Sunday, April 12, 2015

Living with Parkinson's Disease - Year 4

Every year, ever since I have been diagnosed with this disease, I write an entry about the main “happenings” that occurred in the past year, mostly in relationship to the illness. As a matter of fact, that is the reason why this blog even exists as I am not much of a writer otherwise. My past entries (all made in April of the relevant year) range from shock of the diagnosis, over learning to live with it, to wondering what the future will hold.

This year, the main “title” I would choose to sum it up would be something like “What? Another Year?” The disease has moved into the background, I am probably as far into it as I was a year ago, same meds at the same intervals, same issues, mainly my inability to hand-write and the usability of my right hand in general. As a matter of fact, this year is the first time that I did not even remember the actual day of diagnosis, which has already passed as of this writing.

Instead, the three main memories of the past year with impact on my illness are a promotion, the winter, and a game called Destiny.

At work, the leadership rewarded my efforts and input with a promotion that made me the head of all Business Analysts, Quality Assurance Personnel, and the Configuration Team. I most certainly appreciate it and enjoy my new set of responsibilities, but with regards to Parkinson’s the additional workload and overall stress level can for sure become a negative factor and speed up the progression. I think I will keep an eye out for it, as for now I don’t want to have it any other way.

And the winter, well, I said it in my last blog entry, I simply hate it. It was way too long, too cold, too dark, and what not. Parkinson’s and cold really don’t play well together, there is a certain point, call is a chill factor, when within seconds my entire upper body freezes up and I can barely move my arms and shoulders. It is actually also rather painful, in a way that is hard to describe, something along the lines of having excessively exercised and now being super sore.

And lastly, there is Destiny, the all-consuming console game that I play for about half a year now with no end in sight. I am not going to describe the game here, which could be a separate post sometime in the future, maybe. But I can tell you that I spend a very significant amount of time playing it. And for the first time I play a game that involves talking to others (not an obligation, but fun) and forming teams to fulfill the game’s challenges. I am blessed with having made a few friends in the game, so sometimes we “hunt” together and have fun. I know one of them personally and he knows I have Parkinson’s, and I told one other player about it. The rest of them seem to simply accept the fact that I usually score at best half their “kills,” a result of not being able to push the trigger button as fast as they can, caused by the limited usability of my right hand. Occasionally I stress out over this fact, wondering what they think of me. I don’t seek pity and I am not telling anybody else about my disease, but sometimes I would like to be able to say “listen, I am slower than you because I am sick” or the like, but I think it would destroy the lightheartedness of our gamer relationship.

Well, that is all I have to say with regards to the happenings in my fourth year since being diagnosed with Parkinson’s Disease. I have no idea what the coming year will bring, only one thing is pretty much for sure, I will at best maintain my level of disease progression. I will keep you posted!

Thanks for reading,

Ingo