Hi all ...

A YouTube video clip of me.

And a long rant ... (I know ... I'm preaching to the choir here, but I want to get this off my chest and possibly start a dialog)

Re: The recent MJF "issues" ... on, off and or exaggerating -

6 years post diagnosis, I still see confusion on the faces of people I personally interact with. Some who know me well (my wife) some I see only occasionally (Aunts - Uncles - friends)

Like all PWP, I can "present" as near normal, or frighteningly Dyskinetic, or as a Bradykinesic zombie ... depending entirely upon my Sinemet/Levodopa intake.

So, someone can see me just after my first daily dose of L-dopa kicks in and think, "Hey, look ... he's not sick!"

Conversely, see me later in my day after the 2nd or 3rd L-Dopa dose and witness the Dyskinetic writhing of my trunk, flailing of my legs and the evil spasmodic Dystonia ... and think ... "oh, that's what Parkinson's Disease is."

Then there's the real horror of Parkinson's Disease ... Bradykinesia. The "me" that most people have never seen, thanks to Levodopa.

It's so frustrating to deal with and try to explain ...like the affect that stress (social and self-inflicted) has on the severity of my Dyskinesia. (re: again ... MJF and Limbaugh)

Sitting quietly, alone at home ... my Dyskinesia is dibilitating, but somewhat manageable. Faced with any stress, though (social interaction - talking into a camera lense, etc.) and it flares to uncontrollable - and dare I say - exaggerated extremes.

So ....

Bradykinesia - "off" (the "real" PD)

Levodopa - "on" ... without Dyskinesia.

Levodopa - "on" ... with calm state Dyskinesia.

Levodopa - "on" ... with stress-induced / aggravated Dyskinesia.


This can be hard for some poorly informed people to suss out. And I can understand why.

Frustrating to hear news people on TV mis-identify MJF's symptoms as "his advancing Parkinson's Disease" - rather than the drug-induced Dyskinesia that it actually is. Makes all PWP have to deal with painful, ignorant misconceptions.

It's not a black and white affliction. Michael J Fox said it best - we all have our own version of the disease. Heck, I've even seen non-MDS Neurologists struggle with discussing and treating it ...

And I can even find it my heart to understand (and forgive?) Limbaugh's reaction, given his combative personality.

MikeTTF

P.S. Recently, someone here characterized me as someone who might speak for others not inclined to post publicly. I agree with this entirely and informed my decision to make this post.