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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.

Setting Goals

Terri Reinhart

Several things occurred to me this week. First of all, I realized that it's been over four years since I was diagnosed with Parkinson's disease. Then I remembered, that is to say, I was reminded that April is Parkinson's awareness month. After that, it dawned on me that April is almost over. I think that's okay because I'm still very much aware of my Parkinson's disease.

There's more, though. When I was first diagnosed with Parkinson's, I had one major goal. That was simply to learn to enjoy life on this new path that I've been given. I didn't have a lot of other goals at that time. I was busy being totally overwhelmed by all the changes in my life and in our life as a family. Lots of things changed. I had to leave my job which I dearly, dearly loved. I couldn't take walks anymore. I couldn't make it through the day without two or three naps. I was alternately very UP and then, without warning, I would be down in the dumps for hours or days. My poor husband lived through all this and, I'm sure, often wondered who this crazy woman was and what did she do with his wife. Somehow or other, he made it through. I'm glad, 'cause I kinda like having him around.

I didn't feel depressed. All in all, I was and am happy with my life. A lot of the ups and downs were due more to the challenge of getting the medication balanced. That's huge. I did a lot of things during this adjustment time and I learned a lot about how to laugh at myself and appreciate the humor in the daily challenges of Parkinson's and Dystonia.

What I didn't do was come up with serious goals for myself. True, I did learn to swear. I also started writing and developing my art work. I tell people that I'm a freelance writer and artist; “free” as in unpaid. Beyond just the therapeutic value, I didn't set any goals for my art or my writing. I wasn't looking at creating a business or writing a best seller. I was living in the moment. Wow. That's something I had to learn how to do. It was the first time in my life I had been able to let go of the baggage (or at least much of it) that I had carried around for so long. In this way, my diagnosis of PD was incredibly freeing. I stopped worrying about little things.

I was living in the moment. That's a wonderful place to be sometimes. It's nice to know I can go into that space when I need to rest up a little. It's not a place to stay all the time. I need to look back and look ahead, too. It's time to see where I've been and where I want to go. It's time to set some goals.

My first goal is to retrain myself to walk again. I wouldn't have thought this was possible even two months ago, but I've started in a physical therapy treadmill walking study. This study is just for us folks with PD. I've been walking for 30 minutes, twice a week, for four weeks now. I have two more weeks to go with the study. My speed has increased, my dystonia doesn't kick in nearly as much, and my arms have started swinging again. I don't even have to consciously think about it. My therapist, Barbara, has me walking around the neighborhood, too; at least around the block. I'm up to walking half a mile in 14 minutes. That's down from walking a quarter of a mile in 17 minutes. The first step in meeting my goal will be to continue the treadmill walking twice a week, even after the study ends. A mini goal will be to walk three quarters of a mile, or one lap of the walk-a-thon, before I need to use my walker.

 Yesterday, I went to the Vocational Rehabilitation office to see if they can help me figure out a way to go back to work. This is my second goal. I'm not sure what that look like. Regular job hours would be a challenge for me. A better choice would be to turn my art work into a business. I could be official! The Vocational Rehab folks would support me through this and help me learn the ins and outs of being a real business.

My third goal is to finish writing a novel that I started a few months ago. The goal doesn't insist that it be a New York Times best seller, nor does it have to be made into a movie that wins an academy award. I just want to finish it. I've never written a novel before and have no idea whether anyone but myself will be at all interested in what I write. With any luck, it'll be just good enough that I'll still be interested in it when it's done. The process had taught me a lot and I have met a lot of wonderful people along the way.

My last goal is to continue learning how to laugh at myself and find the humor in my everyday challenges. Oddly enough, as I start looking at where I've been and where I'm going, suddenly things can seem overwhelming again. My self confidence has plummeted in the last few weeks. Find the balance, that's what I need to do. Make my goals but be flexible. Live in the moment but don't forget where I've been. I'm incredibly lucky! That I know. I've got a wonderful family and amazing friends. I can't depend on them for my self confidence, however. That's up to me.

Maybe I should shoot for that academy award. If I accomplish my other goals, at least I won't trip as I walk up to accept it.