July 11, 2011

Midyear Checkup: Shifting Blog Focus Reflects Emerging Personal View on Aging with Parkinson's

Just as my new car will need a 5,000-mile checkup, I need to take this old jalopy (me) into the "garage" for a proper midyear self-assessment.

I received my Parkinson's diagnosis in September 2009 when I was 80 years old. I'd been in good health all my life (except for some slow-growing cancer cells after a prostatectomy in 1995). But my good fortune changed a few years before the PD diagnosis. I realize now that I was dealing with Parkinson's-related depression and insomnia. I was also having balance problems (no tremors) that I attributed to aging and assumed they'd just get worse.

The Parkinson's diagnosis and treatment got me back on track. A year after the diagnosis, I started this blog. 

In my midyear 2011 review, I'm struck by how the shifting focus of the blog parallels my changing views on living with Parkinson's. I suspect that others dealing with chronic and progressive ailments follow similar trajectories. Looking back, I see three stages in my progression:
1) The Search for a Miracle Cure for Me and Everyone Else 
The blog initially was titled "Parkinson's and 5-HTP and Me" (the URL for the now-renamed blog retains this startup title). From the beginning, I found that the over-the-counter supplement 5-HTP, a serotonin booster, took care of my pre-existing depression, insomnia, and constipation.

I discovered that warnings on reputable websites about possible adverse effects of 5-HTP were based on two decades-old, small, ambiguous studies. In time, repeated references to those old studies in research papers dealing with other subjects created the false impression that dozens of studies confirmed those negative side effects -- a development that certainly discouraged the supplement's use. Meanwhile, 5-HTP has been widely used, particularly in Europe, without any verifiable reports of serious problems.

I was angry and frustrated that people with Parkinson's were being discouraged from using my "magic pill."

And so, I started the blog to tout my discovery.

I've since learned that what works for me might not work for others. (But my neurologist recommends trying a low dose of 5-HTP to his newly diagnosed patients with Parkinson's.) In any case, I began to back off touting 5-HTP.

From talking with others, I've found that this quest for quick cure-alls is common among people when first diagnosed with a serious disease.

2) The Switch to Researching Everything Related to Parkinson's
The next stage became learning everything I could about all Parkinson's studies. In my 40-year career in the publishing industry, I especially enjoyed work that required research and writing. So, I enthusiastically threw myself into becoming the "Answer Man" on All Things Parkinson's.

I began promoting the blog as a place where people with Parkinson's -- and caregivers -- could come with questions. For whatever reasons, few came forward.

Meanwhile, I wondered: were my problems a function of PD, or simply part of growing older? And I noticed that the recommendations in Parkinson's studies were usually similar to general advice for healthy aging.

3) Now, the Name of the Blog and The Focus of My Life is "AGING and Parkinson's and Me" (Emphasis added.)

A member of my Parkinson's support group practically yelled at a recent meeting: "I don't need to learn any more about Parkinson's. I need to concentrate on what's going to make me feel better today."

That announcement pretty well describes where I am at the year's midpoint. Of course, I'll continue to follow the research. But I'll focus most of my attention on those things that can enhance the quality of my life "one day at a time." And I hope that what I find -- and write -- might help others.

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