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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.

Too old to be young and too young to be old

Terri Reinhart

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One lovely spring day in the kindergarten, many years ago, a young boy was showing me how he could do all sorts of tricks on the swings. After each trick, he would ask, “Can you do this, Mrs. Reinhart?” I finally told him no, I was too old. His reply? “It's okay! You can do it when you're younger.” It was as simple as that.

If only age would continue to be so simple.

The other night, my husband and I attended a lovely gathering in support of the Parkinson's Association of the Rockies. At one point in the evening, a lovely young woman, Katie Strittmatter,  spoke about the new group for people with Young Onset Parkinson's disease. She described the need to have something different for these younger folks with Parkinson's as their challenges are much different than those who are diagnosed later in life.

I found myself wondering: what are the rules here? Some official websites list age 50 as the cut-off. If you are diagnosed before age 50, you are Young Onset PD, after 50, it's just plain old PD. Another website listed the age cut-off at 40.  Now it gets even more complicated.

I was diagnosed at age 49.  Am I young or old? Young Onset refers, of course, to when our symptoms began and when we were diagnosed. Do we keep that designation even when we are getting too old to be considered young?

There are different challenges, depending on whether you are old or young. My father was diagnosed in his 80's. I had to step in and insist he be treated for his Parkinson's. His doctor seemed to think my dad was about to die anyway, so why worry? I informed his doc that my father's family tends to live long lives.  My grandmother lived to be 97 and her brother lived to be 101. My dad insists he has maybe 20 good years left.  He'll be 89 next month.

For the Young Onset crowd, it is challenging to deal with PD symptoms while trying to manage a job and caring for a family. Being on the medications for more years adds up to a greater risk of having to put up with the more annoying, or even disturbing, effects of these drugs. Young folk need to stay as active as possible because their lives are still very demanding.

I'm sort of in the middle now. My kids are grown, but I have very young grandchildren and my elderly parents to look after from time to time. I'm retired, but I want to stay as active as I possibly can as long as I can. I have things to do and places to go. Katie has invited me to come to the Young Onset PD support group. They don't just sit around and talk about their challenges, they do stuff. They go bowling and do other cool things. I figure I'll try it out while I'm still young enough to join in.

After all, I only have maybe 40 good years left.

 

You can find information about support groups, exercise programs, and much more at:

The Parkinson Association of the Rockies