Sunday, August 14, 2011

Parkinson's and Your Voice: A Prescription For Well Being

It is less than four hours since I left the Western Pennsylvania 6th annual Parkinson's Wellness retreat. I am  now sitting in the airport  dealing with flight delays  which include the possibility that I may not get home until well after midnight tonight. While it's tempting to get cranky, the mood of the weekend is simply too strong within me to allow anything to shift my mood to the negative. So, after a brief recitation of the serenity prayer...I am ready to share with you my experience from the weekend...and what an experience it was.

Of the many conferences or other events organized for people with Parkinson's disease that I have participated in or attended over the last 4 or 5 years, this was magical. Many of the conference organizers have been attending the retreat since it's inception six years ago, and it is evident that they brought clear intention to the design of the program. Each preceding retreat , it seems, has  deposited energy into the ground and like sacred compost , has resulted in an incredible meld of beautiful surroundings, warmth and friendship and a relevant educational program.

For the first time at a PD event, there were none of the depressing lectures that  typically detail the myriad of symptoms that can occur through the course of the disease, and their corresponding  pharmaceutical fix.The physical symptoms of speech and swallowing were discussed by me and my colleague, Dr Roxanne Diez Gross,  but the information, techniques and strategies  for managing symptoms were placed into the broader context of  the "Treatment Triangle". The "retreat-ment triangle, to be exact, which emphasized that participants  be: informed, present and centered.

 Meditations led by Deborah Grice Conway,PhD, a clinical psychotherapist  set the tone for each day, and Paul Short,PhD, a neuropsychologist  helped to place speech and voice issues into the  bigger realm of communication. Communication that takes place with partners and other family members, professionals, and most importantly, with self , as he reminded participants that you are more than your Parkinson's.

It is hard for me to identify a favorite moment from the weekend, but, being a dancer at heart, I would have to say that the Saturday night contra dance caused the magic dust to start sprinkling down. Some enjoyed the music from the sidelines and others braved the dance floor. A young woman who had informed me earlier  that she didn't think she could manage to dance given the fact that she typically uses a rolling walker, suddenly appeared across from me on the floor, walker no where in sight. As my hand reached for hers across a moving star I knew  that she too was a dancer at heart.  A couple,Vera and John, were dragged by me reluctantly to the dance floor. "we'll fall, exclaimed Vera, we're both unsteady on our feet," but as I handed her off to one of the gents and swept up John as my partner, he could not wipe the smile off his face, and of course, neither fell.

Other organizations planning conferences could learn alot from the folks in PA. They really" get it."  They clearly not only understand, but truly believe that individuals with Parkinson's and their families need to know how to stay whole. To learn how to manage  physical symptoms while honoring the spirit.

I didn't want to leave....and I can only hope that they will invite me back.
Namaste

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