Today marks the two year anniversary of my Parkinson’s
Disease diagnosis. While the first year was mostly spent with coming to terms
that I have Parkinson’s, the recent year was focused on gaining stability and
being more social about it.
Stability has been mostly achieved, when I discount days
where “uncommon” activities, like flight preparations or large family events,
cause me to have a harder time functioning with limited symptoms showing. An
unchanged level of medication for this year keeps me able to work at almost
normal intensity, which, if you know me, is rather high. The main problem for
me is the very limited usability of my right hand, making handwriting extremely
hard and exhausting and typing on the computer more of a left-hand-only
activity. Fortunately, my work involves a lot of thinking as well, 100
intelligent words are worth more than 1000 blah-blahs.
Stability, on the other hand, has also been reached by
cutting back on certain activities, which saddens me quite a bit. Photography
has taken a backseat, for months I have neither taken nor published any new
works, with very few exceptions. And for about half a year, if not more, my
participation in various social sites was close to nil. I also often worry
about the future, mostly concerning questions like “how will I progress?” and “how
many good [relative] years do I have left?” Any day on which I am even only
slightly off my normal level of symptoms causes a mild panic and quite a bit of
useless worries and stress.
Yet, during the last year I also managed to improve and not
only maintain the status quo. I am working out now, an activity that I never
liked much, and I see a Physical Therapist once a month for extra credit. This
certainly has made it possible for me to regain some of the strength that I had
lost prior, even some that I never had before.
On the same note, improvements on a mental level have also
been made. A major factor here has been that I dared to open up to other Parkinson’s
Disease sufferers, or “Parkies” as we as we refer to each other affectionately.
This was made possible when I met a person who happens to run a group for Early
(or Young) Onset Parkinson’s Disease victims [YOPD] on Facebook and invited me
to join. There I met a whole variety of people, some as young as 20something,
and some much worse off than I. Learning from these fellow Parkies that I am
not alone, not even in my darkest thoughts, is the biggest improvement to date,
they truly understand me like no non-suffer can (although some, like my
daughter, come pretty close).
My activity in this group has also other positive side effects;
I can feel the urge to rekindle my participation in other social sites. If it weren’t
for the darn typing and a boatload of work [at work] I already would be fully engaged
again! A loooong Winter here in the New
York area is now finally also slowly coming to an
end, hopefully giving way to some good opportunities for photo shoots. Oh, and
speaking of New York, seems like I will meet thousands of Parkies when my
family and I will participate in this year’s Parkinson’s Unity Walk in beautiful
Central Park in Manhattan.
With that said, I hope to have many more years of writing
about my anniversaries, maybe one of them will finally mention a cure and reset
my counter to “year one after Parkinson’s!” I keep my fingers crossed!
Ingo
