People from across Canada will be participating in fundraising events Saturday to raise money for an incurable disease that literally locks people within their bodies -- still conscious and completely aware, but unable to move a muscle.
Amyotrophic Lateral Sclerosis, better known as ALS or Lou Gehrig’s disease, is a rapidly progressive illness that attacks motor neurons in the brain. This prevents the neurons from transmitting instructions to muscles in the body, ultimately weakening them until they lose the strength to move.
The disease does not discriminate between age or gender. The early stages of the disease will cause odd muscle twitches, and then progresses until those diagnosed cannot walk, move their arms, or even speak.
Eighty per cent of people with ALS die within two to five years of diagnosis.
Even with this staggering statistic, very little is known about the disease, or what needs to be done to find a cure.
Dr. Jeff Sutherland was diagnosed seven years ago. He has now lost all ability to move and speak, but despite being completely paralyzed, he still finds a way to communicate and raise money for ALS research.
“I am at times struggling to find a purpose again. I was a physician and this was my calling before ALS ripped this away from me. Since this I have struggled at times to find additional purpose other than being a father and husband,” he told CTV News.
Sutherland first organized the Georgtown Walk for ALS in 2009, when he was first diagnosed. A doctor who worked at the local hospital and ran his own family practice, Sutherland was able to rally the community. His patients and friends came out in droves to support him and the cause.
Since then, the Georgetown Acton Walk has become the number one fundraiser for ALS in Canada, collecting almost $1 million for research and equipment.
“People were devastated to hear his diagnosis and they came out,” said Mary Jo Knox, volunteer ALS walk co-ordinator for the Georgetown Acton Walk. “The problem is that he is so popular, everyone crowds around him. It brings the walk to a standstill.”
“Jeff is trying to make a mark on ALS,” said Enzo Raponi, director of development for ALS Canada. “Basically, he says ‘Yea, I’ve got this disease, but I am going to do something about it.’”
In order to be this involved, Sutherland has learned how to communicate with the help of a computerized system that tracks his pupils and allows him to choose letters on a screen. With a blink of his eye, he is able to form words, which are then spoken aloud. Through this system he has been able to keep up correspondence with the ALS community, write emails, and even lecture at presentations.
“I know that without the eye tracking system I would not have chosen to keep up the fight. Life would be very different without the ability to communicate,” he writes.
Raponi estimates that only 300 of about 3,000 Canadians with ALS have used some form of computer communication. He says the ALS society will lease the DynaVox eye gaze system for a yearly fee of about $800.
Sutherland says the financial cost of this equipment, in addition to the price of home care, can become quite strenuous.
“I realize that I have the ultimate environment to cope with this disease—supportive family and friends, financial stability,” he said. “ALS is an expensive disease especially because home modification is rarely supported financially. Forty percent of people with ALS live below the poverty line.”
For some, choosing between living and dying from the disease will depend largely on that financial burden, as well as the will to remain active.
“There will come a time in my life that I will have to make another choice of living with or dying from this disease. That is when my muscles stop allowing me to breathe. If I want to keep living there is equipment that will enable me to continue to do this,” added Sutherland.
“Ultimately, living with a terminal illness or dying from a terminal illness is a choice. I still have some living to do.”
With files from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip
