written by Kate O’Neill
The doctor has various clinic days. On Wednesday afternoons he travels south to Sarasota, to the Parkinson Research Foundation new suites “Parkinson Place” on Cattleridge Drive, where he sees patients. Monthly at the same location he fields questions at the open forum, “Ask the Doctor ” luncheon; where people afflicted with Parkinson’s disease and their caregivers are provided lunch and their queries discussed. Other days he sees veterans at the James Haley Veteran’s Hospital on Bruce B. Downs. Thursday afternoons he sees patients at the University of South Florida Movement Disorder Clinic. On board the yearly cruise, sponsored by the Parkinson Research Foundation, he speaks about the illness and any new breakthroughs in research.
Though patients traditionally make appointments through the scheduling desk, some bold patients learn of him and email him directly. Such was the case of a 41 year old man from California. His letter arrived from cyberspace in the font reminiscent of an old typewriter, thin and scrappy. Though his name is confidential, his case is typical for those with young- onset illness.
Are you or anyone else in this country – or Canada – doing clinical ANY clinical trials on GDNF-enhancing therapies, or anything else that addresses the issues of Parkinson’s, that I could participate in? It would be awesome if there was something in Northern California, but I am willing to travel if necessary. I am also willing to receive experimental treatments. In addition, are there any physicians you could refer me to who are treating with GDNF-enhancing therapies, or whom you would recommend for a comprehensive and holistic approach to Parkinsonism?
He had his first symptoms at 31 years of age. By definition, he has early-onset Parkinson’s disease. Though he was a runner, he doesn’t say whether he’s still as active as he once was; running a 50 mile stretch, once.
The physician is reticent to provide advice through the internet, with no face to face meeting where he might feel the rigidity of the patient’s elbows and wrists, have him lift his shoulders to observe the movement of the muscles connected to the trunk, and observe the gait in the clinic’s hallway. No insurance policy would cover medical information given without a physical examination. The average patient takes the standard route to access the doctor; an appointment allocated to have the doctor in the room, where you might ask any question. This man across the country bypassed those more common paths.
The information sat with the doctor, who turned it over and over again. He considered whether to reply. Finally he did, knowing this person sought his wisdom, and feeling that he should share what he knows of the disease. The doctor urges him to forget surgery, but exercise, regain that old hobby, the trot. By increasing one’s heart rate to the maximum for one’s age, the body begins to rebuild, as it does the brain generate growth factors which enhance survival of neurons, indeed the neurons fibers begin to sprout (at least in the brains of parkinsonian monkeys treated by vigorous exercise). The doctor wonders whether he still has the link that shows monkey on the treadmill, running though they’ve been afflicted by a man-made unilateral parkinsonism. Yes, that is what the patient needs to see.