SHARING THE EXPERIENCE OF PARKINSON’S DISEASE

ParkinsonsJune17A friend with Parkinson’s Disease recently learned that her neighbor, a man she’s known for five years, has also been living with PD.  The news surprised her, and she wishes she had known sooner.  She’s active in the Parkinson’s community and has lots of information she could have been sharing with him, not to mention her personal experience and support.

But she understands.  It’s not always easy to be open about a diagnosis of Parkinson’s.  It takes time to process and come to terms with how the disease will affect your life.  And yet, some of the most helpful advice we ever receive is from those who have walked in our shoes.

Finding someone else with Parkinson’s these days is regrettably all too easy.  A million Americans now live with it, and 60,000 new cases are diagnosed each year.  Most are over 60, making Parkinson’s one of the five most common diseases of the elderly.  Currently, one percent of all 60-year-olds and five percent of all 80-year-olds are afflicted with it.  As the population ages, those numbers will grow—unless and until there’s a cure.

A cure for Parkinson’s is something medical science has been working on for 200 years—ever since Dr. James Parkinson, an English physician, published the first written description of the movement disorder that now bears his name.

Today, we know a lot more about the nature of Parkinson’s than we did in 1817, but there are still far too many unknowns, including the underlying cause—why one person gets it and another doesn’t.  Researchers suspect both genetic and environmental factors, but until they know for sure, there’s no way to prevent the disease, or to slow it, stop it, or cure it.

There’s no easy way to diagnose Parkinson’s either: no blood or glucose test, no EKG or biopsy.  Diagnosis is still based on a physical examination by a neurologist.

Fortunately, organizations like the National Parkinson’s Foundation, the American Parkinson’s Disease Association, and The Michael J. Fox Foundation are working hard to solve the mysteries surrounding PD.  Meanwhile, the challenges of living with Parkinson’s don’t have to be faced alone.  There are now hundreds of Parkinson’s support groups around the country, including groups in Honesdale and Milford, and in Harris, NY.

A support group is a chance to compare notes on the full range of PD symptoms: the slow movement, the tremors, the rigid muscles, and unstable posture, and the long list of non-motor symptoms like insomnia, constipation, speech difficulties, cognitive impairments, skin and vision problems, hallucinations, anxiety, depression, and more.  It’s a place to discuss medications, to learn about the latest adaptive equipment and devices, and the growing number of Parkinson’s-specific activities and therapies to increase mobility.

In the Honesdale area, these include physical therapy to improve gait and balance; speech therapy for voice intonation and volume; “Rock Steady Boxing” in Old Forge for greater agility, endurance, and hand-eye coordination; “Dance and Movement” classes at the Friendly Community Center in Mountainhome; “Spin for Parkinson’s” at the Wayne County YMCA; plus Pilates, yoga, tai chi, and qigong classes throughout the area, disciplines that are highly recommended for those with PD.

The support group is also a place to relax and have fun, to laugh and exchange stories, and to make some great new friends—friends guaranteed to know what life with Parkinson’s is all about.

Equally important, local groups contribute to Parkinson’s research.  With drastic budget cuts threatening the National Institute of Health and other federal funding sources, it’s up to the Parkinson’s community to come together and keep scientists working for a cure.

The upcoming Pocono FoxTrot is a chance to support not only our neighbors who are currently living with Parkinson’s, but the rest of us whose chances of a diagnosis will continue to increase until a cure is found.

The event includes a 5K Walk/Fun Run, a 1-Mile Community Walk, and a Kids’ Dash, beginning at 8:00 AM on Saturday, June 17, at Ann Street Park in downtown Milford.  The After-Party will feature free food, music, a gift basket raffle, and exhibitors with resources for PD patients and caregivers.  All profits benefit The Michael J. Fox Foundation for Parkinson’s Research.

For details, visit:  www.poconofoxtrot5k.org