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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Optimism

Terri Reinhart

If you didn’t see the television special that was on last Thursday with Michael J. Fox, you can still see it at www.abc.go.com. Select “free episodes”, then select “Michael J Fox” from the list. It’s definitely worth watching!  It's not about Parkinson's, it's about life.

 

When I was first diagnosed with Parkinson’s, a number of people responded by saying, “Oh, that’s the thing that Michael J. Fox has.” Yeah, that’s right. I’ve got a celebrity disorder. I wasn’t very interested in finding out about Michael’s experience with Parkinson’s. I had my own challenges to go through and the first one was just figuring out what this was going to do to my life. I didn’t go out and purchase his book right away and I began to cringe every time someone mentioned his name to me. He’s a celebrity who happens to have Parkinson’s. So what? There are loads of regular people who have this, too.

 

Not that I was feeling sad and sorry for myself or that I had a negative outlook on my life. In fact, I was feeling just the opposite! Somehow, getting the diagnosis of Parkinson’s had a freeing effect on me. There was nothing I could do to change the fact that I had this disorder and nothing I had done to make me have this. It was totally beyond my control. Why that was freeing, I don’t know. Perhaps it is because I have a tendency to blame myself for anything negative that happens in my life. Or perhaps it was because it was the least scary of all the possibilities my neurologist had been contemplating. I did most of my grieving during the years when I was having physical challenges and did not know what was causing them. That was a very difficult time for me.

 

Whatever it was, I found myself feeling lighter than I had in years. I knew I couldn’t do everything I did before and I knew I didn’t have to do everything! There was so much I let go of. And those things I let go of? I found that I really didn’t need them anyway. At the same time, I was also being surrounded by friends, old friends coming back into my life and new friends who have become important to me. My family has always been my anchor and my support and I have been fortunate to be involved in the Denver Waldorf School, which is a true community. Now I had an even larger circle of support. My social life was and is very full and fun. I am savoring my friends and family, enjoying them more and more and worrying less. Interestingly enough, despite the obvious challenges I was facing physically, and the fact that I had to leave teaching, a job I had worked at and loved for nearly twenty years, I was more prone to depression and anxiety before I was diagnosed than I was afterwards. I found myself actually grateful for the challenges that my Parkinson’s was bringing to me. If this had in any way led me to where I am now, I wouldn’t change a thing.

 

I guess you could say I had become an optimist.

 

Then, when I started to get involved with other people who had Parkinson’s, I was surprised. Not everyone had the same attitude that I had. I heard people describe Parkinson’s as a “beast” and the “enemy”. I had people tell me to be strong so I could fight this and beat it. Maybe it’s because I spent so many years as a kindergarten teacher, telling children not to fight, but this didn’t set well with me. I wanted to learn how to live with this, not spend my energy fighting it. I decided that maybe I would look at my Parkinson’s more as a partner, maybe a dance partner even! I would learn how to move in a different way in order to accommodate one more partner in my life, just as I have learned how to make room for all my new friends.

 

Then, about a year or so after I was diagnosed, out of curiosity, I began to look up a few things about Michael J. Fox. I learned about his foundation and read about the work he had done. I read his first book. I enjoyed reading his book but it was when I watched him being interviewed on television (www.charlierose.com/view/interview/2531) that I was suddenly stopped in my tracks.

 

Here was someone who understood what it was like to have Parkinson’s, in the same way that I did! He, too, said he was happier than he had ever been before and when someone asked him what he would do if offered the possibility of going back in time and never having Parkinson’s and having his old life back, he freely admitted he would say, “Screw you.” He wouldn’t change his life for anything and since his Parkinson’s is part of what brought him to this point, then he certainly wouldn’t change that, either. Michael J. Fox describes his Parkinson’s as a gift. It’s a gift that keeps taking, but a gift never the less.

 

I feel the same way. It’s hard to rationalize this attitude and maybe you can’t, really. Maybe it’s different for everyone. Maybe it’s those “happy genes” that some of us have. Of course, there are times when I get tired, feel very ill, or find I can’t do something that would have been easy for me at another time of my life. I do get frustrated. I can also be sad and even angry about my challenges. But those feelings don’t take up a large percentage of my time. Most of my time is spent connecting with people, teaching art classes, helping the kindergarten children learn string games, visiting with friends, and taking care of my family. Maybe I can’t walk around the block without getting exhausted but, hey, walking is overrated anyway. The important thing is that I can find joy in this life that I’ve been given.

 

And since being diagnosed with Parkinson’s, I’ve been able to find that joy in abundance!

 

Thank you, Michael J. Fox, for all you do and all you are.