t 35, a diagnosis of Parkinson’s disease was the last thing Stephanie Ossanna expected. A single mother, and like most people in their 30’s, she was focused on financial security, career goals, and providing for her young family. For Yvon Trepanier, diagnosed at 47, grocery shopping has become his nightmare.
“Those plastic bags in the produce section are so frustrating – I’ve lost my dexterity so I have to focus on moving each finger individually. It makes bagging a bunch of grapes almost impossible!”
A new reality
What started as tightness and pulling in Stephanie’s arm developed into a serious tremor. Today, her tremor is active 80% of her waking hours, making everyday tasks like blow-drying her hair a battle of wills. Will she burn her scalp because she can’t move her arm enough, or bang herself in the head because her arm is moving uncontrollably?
Yvon, a former high school teacher and master of lang-uages including Russian, Japanese, French and Spanish, finds Parkinson’s impact on his ability to communicate most challenging. “I stutter and can’t find the words I need. I used to be able to write in many languages and today I can’t write my own name.”
Parkinson Society Canada estimates that over 100,000 Canadians have Parkinson’s today – men and women, young and old, from all ethnic backgrounds. Research
is underway to determine exactly how many people are affected, and the impact of the disease on individuals and their families. There is no known cause or cure for Parkinson’s. Medication can reduce symptoms but there is no slowing the progression of the disease, and some medications may cause side effects.
Promise of research
Parkinson’s is a complicated disease and research continues across a broad spectrum of promising areas:
• Brain discovery. Understanding brain development as a means to better understand why things go wrong
• Treatment. Finding new, more effective ways to manage symptoms
• Psychosocial. Understanding the non-motor aspects of the Parkinson’s experience to provide better/more appropriate support to individuals and families
• Cause and cure. Uncovering answers to the most important questions about Parkinson’s.
“Supporting these areas of research is very important,” says Joyce Gordon, CEO of Parkinson Society Canada. “Each builds on the other and contributes to our evolving understanding of the full picture of Parkinson’s.”
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Uncovering the cause
Cause and ultimately a cure, is paramount. It is the life work of many Canadian scientists, including Dr. Shawn Hayley, associate professor and Canada Research Chair of Behavioural Neuroscience at Carleton University in Ottawa.
Dr. Hayley investigates the connection between environmental toxins and Parkinson’s – pesticides, insecticides, fungicides and heavy metals. His
research has found that administering a commercial herbicide to rodents destroys about 30% of the dopamine neurons in the brain. The connection to Parkinson’s in humans is startling says Dr.Hayley. “These are the same neurons that die in Parkinson’s and these animals show some slowness of movement similar to Parkinson’s patients.”
Positive outlook
Without question, Parkinson’s is a debilitating and serious disease, robbing people of their independence, their livelihood and their abilities. But people with Parkinson’s share a tremendous resiliency and positive outlook.
Stephanie and Yvon have faced a new reality for their lives. Both admit to having bad days, but they have embraced the opportunity to reinvent themselves. Stephanie is back at school to become a
Developmental Service Worker, motivated by the opportunity to help others. Yvon and his partner bought a hosta perennial farm and are busy building their new business.
“With Parkinson’s, you lose your abilities,” says Yvon. “I am reminded every second of every day that my body isn’t working properly and it’s frustrating. But I’m reinventing myself – I can’t do some of the things I loved but I have found new things that interest and motivate me.”
“I’m reinventing myself – I have found new things that interest and motivate me.”
- YVON TREPANIER
| Focus on the future
While researchers search for answers, Stephanie and Yvon are driven to live their lives. They share the passion to educate others about Parkinson’s and ensure there’s more support for those diagnosed in their 30’s, 40’s and 50’s.
Stephanie looks at her daughter to find her reason to hope. The tremor that took over her left arm is slowly creeping into her leg and other hand but she’s planning an exciting future. “Parkinson’s throws you a curve ball, not a death sentence. I have important things in my life…I try not to let the bad spells overshadow the good ones.”
Thinking about his future as a hosta farmer, Yvon says, “I hope it won’t get worse. I like to think about myself as a good-looking 90 year-old in a straw hat, working in my garden.” H&L
WHERE TO GO FOR HELP
Parkinson Society Canada at
parkinson.ca or call 1-800-565-3000. | |
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