specific resources, I found it difficult to mimic what they had done.

Since I was a member of the JCC I naturally began using its equipment to create as close an exercise regimen as I could. The Katz JCC has excellent equipment, including upright and recumbent stationary cycles. And I am also very lucky in that I still have the ability to ride at a high cadence without assistance from another person on a stationary tandem cycle; I can use an ordinary stationary cycle.

The Katz JCC is a great place to exercise. This is not just because of the first class equipment here but also because of the camaraderie of the people. Lewis Katz and the other contributors have clearly done a Mitzvah in enabling this organization to do what it does for all kinds of people.

My Routine

Since April of 2010 I have been exercising nearly daily in this manner. To keep myself motivated I (1) think of what I felt like before I started doing this (it was bad), and (2) I listen to high tempo dance music (from my ethnic group, fiddle music).

There is a considerable volume of literature[ii] on the disease modifying (hopefully for the better) effects of vigorous aerobic exercise in animal model experiments.

Now there is nothing that is accepted as PROOF of this effect by the scientific community. However, although I have a science degree, I also have a business degree. One thing we learn in business is the process of “making decisions under conditions of uncertainty.” This involves assessing the odds of the set of particular outcomes and the value of those outcomes were they to actually happen. So I look at it this way: the exercise may help me slow the disease and if it does the benefits are fantastic. If it doesn’t help me slow the disease, it still helps alleviate symptoms including my mood: I feel great!

The ‘Sacred Aging’ Part of This

The human body is the temple of the human spirit. By doing things that help my mood, I help myself to be nicer to people. By being more mobile I help my family. Further, anything that helps my dopamine supply helps me relax, and relaxing is key to being able to meditate, to concentrate, and to be of sufficient mental health to worship. This helps me age in a better and more sacred way.

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For more information go to www.pedalingforparkinsons.org.

 

[i]       I emphasize the word “PROVEN” because there is considerable ongoing research that strongly suggests some mechanisms of slowing the disease, notably intense aerobic exercise.

[ii]      See http://www.researchgate.net/profile/Giuseppe_Frazzitta/publication/236103370_The_Beneficial_Role_of_Intensive_Exercise_on_Parkinson_Disease_Progression/links/00b495162157fdbf06000000 or enter “literature survey animal model experiments exercise parkinson disease modification” into a search engine.