My Fear Of a Demon

PARKINSON'S DISEASE: My Fear Of a Demon Iremember three things about Sundays in a small Southern town in the 1950s -- church, Sunday dinner, and afternoon visits to relatives and friends. Those visits were an ordeal for children. Warned in advance by my parents to behave, I fidgeted and squirmed as I sat through seemingly hours of boring adult conversation.

I especially dreaded the occasional calls we made on Aunt Mamie and Uncle Sexton. My uncle was the reason, because I had never seen anyone like him. Sexton Coppinger was a perfectly nice man, but he scared me.

He spoke in barely audible whispers. He drooled. His hands were curled up like claws. His constantly writhing body and limbs frightened me the most. Some terrible demon seemed to possess him. I now know what that demon was: Parkinson's disease. It led to his death within five years.

I never dreamed something like that could happen to me. For most of my life I was blessed with excellent health. When I reached my late 50s, however, I began to notice things about myself that I dismissed as fatigue, stress, and the aging process. I had been running three miles daily, but then I couldn't quite finish that last mile. My handwriting began to look like that of an old man. My movements became overly deliberate and rigid. I slurred my words when I spoke. Expression washed away from my face. I found it difficult to concentrate at work. I knew something was wrong when people started asking me if I had been ill.

AFTER MONTHS of hoping I would get better, I finally decided to see my doctor. He examined me thoroughly and had me perform a few simple tasks with my hands, arms, and feet. Follow-up tests revealed Parkinson's disease as the diagnosis. My wife and I were stunned. We broke down in tears, terrified at what the future held for us. Visions of Uncle Sexton haunted me. His demon had now entered my body. The possibility of giving up a job I loved and the worry that I would become an invalid plunged me into depression.

Five years later, however, I am doing remarkably well, despite the disease's subtle but steady progress. Although I retired early, I nevertheless worked full-time until recently. Many people with Parkinson's withdraw socially, but I decided to be open about it. I also determined to stay active and productive. Thanks to being a fitness fanatic prior to my diagnosis, I have found that regular exercise is more important than ever. Every day I don't work out or do something meaningful, I've lost to the Parkinson's demon.

Key to coping with the disease has been the support of my family and friends, especially a small Parkinson's support group called the "Movers and Shakers." But most effective has been access I've had to first-rate care at McGuire Veterans Hospital in Richmond.

MY MILITARY service during the Vietnam War qualified me as a patient for McGuire's comprehensive Parkinson's treatment center. There I see skilled doctors and nurses who specialize in Parkinson's. They have put me on the proper medications, a tricky business with this disease. For now my life is more or less normal, thanks to this program. I often surprise people when I tell them I have Parkinson's, although I'm sometimes rudely thrust back to reality when I'm under stress or overly tired.

Until a recent announcement from Virginia Commonwealth University, a comprehensive Parkinson's treatment center has been limited to veterans in our area. With the recruitment of Dr. James Bennett to head a team of leading experts in Parkinson's, the VCU medical college will work closely with McGuire Hospital to provide a comprehensive research and treatment center for anyone with the disease.

Physicians like Dr. Bennett have made a huge difference in the quality of life and provide hope for those of us who have incurable diseases. I think back to Uncle Sexton and now realize how fortunate I am, thanks to the many advances in medical science. My 3-year-old grandson is the source of that revelation. He is not the least bit afraid of his "gandaddy," and we spend countless hours playing when we're together. I only wish that I could have known Uncle Sexton better. My mother always told me what a wonderful man he was. Sadly, I saw only the Parkinson's demon in him.

Charles F. Bryan Jr. is the president and CEO emeritus of the Virginia Historical Society, and is co-partner with Daniel P. Jordan of Bryan & Jordan Consulting, LLC. Contact him at .