Madam Chair, honourable members, and ladies and gentlemen, good morning.
My name is Derek Walton. I live in Barrie, Ontario, with my wife and primary caregiver, Diane. Patrick Brown is our MP and a valued friend.
Once again it is my honour to be asked by the ALS Society of Canada to witness today on behalf of all ALS patients in Canada and explain what it is like to live with ALS, more commonly known as Lou Gehrig's disease.
Amyotrophic lateral sclerosis, ALS—three letters that change lives forever. ALS is a rapidly progressive and fatal neuromuscular disease that is characterized by the degeneration of a select group of nerve cells and pathways, called motor neurons, in the brain and spinal cord. This loss of motor neurons leads to progressive paralysis of the voluntary muscles and ultimate death when the chest muscles are no longer able to help the lungs achieve adequate oxygenation. It is a very nasty disease and is one that has been likened to being buried alive.
I am one of fewer than 2,500 Canadians living with ALS. However, unlike 90% of patients who pass away within five years from date of diagnosis, my symptoms are moving very slowly. Although the average life expectancy is just 2.7 years, many of those I have mentored to date have passed away in less than a year.
Sadly, there is currently no cure for ALS. That is why we need more funds for research to find a cure.
Although I was finally diagnosed in May of 2002, I believe my signs started as early as 1998. Unfortunately, ALS is usually determined after all other neurological diseases have been eliminated. I was misdiagnosed for years.
Because my symptoms are moving so slowly, I have used a cane, a walker, a scooter, and most recently a powered wheelchair. We have yet to purchase a customized vehicle, so I still use my scooter when travelling.
In a nutshell, I have been spared the short lifespan the majority of ALS patients and loved ones are given after hearing those three words and those three dreaded letters—“you have ALS”.
I am so thankful this committee has been formed, as, according to the WHO, the prevalence of neurological disorders will dramatically rise in years to come, from both the extension of life expectancy and an aging population globally.
However, I do bring an ask list on behalf of ALS Canada. They ask that the health committee create a comprehensive and coordinated national brain strategy to address the need for caregiver support, income security measures, genetic privacy, prevention, investment in neuroscience research, integrated care, and public education.
The new IBM research and development centre being built here in Barrie is a great start. However, a national brain strategy will greatly help to reduce the social and economic burden of neurological conditions in Canada.
They also recommend that neurological conditions be added to the Canadian chronic disease surveillance system; however, they thank the government for the work to date in achieving this goal through the national population health study on neurological conditions.
The ALS Society of Canada delegates are again coming to Ottawa on June 4th and 5th for our Hill Day, to meet with politicians to discuss compassionate care benefits in more detail. Please join us for our open air vigil on the Hill from 7 until 9 on June 4th.
In closing, I hope my testimony to the committee today has been beneficial and I can leave confident that my lone voice has been heard on behalf of all ALS patients and their families nationwide.
Thank you.