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: mental-health
I’ve Flunked Meditation
I’d just concluded a delightful four-day visit with an old friend in Atlanta. We’ve known each other since we met at Camp.Mataponi in Naples, Maine at the age of ten. We were fast friends for all our nine years at camp, lost touch for decades, and miraculously reconnected about fifteen years ago. Our lives are …
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 …
Parky dreams…occasionally sweet, always interesting
Sweet dreams I have a couple of friends with whom I chat in the early morning hours, usually between 7:00 and 8:00. And I haven’t turned into my mother. Oh no, it’s way less predictable than that. I’ve turned into my grandmother. I guess the “start-the-day with-a-rambling-conversation” gene skips a generation. Here’s a nearly verbatim …
Continue reading Parky dreams…occasionally sweet, always interesting
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 …
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. …
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 …
How to be with your friend with PD
If it looks like a duck… in my case, I resemble the healthy looking duck. I try to pass as a person who’s never had a twitch or a body that aches deeply several times a week. Yes, there is the occasional get out of jail free card, what I call a pain free day …
Identity
Identity refers to our sense of who we are as individuals and as members of social groups. It also refers to our sense of how others may perceive and label us. In other words, who am I? As Walt Whitman put it, we contain multitudes. First, the basics. Gender: Female Sexual orientation: Hetero Age: Here, …
Moving and Shaking 