Or is it just willful stupidity? As Herman’s Hermits sang back in the day, when they weren’t telling my mother what a lovely daughter she had*, “Don’t know much about history, don’t know much biology.. “ amended for these purposes to “Don’t know much about Parkinson’s…”

People tell me about the latest research on PD, ending their colloquy with “You probably know about this already.” Um, I most probably do not.

Over the course of a few days, these are some of the subjects and sources of Parkinson’s related emails I received;

Feedspot (newsletter)

Here’s a selection of their coverage:

1) Fundraising for Parkinson’s, 2) Leva-dopa boosts brain connections 3) Dopamine signaling linked to emotion recognition (huh?) 4) Phase 2 trial risvodetinib fully enrolled (editor’s note: how can I learn much less talk about something if I can’t even pronounce it? Also, may be spelled wrong but who’s gonna know) 5) Scientists discover how PINK1 pathway activates to protect cells. What could this possibly be?

I just looked up PINK 1 and here’s what I found: Mutations of the mitochondrial PTEN (phosphatase and tensin homologue)-induced kinase1 (PINK1) are important causes of recessive Parkinson disease (PD). Studies on loss of function and overexpression implicate PINK1 in apoptosis, abnormal mitochondrial morphology, impaired dopamine release and motor deficits.

Ohhh, I get it. (untrue). Now I’m going to conduct some research on PINK 1 so I know enough for a conversation starter. I’ll begin with this: You think the GREEN 5 neural pathway is interesting. Wait till I tell you about PINK 1! Will I be the life of the party, or the weird scientist who never gets invited again? Oh wait, I’m only pretending to be a scientist. Strange woman with a disease is my true identity.

Lately, I’ve been the unwitting recipient of Parky-related material from the Parkinson’s Association of Ireland and Zhittya Genesis Medicine. Actually, the latter is a biotech company conducting clinical trials, whose newsletter I may have signed up for in a fit of ambition.

I was going to send you some additional examples of Parkinson’s materials I receive on a regular basis, about symptoms, treatment, research, devices, and…the list goes on. And on…… But you can find this sort of thing yourself and, as previously stated, I’m no expert on anything related to Parkinson’s. I know enough to take my meds on time, call my doctor when there’s a major change, and yeah, ask if she knows about a certain medication I’ve read about.

If I make the time (which is the key thing) to become educated in all (or at least more) things Parkinson, I’d have to rejigger my priories. What exchanges might I make? Ten Parkinson’s articles a week for which I sacrifice what? A few hours of napping? Early morning chats with friends? An entire issue of the New Yorker? A new and complicated recipe that sounded delicious? Some thing(s) would have to give for me to become the well-informed Parky I wish I were.

Oh, well. For the moment, I’ll continue to be disgracefully, willingly, blindly ignorant about clinical trials, medical devices, use of alternative approaches such as micro-dosing, and whatever is out there in the vast universe of Parkinson’s information. I could know a lot more, and maybe some day I’ll find the bandwidth – or decide to shift my priorities- to study up on all (or at least more) things Parkinson, The status quo is okay for now.

* Mrs. Brown, you’ve got a lovely daughter. Sung by Herman’s Hermits, and the number one song in May, 1965.

Coming soon, Parky Conversations

Currently on the launchpad, Parky Conversations, a podcast for, about and by people with Parkinson’s and those who care about them. (You might like it even if you don’t have a Parkinson’s connection). Scheduled guests include a physician/researcher at Mass General Hospital who will enlighten us about the surge in creativity experienced by some with Parkinson’s, alongside a newly-minted artist with Parkinson’s; an expert at the Mayo Clinic on young-onset Parkinson’s; and a scientist who will tell us all about PD hallucinations – including why my bedroom carpet seems to ripple.

By supporting the podcast, you’ll be helping me reach more people with PD, and educate those who don’t have it but would like to learn more. I appreciate any help you can offer. Many thanks!

Last thing; if you have had any kind of hallucination due to PD, I might want to include it in the podcast. Please send detailed hallucination stories to andib88@comcast.net