MARCH 25, 2019 BY GIL THELEN SPECIAL TO THE MIAMI HERALD
A Florida Parkinson’s expert relates how five members of her family or close professional circle have been touched directly with a Parkinson’s disease diagnosis.
An Alabama health system reaches out for advice on dramatically increasing their Parkinson’s patient-care efforts. The reason? A powerful member of their leadership structure just received his Parkinson’s diagnosis.
These examples suggest what a Parkinson’s “Pandemic” will look like, a term coined by a Parkinson’s panel earlier this year.
Only 50 neurologists are training in the U.S. to become top-shelf Parkinson’s specialists, mobility disease specialists or MDS for short. That number barely touches the retirement rate of current specialists.
Read more here: https://www.miamiherald.com/living/health-fitness/article228301664.html#storylinThe mobility disease specialist crisis (my term) looks like this already: Large geographic areas are without any practicing MDS. An example is the almost two dozen counties constituting Central Georgia, where I live. Parkies like me must travel two to five hours to receive treatment from a specialist in Atlanta, Augusta, Jacksonville or Gainesvill
e
M
etro areas have seen a sharp reduction in practitioners who are expert in Parkinson’s and are treating Parkinson’s patients, such as San Antonio, which has gone from 20 to 3.
There are numerous disincentives to becoming an MDS. One is money. Insurers, led by Medicare, are not providing adequate reimbursement support, such as payment for long patient visits necessary for proper care. Long means more than 10 minutes.
Pharmaceutical companies are reducing their already inadequate support for developing new Parkinson’s medications.
Non-MDS neurologists, geriatric specialists and generalists are being forced to fill the void, but they must receive more training. Same goes for related, non-MD professionals, such as physician assistants and nurses.
Parkinson’s is an ultimately unknowable neuromuscular condition.
Even the numbers are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S. Second most-common neurological disorder after Alzheimer’s.
Healthcare consultant Kim Blasingame wrote in September that neurology professionals have sounded the supply-demand warning since 2013. She described what’s ahead this way: “The neurology workforce supply is constrained from many sides. Factors including government policy... demographic changes, failure to innovate, and changing clinician work/life balance expectations (that) are limiting growth in the supply of neurology patient care. But it is the convergence with another force — demand expansion — that is creating the perfect storm.”
Patient education and self-help efforts are growing, enormously.
In Tampa, an activist group of PD activists is developing a database of local treatment and support assistance. The work is led and funded by my nonprofit, Me Over PD (MOPD) foundation.
I explore those patient-led, care initiatives in my and my wife’s just published book “Counterpunch: Duking It Out With Parkinson’s.” It is available in paperback and eBook.
Quite interesting:
https://www.sanluisobispo.com/news/health-and-medicine/article224988180.html
There is reason for hope, Parkinson’s patients’ and care partners’ lifeblood. The journey will be demanding, as always with the unwelcome Parkinson’s tenant in our brains.
https://www.miamiherald.com/living/health-fitness/article228301664.htmlRead more here: https://www.miamiherald.com/living/health-fitness/article228301664.html#storylink=cpy
https://www.miamiherald.com/living/health-fitness/article228301664.html
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