Thursday, December 3, 2009

The Person in the Parkinson's Disease Mirror

PD Setbacks and Moving Forward Again

Since being DXed with Parkinsons 6 years ago I've only had a mild progression of the disease.  But about a year and 1/2 ago the progression set in more seriously. More stiffness and rigidity started setting in, more often swallowing difficulties, occasional symptoms on the "good" side of my body.

I'm no longer comfortable in my skin; I'm very uncomfortable in my facial expression.  I've heard other patients describe their face as the  Parkinson grimace.  My wife says I don't have this, just not much expression.  Yet, I can smile with my face and  my eyes when I'm really happy or amused. 

She's not happy with my voice again.  The fact that the volume goes down near the end of a sentence is a longstanding problem - predates the PD and predates even our marriage - so we won't go there.  The pitch of my voice is higher again.  Which made me realize that I hadn't been doing my vocal exercises.  I pulled out Mary Spremulli's Voice Aerobics DVD and did those Voice Aerobics right along with the class.  My voice was better for the rest of the day. More volume, better inflection, deeper pitch.  And I felt happier because I felt better about myself.

Self image is very important.
It isn't just what other's see. 

How many of us dread looking in the mirror or seeing a reflection in a glass door because we don't know that person, we have a hard time being that person.  It's bad enough going through the normal aging process.

Improving self image, helping Mother Nature while holding the line against Father Time involves exercise. Sometimes it feels as if my life revolves around exercise and in a way it does. So even though I go to exercize therapy 5-6 days a week, that's not enough.  I've neglected the exercises I was doing at home between going to the therapy center.  No more.  Doing PD body maintenance can become full-time.  And I admit that I do not want to have to maintain full time. I just want to be.... A luxury not granted to those with Parkinson's disease.

I realize now that when I stand up, I need to stretch before walking.  I started doing head and neck stretches while seated at the computer. And I'm willing to ask my wife to correct me.  Before she would just tell me, now I can ask.  Healthier, I think, more positive. 

It is so easy with Parkinson's disease to slip back into the "waiting to die" mode, to begin to feel that you have nothing to contribute.  My wife reminded me this morning of the positive things I can do.  Make your own list.  Circumvent the PD depression. Find YOUR worthwhile inner person.

Addendum:  Finding the positive is what you can do changes as the weeks and months go by.  One one hand we need to be aggressive and on the other hand we need to accept what we are sure we cannot change.
It is so easy to become trapped within the dichotomy.

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