July 14, 2017

Update on Aging and Parkinson's and Me

Now that my energy is finally returning after this year's setbacks, I want to provide an update on the state of my aging and my Parkinson's disease (PD).

Aging
I had my 88th birthday on May 26. According to the Social Security Administration's Life Expectancy Calculator, a man who reaches age 88 now can expect, on average, to live to be 93.

As I said to my urologist in 1992 when he told me I had prostate cancer, it's the quality of my life -- not its length -- that matters. Since then, my primary doctors have heard the same thing from me.

My Parkinson's Diagnosis
Like about one third of people with Parkinson's, I don't have the tremor associated with the disease... a fact that often delays diagnosis. My internist at the time missed the boat completely. In 2005, I told him I had lost my sense of smell, an early warning of possible PD. In 2006, I reported that my right arm wasn't swinging normally. In 2007, I described having balance problems, and he sent me to a physical therapist who -- I later realized -- suspected PD and asked me repeatedly, "Have you told Dr. S about your right arm not swinging normally?" That was ten years ago.

That internist never diagnosed my Parkinson's. But my kids were becoming increasingly concerned about my right arm, and the slowing down of my body movements generally. At their suggestion, I saw a neurologist in September, 2009. He quickly diagnosed PD.

The Progression of My Parkinson's
PD is sometimes referred to as a "boutique" disease, unique to each individual. While there are broad commonalities of symptoms from one patient to the next, the progress of the disease can vary significantly.

Issues with movement are idiosyncratic. Non-motor symptoms are also very individualized. Some people (like me) find that symptoms like fatigue interfere more with daily life than problems with movement.
After my ten years with the disease, I often refrain from saying I have Parkinson's. Instead, I'll say "I have John Schappi's Disease."

I joined a PD support group in November, 2009. Attending all those weekly meetings has shown me the great variety of forms -- and duration -- this disease can take.

Leon Paparella, our group's moderator, found out he had Parkinson's 30 years ago. Newly diagnosed members in our group are encouraged to learn about our high-functioning leader's history.

I'm now our group's senior member. That "distinction" makes me a bit uneasy, since there's usually a fairly short tenure in the position.

People who've had spouses, parents, or friends with PD increasingly are telling me "You're doing surprisingly well given your age and 10 years with Parkinson's.


For people like me -- diagnosed during our senior years -- living for ten years with PD is pretty common. But in their final years, people typically spend most of their time in wheelchairs and in bed, and require full-time caregiving.

Since PD is so idiosyncratic, I can't claim that the things I've done to deal well with my illness would work for anyone else. Nevertheless, I'll be writing a series of posts describing those things that may have played a part in keeping me out of the wheelchair. bed or grave.

Stay tuned.



3 comments:

Anonymous said...

Hi John, thank you for continuing with the blog. My dad is 78 and in early stages of his PD. I discovered your blog a few months back, and it was really comforting to read your posts, and to learn how people in your age group deal with this problem. Thanks again for staying with us!

Anonymous said...

Of Possible interest:

A new (May, 2017) Norwegian Parkinson’s Study with another study it mentions:
Berstad and Berstad
Parkinson’s disease; the hibernating spore hypothesis

http://www.medical-hypotheses.com/article/S0306-9877(17)30077-4/pdf

https://www.ncbi.nlm.nih.gov/pubmed/28673590

https://www.academia.edu/21080621/Parkinsons_another_look

Lyin said...

Hi John,
Thanks you for sharing your PD disease. I found your blog because of google 5 -HTP. My mom is 65 and has PD for 17 years and takes Madopar and Biperin but has a serious side effects recently. She has acupuncture once a week (we live in Taiwan). I want to find some supplements for her. Would you recommend useful supplements for PD?

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