April 4, 2016
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| Greg McGinnis' sells the scarves and hats he makes with his knitting loom. McGinnis says when he focuses on knitting, his hands that shake with Parkinson's disease, tend to calm down.
Some people believe Greg McGinnis' Show Us Your Shake Parkinson's disease awareness campaign is in poor taste.
He believes after 11 years of shaking every minute of every hour of every day, he's entitled to poke a little fun at one of the major symptoms of his disease.
“You have to have a sense of humour because you spend too much time crying about it,” McGinnis said from his tidy home in south Barrie.
McGinnis acknowledges that April is Parkinson's Disease month and encourages people to buy tulips to help fund research.
But he also hopes people will go to the Show Us Your Shake Facebook page and watch Mayor Jeff Lehman, country singer Patricia Conroy and Brantford Fire Chief Jeff McCormick create their own milkshakes and post them online to raise awareness for Parkinson's disease.
As he sits in his living room, his right hand rocks back and forth non-stop, his left hand joins in spasmodically from time to time.
Yet it's the other symptoms that cause him more grief. McGinnis said he often hears “chatter, like voices in a restaurant” when he's alone in the house or he'll see shadows out of the corners of his eye that make him swing his head around to see what's going on.
There's nothing, except the nerves and muscles in his body being ravaged by a lack of dopamine in his brain that cause his system to constantly feel as if he's in stutter-mode.
“I tell people, my mind's intact but my body has turned against me,” he said.
McGinnis is one of almost 100,000 people living with Parkinson's in Canada. Another 10 people are diagnosed with the disease daily.
But it's the early-onset victims, those who aren't seniors, who are diagnosed with the disease before they reach their 40th birthday, who are often the hardest hit.
“This disease changes everything about your lifestyle, your family dynamic, how you approach everyday things. You take for granted being able to pour a glass of pop. That's something simple that I can't do,” he said.
However, instead of hosting a pity-party, McGinnis now holds himself responsible for raising awareness about the disease and fundraising for research into the neurological disorder.
For almost 10 years, McGinnis and his family ran the Family & Friends of Parkinson's golf tournament that raised thousands of dollars for research.
Together with PC Leader of the Opposition, Simcoe-North MPP Patrick Brown, McGinnis visited Ottawa to speak with doctors when they were granted $100 million in 2011 to study Parkinson's, Amyotrophic lateral sclerosis (ALS) and other neurological diseases.
McGinnis has recently become interested in research in the U.S. by Dr. Jay Alberts who works with the Michael J. Fox Foundation, and has helped struggling Parkinson's patients improve dramatically – even if only temporarily – by riding bicycles.
Closer to home, York University associate professor Joseph DeSouza is a neuroscientist who has been teaching people with the disease how to dance. By co-ordinating dance classes with Canada's National Ballet School, DeSouza sees people struggling with daily living hit the dance floor and regain a fluidity to their movement which often lasts a day or more after the class.
DeSouza said the dancers are using a variety of skills, including listening to the music, talking to instructors, watching the dancers, as well as the sensation of touch when they dance.
“It's great, they all have a drive to do it because they know they'll feel better after they do,” DeSouza said.
He said two large studies out of South Korea and Northern Europe involving thousands of people have determined that many people suffered from anxiety or depression before the onset of other Parkinson's disease symptoms, and many others had sleep pattern irregularities.
“These are potential bio-markers we're looking at,” he said of the international studies.
“As we continue to do more research on dance and movement, we're seeing a great collaboration between Toronto and Montreal and now Argentina. But we're now considering the social aspect of dancing; no one has studied that yet,” he said.
A new film entitled Synapse Dance showing a patient with Parkinson's disease dancing – and its implications – was released on www.Bravofact.com.
McGinnis will be speaking at St. Peter's Catholic Secondary School this week because he believes there's a budding scientist out there who will find a cure for Parkinson's.
“When I was diagnosed 10 years ago, they said we're 10 years away from a cure. Today, they're still saying we're 10 years away from a cure. I can't believe we're still this far away from finding one. My hope is in the kids who'll grow up to be scientists, who'll help figure this out,” he said.
For more information, visit McGinnis' Show Us Your Shake Facebook page (www.facebook.com/groups/1597111833838625)or www.parkinson.ca.
http://www.thebarrieexaminer.com/2016/04/03/april-is-parkinsons-awareness-month
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