Monday, April 16, 2018

Living Well with Parkinson's

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.


Post a Comment

<< Home