I’ve already told those closest to me about this. Yesterday I talked it over with my project lead and his deputy at Space Telescope. Now I’m going to share it with the rest of you. Because at this age sharing our stories about aging is something we can all do for each other. Also, I’m an artist and wearing our hearts on our sleeves, and on the canvas, is just something we do.
For just over two years I’ve been struggling with our wonderful health care system trying to get a handle on what’s been happening to me. I’ve been getting forgetful, fuzzy headed, can’t focus. I’ve been losing balance, nearly falling over sometimes when I have to change course while walking through a crowd, or going back into the house because I keep inevitably forgetting to take something with me. I have tremors, mostly in the left hand thank goodness because it’s my right hand that’s the drawing hand. But that one’s getting them now too ever so slightly. I favor writing with one of my good fountain pens, usually my Mont Blanc 149 (the Diplomat), and lately I’ve had to be extra careful putting down some of the curvy letters of the alphabet while writing. Sometimes when I’m trying to draw I need to steady the pen with both hands. But I’ve also lost a lot of ability to focus and that’s kept me away from my drafting table and my cameras for going on a year now and that alone is killing me inside. For over two years I’ve been trying to get doctors to look at me and tell me what is happening and all I get is oh you’re just getting old take some vitamins. Okay, fine, I’m 72 now, so I reckon yes that’s old, but this didn’t feel like normal aging.
I ended up changing GPs (general practitioner) because my previous one retired and the new one they gave me at Whitman-Walker just didn’t take an interest. I looked for one at Union Memorial because they’ve done all the work on my heart since the heart attack in 2019 and I’ve never felt better cared for there. It’s an easy place for me to get to from home and I thought it would be good if I had all my doctors working from the same sets of data about me. The new GP I got took an instant interest in what was going on and she gave me several referrals.
First was for a brain scan. It showed nothing out of the ordinary for someone my age. Then there was one for a sleep study that I didn’t follow up on because I’d had a really bad experience with one at Hopkins about a decade and a half ago. Third one was for a neurologist. I had a session with him last Thursday, and finally got clarity.
The session was in thirds. First third was he asked me about what was going on with me and I gave him my laundry list of complaints. Pretty sure he was observing my body language and occasional difficulty getting words out. About halfway through he started asking me questions I wasn’t sure as to their relevance. How is my sense of smell? (it’s been nearly gone since the mid 1980s) When you wake up are your blankets all tangled up? Answer is somewhat, but not much unless I’m too hot and kicking them off.
Second third was your usual neurologist reflex/coordination tests. The little hammer on the knee, can you feel this vibrating here, does that feel cold there, follow my finger with your eyes, touch your nose. He had me walk back and forth in the hallway outside the examination room. I think by then he’d already figured out what was going on and he was trying to see how far along it had progressed.
Tests done we had a chat, which he began by saying to me “What I’m about to tell you isn’t good, but it’s not as bad as you might think.”
I have Parkinson’s.
And this might sound strange, even for me, and inappropriate, but my first reaction to that was an overwhelming sense of relief, because in that moment everything Just Clicked. Finally, after over two years of fighting with the American healthcare system to take my complaining seriously I had an explanation for what was happening to me that made sense. No it’s not good, but going for years and years and still not knowing could only let it keep getting worse and worse when I could have been taking the right meds and doing whatever I need to do to keep it at bay for as long as I can.
Neurologist says I have at least five, if not ten more years before I’ll be needing help. I’m going to make the most of this time, however long it turns out to be. I feel suddenly unchained from worrying so much about my future. I’ve never liked that live for the moment philosophy but now I can see some benefits there after all. I’ve been put on a medication that shovels dopamine into the brain and the neurologist said I should notice an immediate and significant improvement in mental clarity, balance and motor functions when I start taking it. I’ll reach a plateau of improvement that will slowly decline because there is no cure for this, only management. Fine. Whatever. I’ll manage.
I’m not going to troll for sympathy. I don’t even like playing the senior citizen card (just give me my discount). But you get to the ages I and my classmates are now and things just start dogpiling on us and one thing we can do for each other is tell our stories. I’ve been blogging my life ever since blogs first became a thing, and I reckon I’ll keep doing that. Also searching out others who’ve had this diagnosis and listening to their stories.
So now the rest of you know. I’m okay. I’ll deal with it and keep you posted.
