My Crazy Parkinson's Life
My crazy Parkinson’s life
A Little Horny (If you think I am talking about sex, shame on you)
It’s been a long time since I have written anything so I thought I should give an update on all things Mark
I am doing pretty good, and still learning about life with DBS, a little steeper learning curve than I had anticipated. To say the DBS experience is interesting is a gross understatement, it is no replacement for dopamine that’s for sure. And it is constant reminder that the disease is progressing as you keep adjusting it to keep up with the changes. If it would auto-adjust it would be awesome. All that being said I have no regrets, as it has improved the quality of my life, and that’s what’s important, right?
My two biggest concerns going into the surgery was the device in my chest and the electrode “bumps” on my head. Why I did not worry about the “other” stuff is beyond me. Well, I hate the feel of the device in my chest, freaks me out. It does not hurt and I don’t even know it’s there until I shower. But I wash around it like it bites, weird. I don’t think I will ever get used to that feeling.
And of course, I got two cute little horns on my head for my effort. I was worried about what the bumps would look like, vanity is way over rated and could now care less. Besides anyone under 5’ 3” can’t see them, so hats and short people it is. I am just waiting for some satanic dude to ask me where I got the cool horns, I guess it’s a badge of honor at least that what I tell myself.
My doctor said I could go off the meds if I wanted, so I did and that was a bad Idea as I got restless legs REAL bad so it was back to the meds. I take about half of what I took before and then factor in the times I forget to take them, which is about 50% of the time, so I guess you could say I am taking one quarter of what I was taking.
I was asked to be apart of a program by Rune Labs using an Apple watch to record activity and symptoms. My treatment will be based on the data collected by the watch, should be interesting. I had a zoom call with Rune Labs yesterday, and they said next month they would show me my brain activity. I said wow, “you can see that”, she said I am looking at it right now”. I guess there is no slipping off to the gentleman’s club anymore.
My biggest achievement on the Parkinson’s front is e mountain bike riding, seriously it has been a game changer for balance and self-confidence. I have advanced so far it shocks people who saw my first attempts, I was a mess. The feeling of accomplishment is hard to describe. But I know what I have overcome to get to this point and know I have a lot more in me. Today I rode a trail I would have never tried two months ago, and was relaxed enough to enjoy it, take that PD.
It dawned on me that not only do I have PD, but I am 64 years old with PD riding with 30 somethings. I am either a dumb @$$ or a bad @$$ the jury is out, time will tell, but I am leaning towards the former.
Till next time, as my father used to say “keep on keeping on and hang in there”
Mark Hitechew