It started with a slight movement in my right hand. “That’s odd”, I remember thinking as I watched my hand move back-and-forth seemingly with a mind of its own. I was 32 years old at the time, and a diagnosis was still six years away.
“Essential Tremor” was what the doctor called it back then. “Nothing to worry about”, he said. It became just a sub-symptom in my medical chart. The “real” problems I was facing seemed far more pressing: depression, anxiety and OCD. I couldn’t function. I was constantly tired and low. I’d cry for no reason. I’d have panic attacks. I couldn’t deal with people, except for a handful of friends and family that I was closest to. The simplest tasks seemed impossible to me. I was stuck… and nothing could get me to move.
The first prescription in a long-line of anti-depressants came, and it was a godsend! Little-by-little I began to creep from my shell. I became more open and outgoing. I got a job and started to deal with people more comfortably. I began to feel like my old self again. Sure, there were ups and downs… trial and error with this med and that med as I moved my care from my primary physician to a psychiatrist - but things were looking up and I was feeling better. Life was good again! Yet there, in the background, was that constant movement in my hand.
I became self-conscious about my tremor. I did my best to hide it. My doctors kept assuring me that it was nothing, but I couldn’t get it out of my mind. There was a word lurking in the back of my brain which scared the hell out of me: Parkinson’s. But I was only in my 30s… far too young to be dealing with the “P”-word. Besides, I had enough on my plate dealing with other health issues. I didn’t need THAT on top of everything else. The doctors said it was nothing and the doctors know best…
Then it got worse. A lot worse. I couldn’t hide the tremor anymore. I couldn’t control it. I couldn’t write anymore. I used to have beautiful handwriting but now when I wrote it was much smaller and sloppier than it had ever been. I became sluggish and sort-of hunched-over. I felt “stiff”. I had always been a fast walker, but now I was slow… really slow - and when I walked my arms didn’t swing. My balance was off. I - a photographer - couldn’t hold a camera without it shaking. After four straight years of doing the “365 Project” (taking a photo every day for 365 days) - without missing a single day - I had to stop shooting. I told people I was “taking a year off from the project” but in reality I just couldn’t shoot anymore.
The tremor spread: now it was in my tongue. I couldn’t talk without slurring words. People thought I was drunk when I hadn’t even had a drink. This was NOT just an “Essential Tremor”. This was something more.
It was my psychiatrist who first suggested going to a neurologist - “just to make sure”. My wife booked the appointment… and I found myself sitting in the Dr.’s office, my right hand shaking more than ever. All possibilities were discussed… and a complete history was given. The Dr. felt (hoped) it was all just a side-effect of the many meds that I was on, some of which were known to cause uncontrollable body movements. But we had to be sure… especially since the tremor had started before I ever started any meds. Option 1 was to stop all meds for 45 days and see if that helped. That wasn’t going to happen… I wouldn’t be able to function without some of those meds. Option 2 was to do a Dopamine Challenge to test for Parkinson’s Disease. The Dr. recommended Option 2.
I’ll never forget the day I found out I had Parkinson’s Disease: Thursday, September 04, 2014. The results of the Dopamine Challenge were conclusive. There was no doubt. The tremor wasn’t just a tremor anymore. A dopamine-agonist was prescribed immediately. Before I knew it I was in weekly physical therapy to help with the balance and stiffness issues. I was in weekly counseling with a psychologist who specializes in people with neurological diseases/disorders. I was in a support group for Young Onset Parkinson’s Disease. I found out that there were many other people in the same boat as I was… and I found out that Parkinson’s Disease wasn’t a death-sentence, in fact in many ways it was a blessing!
As the weeks passed I began to feel comfortable with my diagnosis. Two weeks after starting the dopamine-agonist drug I was walking fast again. My arms were swinging when I walked. My writing was improved. My balance was better. Then, two months into treatment, the tremor stopped. For the first time in six years my hand wasn’t shaking.
It hasn’t all been wonderful. I’ve cried. I’ve worried about the future to the point of making myself sick. I’ve had to have the dopamine-agonist reduced because the higher dosage was causing dyskinesia (my body would writhe uncontrollably). Even as I type this my legs and my head/neck are constantly moving - a side-effect of my meds as my doctors try to find the right dosage. I have trouble sleeping and some days I just don’t have the energy to do anything. But I push on. I’m on the treadmill almost every day. I go to physical therapy every week. I’m eating healthier. I’m taking photos again. I’m feeling like “me” again.
And I’ve met some wonderful and inspiring people in the Parkinson’s community - mainly through the Young Onset Parkinson’s Support Group here in Connecticut. People like Jeff and Heather Butchen, whose daughter Zoe created the “Dance, Shake, Donate” campaign to raise awareness of Parkinson’s Disease, with all money raised going to the Michael J. Fox Foundation. As of this writing they have raised over $22,000.00!
On Saturday - November 22nd - “Dance, Shake, Donate” will be hosting a “Shake It Off” event on Main Street in Ridgefield, Connecticut from 8:30AM-10:30AM. My family and I will be there… and we ask you all to please consider being a part of this wonderful event! If you’re not able to attend, but would still like to donate - you can do so at http://www.danceshakedonate.com
It has been just shy of two-and-a-half months since my diagnosis. A lot has changed in my world, and I anticipate many more changes in the future. I’m feeling better than I have in many years and I owe a large part of that to the support of my family and my “team” of doctors, therapists, friends and supporters. I love you all so much!
Before I wrap this entry up I’d like to offer the following advice to others who are struggling with PD, especially those who have been recently diagnosed with the disease...
What I have found so far is: Find a Movement Disorder Neurologist that you are comfortable with... Exercise, Exercise, Exercise... Physical Therapy can work wonders for balance issues... Support Groups aren't for everyone, but for me the Young Onset Support Group I'm part of has been a godsend... Educate yourself... Don't be afraid of meds, whether it's for your Parkinson's or for non-motor symptoms such as depression and anxiety. Parkinson's is not a death-sentence... and for many, the diagnosis turns out to be a blessing. Stay positive and live life. Laugh often. Yes, there will be tough days... but you WILL be OK.
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