A wee bit of background. I'm having surgery on my brain as a participant in a clinical trial for a new gene therapy for Parkinson's. Yes, there will be holes drilled into my brain. No, I won't be awake for it, and it isn't expected to be painful. The study provides what they call "concierge" …
Tag: health
Am I on trial?
I believe I’ve mentioned that I was being considered as a clinical trial subject for a new Parkinson’s gene therapy. I’ve been very excited about helping to advance science and possibly finding some symptom relief. It’s a double blind trial, which means that some subjects receive the actual treatment during the trial period and others …
Two diets, no waiting
If you're a boomer and that sounds familiar, check out this audio clue. You guessed it, the theme from the old Andy Griffith show. Hmm, wonder whatever happened to the little kid who played Opie. And what in the world does the old Andy Griffith show have to do with Parkinson's or aging? Two chairs, …
I am a bear
No, this has zilch to do with the cutie-pie star of the eponymous TV show. I am speaking of what is likely the primal, ursine urge to hibernate. Last Sunday morning my frequent partner in crime Diane texted me around midday, asking if I wanted to go line dancing at 7:00. Sure do, I said, …
It’s not brain surgery
But sometimes, it kinda is. I recently received notification that, as someone with a moderate case of Parkinson’s, I might be eligible for a clinical trial for a new gene therapy. Brain surgery! Gene therapy! Them’s fightin’ words. And from where I sit, they’re both words of hope…and also scary as hell. I’d always thought …
Apply for your (not) dream job
Despite retirement, I now have a nearly full time job. Congratulations, you're thinking. WTF I'm thinking. Here's the resume that thrust me into this line of work: Job Title: Healthy person 1973-2021; Not so healthy person. 2021-Present. Skills and qualifications: Lemons into lemonade outlook. Ability to change horses in midstream. Patience of a saint. Goal: …
My body is a three-car pile-up
Or, if you prefer your metaphors more culinary, a Chinese restaurant menu, one from column A (upper body) two from Column B (from tush to toe). How about cinematic? My life is combination chick flick/ medical drama/black comedy. The point is that I’m living in a shitstorm of maladies. I’m visited with Parkinson’s for starters. …
What makes you so special? I ask myself
My podcast about the weirdness of Parkinson's For the past- well, I really don’t know how long, but surely many months-I’ve awakened most mornings with aching legs. They feel as if I’d just completed a day of hiking the Blue Hills near my Boston home except all I’ve done to earn the pain is sleep. …
BONUS POST: FUNDING CUTS MAY AFFECT ALL OF US
I was casually reading the New York Times this morning when I came upon this article about funding cuts for scientific research on, among other things, treatment and cures for all sorts of diseases and medical conditions.. This section made my hair stand on end: Growing up in a small town in Alaska, Alyssa Connell …
Continue reading BONUS POST: FUNDING CUTS MAY AFFECT ALL OF US
I am my illness
I recently posted a request asking the parkinsonsphere how they’d like to be treated. Several commented”I am not my illness.” Well guess what folks, I’m throwing in the towel and stating, if not proudly but with resignation and conviction “ I am my illness.” If I were not, would I be: Organizing the medication section …
Moving and Shaking 