Rocky Mountain House’s Terry Odenbach knows the devastating effects of Amyotrophic Lateral Sclerosis (ALS) all too well.
In 2009, her husband, Cliff, 48, died at home after being diagnosed with the disease three years earlier.
At the Red Deer Walk for ALS on Saturday, Odenbach walked in memory of her beloved husband but also to help those living with ALS or Lou Gehrig’s disease today. Her team raised $51,320 for the ALS Society of Alberta.
The money raised will support ALS research and people living with ALS for things like as wheelchairs, beds, lifts and other equipment. Saturday’s tally with 220 walkers brought in roughly $95,000.
ALS is a rapidly degenerative, fatal neuromuscular disease that attacks the nerves that the body uses to send messages from the brain to the muscle.
A person with ALS is left completely immobilized, with loss of speech and eventually an inability to swallow and breath.
“The important thing to make sure other people living with ALS have the care that they need,” said Odenbach, 50.
“That’s the most important thing. While people are living with ALS to have support for families and friends.”
But they should also have the right to decide their end of life experience too, says Odenbach reacting to the landmark ruling by a B.C. Supreme Court judge that declared sections of Canada’s Criminal Code that ban assisted suicide violates a person’s constitutional rights.
“Anyone living with any devastating disease should have the right to have the type of death they want,” said Odenbach.
“That’s their choice.
“You should have the chance to make up your mind what you want for your end of life.”
While Odenbach said that conversation did not come up with her husband, she was happy he died at home with the support of the ALS Society of Alberta.
“I was able to look after him at home for two and a half years until he passed away,” said Odenbach.
“He passed away at home. That was his choice. We made that happen.”
Jon Rivard’s 63-year-old father, Oscar, lost the battle with ALS in 2005 in Edmonton.
The Red Deer resident says he has mixed feelings about the court’s ruling.
“Having been through it, you don’t like to see people go through it,” said Rivard.
“But being on the other side when you are supporter you want to keep them there as long as you can as well.”
Jeff Miller and a contingent of about 30 other family members from across Alberta walked in memory of their sister, Janice Morrison, 56, who died in Hardisty in 2002.
Miller of Beaumont said they want to keep her memory alive but also help to find a cure for the devastating disease.
Miller applauded the court’s decision because he believes people should have the choice to make a decision about their own life.
“If I get to a point where I have no quality of life, I should be able to push the button and go to some place better,” he said.
Miller said he doesn’t think his sister would have considered the option because she has a lot to live for. He said the family would have supported any decision she made.
“As I saw her go through this terrible disease, I would never go through what she did,” said Miller.
“I would have pulled the plug long ago. Everybody’s different.”
crhyno@www.reddeeradvocate.com