Once again, the Parkinson Foundation of Western Pennsylvania Living Well Retreat was a joy to participate in. And once again, I got far more than I could ever put into it. This weekend was a tremendous source of inspiration for me.
For those of you who have not had a chance to go to this PD retreat, the event is unlike any you may have experienced in the past. The focus is on living with the disease, not treating it. There is no talk of the medical manifestations, treatment or future direction of PD. The retreat is predicated on the simple fact that everyone in that room is affected by the disease and has to come up with ways of adapting to that reality. We all believe that PD will one day be cured but we recognize that waiting for that day without responding to its immediate challenges is like standing on a burning bridge waiting to take action after someone to tell us how the bridge caught fire in the first place.
What I particularly enjoyed was the opportunity to learn from other professions that help with that day-to-day struggle. Among this year’s presenters was speech-language pathologist Mary Spremulli, MS, CCC-SLP. Mary presented some innovative ideas for engaging individuals in speech therapy in a way that increase the likelihood they will stick with it- by having fun. I cannot do justice to Mary’s work and urge interested readers to follow her blog at blog. For now, what I would like to do is mention the way our two messages melded so coherently.
The message I tried to present is that a person may have the disease but must struggle against allowing the disease to become who they are. This theme of having but not being Parkinsons is one my readers will be familiar with from other blog entries. PD robs a person of the ability to seamlessly interact with the world around them. Whereas I drew attention to the difficulty masking brings to communication, Mary pointed out how an impoverished voice also diminishes an individual’s sense of personhood. Think of how often we use the word “voice” metaphorically to indicate our presence in the world. For example we voice our approval and strive to make our voice heard on matters important to us.
Several times during the weekend, Mary demonstrated some intriguing techniques she uses to help a person overcome the vocal challenges the disease presents, to literally restore their voices. What I was pleased to hear was the focus she placed on fun. She very astutely pointed out that people are unlikely to engage in therapies that help them manage their disease unless they enjoyed doing them. Anyone who has tried to maintain an exercise program is familiar with how hard it is if the activities are a drudgery.
When a family comes to me to help them live with their PD, one of the things I evaluate is whether or not they participate in activities that are fun. Far too often, they tell me no and articulate the many impediments PD puts before them. This saddens me because I truly believe that each of us is filled with a deep need for fun and a right to the relief it brings. This loss of opportunity for enjoyment is one of the biggest causes of depression but as Mary pointed out, it is also an area where people can literally lose the very expression of the self.
I am therefore reminded that unless I help restore fun, I am not serving my clients. It was nice to have an ally who shares my passion for helping families find their voices and restore quality to their daily lives. The best place to find allies like Mary is at places like the retreat. If you have not had an opportunity to attend an event that puts emphasis on the human being rather than the disease, I urge you to consider putting this retreat on your agenda for August, 2012.
And if you feel as if you have lost your voice, literally and metaphorically, I believe one way to retrieve it is through those moments when life begs us to have fun.
I salute the divine spark I share with all my readers and close with the Sanskrit word of greeting and departure that reflects this bond we share.
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