I recently went to a Parkinson’s support group meeting, and one of the folks asked me what I had gotten out of the World Parkinson’s Congress (WPC) I attended in Montreal a year ago (2013). Well, I answered what a terrific experience it was and how I learned about all the bleeding edge of Parkinson’s research. But something subsequently happened that made me realize what I really got out of this conference was appreciating the global impact of Parkinson’s.
What happened was a person subscribed to my blog. I didn’t recognize the email so I sent a note asking how this person had heard about my blog. The subscriber turned out to be a young woman named Natasha McCarthy from, of all places, Prince Edward Island in Canada. Why was she interested in the blog? Despite being only 37 and the mother of two young children, she has PD — the young onset variety. And how did she hear about my blog? From Peter Davison, a speaker at WPC, who heads up the Young Onset support group for the Canadian Maritimes. I had been in touch with Peter to nail down some quotes for a posting I did mentioning his speech. In turn, I sent to Natasha the link to the WPC winning video done by a New Zealander with Young Onset PD, who like Natasha had the daunting task of communicating his disease to his two small children.
Natasha somehow manages to crank out an impressive blog ( http://natashachronicles.blogspot.ca/) while raising two kids and managing her PD symptoms. She tells how it took 15 months to get a diagnosis of PD. Among other obstacles, while there were neurologists on Prince Edward Island, there were no movement disorder specialists, so she had to take three 700-km journeys to see neurologists in Saint John, New Brunswick. It never occurred to me how challenging it is for folks in rural areas to find the expertise to get proper diagnosis and treatment for PD. As we come up to Thanksgiving, I have much to be thankful for: my list includes a nearby, expert, and empathetic neurologist, and many other nearby resources.
One final “small world” story from the World Parkinson’s Conference: Several months before the conference, I did a posting on a Spanish scientist, Ignacio Mata, based out of Seattle, but organizing a consortium of PD researchers in South America. At WPC, I met a researcher from Ecuador and showed him the posting. Months later, I got an email from Ignacio that the Ecuadorian scientist had contacted him about the research consortium. I am convinced that it is only this sort of global effort that will finally solve PD. On my Thanksgiving list is gratitude for the research and breakthroughs that are happening now for Parkinson’s.