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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.

Long Walks

Terri Reinhart

 

My husband and I have decided that we are going to invest in a mobility scooter for me. It took a long time for me to come to terms with this idea. It wasn’t just that a mobility scooter would make me look more disabled. It’s the picture in my mind of the villain from the movie, “Waking Ned Divine” that made me balk. If you haven’t seen the movie, the villain is a grumpy old woman who rides along in her mobility scooter, arguing with everyone she sees. She is not the least bit likable. I certainly didn’t want to be anything like her.

What finally changed my mind was when I actually tried one. I had brought my daughter and her friend to the zoo for the day and realized, once we arrived, that there was no way I could walk around the zoo. My limit with walking was, at the time, about half a block. So, I sat and waited while the girls wandered around the zoo without me. They had a marvelous time and when they returned to check on me an hour later, they informed me that they weren’t nearly finished looking at everything and would need at least another two hours to wander about.

The thought of sitting and waiting for another two hours was not a pleasant one. I debated about what to do and then looked across to the main entrance of the park. There I saw the scooters. They actually rented them! I continued to debate, but not for long. The idea of actually being able to go around the park with the girls won me over. I splurged and paid the ridiculous amount of money for the rental, received a two minute driving lesson and we were off.

Heaven...

It was absolute heaven to be able to move without the work! I went all around the park and often went in circles, just because I could. I left the girls in the dust a few times. Or I would have, if the scooter could have gone more than 4 miles per hour. At least I thought about it! I rode and rode and didn’t want to leave the zoo. The time went by quickly and I went home humming to myself. It was so glorious to be able to move!

We considered investing in a scooter right away but, unfortunately, though the neurologist I was seeing at the time, agreed with me that a scooter was appropriate, the family doctor did not, and so we had no hope of getting insurance coverage. We waited. In the meantime, I was finally diagnosed with Parkinson’s, I started on proper medication, and I received new leg braces from my physical therapist. Now, just maybe, I could walk on my own and not need to invest in anything else.

It’s been over two years now since I received my diagnosis. I can walk better now that my medication is stable and I have the leg braces. I can walk better for nearly a block before my feet decide they still want to turn in and then, within 30 feet or so, walking will become almost unbearably difficult. We decided it was time to think about the scooter again. Last week, I spoke with one of my neurologists about this possibility. She was not thrilled. She would prefer that I adjust my medications again and then, maybe I could walk two blocks instead of just one. Exercise is so important with Parkinson’s.

I didn’t say anything then, however, the point of getting a mobility scooter right now, has nothing to do with whether or not I exercise. I still walk whenever and however far I can. I have my exercise bicycle and a whole list of stretching and strengthening exercises to do at home. The scooter has another purpose.

My husband is retiring at the end of June. When he first told me the news, I’m afraid I went into a panic. Retiring? That means that we will...gulp...be together in the same house, 24 hours per day, 7 days per week? For, maybe, the next thirty years?

We’re going to have to have some rules. That’s the first thing I told him. He looked a little bewildered at first and then said, “So we don’t drive each other crazy?” I nodded, though in truth, I was thinking, “So you don’t drive ME crazy”, but that is just selfish. I’ve been home on disability now for over a year and I quite like my schedule and my freedom to do what I want, when I want to do it. This will be a big change. In fact, this is one of those changes where you feel as though your life is suddenly cut up into confetti bits and thrown up in the air again. How it will come down is anybody’s guess.

We are trying to plan for this change, however, and the mobility scooter is part of that planning. The first rule, I told my husband, is that we need to find something we can do together, regularly, that we both enjoy. When our children were younger and there wasn’t a lot of opportunity for us to have time together, we made sure to create time for the two of us, even if it was just 15 minutes at the end of the day. Now, we have plenty of opportunities but rarely take advantage of them. Now, more than ever, we will need to find a way to get to know each other in a new way.

We both enjoy taking long walks. And, since I can’t really go on long walks, I plan on riding the scooter so I can accompany Chris on his walks. Going only two blocks wouldn’t cut it. We plan on being gone for at least 45 minutes per day. We want to savor this time together.

I know we’ll have more challenges and I suspect a few more rules.  We’re both used to a certain amount of freedom and time to ourselves, too. It will be a lot to get used to. But I think we’ll be ready.  We've been through changes before. 

We’re getting used to putting the pieces back together again.