Thank you, Madam Chair and members of this subcommittee, for holding hearings on this important topic, Alzheimer's and dementia.
With the increasing prevalence of dementia in Canada and the impact on families, employers, and the economy, as detailed in the Rising Tide report, this event is very timely. The numbers are staggering, but so is the disease to each person. I know this because I have Alzheimer's. I was 58 years old when I was officially diagnosed.
Today I appreciate this opportunity to personalize the disease, to put a face to the name “Alzheimer”, and to shatter the stereotype of a person with Alzheimer's. You know it, the image that comes to mind when you hear that a person has Alzheimer's. For many, it conjures up a vision of a person in the final stages of final disease, and probably that person would be well into their eighties. Well, I read about a woman in Canada being recently diagnosed with Alzheimer's at the age of 39. I dare say that stereotypical person with Alzheimer's is not an accurate reflection.
But let me personalize this discussion and tell you a bit about my story. My new world of reality started in February 2007, when my doctor informed me that I have Alzheimer's. That was the official date of this journey. But there were clues much earlier.
Could my symptoms have been as early as the early 1990s while working here in Ottawa? I will never know for sure, but I recall a few occasions when I would be speaking with a member of Parliament only to realize that I could no longer remember his name or his party affiliation. I would be frantic as I scanned the office for clues to the person's identity, but found none. Where was the picture of that member with his leader when I needed it? Needless to say, the meeting would not last as long as planned, and I'm sure the impression left would be less than favourable.
But I continued. I retired, and with my wife, who is with me here today, returned to my hometown of Vancouver and set up my company. And still there were more clues. As for about the three years prior to my diagnosis, I did no business and made no money, which is not a good economic model to follow. In fact, a year or two before my diagnosis, I said to my doctor as I was leaving his office that we needed to talk about my memory problems. We didn't, until I forced myself to confront the reality—the stark reality, as when standing in the middle of a regional airport and feeling as I did on my first day of school: I was so confused, I almost cried. Or as when getting into the car and a minute later not remembering where I was headed or why; sometimes I would have to pull over just to get my bearings.
Hopefully you get the sense that these memory lapses were affecting my daily living. They weren't momentary “where are my glasses?” or “where did I put my keys?” events; these were profound, and they were scaring me. That is what finally took me to my doctor's office and to the official start of this dementia journey, this three-year-plus journey—a journey that is not a vacation, believe me.
I have been asked, why worry about getting a diagnosis when there is no cure? It's because getting it lets me plan for the future while I can still have a say in my future. It's all about being proactive and being in control. An early diagnosis of Alzheimer's or related dementia can offer early treatment that may stabilize or slow the rate of decline. You get a chance to be educated on the disease and to learn, for example, that socialization and physical activity such as walking are excellent programs.
So how have I adapted? First of all, the reminders are daily. I become disoriented in my own neighbourhood of 17 years while walking my dog and periodically find myself on a route I had not planned to take. After the first time, I registered immediately with the Safely Home program offered through the Alzheimer Society. For a person who loved business and the accompanying stimulation, and who thrived in that environment, I am now very limited in my daily activities. Is that frustrating? You bet it is.
My company, after 14 years of operation, has been officially dissolved, as paid work is no longer feasible. I only use the stove when my wife is around. I no longer drive a car. I write notes for everything. I take notes on the bus with me to remind me where to get off, and then I have a note for what my tasks are when I reach my destination. Otherwise, life continues, and I try to stay active.
I volunteer as a board member with the Alzheimer Society of Canada as well as the provincial society of British Columbia, and I have returned to my first love, advocacy. I advocate to educate, as today at this hearing or with the person sitting next to me on the bus or the airplane. I only need a minute to take advantage of what I call “teachable moments”. Through this short interaction, the person will learn that a person with Alzheimer's or a related dementia has a contribution to make and that Alzheimer's is not an old person's disease.
By telling my story and recounting my personal experiences, I hope people will see a new picture of a person with dementia. Perhaps, too, that lesson will be passed on to others.
I appreciate this opportunity to give you a glimpse into my world of Alzheimer's and to let me take advantage of another teachable moment.