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Hey, Warhamsters! Some news of a personal nature.


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Oi! Warhamsters!

Unfortunately, there doesn’t seem to be a “best” way to get this kind of information out in the world. As such, I apologize for the impersonal nature of this post. I just wanted to inform as many people at one time, rather than having the information trickle out slowly, and having people worry about “who is allowed to know”.

I have been diagnosed with Parkinson’s Disease (young-onset, idiopathic). I’m currently very early in the progression of the disease, with symptoms limited to tremors and stiffness in my right hand and bradykinesia on my right side. I’m currently managing my Parkinson’s with regular exercise and with a dopamine agonist when I want to conceal the tremors (which will be less often now that folks are aware of my condition). The progression of young-onset Parkinson’s tends to be much slower than in more typical Parkinson’s. As such, while I can’t predict the progression of my own disease, I expect and am planning for a long fruitful life.

What can you expect from me?

 

1. Tremors. This is the most noticeable symptom. Currently they are restricted to my right hand (and to a much lesser extent, my lower right leg), but they will worsen over time. Up until now I’ve been doing things to conceal the tremor (keeping my hands out of view, or in my pockets, or sitting on my hands). I imagine that I’ll still do some of that out of habit, but I’ll make a conscious effort not to. It's a resting tremor, so for now you're more likely to notice it when I'm sitting at Bayou after games than while measuring range.

2. Stiffness and Bradykinesia. You might notice my right arm doesn’t move as much as my left when I walk. My handwriting has always been questionable, and will continue to worsen. I’ve always been a “hand talker” in the past, but my right hand is now much less expressive.

3. Game losses. My ability to play games is greatly impaired. Therefore, out of pity, you should throw any game you play with me. Oh.... wait. I guess that's not at all true. Cognitive impairment is unlikely due to the young age of onset. My ability to play games is likely to continue unabated. 

Other than that, I expect things to go on much the same for a decent amount of time. Depression can go along with Parkinson’s, but so far so good. The speed of Parkinson’s progression is difficult to predict and, from a researcher’s perspective, it’s frustratingly difficult to find good normative data. While I know that things will continue to progress, I expect a good many years of productivity until my functioning is significantly impaired. Michael J. Fox is still acting managing his foundation 27 years after his diagnosis, and that’s without the benefit of some modern treatments (because he had his brain surgically lesioned, he is not eligible for deep brain stimulation (which, BTW, is cyberpunk AF)).

How should you respond? However you like! Please, don’t feel that you can’t talk about this (with me or with others), and don’t feel that you have to talk about it. There’s no specific response I’m expecting from others. My Parkinson’s is not a secret, nor does it define who I am. My being open about it is more about me not wanting to keep secrets or hide things than it is about me expecting something specific from others.

My Parkinson’s changes the ways in which I will experience life, but it doesn’t change the fundamentals. I have an amazing family and a supportive friend network. Y'all are incredible, and I have the best gaming/friend group I can imagine. I have a job I love and work with people I admire and respect. I’m looking forward to a life and a career full of joy, creativity, and curiosity. Life is very good. 

With warmth and gratitude,

Jim

tldr; I have Parkinson's disease, and am pretty OK with it. I'm gonna have tremors for now.

 

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Thank you for your willingness to share this personal information with us Jim. Always know that we are all here to support you in any way you need. You're positivity and charm are always a bright spot on Tuesday nights and I'm glad to hear that isn't going away anytime soon. Best wishes and prayers go out to you and your family. 

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Building and painting is definitely therapeutic!

Pot has ever really been my thing, but when it comes time for dyskinesia (the involuntary writhing that results from long-term use of levadopa, a drug used to treat symptoms of immobility in Parkinson's), I'll definitely give it a shot! Glad I live in a state where I can. 

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On 4/25/2018 at 1:57 PM, DisruptiveConduct said:

its so different these days.

they now have strains that will give you a majority of the health benefits with little to no high/buzz.

and they come in all forms. no need to smoke anything any more.

happy to see you stay open minded!

 Look into CBD, its the health benifits with no high or buzz. 

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