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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.

Regular Exercise and Parkinson's

Terri Reinhart

When I told the parents in my kindergarten class that I would not return to teach the following year because I had been diagnosed with Parkinson’s disease, I felt compelled to let them know that there were some positive aspects of this diagnosis.

 

These included:

 

1. Now I have something to blame things on. Every time I am a little spacey, uncoordinated, forgetful, or downright weird, I can just blame it on the Parkinson’s. It’s not me.

 

2. Now I have something in common with Michael J. Fox.

             and.....

 

3. No one will ever, ever expect me to run a marathon.

 

There were other reasons, too, why I looked at this diagnosis as being very positive. For one thing, my doctor had not been sure at first that this was Parkinson’s. Leave it to me to be just a little bit different and more complicated. I try hard. I went through several neurological evaluations and the doctor talked with me about a number of possibilities, including Huntington’s and a strange disorder which she referred to as “Wild Frenchman from Maine Syndrome”.

 

I almost wished I would be diagnosed with that last one. I think I would have had a different reaction when I told my family and friends. Tell others that you have Parkinson’s and the response is usually the same. “Oh, I’m so sorry.” This comes with a pat on the arm and a sad smile. Not that I minded, it’s just that I didn’t really know what to do with that. But just think of what would have happened if I'd told my family and friends that I was diagnosed with “Wild Frenchman from Maine Syndrome”. They'd be too busy laughing to feel sorry for me.  That I could handle. 

 

The possibility of Huntington’s was not something I wanted to contemplate.

 

When the doctor finally told me that she was 95% sure that I had idiopathic Parkinson’s disease, she had a big smile on her face and said, “Let’s hope it’s that!” We practically danced out of the room.

 

The reason that the doctor was so thrilled was because Parkinson’s is the most treatable of the neuromuscular disorders. The medications are impressive in how quickly they can make you feel like a normal person. And now, many researchers are saying that exercise can be one of the best treatments for Parkinson's, perhaps even better and more effective than medications and even surgery for keeping you moving. Walking, biking, dancing, and yes, even running marathons are considered to be GOOD for you.

 

Provided, of course, that you actually do it.

 

I was involved in an exercise study for 16 months. During this time, I rode my exercise bicycle for 30 to 40 minutes every day. I was stretching and even did some exercises with weights. And I recorded every exercise session. Once a month, along with the other members of our group, I met with the physical therapist who made sure we sticking to the program. We had to show our exercise logs to the therapist. I did well! Then the study was suddenly over.

 

It’s been about six months now since it ended and I have not exercised regularly since then. When I recently had to check in with the rehab doctor, I was gently scolded and urged to begin exercising again. Actually, when I think about it, she wasn’t really that gentle about it. She wanted to know what my barriers to exercising were. I said it was time. Life gets busy and it’s hard to have time to exercise.

 

Make the time, she said.

 

I had just about caved in and decided that I would have no other choice than to get on the bicycle again when something remarkable happened. A friend of mine told me about another exercise study that had taken place. This one showed, amazingly, that doing craft work, SUCH AS KNITTING, had the same health benefits as aerobic exercising! Wow. If this is the case, and I have no reason in the world to doubt this person (not to mention the fact that I have no desire to doubt her), then I can tell my doctor that I am exercising regularly. In fact, I am exercising about two hours per day!

 

Now, I know there will be a few people who will just have to go on the internet to see if this is really true. If you find out, let me know.  However, even if there are those who refute this information, I’m sure it’s just a matter of needing more research. For this, I’d be happy to be a guinea pig.

 

I’ve got plenty of knitting to do.