I received this nifty book in the
mail a few days ago from www.parkinson.org. I had already
downloaded it and scanned through it online. I operate under the belief that
the more knowledge you have the less scared you have to be regarding your own
physical state. For the longest time, I didn’t know what was wrong with me. I’ve
had symptoms for years, but this is a sneaky disease and no two sufferers have
exactly the same symptoms.
Add to this the fact that symptoms
vary from hour to hour, even minute to minute, as I’ve had the misfortune to
discover. There is no way to test for the disease and in fact, Parkinson’s
Disease actually falls under an umbrella of syndromes, or conditions. Although
I’ve been diagnosed, I’m currently under no Parkinson’s medication and I’ll get
to why in a minute. Some people have horrific symptoms, tremors with wildly
swinging limbs. Think of Michael J. Fox. He looks like 2 catfights. He has also
climbed Mt. Everest and talks very candidly about what his life is like and
what he does to go about his daily routines. Which he does; damn the disease.
He also has that knowing look in his
eye. This is a very happy man. He knows he has to do certain things and take
his medications, or else his neurological system would shut down. He just keeps
going on. The last I heard, he is making a new television show. Once again,
someone has kicked Parkinson’s in the nuts. Go team!
Another superb example of living
with Parkinson’s and having a great life is my dear, dear friend @YumaBev, or
Bev Mittan-Ribaudo, who keeps the hilarious Parkinson’s Humor blog and also is
a lyricist and quite a fine one. She actually played clarinet in school. It
took several years for them to diagnose her correctly and she is not unique in
this.
When I was at the end of my
hospitalization, one of the physical therapists noticed certain neurological deficits;
I had trouble opening salt packets, of all things. I had a broken hand at the
time, due to the fact that I had fallen (another very long story) so I think it
was overlooked due to that. After the cast came off and I was working with the
hand PT, the trouble persisted; we all thought it would get better and then it
was forgotten as I was moved to a homeless shelter.
Moving ahead a few months, we were
diverted by the always-popular Doctor Eyeballs who did surgery, hated
computers, switched identities (I never could tell the bastards apart until I
realized the guy who hated computers was the non-surgeon) and the surgeon
kindly told me that he would do no more surgery because he didn’t believe in
doing that when there was no hope. End. Of Story.
New diversion; a white cane, which
doubles as a weapon. Oh goody! In record time, I then find out I get my SSDI
and I get un-homeless as fast as possible, so I can get away from people like
Mr. C and Pimp My Ride. I move all of 2 ½ houses away, because hey, this is
some entertainment here, I gotta tell ya! This was in August of 2011. We’re
doing pretty okay. I’m having weird moments, but they’re more psychological.
The physical stuff is irritating, but not debilitating.
Cognitive Dysfunction
The term “cognitive”
refers to thinking or the processes involved in knowing
or putting together
information. It includes a variety of mental skills such as
attention,
problem-solving, memory, language, visual-perceptual skills, and other
aspects of reasoning and
general intellect. – “Mind, Mood, and Memory” National Parkinson Foundation
This was becoming a HUGE
problem and was getting more and more frequent. I noticed this more than
anything else. I was forgetting words and forgetting how to shape ideas and
arguments. The frustration was unbelievable. And I had no idea why.
Along the way, I was
still falling over and losing my balance. I attribute that to my eyes. That’s
separate from my PD, but I’m sure that doesn’t help a thing. Along about
November, I noticed these tiny tremors in my hands and I freaked out. My
fingers were just a-jumping around independently of one another. But, here’s
where I think I need to say “no” to the meds. I’m strong; very strong and
especially in my hands. I can pretty much override tremors. I have brief
periods during the day where it gets bad. Here’s the reason I may say “no” to
PD meds:
Loss
of Impulse Control
Loss of impulse control,
or disinhibition, has been reported in
PD,
especially after
exposure to certain medications such as levodopa and dopamine
agonists. -- “Mind,
Mood, and Memory” National Parkinson Foundation
That right there; I’m
already bipolar. After staying up all of February and being committed for most
of March and having to change my head meds once, I don’t think I need more
lowered impulse control. If the crazy ‘bangers around here are already afraid
of and they are, what the hell is going to happen if they start giving me shit
that’s going to make me MORE homicidal?
The only thing that
bothers me in all of this, is apparently, I have the more of the “Mind” kind of
PD. I know it’s all intertwined. I just have this to say; to all those who have
PD? All my loved ones? We’re still graced; we’re blessed with the courage and
heart and humor to put up with this craziness. We’ll soldier on and have a
great time!
My deepest appreciation
goes to the National Parkinson Foundation for their fine support and their
material. Without them I wouldn’t be writing this; I probably wouldn’t be here
now.
My deepest love,
affection and admiration goes to YumaBev. She is my inspiration; not an hour
goes by that she isn’t in my thoughts.
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