Thank you.
My name is David Simmonds. I'm a former national chair of Parkinson's Society of Canada, but I'm here on my own behalf, as an individual who's lived with Parkinson's for the last 20 years. You said Dr. Simmonds, and I just want to make sure there is no misunderstanding.
Parkinson's disease is a disease of deterioration of the brain. Traditionally everybody has thought of Parkinson's disease as being expressed and needing to be treated by motor functioning, but it's actually a disease that affects executive functioning in the brain. It affects the personality, and therefore it affects relationships.
Although I've had Parkinson's for 20 years, I'm very fortunate that last year I had what's called deep brain stimulation surgery. This is basically having a brain pacemaker implanted: electrodes in your head, batteries in your chest, and a remote control device, which my wife would like to use more often than I do. Before I had that surgery, every day was a bit of an adventure.
Parkinson's patients have what they call on periods and off periods, when the medication ceases to function well. My off periods were about two hours a day. For example, I couldn't turn in bed; I couldn't get up in the morning until my drugs had kicked in. Going for a glass of water in the kitchen was an adventure. You have to get the pill, the glass, the water, and you have to walk between all the points. That was very difficult.
My symptoms have diminished and my neurologist tells me that I now present like a person with either no Parkinson's or first-year Parkinson's. But that's with only two of my motor functions. My executive functioning, vis-à-vis my vocabulary and IQ, has significantly deteriorated. My complex reasoning skills have diminished.
The surgery has been great, but it came ten years after I had to retire because of Parkinson's. It's been a marvellous boon to my movement, but it hasn't been a cure, and it's by no means a cure.
People like me who have Parkinson's worry about a number of things. One is the timeliness and quality of diagnosis. By the time you see a neurologist, you've probably had Parkinson's for many years. The question is, do we have enough primary care physicians and para-physicians in the field who will know the symptoms early enough to spot them so intervention can be more successful?
Second, we worry about the cost of Parkinson's disease, in terms of lost income, disability income--is it going to be there? Are the drugs going to be too costly? Is the hands-on paid care going to be there?
The Parkinson's patient tends to withdraw, become more private, less communicative, quite inexpressive in their emotions, so their sociability suffers a great deal. More seriously, the burden falls on the family tremendously. I'm sure you've heard before about caregiver burdens, but the sacrifices that are made by family members are very true.
I said it's a disease that affects the personality. I certainly feel that my personality has changed, and my wife would say—this is hearsay evidence, I guess, but as a lawyer I would say that—she's been lonely and I'm not the person she married. My personality has evolved through the Parkinson's, to her detriment, I think.
If I had anything to say about the impact and the need to act with respect to Parkinson's, it would be that any illness has a dead weight of social cost that has no real economic value. The disability insurance industry evaluates an illness and asks how sick you are. Are you sick enough to get disability insurance? Are you sick enough to get a full disability credit? That has no economic value-added.
Parkinson's, like other neurological illnesses, is a disease that wastes the opportunity for intellectual capital to be developed in Canada. I mean, you can argue that our oil and gas are our biggest natural resources, but our second-biggest natural resource is our intellectual capacity. These diseases rob us of our intellectual capacity. To me, that's the tragedy of it, the lost opportunity to Canada.
Canada is a leader in both pure research and bedside research. At the Toronto Western Hospital, where I had my surgery, there were doctors and post-docs from literally all over the world—China, South America, Asia, Europe—coming to study at that facility to see the latest in surgical and intervention techniques.
I encourage Canadians to continue to support that bench and bedside research.
If there's any plea I would make, it's that the Swedish studies that are under way under the supervision of the Public Health Agency of Canada not simply be dropped on the table. They should be followed up with action across the front of the illness, and a national strategy should be developed.
If any one person perhaps symbolizes the tragedy of the lost opportunity for the development and employment of intellectual capital by Canadian society, it's one of your colleagues, my friend and the honorary national chair of Parkinson Society Canada, Senator Michael Pitfield, who I'm sure you all know.
Those are my remarks. Thank you.