Parkinson's Disease and me

Parkinson’s Disease and me

I got through rehearsals and was all ready for the opening night of Les Miserables. It had been 12 years since I last starred in a musical, and 14 years since I had left a continuous career on the stage, of 16 years straight.

Photo by Steve Pyke/Via Flickr
Honestly, I have no memory 5 years later, of which night I noticed my right-hand tremoring while on stage, and getting worse on nights I didn’t feel I had my all for the audience. I gave my all, but it was a battle, for the first time in my life. Something wasn’t right.
Before I can continue, I have to point out that I have fought through 5 years of misdiagnoses and misunderstandings of what was really wrong with me. I have even previously written about what I was led to believe was wrong with me here on Medium, and it turned out to be another false-positive diagnosis, basically.
So, there I was, opening night and in finally playing my second dream role, albeit in “amateur” community theater at this point in my life, at the ripe age of 44, I was ready and waiting to be Jean Val Jean for 12 sold-out performances, and an added 13th show, in the end with SRO Productions III, the very group I started my successful career with. This was a role I waited on, after playing the other favorite leading role Billy Bigelow at 30 years old in Carousel and receiving rave reviews in the Washington D.C. paper’s theater sections. A role my father built me for, by first having me study the crooning of the Golden Age’s Gordon McRae, starting with the “Soliloquy” around 7 years old. You can go ahead a laugh now, but this bucko buckled down and learned to belt that baby out with the exact mimic of McRae, himself by 15 years old.
I remind you, I don’t know what night it was, but I suddenly noticed that tremor, and my first thought was Parkinson’s Disease. Sure, I had no familial reason to think such a thing, but I had already been battling Sarcoidosis, an auto-immune disease for five years, which had attacked multiple areas of my body, and this was my hopeful return from that fight.

A new monster had its own idea of what path my life would take over the next 5 years. After seeing multiple doctors and Neurologists who refused to diagnose me with Parkinson’s Disease, test a Parkinson’s med on me, or order a DaT scan as I requested year after year, and office after office, it finally took one woman at Syracuse University Neurology to listen to me, although she voiced her doubts, as well. She did diagnose I had Parkinsonisms, based on my symptoms, and my list of issues, but she still held off the meds until I took an all-day DaT scan, she ordered for me, hesitantly.
Now, having been a dancer, the star of a rollerskating musical for a year, a singer, actor, trained in movement, voice and speech, dialects, can mimic dozens of singers and actors, and has never broken a bone in my body, I’d like to reinforce here that I, like many other such performers who are highly in touch with their own bodies, and have been for so long, know when something isn’t right. Having taken Nursing, played EMT for 3 years, and being an avid science research reader and a science degree holder, I refused to give up on the right diagnosis, until I got it. I knew what was wrong, and if you fight for the right diagnosis yourself, you should never, ever give up, when you know you are right.

April 4th, 2019, I spent the day in Syracuse, got injected with dye, and lay my head on solid metal without being allowed to move at all for a solid 20 minutes, and I passed the challenge with a solid green light! Actually, I was told the machine wasn’t functioning properly after nearly six or seven minutes, and had to leave the room for a while, and return to start all over again.
Then…I was told by the lab technician I would hear something the next day, or in two days from my Neurologist, since the Doctor was on campus.
Three weeks later, after several phone calls, conversations with supervisors, and patient representatives, and nurses, I finally got the call from my doubtful Neurologist. “Yes, Mr. Wood…umm…umm…well, your scan…well, it looks positive…I mean it’s unclear…but, yeah…it’s Parkinson. I will start you on Sinemet two times a day right away because you’re young…you know?”
That quote is verbatim; the conversation my educated Neurologist had with me about the fact that yes…yes, I was right for the past 5 years. I have early-onset Parkinson’s Disease, and early Dementia to boot. Not Essential Tremors as I was diagnosed with, not Multiple Sclerosis, as I had been led to believe I had, and “no doctors”…not anxiety.
I write this, in hope to join the chorus of other voices in America battling invisible diseases, or well, not so invisible even, and have their stories to tell to those who are still facing the same devastating type of illnesses, and can’t find the right answer, but know for a fact what it really wrong with them.
I stand with you, I fight with you, and I call out to you never to give up, never to stop fighting, and to demand tests and answers until you get the one that is correct.
Parkinson’s Disease is one of the monsters out there I mentioned, that I thought I’d never meet. I’ve been looking under my bed for 49 years, and I just met my first real beast. I’m ready, claws out, and teeth gnashed, and I refuse to lose this battle with every stiffening muscle, and tremoring finger I have left!

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Colin B M Wood

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