I Remember…

I remember 1957. It was my first exposure to Parkinson’s disease (PD) even though I didn’t know it at the time. There was a sudden hush every time Mr. Crawford, our landlord and family friend, was nearby. Mr. C., as we called him, would shuffle haltingly with a cane, stopping entirely on occasion, before resuming his glacial advance. In addition, his arms appeared to shake, and it looked like he was rolling a pill between his fingers and thumb. Sometimes another adult would shepherd him along. No one told us kids what was happening; they just murmured, “Poor Mr. Crawford.”

I remember 1995. That was the year I understood Mr. Crawford had had PD. 1995 was when I learned my father had Parkinson’s. His symptoms were classic: tremors, slurred speech, and inability to clothe or bathe himself. Eating was a frustrating experience that involved time and a great deal of patience. Combined with diabetes, gout and a host of minor maladies, it wasn’t long before my father required full-time care in a nursing facility.

I remember 2012. Tremors in my left hand became apparent. Despite my efforts to hide them from my wife so she would not become concerned, it was obvious the tremors were getting worse, and I needed to see a doctor. Within a year or so, there was no question I had Parkinson’s disease and was formally diagnosed by a “movement disorder specialist”− a neurologist with specialized training − in early 2014.

Following a brief period of denial and self pity, I became determined to learn as much as possible about PD. Unfortunately, much of what I learned was not positive. PD is chronic and progressive. There is no cure. The drugs designed to ameliorate symptoms have their own, occasionally severe, side effects. Some people opt for “deep brain stimulation” where electrodes are inserted into the brain stem akin to a pacemaker for the brain. Tremors don’t appear until one-half to three-quarters of the dopamine-producing cells in the substantia nigra region of the brain have already died. Finally, the cause of PD is unknown, and the only 100 percent foolproof way to prove one has PD is an autopsy, something most of us are willing to avoid as long as possible.

What surprised me the most was learning there is a plethora of non-movement symptoms associated with PD. These include depression, anxiety, apathy, constipation, sleep issues, vision problems and loss of the sense of smell.

There is some good news. The cheapest, and perhaps most effective, therapy is exercise. Along with improving movement and balance, exercise may have a “neuroprotective benefit” that slows the progression of PD. There are dozens, if not hundreds, of on-going studies looking at causes, preventions, treatments and cures. The government (National Institutes of Health and Department of Defense for example) and PD organizations such as the Parkinson’s Disease Foundation help fund this research.

I remember 2015. This is the year I became determined to live with PD and not be defined or dominated by it. Yes, my tremors have increased; yes, my speech has softened, and no I can no longer smell my wife’s perfume. But I can recognize my apathy and choose to be active and social. I can choose to inform and educate others about PD. I can participate in numerous research studies. I can cherish and celebrate my wife and caregiver, Pamela. I can maintain a sense of humor − by the way − if you hand me a glass of milk and wait a minute, I can make you a milkshake.

Most communities have a support group for PwP’s (people with Parkinson’s) and their caregivers. More information is available from Parkinson’s Disease Foundation (pdf.org) or the Michael J. Fox Foundation (michaeljfox.org).

A.C. Woolnough spent 37 years in public education as teacher and principal in California, Idaho and Alaska, including nine years at Sandpoint High School. In 2015, he underwent three days of training to become a Parkinson’s Disease Foundation (PDF) Research Associate and was appointed to the PDF People with Parkinson’s Advisory Council. In addition, he is an Assistant (ID) State Director for the Parkinson’s Action Network, an advocacy group working with Congress to promote neurological research.

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