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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.

Filtering by Tag: DBS surgery

Death by Parkinson's

Terri Reinhart

Every time I go into see my neurologist, she asks me if I've thought about having DBS surgery. I roll my eyes and let her know my thoughts are the same. It's still brain surgery and I'm not ready for brain surgery. At this, she will remind me of the limitations of my medication and say, “You are young, you know. I'll be treating you for the next forty years.”

I thought about this when I read, once again, an obituary which said the deceased had died of Parkinson's disease. Whenever I read this, I yell out loud to all the people in the newspaper, deceased or not, to inform them, “YOU DON'T DIE OF PARKINSON'S, YOU DIE WITH PARKINSON'S!” This is what I've been told, anyway. What's up? Am I wrong?

Time to go to the experts.

The Parkinson's Disease Foundation says this:

Q: I just found out a friend has PD. I don't want to ask him this question, but what is the long-term prognosis? Is it fatal? (anonymous)

        A: Parkinson's disease is not fatal.

It's disconcerting, to say the least, to see Parkinson's disease listed as the cause of death. This seems to be a widely held belief. One can even look on the internet and find lists of people who have died of Parkinson's. There's a list of celebrities and a list of politicians. There's even a list of chess players who died of this disease.


I wonder if chess players are more at risk for developing Parkinson's?

Admittedly, complications of Parkinson's can cause problems which can shorten one's life. Most of the complications are similar to getting old. If we can't move as much, we're more susceptible to things like pneumonia and heart disease. Choking is a danger. There are undoubtedly other complications, but I'll leave them for now. I don't let myself go down that road very often.

I'm not trying to discount these dangers. I've had the Heimlich maneuver done on me four times. From this, I've learned to not eat meat or salads when my medications are wearing off. I've also learned not to get angry and go on a rant about something or someone while I'm eating meat. That's what happened the first time I choked and it had nothing to do with Parkinson's.

There are many other complications of life which can cause death. Remember what Bilbo says, “It's a dangerous business, Frodo, walking out your front door.” If we go about thinking of all the possible ways our lives can be shortened, we won't go very far at all. And, of course, we know staying home and doing nothing isn't conducive to a long life, either. I don't really think about this much at all, not anymore, and not until I read one more article listing death by Parkinson's.

Out of curiosity, I had a look at one of the websites with its list of PD victims. The site is “The Political Graveyard” and contains many different types of lists. I looked at their list of politicians who died of Parkinson's disease. I was pleased to note how much information is included in each entry, including the exact age of the person in years and days.

I was even more pleased to see the average age of the victims. Most were in their mid to upper 80's. The one in his 60's actually died of a heart attack and had Progressive Supernuclear Palsy, not Parkinson's. Then there is Milward Lee Simpson, from Cody, Wyoming, who died of Parkinson's disease at age 95 years, 210 days. If PD is what took his life, it sure took its time about it!  

I'm going along with my doctor, though not necessarily with her suggestion of brain surgery. I'm going to assume she'll be treating me for the next 40 years. That will make me 94 years, 360 days old... and counting.

I realize, of course, this might not happen. Who knows whether my doctor will still be around in forty years.