Thank you, Madam Chair, and thank you, committee members, for creating this opportunity for Parkinson's communities to speak out.
I come to this hearing today wearing two hats--first and foremost, as partner and caregiver to my wife, Karen, who was diagnosed with Parkinson's at the age of 50; secondly, I'm a long-standing volunteer with Parkinson Society Canada and currently the chair of the board.
In 1998 my wife, Karen, slipped into a serious depression that persisted over two years and led to a complete mental breakdown, requiring hospitalization for over eight weeks. Over the course of that two years, Karen's psychiatrist suspected that her depression might be linked to something neurological. Sure enough, Karen was diagnosed with Parkinson's on December 27, 2000.
The diagnosis was totally unexpected and overwhelming. Karen was back in the psychiatric ward in very short order. That was ten years ago, and it was an incredibly stressful time. Our son was grown, but our daughter, Michelle, has Down's syndrome and lives with us. She was 17 at the time. Karen was literally suicidal, unable to care for herself, unable to care for our family, unable to work. I was working full time on the biggest project of my career and juggling to keep everything together at home.
Since then, the non-motor symptoms of Parkinson's have been Karen's greatest challenge. Her depression is ever-present, and she has developed a severe sleep disorder. She takes a cocktail of four medications every night, without which she simply could not sleep. Her mobility is compromised by Parkinson's and by severe arthritis in her knees. She gets incredibly frustrated by her inability to move around, which amplifies her depression.
Last year I made the decision to retire early to care for Karen and Michelle. I resigned my position as the president and CEO of the YMCA of Oakville after 23 years leading the association. I attend to their daily needs and run the household. I do all the cooking, cleaning, laundry, grocery shopping, and driving.
Looking back, Parkinson's has cost our family dearly in lost income and related expenses, in the quality of our family life, and our dreams for the future. We still have a good life, but it's not what either Karen or I imagined. Ours is a common story for people living with Parkinson's.
As chair of Parkinson Society Canada's board of directors, I see and hear about similar situations playing out from coast to coast. That is why Parkinson Society Canada's unique role as the only organization providing support to individuals and families is so critical.
Through Parkinson Society Canada, Canadians with Parkinson's can connect to a supportive community close to home. They can access the highest-quality information about Parkinson's and they can take control by advocating for themselves and for the wider community of people with Parkinson's.
Parkinson Society Canada also plays an invaluable role in funding Canadian researchers, investing donor dollars to support basic, clinical, and psychosocial research that is essential to improving quality of life today, and to uncovering the treatment that will stop Parkinson's in its tracks. Often-overlooked health charities like Parkinson Society Canada play a major role in advancing neuroscience in Canada. Unfortunately, with limited donor dollars, we turn away more projects than we can fund. It can be very frustrating to see so many excellent peer-reviewed projects go unfunded. For this reason, Parkinson Society Canada is working with our NHCC colleagues to propose an innovative, five-year $600-million research partnership with the Government of Canada to leverage private donor dollars for maximum impact.
Parkinson Society Canada also works to ensure that Canadians with Parkinson's receive the highest-quality care. In 2005 we developed a national program to better educate family physicians about Parkinson's disease. Over the past several years, we helped bring the Canadian community of Parkinson's researchers together as the Parkinson's research alliance. One of the most exciting results of this work is the development of a Canadian clinical guideline for Parkinson's to be launched in 2011.
Most recently, Parkinson Society Canada launched a program to educate hospital and long-term care staff about the importance of administering Parkinson's medication on time every time. The program is called “Get it on time”, and is an excellent example of international collaboration. The program was first developed by the U.K. and subsequently shared with Canada as a best-practice tool. Like our research investment, this work is undertaken entirely with donor dollars, as Parkinson Society Canada receives no funding from any level of government.
In closing, I'd like reiterate my thanks to each of you for undertaking this initiative. Brain conditions like Parkinson's are devastating families in every riding across this country.
I am hopeful that in addition to the important work being undertaken through the National Population Health Study of Neurological Conditions, your work will draw much-needed attention to brain disorders like Parkinson's as an urgent health, social, and economic issue facing Canada today.
Thank you.