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Spreading awareness, hope about Parkinsonís disease - March 26, 2010
Springtime to most people in Southwest Florida means flower gardens, picnics and baseball. To my wife and I, it means Parkinsonís Disease Awareness Month, observed in April. My wife and I, both full-time residents of Naples, are busy traveling and speaking about this subject. Gretchen and I have had Parkinsonís disease (PD) for nearly 20 years combined. Although Gretchen would be quick to say, ďI may have PD, but PD doesnít have me!Ē that hasnít always been the case.
First, a little science. PD attacks the brain, specifically the area that controls movement ó the substantia nigra ó and kills off the cells that produce the chemical dopamine, which the brain uses for movement and function. A person with PD cannot perform these simple functions without difficulty. They may shake or tremor, drop things and even fall.
Parkinsonís is a progressive disease that has no known cure. This means as we age, the symptoms will worsen. It affects the ability to dress, eat or cook for oneself and a host of other problems including hurting cognitive abilities such as memory and processing. However, there is hope.
Gretchen was diagnosed at age 33 in 1999. I was diagnosed in 1995 at age 32. We both had flourishing careers. Gretchen was a special needs educator and was director of education for an insurance school in Daytona Beach. We were both married, had children and the usual bills, mortgage, car payments, etc.
My symptoms began as a small uncontrollable twitch of the little finger on my left hand. After several tests a neurologist diagnosed it as young onset Parkinsonís disease. As the disease progressed, my marriage suffered, my career began to fade and we got further behind in our bills. Eventually, my marriage ended and I moved to Naples to live with my sister.
Gretchenís diagnosis came after she thought she was having a stroke. Her face on the right side went numb and she felt fatigued. Several tests and months later, she was finally told she had Parkinsonís disease. And like so many relationships before, hers with her husband ended too.
Unfortunately, there is a high percentage of failed relationships due to chronic illness because there is a lot of pressure put on the healthy spouse to be caregiver to the other. That is exactly the point in writing this article, to bring awareness and education to our communities everywhere about Parkinsonís disease.
There are over 1.5 million Americans with PD. Gretchen and I travel often in order to advocate for those with PD and their families. We have spoken to support groups, medical professionals, police and fire departments and universities, educating them on ways to recognize and more effectively treat people with PD and to understand what is happening to them.
Gretchen and I met online in 2002 while surfing the Internet attempting to find information about young people with PD. Together we started an Internet support group for them. In the first month alone we went from two to 200 members from all over the world. We exchanged information about symptoms, what to expect, how to make the most of your doctorís visit and the best medications.
Not satisfied with that, we took it to the next level. With help from the Parkinsonís Association of Southwest Florida (PASFl) and the National Parkinsonís Association, we took support from the computer to the living room and co-founded Movers & Shakers, a charitable nonprofit designed to provide support, education and advocacy nationally. We currently have 35 participating states.
We also travel often to Washington, representing Florida as coordinators for the Parkinsonís Action Network on Capitol Hill, and to Tallahassee, advocating for PD-related issues.
In the middle of all this, Gretchen and I fell in love. We married in March 2007 despite the people who said that two people with PD probably shouldnít get married. Since then we have written a book, ďLiving Well with Parkinsonís Disease, What Your Doctor Doesnít Tell You ...Ē (Harper Collins).
Last year I underwent deep brain stimulation surgery with Gretchen at my side. DBS has improved my life, but it isnít a cure. And so we press on.
Gretchen has been accepted to undergo the same intensive surgery beginning this summer at Shands hospital at the University of Florida in Gainesville.
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