Science writer and Parkinson’s patient Jon Palfreman sets out this concise description of the disease that over one million Americans live with …and die from:
“… people with Parkinson’s progressively lose core pieces of themselves. We forget how to walk. Our arm muscles grow weaker. Our movements slow down. Our hands fumble. Simple fine-motor tasks like buttoning a shirt or balancing spaghetti on a fork become a challenge. Our faces no longer express emotions. Our voices lose volume and clarity. Our minds, in time, may lose their sharpness…and more.”
The “more” varies, widely from patient to patient, writes reviewer Doug Clifton, former editor of the Miami Herald and PD patient. Some lose the sense of smell. Some shuffle instead of stride; freeze in place as they try passing through a doorway. Some drool. Some have all the symptoms, others just a few. Some are dramatically helped by the drug regimen prescribed; others continue to struggle as the regimen gets tweaked.
How aware of their disease are PD suffers? According to a 2014 Harris survey:
57% feel informed about how PD progresses.
46% feel informed about treatments for non-motor symptoms of their disease.
54% feel informed about treatments for motor symptoms.
In other words, stunningly few PD sufferers understand what’s in staring them in the face today and what’s ahead for them.
I am not blaming doctors for this patient ignorance. Doctors are compensated for diagnosing disease and prescribing remedies. They have no financial incentive, much less the office resources, to educate patients about PD and answer everyday questions from patients.
Patients are asking questions but finding few answers, especially close-to home answers.
Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi classes? Is anyone local offering that boxing therapy I saw on Sixty Minutes? Is there a young-onset support group in our area?
In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations effectively provide broad stroke answers, not geographic specific ones.
Why not provide a Tampa Bay answer line to recommend local resources PD patients nee to address their specific concerns and questions?
This multimedia clearinghouse, call it the Parkinson Connector, would be a one-stop shop for solutions. It would assemble lists of certified and licensed providers of care and share those lists with patients.
Patients, in turn, would be obliged to “own” their disease and make decisions and take action based on the provider lists. The Tampa Connector would not be a treatment provider. It would be a crucial link between doctors and the needs of their patients.
Physicians could recommend the connector to patients. At diagnosis, doctors would provide patients a succinct and jargon-free brochure that answers initial questions and concerns and directs patients to the connector for more information.
Imagine Rotary International providing seed money for this start up. District clubs would make it a priority project and spread the word in the community. If successful, the model could be duplicated in other Rotary locations.
The ideal connector is an existing, non-profit medical care organization with the infrastructure and patient experience to integrate the PD initiative into existing operations. Supplemental resources, of course, would come from a grant.
The connector proposal addresses real needs with the promise of great service to people who deserve guidance, direction and validated information.
This proposal is bold and complicated in operation, especially the marketing and public information aspects. But it is simple in strategic concept: connect people with daunting challenges in everyday living with existing local resources to meet those pressing needs.
NPF response from Leilani Pearl, Vice President, Marketing & Communications, National Parkinson Foundation:
“I saw you new blog post this morning. As I mentioned on the phone, we do have a national Helpline to help people find resources in their area, including Tampa. The # is 1-800-4PD-INFO (473-4636) and the link to search by state is here: http://www.parkinson.org/search.