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Parkinson's Disease is a Family Affair

Posted Sep 13 2008 1:04am

Connie Carpenter, the winner of the Gold medal in the woman’s cycling road race at the 1984 Summer Olympics in Los Angeles, as well as twelve U.S. national championship titles, has two things in common with my husband, Tom Kelsall. Connie and Tom are both from Wisconsin, and both have spouses with Parkinson’s Disease (PD).

Davis Phinney, is Connie’s husband and the winner of the Bronze medal in the men’s cycling team road race at the 1984 Summer Olympics in Los Angeles, as well as maintains the record for winning the most bicycle races in American history. Davis was diagnosed with PD at the age of 40 in 2000. Having PD is the one thing that Davis and I have in common.

Tom and I wish that being Olympic bicycle winners was our connection to Connie and Davis, but instead PD is our common bond.

We met Connie and Davis at the screening of “Shaken,”* a documentary about PD, in Boulder, Colorado on December 3, 2006. After the screening, we chatted informally with people as they were leaving.

When I overheard Tom and Connie discuss feeling as though they were in the background, and out of the spotlight in this PD issue and sharing what it was like having a spouse with PD, I winced. It burst my self-absorbed bubble when I finally realized that PD is a family affair. I knew that so often Tom was asked how I was doing, and seldom asked how he was managing. I suspected this was also happening to other spouses, loved ones and caregivers of those living with PD.

Tom, my one and only husband since 1974, is currently in his late fifties. Tom has thick curly pewter hair, framing his rectangular face, and laugh lines that fan out from his hazel eyes. He is as tall as a basketball player but prefers tennis and non-Olympic bicycle riding. His bearing and his voice exude the soft benevolence of a Methodist minister, his great-grandfather’s profession.

Tom grew up side by side with a younger developmentally disabled brother. Tom learned compassion early in life. His handsome good looks and his caring for others attracted me to him when we met in graduate school in social work at the University of Wisconsin in 1972. With a mother who died from PD, an aunt who has PD, a brother suffering from some sort of tremor disorder, a mother-in-law with Lewy Body Dementia, and now a wife with PD, Tom experienced his share of hardships.

When I whined about getting PD at such a young age, he said, “What choice do we have? We have to make the best of it.” I jokingly responded, “Well, we could choose to make the worst of it.” Humor became our way of dealing with my medical malady.

For example, when waiting in cramped quarters of the neurology office, Tom and I released our tension by frolicking like unsupervised kids. We clapped and did the hand-jive. When the neurologist unexpectedly returned to the neurology room, my face turned fire-engine red. I mumbled something about the hand-jive being a good diagnostic tool for PD.

Tom is the kind of man who drove 6000 miles for my PD surgery (including first driving Oreo, our beloved 10-year-old English Springer Spaniel, from Colorado to Missouri where Oreo stayed with friends, and then Missouri to California and back for the surgery). “I won’t put her through that,” was his response when I suggested that perhaps it would be easier to fly Oreo to Missouri instead of driving.

Prior to PD, Tom and I led busy lives, loved to travel, hiked and cross-country skied in the American and Canadian Rockies, ran relay races in Canada and enjoyed bicycle trips in California, Wisconsin and Vermont. After PD, our lives as a couple are quieter and less active, and not what we expected 32 years ago when we married.

PD is indeed a family affair.

*Note:
The award-winning documentary "Shaken" is about Parkinson's Disease and a journey into the mind of a Parkinson's patient.

This film is powerful, touching and heartbreaking. Being a Parkinson's patient and having had the same DBS surgery as Paul in the film, "Shaken" accurately depicts the challenges of living with PD and the limitations of this surgery, and at the same time, inspires hope for the future.

For more information, contact Deborah Fryer, at shaken@lilafilms.com or by phone at 303-442-1966.

“Shaken” was produced, written and directed by Deborah Fryer of Lila Films at www.lilafilms.com.

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