May 28, 2012

There has been a recent noticeable change in my body and mind. I've slowed down physically. I still go out every day, but I'm content staying close to home. I've developed fear. I don't believe that there has been any change in my mental capacity, or strangely in my mood.

Walking is a struggle,. Even when I'm able to time my walks around the meds, the heat is overbearing. The sweat pours out of me. The subway cars are air conditioned, but the platforms oven exceed the heat on the street. Stand next to a pungent New Yorker in a black suit on a subway platform in August. Even Dick Cheney would consider this torture.

I also have developed a fear of subway steps. They're often wet and covered with food wrappers. As opposed to the trains themselves that are covered with "singing" rappers.

But, my mood hasn't changed. That's strange, because when I was younger, I could be morose. I'm not anymore, I don't entirely know why, but I'm not going to question that.

It's an awkward feeling to know that in many ways, your best days are behind you, and you failed to appreciate them.

May 19, 2012

What was the toughest time? Oddly it was the waiting to be diagnosed. I went from Doctor to Doctor, they believed that I had carpal tunnel syndrome, a brain tumor, bone chips, fleas and a yeast infection. Yet I'm convinced that they suspected the truth.

Why didn't they let on? They were more concerned with eliminating possibilities that diagnosing the problem. Had somebody sent me to a Parkinson's specialist earlier, I could have started the long process of healing earlier. Yes healing.

I don't mean physically healing, but mentally healing. Coming to terms with my future. I wonder if those Doctors understand how precious a year is to somebody with an illness. Since we have no way to predict if this will progress quickly or slowly, it would have been great to have started and finished the inevitable depression sooner.

This disease sometimes controls your mind, but often your mind can control this disease. I would have liked to have learned that earlier.

I've noticed a decline in recent months. Not a substantial decline, but one that only my wife and I would see, I don't know what tomorrow will bring, so I choose to enjoy today. It would have been nice, if those Doctors had suspected PD for them to clue me in earlier.

May 11, 2012. Nobody told me

No matter how hard I try to avoid it, Parkinson's is slowly taking over my life.    It's the first thing that people ask me about,  "How are you feeling, Marc?"  "What' shaking?"  Invariably, it's me.  

There's no way for me to disguise it.  I just saw a tape of my interview.  I'm well spoken, but I didn't move.  I look stiff.

Oddly, I'm not depressed.   I've got a perseverance that I was unaware of.  Tell me that I can't walk somewhere, and I'll be there.   The one thing that I do  like about it is fighting it.
But I'm tired now.   It's a all consuming, constant battle.  I know that I'm not in it alone.  Friends, old and new, have supported me, more than I deserve.

I hate the obsession!  I wish that for 10 minutes, that I wouldn't think about it.  That part nobody tells you about.  It will consume your every waking moment.

If you don't have it, you can be empathetic, but you can't grasp the fear of a crack in the sidewalk,  the difficulty cutting your toenails, having to strategize the simple act of putting on your underwear.  Or accepting the inevitable that it takes two lights to cross Queens Boulevard.

I am 6'2", 240 lbs, physically as strong as an Ox, yet at certain times of the day I struggle holding a door open for an elderly lady.

Nobody prepares you for the mental aspect.  

I've met some wonderful people because of Parkinson's.  People who fight this disease with every ounce of energy that they've got. If not for themselves, for the next generation.

I'm sure that there are those who get deeply depressed.  This hasn't been exactly a happy post.   I've chosen to be around those who would rather fight than quit.  I'm not blind,  I know that it could get worse, but remind me, every day of my life, not to quit, to keep on fighting.

Nontraditional Religion.

I am not a person who considers himself religious in the traditional sense of the word.   As a matter of fact, the last time that I was in temple my mind wandered. I thought to myself, “what would happen if Bruce Springsteen, were in fact Jewish, and was the Cantor?
‘ Jews like us, baby we were born to pray.’”                                                                                

I am so untraditional that I call myself a “Jew for Jeter.”

Knowing this, would you call me a hypocrite, if I say that I feel blessed?

I don’t believe that I’m blessed by God, but if you want to feel that way, I’m not going to argue.

I’ve had a pretty easy, uncomplicated life.  Until recently my toughest decision may have been choosing who not to root for in the 1986 World Series.  I ended up hoping that both teams would somehow be disqualified.    Now, I have real issues to face.

I face a world of uncertainty.    Will this disease continue to progress at a snail’s pace, awarding me the opportunity to make my life productive?

It’s not that I’ve been unproductive, but admittedly, I’ve looked at life from the cheap seats.   Yeah, I’ve been the uninvolved complainer, but besides voting, I’ve never done anything.  When I heard that Hostess was owned by ITT baking, which had something to do with the bombs in Viet Nam, it was too much for me to give up cup cakes.

SO why am I suddenly blessed?  Why have I been given a second chance.   I HAVE SEEN THE LIGHT!!!   Can I get a Hallelujah?  Alright enough of that crap.

Everybody that I know has been good to me, my family, my friends etc... They don’t treat me as handicapped, they don’t marginalize me, they treat me just as they always have.  I appreciate that.  I have no opportunity to feel sorry for myself.   That would be a waste of time.

I’ve also gotten involved with a group of Parkinson’s advocates.   These people are energized, these people are intelligent, these people are selfless.   Not one of them asks for pity.   Not one of them does less then they did before being diagnosed.  I respect these people.  They’ve taught me so much.

I’m 55 years old.   For some strange reason that is called middle aged.    I’ll accept that lie, because now I have 55 years to pay forward.   They might not find a cure for this insidious disease during my lifetime, but my role is to exert any effort that I can, to help find a cure for future generations.    I do it with pleasure.

Ladies and Gentlemen of the Jury

There are times that I wonder where this shaky journey that I'm on will go.

There are certain facts:  1) You don't die from Parkinson's Disease, 2) On the other hand, you can die from one of the symptoms; 3) There is currently no cure; 4) Everybody dies of something.

"Ladies and Gentlemen of the Jury, those are the facts.   They are not in dispute.   Now what of the defendant, Marc Sherman, aka Groucho Marc, aka Jello Marx, aka Marc I Am,  aka Oscar Marcinson, has he led an exemplary life?"

"He freely admits to at times in his life having been selfish, sloppy, sarcastic and lazy.  As a matter of fact that is written on his CURRICULUM VITAE (Latin for aren't I a pompous ass?  It would have been just as easy to say Resume). Will this life altering disease change him?"

"So at 55 years old, much closer to the end than the beginning, has the defendant exhibited any remorse?  Constantly.  But what that that mean, words and thought are meaningless with accompanying deeds."

"So, Mr Foreman of the Jury, have you reached a verdict?"

"Yes your honor we have, the defendant has exhibited no propensity to change  so we sentence him to a life sentence with himself."