A Parkinson’s Dream NOT Deferred
The more I have learned about Parkinson’s Disease (PD) since diagnosis 18 months ago leads me to four iron convictions.
1. Parkinson’s patients (PWP) and their caregivers are rarely given adequate information at diagnosis to understand their disease and know what to do next in confronting and managing it.
2. Intensive, sustained, exercise involving cardio, balance and resistance training trounces the flu-like fatigue common in PD.
3. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties.
4. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give up to the disease.
There is no place in Tampa that offers the comprehensive, systematic care required to address my four guiding beliefs. We need a comprehensive care center that offers exercise, education, nutritional guidance and psychological and spiritual support. One-stop, if you will, to do all the things that build body and soul and create community for people who desperately need it.
I devoted considerable time recently to indirectly lobbying the local Jewish Community Center to apply for a National Parkinson’s Foundation grant to create such a care center in association with the University of South Florida and Tampa General Hospital. The application is pending. It would be modeled on a New York City pilot program.
Only later did I learn an even more comprehensive patient care center exists in Sarasota, Parkinson Place. That’s within the Tampa Bay area and accessible by car in an hour or less. Take a look at and peruse their web site. Parkinsonplace.org You will be knocked over, I am sure.
See Parkinson Place in person. They are having an open house Sept. 17 from 4:30 to 6:00 p.m. celebrating their third anniversary. RSVP at 941-893-4188. Address 5969 Cattleridge Blvd. Suite 100. Easily accessible from I-75.
Why aren’t there more like Parkinson Place around the country? Funding is a problem. National Parkinson organizations put most of their dollars into research, not patient care. Medicare and insurance companies don’t cover most of the exercise, educational and social services offered at Parkinson’s Place. Hospitals are reluctant to invest in money-losing services. Parkinson Place, amazingly, is free.
My research has also led me to the issue of Palliative Care. PC means attending to the comfort needs of patients and caregivers who are fighting to manage an incurable disease. Many doctors are new to the palliative idea. Doctors are taught to cure not comfort as their primary mission.
Led ably by my PAIR colleague Kirk Hall, I am involved in patient-advising to a pilot palliative program for PWP and caregivers. It will be centered at the University of Colorado with two other sites.
My conclusions at this point in my journey: patients lack but deserve access to systematic care and information from the day of diagnosis. Patients are left to establish their own continuing care arrangements and palliative care team. Existing support groups need strengthening and network assistance.
This blog will follow and advocate for those issues in coming posts.