The Michael J. Fox Foundation threw a grand party Saturday for Tampa Bay Area people with Parkinson’s. They spared no expense for the estimated 700 to 1,000 Parkies and their care partners who gathered at the downtown Tampa Hilton hotel.
Breakfast was everything you could ask for, and the box lunches were top drawer. They even provided parking vouchers worth up to $10 each.
The main and breakout sessions were informative an interesting, even if little information ground was broken. The gathering allowed attendees to interact with care providers in the area, ranging from USF research initiatives, new cycling programs at the South Tampa Y and the relatively recent and successful Rock Steady Boxing program in Largo. In the largest sense, the community of Parkies and their support organizations was established or at least reinforced.
The plenary and breakout sessions covered the familiar topics of how varied Parkinson disease symptoms are, how you find and interact with a movement disorders specialist, what research is in the works and the role and stresses for caregivers.
The all-day event had both funny and strange moments. Dr. Robert Hauser surveyed the vast audience with a wry smile and said what a wonderful gathering this was of future participants in his many research studies at the USF Byrd Center for Parkinson’s Disease and movement disorders. One patient panelist mentioned that because of her medications she sometimes found herself asleep while stopping at red lights. There was an audible gasp from audience members who were astonished that she was still driving
The messages were familiar ones. Get engaged. Get educated. Get involved. Don’t let the disease own you. You have to be your own best advocate.
The news for me involved the Fox program named Partners in Parkinson’s. I was unfamiliar with even its existence. Its goal is a worthy one: filling that gap after diagnosis with an effective support network.
Here’s how they describe themselves: “You are not alone; there are many sources of information and assistance to help you chart your own course for living well with Parkinson’s disease. Connecting Parkinson’s patients, families and caregivers with these resources is the goal of Partners in Parkinson’s. We encourage you to take advantage of the tools we offer, all of which you can access at your own pace from the comfort of home:
“A first- ever online tool to find a movement disorder specialist (created in collaboration with the International Parkinson and
Movement Disorder Society).
The opportunity to connect with an advocate by phone for one-on-one advice and support.
“An educational website with information about Parkinson’s disease, including a downloadable Parkinson’s disease guide.
“”Whether you are newly diagnosed, have been living with Parkinson’s for years or are caring for someone with Parkinson’s, we hope to help you discover the benefits of team.
To do to take advantage of all Partners in Parkinson’s resources visit http://www.partnersinparkinsons.org.”
The Parkinson’s disease advocate is described this way: The person has 1. Skills in educating you about Parkinson’s disease and progression. 2. Knowledge of educational resources for Parkinson’s disease. 3. Suggestions for helping you discuss your symptoms with your doctor.
The program sounds very promising. I intend to learn more about it and pass that along in a future post. One of my questions will be does a person have the same advocate throughout or is it a rotating group you will interact with? How do Advocates know what local resources and providers to recommend?
My larger question has to do with asking the person just diagnosed with Parkinson’s who is at a low ebb emotionally and educationally to have the the wherewithal to seek out the Advocates program. That aside, I am very impressed with the ambitiousness of this venture.
On behalf of those of us who attended, thank you Michael J. Fox Foundation for a very worthwhile day.
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Cudos to MJF for this program that has been and will be held at locations all over the country as well as the Partners in Parkinson’s program. Linda and I attended and had a table for the PDF PAIR program there. It is a wonderful learning opportunity. Of course, there are people who should attend but are not able or choose not to. We need to keep working on ways to get needed info out to all. The best place to start this process is that the diagnosis appointment. Great report from a great PD advocate!
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It was a really great event. So glad to be a part.
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