Lounging at the Waldorf: Parkinson’s Research Update

I was fortunate to attend a Parkinson’s research roundtable at the Waldorf Astoria Hotel in Manhattan this weekend, sponsored by the Michael J. Fox Foundation for Parkinson’s Research.

Here are my notes, bolstered by the handouts I received.  If I’m incorrect about any of this information, please let me know!

 1.  Top Target for a Cure: Alpha-Synuclein

According to Kuldip Dave, the first presenter, alpha-synuclein research is the #1 target for disease-modifying drugs.  As I understand it, most PD drug treatments until now (e.g., Sinemet, a.k.a. carbidopa-levodopa) tackle specific symptoms, but not PD’s general progression in your brain.  In other words, Sinemet may reduce your tremors, but PD is still ravishing your brain cells unabated.  You’ll still have other problems (constipation, anxiety, sleep disorder, balance problems, bladder urgency, etc., etc., etc.) even though Sinemet has cut down the shakes.

The current research on alpha-synuclein may eventually enable doctors to stop PD entirely in its tracks.  What is alpha-synuclein?  It’s a protein found in all humans, those with PD and those without.  For healthy folks, the protein does its normal thing in the brain cells and poses no problem.  But for Parkies, the protein clumps up with other proteins, creating, if my notes are correct, those festive-sounding-but-nonetheless-toxic Lewy bodies we’ve heard so much about recently.

What’s the clumping process like?  Imagine you’re feeding a flat piece of paper through a photocopier.  It normally goes through no problem, and the sheets of paper lining up behind it can proceed through, too.  But now imagine that someone crumples the paper into a ball.  Not only will it get stuck in the photocopier, but all the papers behind it will crash into it and clump together.

This second scenario is what happens with PD.

Hence all the hoopla about alpha-synuclein research in practically every scientific research paper you stumble across on the Internet these days.  (OK, that’s an exaggeration, but it’s true I keep reading about alpha-synuclein research hither, thither and yon.)  (And I don’t “stumble” across anything on the Internet, as I’m sitting in a chair when I surf online and have never fallen out of it.)  (Joke!)

 2.  Gait Difficulties

The second presenter, Jamie Eberling, talked about gait difficulties.  According to my notes:

• Not all gait problems are eased by Sinemet.
• Every Parkie travels a different path. (My additional thought:  And even if some travel the same path, they’ll travel it differently as they’ll have different gait issues.)
• There’s a relationship between gait and cognitive problems. If your early PD symptom is gait-related, in general gait disturbances will be a bigger problem for you in your future.  You’re also more likely to develop cognitive problems.
• Potential cognitive issues for Parkies with early gait disturbances include: difficulty paying attention; difficulty multi-tasking; difficulty walking and thinking about something else at the same time.  An example of the latter:  walking and doing mental math (like counting backwards from 100 by threes) simultaneously.

 3.  New Tools for Gathering Data

The most important take-away from the final presenter, Claire Meunier, was that everyone, Parkie and non-Parkie alike, needs to enroll in clinical research trials.  As I’ve noted elsewhere, a major obstacle for Parkinson’s research is that not enough lay people volunteer for trials.

The best way to find researchers who need volunteers in your area is by clicking over to the Fox Trial Finder and entering your zip code.  In a snap you’ll have dozens of research trials to choose from in your neck of the woods.

In addition, there are new research projects that you can participate in from home by using your iPhone, your computer, and/or by wearing a special watch that’s about to become available which will chart your movement during the day.  Again, check out the Fox Trial Finder for more info, also www.foxinsight.org.

Those are my notes in a nutshell.  The Waldorf put out a great brunch buffet, and I sat at a table with extremely friendly and bright people, including some representatives from AbbVie in Chicago.

BTW, Michael J. Fox made some opening comments.  He was intelligent, charming, funny, and he had a great haircut, making me realize I haven’t had a great haircut since I left Manhattan.  Bumble & Bumble, I miss you!