Living Well with Parkinson's
HOW I LIVE WELL WITH PARKINSON’S
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By Garry Ballenger
What to do about Parkinson's, the big picture.
Those of us with Parkinson’s are fortunate to have a world of people willing to help. The big donors, Michael J Fox, Davis Phinney, The Gates Foundation, The National Institutes of Health and other national Parkie organizations are raising money to support the search for a cure. There are also local organizations. The Parkinson Association of the Carolina’s (PAC) is the local organization where I live. PAC is here to support people who have Parkinson's now. There is a real tension between these two goals. Both are the right answer. What's important is that we pick a path and pursue it deliberately, as if we were doing it on purpose. Given the time it takes to get treatment from basic research to FDA approved therapy I am unlikely to survive long enough to benefit from the cutting edge therapies. What I can do is have a great life living well with Parkinson's taking advantage of all that the PAC can help me with.
My Adventure
I was diagnosed with Parkinson’s in 1999. That was 18 years ago. I was 44 years old. Like most of us I was misdiagnosed for a while. I had acquired a resting non dominant tremor. My tremor was diagnosed as a benign familial tremor. Parkinson's being Parkinson’s new symptoms appeared. When the stiffness in my right hand reached the point where I could no longer type more than 3 letters I was referred to a neurologist. It took my first neurologist ( I have had 5 neurologists and 1 neurosurgeon) all of 5 minutes to tell me that I had Parkinson's. The question that immediately came to mind is what do I do now.
What do I do now. I could go home and sit on my couch. I had always lived an active life so a big change to a sedentary lifestyle just did not feel right. There were things I wanted to do that I did not know I wanted to do. Also I was now living with a degenerative neurological disease that I knew nothing about. What to do. My parents had raised me to be relentlessly, obnoxiously positive. So I made a decision to do the most positive thing I could think of. I would do everything, go everywhere and read anything I could find about Parkinson’s. Sounds like a good disease management plan doesn’t it. The way it would work out, I would not have undertaken many of the parts of my adventure without the impetus Parkinson’s gave me to get out and go.
I had a rough idea of a plan but were there any limitations? My 2nd neurologist told me I could expect 10 good years. The interesting point here is that all my neurologists told me the same thing. Today I still have an expectation of 10 good years. I have a rolling 10 year window of good years. Basically I could do whatever I felt up to. Now what I needed was good mid life crisis. My first effort was to buy a car I had always wanted. I found it for sale on the internet. A red 1968 Triumph GT6. I flew to New York with a cashiers check and would have driven it home to North Carolina but New York's Dept of Motor vehicles wanted my seller to have a little more paperwork. The car was delivered to my house on a car transport. That was fun for a while but there seemed a little more to do. A friend and I got into a conversation about motorcycles. The next thing I know I was on a bus to West Virginia to buy a Honda VTX 1800. What do you do with a big motorcycle? You take a big trip. I road the VTX from Charlotte to Eugene, OR and back. I was camping so I rode from KOA to KOA. It was a great trip. It was one of those things you wait for the right time to go and , but for Parkinson’s the right day would never come.
There were more adventures. I acquired a Deep Brain Stimulator. I got married to wonderful person. A trip to Scotland for a World Parkinson Congress where I managed to squeeze in a round of golf at St. Andrews deserves a mention. As does a drive from Charlotte to Montreal in a convertible Jaguar XJS to attend a World Parkinson Congress in 2013. The World Parkinson Congress in Portland was another great trip. Let's look at what I am doing now to keep on living well.
Since I have stayed true to my original goal to do everything, I am busy. I open the YMCA Tuesday, Wednesday and Thursday because I have to get up early and interact with a large group of people. I lead a support group because I was asked to and because it forces me to speak in front of a crowd once a month. Monday is Golf and Deep Stretch Yoga. Tuesday is a Parkinson’s Circuit workout class as part of a Renew program at the Y, Power Vinyasa Yoga and a Vipassana Meditation class. Wednesday is another Vipassana Meditation class. Thursday is another renew class, this time it is a TRX class. Friday is Golf. Saturday is Chair Yoga for people with Parkinson's . Sunday is a day off. Yes I am busy and it is all part of my strategy of managing Parkinson’s by doing everything. As near as I can tell it is working.
posted by GarryB at 8:34 AM
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