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, The Michael J. Fox
Foundation, The Davis Phinney Foundation, Parkinson's Foundation, 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 Department 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 have come.
There were more adventures. I acquired a Deep
Brain Stimulator. I got married to wonderful person. A trip to Scotland for the
Second 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 the Third World Parkinson Congress in
2013. The Fourth 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.
https://www.worldpdcongress.org/home/2017/12/15/what-to-do-about-parkinsons-the-big-picture?platform=hootsuite
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