I was grousing this morning at the gym about how terrible I will be in tomorrow’s Zumba class, and the staff person (professionally perky as all health club employees are required to be) said “Turn that around to a positive! So I must reflect on the many positives of my current situation: I have the financial means and supportive husband to retire early, which means I have the time to exercise and otherwise take care of myself. And if I need any more positives, I can remind myself that I could have gotten a diagnosis of “early-onset Parkinson’s”.
“Early-onset” means you get the diagnosis (and symptoms) much earlier (40 is the usual cutoff) than classic (“idiopathic”) Parkinson’s. Some of the more famous folks with Parkinson’s have the early-onset variety. Michael J. Fox, who is the virtual poster child for the disease, was diagnosed at 30, although he did not make the diagnosis public until 38. The next year in 2000 he went on to found the Michael J. Fox Foundation which has raised a mind-boggling $350 million for Parkinson’s research.
Another notable person with early-onset diagnosis is Davis Phinney, who for two decades was one of America’s most successful cyclists. He won two stages at the Tour de France and an Olympic medal. But after years of feeling off, he was diagnosed with early-onset Parkinson’s disease in 2000, at age 40. Like Michael J. Fox, he started a foundation which since its founding in 2004 has raised some $3.8 million, primarily spent on patient information and support.
It was a surprise to me when I attended the World Parkinson’s Congress how many young (well, younger than 40) people were in attendance. Yes, most were researchers (yay! youthful energy researching PD!) but many were PwPs (People with Parkinson’s, the politically correct phrase). The winner of the Parkinson’s video contest was Andy McDowell from Auckland, New Zealand who was diagnosed with early onset PD in December, 2009 at age 43. He wrote the poem “Smaller” for his two little girls – to help them understand what was happening to him. I defy you to watch this moving video without tearing up.
I had the pleasure of comparing blogs with another Kiwi, Andrew Johnson, who writes Young and Shaky.com blog about living with young-onset PD. (And you’ve gotta love the caption on his poster at WPC: “Parkinson’s Disease, It’s All In Your Head.”) He was diagnosed in 2009 at age 35, and like McDowell has two young children. For something scary, check out his video of what happens when he turned off his Deep Brain Stimulator (a neurosurgery to control the erratic movements of PD). This has “gone viral” with over 1 million hits.
I mentioned in my previous blog post about one of the Congress speakers, Dr. Soania Mathur, who incredibly got a PD diagnosis at 27 just as she was starting her medical residency and was pregnant with her first child. Twelve years later, she has had to resign her medical practice due to PD symptoms, but has gone on to have two more daughters, advocate for PD, and start a new company selling non-toxic products.
So, is early-onset PD different from “classic” Parkinson’s? As with any Parkinson’s question, the answer is “kind of”. In early-onset Parkinson’s disease, it’s thought that the genetic factors are more common. Often there is a family history of the disease, and about 50 percent of patients have a mutation in the gene called parkin. With early-onset, tremors and dystonia (muscle spasms) may be more prominent earlier on, and levadopa therapy may have more side effects than with classic PD — or not. Just as with classic PD, symptoms vary greatly from one person to another. That’s what makes PD such a fun disease to treat and research!