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.