Well, crap. I’ve got Parkinson’s Disease (PD). So what to do now?
A year or so ago, I started
having balance issues. If I was walking
backwards and my heel got caught up in a rock about the size of those gumballs
they sold for a quarter (at least in my day), I was on the ground. Walking a straight line was impossible. If I was walking from Walmart to my car in
the parking lot, it took about 15 extra steps due to walking in a curve.
When I was about 3 or 4 years old, I stuck a
crayon in my left ear; as a result, I had significant hearing loss in the upper
frequencies. I’m sure that didn’t help. And since I already had tinnitus, we’d thought
maybe the symptoms were due to inner ear problems.
I was surprised to find that
there was a therapy outfit that dealt specifically with problems like balance. In the vernacular of my drill instructor in
Marine boot camp, it was determined that I was screwed up like a soup sandwich. Well, it was something like that.
For a number of weeks I did exercises that
were supposed to help with balance issues.
I also went to an otologist (ENT doc) to see if there was anything
mechanically wrong with me. Nothing turned up.
The balance therapy helped a
lot. So much so, that we thought we’d
solved the problem and I was discharged from therapy. And for a while I was pretty much back to
normal, whatever that was.
But the
balance issues eventually started to resume and invited another problem to come
along for the ride. Different parts of
my body…hands, arms, face…would occasionally involuntarily twitch. If I was holding on to a drink, I had to hold
on with both hands. Even then, I dropped
drinks every now and then. So. Time to see a neurologist.
The neurologist listened to
the laundry list of symptoms, looked at specific blood work, and told me I had PD:
Doc: You have Parkinson’s Disease.
Me: Well how sure are we? Is there a margin for error?
Doc: No. I’m
positive. You have Parkinson’s Disease.
Me: Well is there even a chance it was something
else? Mayber 5 or 10 percent?
Doc: No. Give it up. You have Parkinson’s Disease.
Of course, I knew there was
some kind of margin of error that the doc’s 20 years of experience dealing with
neurology stuff just wasn’t aware of. Still,
I went ahead and started taking the Gocovry he prescribed. He said it was a newer (and OMG expensive)
drug on the market. I started having
fewer falls and balance issues, but of course that was due to me just being
more careful.
After a few months, I decided
I could stop taking the Gocovry. And for
a while, everything was fairly ok. Still
had to be real careful, but ok.
Eventually the symptoms resumed to where I took all the experience and
knowledge I had in the nervous system, and started taking the Gocovry
again. I knew without a doubt that I had
discovered an additional off-label malady it treated in addition to Parkingson’s
Disease. This, in spite of all the tests
required to bring a drug to market that the FDA would approve for very specific
issues.
I was right. The balance issues and jerky limbs subsided
significantly. Until I ran out of
Gocovry. And all the symptoms came back
with reinforcements. This time I had
difficulty concentrating and focusing in addition to falling on my ass a
lot. I’ve been playing guitar for about
55 years, but now it was hard to play. I did what I should have done a long time ago
and looked into the symptoms of PD, and there I was. I’m surprised there wasn’t a picture of me
there as being the perfect example.
I realized I had gone through
the 5 stages of grief but going from denial straight to acceptance skipping the
middle three. Now I’m going to brag on
myself a bit. I calmly decided on what my
course of action was going to be, moving forward. One of my favorite sayings (I got a million
of them) is “there’s no situation so bad that it can’t be made worse by panicking.” I then had to figure out who was I going to
tell.
I told my wife. She was with me when the neurologist told me
what I had, but in spite of being a very competent nurse practitioner with
plenty of nursing experience, she had previously agreed with me that I really didn't have PD (yeah, right)…it must be something
else
I told my first boss as a brand new
nursing home administrator. He hired me
20 years ago, and I worked for him for about 3 years until he went and bought his
own nursing home. I couldn’t get my mind
around the fact that communicating with the chain of command is 180 degrees
opposite to the way it was done as a chief petty officer in the navy, so naively,
I pointed out many problems with how things were done not just to him, but to
all levels of the chain of command. In
spite of those levels of the chain of command telling him he should fire me
(and he should have!), he kept me on. We
stayed in touch and eventually became good friends.
I told a friend of mine from
back in navy times. With the exception
of my wife, he was, and still is my best friend. I told my son. He and I are so close it would have been
sinfully wrong to not tell him.
I didn’t tell my sister. She lives quite a distancer away, but even though she and
I are close as close gets, she would worry so much and have so many
questions, it would be hours before she was satisfied she had the whole
story. I didn’t tell the rest of the
family…three daughters…because I was sure that being girls, they would have so much sympathy for
me and would treat me differently. Being
a former marine and a retired navy chief petty officer, that would be
completely unacceptable. I figured I would tell
them when symptoms got bad enough they’d start thinking that after 33 years of sobriety, I
had fallen off the wagon.
It was about 5 days before I got
my Gocovry refilled, and symptoms subsided, and I realized it was time to tell
the girls. I gathered them together and
told them I’m not going to feel sorry for myself and whine about what a raw
hand I was dealt with. That’s for pussies,
and I’m no pussy. Ok, I got that one
from Sam Elliott in “We Were Soldiers,” but it fit. I told them if I fell and there was no blood
or obvious broken limbs, to just tell me to get the “frog” up. Their collective reply was something like, “yeah,
ok.”
One day I thought it would be
interesting to write about my journey with PD.
I’ve always enjoyed writing about serious issues in a humorous way, so
in spite of all the troubles that has caused me over the years, here we
go. Hopefully some would find it helpful,
or at least worth a chuckle.