I'm Aware That It's April

April, it seems, is National Parkinson's Awareness Month.

Huh.  I must have missed the memo.

The Awesome Fiancé and I were watching TV last night when Julianna Margulies and Michael J. Fox appeared on our screen.  They had a brief message, announcing it was National Parkinson's Awareness Month and, basically, encouraging folks to get involved.

I noticed a couple of things.  First was that the message was delivered 98% by Ms. Marguiles, with Mr. Fox barely saying a word.  He sat remarkably still which I found strangely nice to see.  Of course I knew why he was in the announcement, but couldn't figure out why Ms. Marguiles was in it.  Was she a patient too?  Was there a connection I was missing?  I made a note to search this the next day.

The second thing I noticed was that the minute the words "Awareness Month" were spoken, The Awesome Fiancé immediately looked over at me, almost by instinct.  Rather than meet his gaze, I gave a half-hearted grin and said out loud "oh joy!  Look - I get a whole month of awareness!", though - truth be told - I wasn't really bothered by it.  Basically any press given towards PD is, honestly, a good thing so - sure - bring it on.

Today I sat down and searched for the Marguiles Parkinson's connection.  It seems Mr. Fox is appearing on her current show where he plays a character similarly diagnosed as he has been.  Intrigued, I watched the two minute long interview from the show.

Which was a mistake.

In the interview, Mr. Fox talks about how he downplays some of the symptoms he deals with when necessary.  I think that's what he said anyway.  It was hard to concentrate on his words because he was in a constant state of unfocused motion.

Now I know why he goes on camera this way.  As I've shared with my family and co-workers, he purposely goes off his Carbidopa-Levodopa prior to giving interviews.  He does this because by not taking his medication, he guarantees he'll be "off" and dealing with dyskinesia, which are the uncontrolled movements we all see.

This planned non-medicated strategy sounds a little screwy but consider this:  If you're interviewing someone with a debilitating, long-term, incurable disease and they look tan and healthy and "normal" ... well who's gonna write a check to support THAT foundation, right?  As twisted as it seems, if you're talking to someone who is "ill", it is easier for society to sympathize, to write that check, to look for ways to help if they can actually "SEE" the disease and all that it comes with.

Don't believe me?  Pay attention the next time you see an ad for any "save the animals" group.  Do they show a much-loved and well-groomed dog being walked around the ring at the Westminster Kennel Club Dog Show?  No of course not.  They show you some sad-faced mutt sitting alone in a tiny cage at a shelter.  In this contest, the mutt wins the prize every single time.

Having learned of April being "PD" Awareness month, I also decided to read the text of the Senate Resolution which, apparently, was approved and passed in March 2010.  It reads:

Whereas Parkinson's disease is the second most common neurodegenerative disease in the United States, second only to Alzheimer's disease;  (That was news to me - I figured it'd be in the top 5 but didn't know it was #2.)


Whereas even though there is inadequate comprehensive data on the incidence and prevalence of Parkinson's disease, as of 2010, it is estimated that the disease affects over 1,000,000 people in the United States;  (This was NOT news to me.  As my doctor's and I have discussed my own case, we've agreed that I probably was showing signs of tremor as early as 2007.  And, honestly, I probably would've waited on seeing a doctor about "my shake" even longer if it wasn't for The Awesome Fiancé becoming more and more aware of my trying to hide it.)

Whereas although research suggests the cause of Parkinson's disease is a combination of genetic and environmental factors, the exact cause and progression of the disease is still unknown;  (Also not news to me.  My PD is just another "health hiccup" I have ... just like me being the only family member who doesn't have allergies, or the only one who gets migraines.)

Whereas there is no objective test for Parkinson's disease and the rate of misdiagnosis can be high;  (Yeah - you may recall that I started out with "essential tremor", but that wasn't the fault of my GP.  He likely doesn't see much Parkinson's out of the blue like mine.)

Whereas symptoms of Parkinson's disease vary from person to person and include tremor, slowness, difficulty with balance, swallowing, chewing, and speaking, rigidity, cognitive problems, dementia, mood disorders, such as depression and anxiety, constipation, skin problems, and sleep disruptions;  (Please please please God - give me shakes, take away my ability to write long-hand, give me acne, but don't mess with my head or my bodily functions.)

Whereas medications mask some symptoms of Parkinson's disease for a limited amount of time each day, often with dose-limiting side-effects;  ("For now", she wrote confidently.)

Whereas ultimately the medications and treatments lose their effectiveness, generally after 4 to 8 years, leaving the person unable to move, speak, or swallow;  (God already knows how I feel about this.)

Whereas there is no cure, therapy, or drug to slow or halt the progression of Parkinson's disease;  ("For now", she wrote even more emphatically.)

Whereas increased education and research are needed to help find more effective treatments with fewer side effects and, ultimately, an effective treatment or cure for Parkinson's disease; (which reminds me that my follow-up appointment for the trial I'm participating in is next week so I'll need to bring my unused medication with me.)

Whereas the Federal Government, through the National Institutes of Health, the Department of Defense Neurotoxin Exposure Treatment Parkinson's Research Program, the Veterans Affairs Parkinson's Disease Research, Education and Clinical Centers, and other agencies, supports vital work to better understand Parkinson's disease and to find new treatments; (as they damn well should.)

and

Whereas the Parkinson's community will gather in Central Park on April 24, 2010, for the Parkinson's Unity Walk, an annual gathering inspiring people with Parkinson's, their friends, and their families:  (This year it'll be on the 28th, but I'll pass, thanks.  I'm just not a "community joiner" type.)

Now, therefore, be it resolved, that the Senate--
(1) supports the designation of April as Parkinson's Awareness Month;
(2) supports the goals and ideals of Parkinson's Awareness Month;
(3) continues to support research to find better treatments, and eventually, a cure for Parkinson's disease;
(4) recognizes the people living with Parkinson's who participate in vital clinical trials to advance our knowledge of this disease; and
(5) commends the dedication of local and regional organizations, volunteers, and millions of Americans across the country working to improve the quality of life of persons living with Parkinson's disease and their families.

So while every cause has their rubber bracelets (ours says "Move to beat Parkinson's") and their official cause color (ours is a nice shade of blue), it seems the Senate gave me and my fellow ... "movers and shakers?" ... April.

In spite of T. S. Eliot starting The Waste Land by writing "April is the cruelest month", I rather like April.  Historically, very good things have happened to me in this month, most notably April 22nd in 2009.  Yes, I was already showing signs of Parkinson's ... and somehow, that was not even among the top fifty things I was aware of.