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19 Years Into Diagnosis, What I did Right, and What I Got Wrong

Monday November 30, 2020

A month from now will be the 19-year anniversary of my diagnosis with Parkinson’s Disease. This entitles me to Senior Parkie (SP) status, at least in the circles I run in. And speaking of running in circles, I did my share of it on first getting the news that I had a disabling progressive and incurable disease. Looking back from the lofty vantage point of my 19 year-old diagnosis, certain actions and decisions emerge as clearly constructive, and others as less so. In hopes of sparing those of you who are less advanced along the Parkinson's path some avoidable misery, here are major issues I got right, and things I got wrong.

The most pain I experienced came from a lack of knowledge about Parkinson's specifically, and the larger mystery of how my individual case would play out. The first major thing I got wrong was to prematurely conclude I was utterly FUBAR, that the good part of my life was over, and that the future was unremittingly grim. Well, good news for you who are recently diagnosed: I was wrong about that., and bought a ton of advance misery from my imagined bleak future, needlessly subjecting myself to unnecessary agony. In fact the past 19 years have been more fruitful and productive than I could have imagined. So, point number one is don’t freak out, the situation may not be as dire as you believe.

Thankfully I almost instinctively found the antidote for the fear that comes from ignorance, I went on a learning binge about every aspect of the disease, burning up the Web looking for Parkinson's information, and eventually traveling thousands of miles to attend the world Parkinson’s Conference in Washington DC. I was on the hunt for something, anything, that could give me leverage over Parkinson's. I returned from the conference with my first glimmer of genuine hope, thanks to Dr. Dave Heydrick, who presented  a talk on all the things that were coming that held promise for coping with Parkinson’s. The spark of hope I brought home from the conference makes learning all you can about Parkinson's the second point.

Another early mistake I made was avoiding attending a support group. My reasoning was simple. Why attend when I was only going to be frightened by seeing advanced cases shuddering uncontrollably, drooling, shuffling and exhibiting other depressing symptoms? When I did finally go to the local group, I was surprised and encouraged to see the number of people who were handling the disease well, and got to know and admire many people outside my usual circles that I would never otherwise have met without the support group. Therefore, the third point is attend a support group if one is available. If one is not available, consider starting one up. It can be as simple or elaborate as you wish to make it. 

In addition to the relief at seeing people coping well I got a good tip from one of the scarier group members: don’t put off speech therapy. This advice can be generalized into “Don’t put off any therapy.”  The sooner you engage any Parkinson's intervention, from Deep Brain Stimulation to a good exercise program, the better your long-term outcome will be, and the less drastic your decline over time. This makes point number four, early intervention leads to a smoother long-term ride with Parkinson’s, actively confront the condition. 

And speaking of activity, when I was initially diagnosed, an urgent voice in my head told me “You have to exercise, if you don’t, your downward spiral will be appallingly steep.” This turned out to be profoundly true, and the voice in my head is now backed up by numerous studies about the benefits of exercise for Parkinson's. In addition to working to reduce motor symptoms like slowness and tremor, it is one of the only treatments we have that addresses the non-motor symptoms of Parkinson’s, like loss of balance or depression.  That makes “listen to the voices in Pete’s head, exercise, exercise, exercise” the fifth point I want to underscore.

The sixth point is don’t let Parkinson’s tell you what you may or may not do. One of my chief joys in life is bicycling. I let Parkinson's bully me into forgoing it for a season, convinced that my balance was too compromised for me to ride without falling. When I later discovered I could still ride without significant difficulty, I was relived, as well as chagrined at letting Parkinson's fake me out of participating in one of my favorite activities. The only way to know if your case of Parkinson's will preclude you from some activity is to try it and see what happens. But don’t assume the worst is true, or that you cannot recover a skill in some form or other. Years after this incident I have expanded my bicycling to 12 months of the year , and have ridden over 1,000 miles in 2020. Shutting you down is Parkinson’s aim. Don’t make it any easier by shutting yourself down.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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