My name is Ric Paul Webster and I was diagnosed with YOP when I was just thirty-three. Of course, that wasn't the beginning of my Parky journey. I was given a diagnosis of Fibromyalgia, Chronic fatigue, major depressive disorder, Epstein Barr with a possible Lyme disease connection. Between 2000 and June of 2004, the predominant symptoms moved from major, body-wide pain flares to a minor twitch in my right hand's index finger. Over the next couple years, my tremor spread to the hand then to the arm. I asked one GP after another and no one could tell me what was happening to me. I dropped a newspaper, a wine glass, other assorted items. Then I heard about Parky that it can start up not just in elderly people but in young as well. A couple of ER episodes which had a guest star who was a 38 yr old Parky who wasn't ready to end his career, but could not ignore the writing on the wall: he was getting worse, quickly because of the stress of his job. He ended up quitting. Sad story, sadder ending. But when he mentioned that the first sign of parky was when he nearly dropped a wine glass, I looked at my now ex-wife and she looked at me. Her giggle was disturbing and fully of the disbelieving type. Neither of us knew that Parky could be friends with such young people. I went back to another GP and he admitted that Parky can run with the younger crowd, but then in the same breath he contradicted himself, "but you're thirty-one, you can't have it. So don't worry about it." I cringed at his helplessness tickling at the nausea of my hopelessness. "Even if you did have it, there's absolutely NOTHING you can do about it."
I decided on a new (fifth) GP, at the risk that, doing the same thing over and over again would qualify me for the loony bin. But this GP was empathetic, and rational. I showed him my shaking hand. Then I dropped it in my lap. It began to jump around by itself. "Ah, resting tremor, yes," the doc said, "You've done your homework." He sighed as if having to break the news that I was dying. "Yeah," he moved my joints around in his hands to check for rigidity. "Resting trem is definitely a distinction from essential tremor." He looked me over, "it doesn't look like you have that much rigidity. But there's enough there, and the resting tremor. Let's get you a referral to a neurologist."
I almost cried. Finally.
Dr. Kneebone ran a movement disorder clinic in North Adelaide. He ran me through a whole range of tests, from Wilson's to Huntington's to brain tumor. The standard for Parky tests is to look for everything else first, then medicate. A year later, June of 2004, I got my diagnosis: young onset Parkinson's. He didn't want to put me on L-dopa because of the often grueling side-effects. But what neither of us knew was going to happen to me when he put me on an agonist called Cabaser, infamously labeled Mirapax in the States. At the time I had upped my dose to the full allowable dose of 6mg a day, some folks back in the state were already done with it, some of them even filing class action suits against the company that had poisoned their minds to compulsively gamble their life savings, their children's college funds, their company's embezzled funds. Others had suffered from intense sexual compulsion. That was where my brain decided to take me. My wife and I were already in the outs, were already suffering from intimacy "problems" that were probably beyond repair. But add to that putting us into debt at brothels and strip joints in the middle of the night, that did it for us. I don't blame Cabaser. But that tiny pill in that tiny bottle, packed a wild punch. Physically, for a time it restored normal functioning. I hadn't felt so good in a long time. But psychologically I was being hurried into some pretty. I was growing so far apart from my then wife. In the end that drug only rushed the inevitable where she and I stood.
But what really hurt was where that drug had taken me, to a place where I really hated myself, and where I couldn't cope at all with a f*cking disease was going to take away all my functioning. Oh sure, it may take months even years, but it would come, and maybe not just my body, but full scale dementia. It took me years, and here I am thirteen years on, still not fully able to cope with the changes, especially when they happen fast. But, since my DBS surgery in 2011, I have had an eighty percent improvement in the side-effects. Some days I don't know how I'm going to get through the rest of my life, giving up more and more to this greedy f*cking disease.
At the moment I have found solace in working on a masters degree investigating the role of resilience in the quality of life of people with Parkinson's disease. I feel I have a special vantage point from all sides of this issue. If you're interested as a person with Parkinson's disease in taking the online survey, I am posting this (hope this is okay) url: https://rmit.au1.qualtrics.com/jfe/form ... vbgj2en8rP
Please rest assured that I am a real person with PD and this is not spam. If the moderators take this down, which of course I understand, they have every right to. Please just send me a private message and I will send you the test address. Thank you so much for your time. I hope we can learn some things about how resilience works in the lives of PWP like you and me.
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I know what you are saying.
I know what you are saying.
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