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Day #22


Parkinson’s Awareness Month is rapidly winning down…For those of us who live with it, awareness isn’t limited to a calendar date but is a daily fact of life. My mission for the Month of April is to raise awareness and hopefully impart some useful information to those who have this disease. Through the sharing of information it’s my hope that more research will occur and a cure will be found.
I belong to several on line Parkinson’s groups and subscribe to various medical sites that are working on new treatments and a potential cure. I’m quite active in the local Parkinson’s community. Several months ago (it feels like a lifetime!) I was involved in a panel discussion in Miami with a roomful of pharmaceutical researchers. They wanted to get a first hand view of what it’s like to live with Parkinson’s and what I was doing to control my symptoms. We covered not only the Doctor prescribed medications, but also delved into the non traditional treatments that I use. We talked about social interaction…medical marijuana…exercise…nutrition and alternative treatments including supplements and treatments that have been in use by other civilizations. It was a great day and I came away from it feeling better about the future of Parkinson’s treatments.
Soon after that, a facility in Boca contacted me about doing a fund raiser for a new wellness center they were planning on opening to serve the Parkinson’s community. At our initial meeting I agreed to not only do the fundraiser but volunteered to give talks at the center about ways to make living with Parkinson’s more manageable. We also discussed my giving guitar instruction to Parkinson’s patients as a way to help with symptoms.
Around the same time I had a call from a producer who had gotten wind of my story and wanted to know if I’d be interested in doing a documentary about my Parkinson’s journey. They had a film crew scheduled to come and shoot my band performing at The Fort Lauderdale Irish Festival, with a series of additional one on one interviews scheduled after that. These events are still going to happen…it’s just a matter of when.
I feel that by sharing my story it makes Parkinson’s more personal. People that wouldn’t have a clue about it now have someone they know first hand who not only lives it every day, but gives insight into ways to have a happy and productive life…If someone had told me twelve years ago that I’d become a Parkinson’s advocate I would have thought they were crazy! This path that I now find myself on is a far cry from my old life, but I accept and embrace it wholeheartedly. I’ll keep sharing new information on the treatment of Parkinson’s and telling my story…as long as there’s someone out there who can benefit from my sharing…

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