I have what is called Young Onset Parkinson’s Disease (YOPD). I don’t know what the cutoff for “young” is, but I was diagnosed when I was 45. Today I attended my first big Parkinson’s event: the Georgia Optimism Walk. (Other diseases get to race for a cure, but people with the Park aren’t very fast and there isn’t much hope for a cure, so we just get to walk for optimism, I guess.) There were a lot more people without the Park than I expected, people in athletic gear who came to walk with vigor, not slowly clomp around like a Frankenstein. And there were a lot of old people. People with canes, with wheelchairs, with those little walkers that you can also use as a chair. The majority of the vendors were for elder care/assisted living/hospice companies. It was a glimpse into my future. And at first it unnerved me.

Since being diagnosed, I’ve struggled with staying positive about my future. I think about my uncle, who had Parkinson’s and who died way too soon. I think about growing old alone and wonder how long I will actually be able to live on my own. I worry. But after attending the walk today, I came away actually feeling motivated about my long-term future for the first time in a long while. It was a big help seeing people, both with and without the Park, being happy and energetic and motivated. It felt good being outside, which made me feel more confident in my summer goal to go camping and to spend more time outdoors. My life will never be what I thought it would be even just a couple of years ago, but I feel better about what it can be. And I found out that if I raise enough money, I can get a medal. I want that medal. I will use all the resources at my disposal. I will make a difference for people with the Park. And I will get that medal.

#Parkinsons #Optimism #BonJoviBridge

Of all the Parkinson's symptoms (and there are plenty to choose from), the one that makes me most uncomfortable is I guess is called REM sleep behavior disorder (RBD). I’ve always called them night terrors. Whatever you call it, it’s when you physically act out your dreams while sleeping. So I was just dreaming about kicking an albatross, and I woke up physically kicking in bed. Now it's not that bad for me since I live alone and the cats have learned not to sleep by my feet, so I'm not in danger of harming anyone with my sleepy violence. But it always unnerves me. The tremors and stiffness of Parkinson's are if not constant then at least regular symptoms. This is only the second RBD occurrence I've had in the last couple month. Of course since I sleep alone, I only know about the vivid dreams that wake me up. Lord only knows what sort of archetypal creatures I'm kicking at in dreams where I don't wake up.

Like many aspects of Parkinson's, the impact these dreams have on me is difficult to explain. Whenever I have one, I can't get back to sleep. I stay awake for at least for a couple hours. At least today I'm trying to be productive and get some writing in.

I think it's the fact that I'm asleep when it happens that makes me so uncomfortable. While I can't control the tremors or stiffness, I'm at least aware of what's going on and can make attempts to compensate by doing things like switching to voice typing or being more deliberate with the way I walk. I can't make those adjustments when I'm asleep. Even my 25 pound weighted blanket isn't enough to hold down my body. I'm at the mercy of my broken brain and I feel completely helpless to do anything about it. And I'm pretty sure the cats don't like it, either.

#Parkinsons