Barrie man ramps up fight against Parkinson's disease
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. P CHERYL BROWNE/BARRIE EXAMINER
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.
AT A GLANCE
- A national population health study of neurological conditions by the Public Health Agency of Canada in partnership with Neurological Health Charities Canada investigated the scope of 14 neurological conditions, including Parkinson’s disease, and how they affect Canadians.
- Key findings of the study regarding Parkinson’s disease include the following:
- The number of Canadians over 40, living with Parkinson’s disease, will increase by 65%, from 99,000 in 2016 to 163,700 by 2031.
- The number of Canadians over 65, living with Parkinson’s disease, will more than double to 148,800 by 2031.
- Parkinson’s has the third highest level of direct health care costs, after Alzheimer’s disease and other dementias and epilepsy.
- People living with Parkinson’s disease have the highest use of prescription medication.
- Annual, out-of-pocket expenses for each person with Parkinson’s is $1,100 on average.
- The level of stress doubles when caring for an individual living with neurological conditions and is greater if the neurological condition is accompanied by cognitive impairment or behavioural issues, which affects many people with Parkinson’s.
- Forty per cent of respondents with Parkinson’s disease experience thinking and problem-solving limitations; and 50% experience memory limitations.
- More than half of those who reported having Parkinson’s disease have fair or poor general health.
- The number of days in residential care is highest for those with Huntington’s, Alzheimer’s and other dementia, cerebral palsy and Parkinson’s disease.
Symptoms of Parkinson's sisease:
- Tremors in hands, thumb, lips or chin
- Smaller handwriting than previous versions
- Loss of sense of smell
- Trouble sleeping
- Trouble or stiffness when walking
- Speaking in a low or hoarse voice
- Constant constipation
- Masked or having no expression on your face
- Dizziness or fainting
- Stooped posture
Source: National Parkinson Foundation