April 20, 2016
Broomfield
April is National Parkinson Disease Awareness Month.
Parkinson Disease (PD) is a neurodegenerative brain disorder that affects an individual's muscle movement. The most noticeable symptom is a resting tremor, but, it should be noted, not all patients experience that symptom. Possibly you have observed a shuffling gait, and if you know a person with PD, you may have noticed their soft voice or balance difficulties.
There are currently, 1,000,000 Americans living with the disease, and 17,000 of them live in Colorado, according to the Parkinsons Association of the Rockies (PAR). Those numbers are probably on the low side.
PD affects virtually all of the autonomic nervous symptoms. For example, it is difficult to exercise hard enough to raise the heart and respiration rates. Digestion is a problem as the disease affects these functions as well. Depression, anxiety and even apathy are other non-motor symptoms. I was diagnosed almost exactly 4 years ago. While PD is not generally considered an inherited disease, my father had PD, so I was aware of some of the early signs.
From the time he was diagnosed until now is more than 25 years. What has been learned in that passage of time is this: the disease is more complicated that it was believed then. Some neurologists refer to PD as the "snowflake disease" as no two patients exhibit exactly the same symptoms on the same timetable. Further, their treatment regimen may be quite different.
The numbers of affected people has attracted large amounts of research. New therapies and better means of administering the standard pharmaceuticals are being developed. Basic research promises earlier diagnosis and even predictive markers, as several gene mutations have been shown to be linked to PD.
There is one therapy that is gaining more and more acceptance every day, and that is the role of exercise. In my father's era, exercise was not even recommended. That has been completely turned around. My own experience has been a noticeable reduction in motor symptoms (as well as an improvement in general well-being) since I have been participating in exercise programs.
Michal J. Fox once said, "Parkinson's is like a bus coming at you. You don't know if the bus is going to flatten you or strike you a glancing blow." If I may add to his insightful comment, I would say that an exercise program enables you to run away from the bus. It is inevitably going to hit you, but exercise postpones the symptoms, buying precious time.
Support groups are an extremely important part of living well with PD. Broomfield has an active support group that meets at the Community Center on the first Tuesday of every month at 10:30 AM, the group also sponsors a meeting for caregivers who often bear much of the burden of caring for someone with a progressively degenerating disease. That group meets the Friday following the Parkinson's Support Group (the 1st Friday) at 10:30 at the Community Center.
It will sound odd to say this, but most agree that if you are going to have PD, this area, (Broomfield/Boulder) is a good place to have it. What I mean by that is there are a variety of exercise programs that are geared specifically for persons with PD. Gary Sobol's Parkinson's Network has classes twice a week at the Broomfield Community Center. Also in this area, there are dance classes, a boxing group called Power Punching for Parkinsons, and more. The Davis Phinney Foundation which has as its mission to help people live well with PD is based in Boulder, even though it is international in its reach.
I'd like to end on a positive note. Very few people actually die of Parkinson's Disease. Most people die with PD, and their quality of life can be quite good. In spite of not having a regular PD-specific exercise program, my father lived for 22 years with the disease, and continued to play golf up to the last two years of his life. That is not at all unusual. With a good motion disorder specialist and a great support group like we have in Broomfield, plus an exercise program, many good years are beyond a diagnosis.
http://www.topix.com/health/parkinsons-disease/2016/04/local-perspective-on-parkinson-disease
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