September 04, 2015 - "One Year Later"
One year… Today marks one year.
It was the afternoon of Thursday, September 04, 2014 when I sat in a small office and was told that my neurologist had confirmed the diagnosis we had been fearing. I don’t think I showed any emotion… which probably surprised both my wife and the PA-C who uttered the words “You have Parkinson’s Disease”. I tried to hold it in… to keep it together… but those words hit me like a ton of bricks. When she followed up with “This is not the news we were expecting to have to tell you today” my eyes began to tear up as I mumbled a rather incoherent “no”.
My neurologist - a Movement Disorder Specialist - had thought that the chances of it being Parkinson’s were slim-to-none. She fully expected a negative result. Her PA-C thought the same thing. It was supposed to turn out to be what my M.D. had been saying for years - just an “Essential/Familial Tremor” in my right hand… nothing more. That’s what we all thought… until the tremor got much worse and started to show up in other parts of my body as well - leading to my going to the neurologist “just to make sure”.
The thing was, I was only 37 years old… about to turn 38 in a month… and this sort of thing just wasn’t supposed to be happening. Young-Onset Parkinson’s Disease isn’t exactly rare… however getting the diagnosis “so young” isn’t very common at all. Many neurologists never see a diagnosis of Parkinson’s in someone under 40… and based on my medical history it appears that the symptoms actually started seven or eight years earlier… when I was just 28 or 29 years old.
Treatment would begin immediately. I was put on a medication that is specifically meant to treat Parkinson’s. I would start seeing a Physical Therapist once a week to help with balance and movement issues. I would start seeing a Psychologist who specializes in people coping with diseases in an effort to help with the emotional and psychological issues. I would begin trying to learn whatever I could about the disease. I joined a support group that was specifically created for people with Young-Onset Parkinson’s.
Things got worse before they started to get better. It took time to get the right adjustment and combination of medications. I began to experience Dyskinesia. My body was moving uncontrollably, constantly writing and shaking to the point of exhaustion and pain.
And then it all changed.
With medication adjustments the Dyskinesia faded away. The tremor was reduced back to just my right hand… and eventually disappeared almost completely. I wasn’t “sluggish” anymore. I wasn’t walking very slowly anymore… and my arms were naturally swinging again when I walked. I was able to write with a pen again… and my handwriting was actually legible. Physically, I was feeling better than I had in many years!
Emotionally, not so much.
The fear of what was going to come was constantly on my mind. I knew that at some point the meds would stop working… and I’d be switched to stronger ones. I knew that with those stronger meds the possibility of the Dyskinesia returning was strong. I knew that eventually we’d run out of med change possibilities… and there’d be nothing left to keep my body from moving. I knew that maybe someday I wouldn’t be able to function without help from a caregiver… and that that caregiver would be my wife. I felt incredibly guilty about that being her possible future.
Then I began talking with more people who had Young-Onset Parkinson’s Disease. I learned more. I met someone who had been diagnosed almost two decades prior and still wasn’t having any tremors. I met people who talked about how much more creative they became after their diagnosis. I met people who had been on the highest doses of some of the strongest Parkinson’s meds there are for years and you’d never guess that they even had Parkinson’s. I heard over and over and over again how horrible things were at first… but how much better things got with time.
And here I am… exactly one year after I heard the words “You have Parkinson’s Disease”. The tremor in my right hand is coming back… but only slight and only at the end of the day. The sluggishness has returned a bit… and I’m walking a little bit slower than I was five or six months ago. I know that at my next visit with my neurologist she will most likely need to adjust my meds. I know that this is the way it’s going to be from now on…
But you know what? I’m not scared anymore. I know that I could live the rest of my life without Parkinson’s ever taking control of my body away from me. On the flip side, I know that I could also end up not being able to do things without someone else’s help… but I don’t care about that right now. I have no way of knowing what “will be”… I only know “what is”. Right now the “what is” is that I’m OK. Right now the “what is” is that most people can’t even tell that I have Parkinson’s Disease. Right now the “what is” is that there are honestly many days I forget I even have Parkinson’s… until it’s meds time. Right now the “what is” is that there’s nothing preventing me from living my life to the fullest - other than myself.
So… one year later… that is my game-plan: To do my best to not allow myself to keep me from living my life to the fullest. I have no clue what tomorrow might bring… but I fully intend to enjoy today and leave tomorrow for tomorrow.
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