After losing her husband to ALS (Amyotrophic Lateral Sclerosis) in the spring of 2009, Terry Odenbach treasures her days with family and friends all the more. She’s also learned the importance of not only living each day to the fullest, but also of never putting things off.
Her husband Clifford was diagnosed with the fatal neurodegenerative disease just before Christmas in 2006. “He had symptoms for two years prior to that, but it took that long to get a diagnosis,” she recalls.
Early symptoms included Clifford noticing that his foot would drag. Muscular problems worsened, and he was referred to a physical therapist who observed there was nothing wrong with the ligaments in his leg.
“She said it was something neurological.” The Odenbachs were promptly referred to a neurologist who made a diagnosis of ALS. People living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord.
Watching her husband battle the disease was exhausting, heart-breaking and horrifying. As ALS progresses, the body essentially shuts down as the mind usually stays functional and alert. “At the end, he could twitch his thumb just a little. He could turn his head this way, but he couldn’t turn it back,” she explains. “He could still speak at the end, and most people, by that stage, have lost their ability to speak.”
Terry recalls Cliff telling her at one point he didn’t want to be trapped in his own body. “That’s what it is. You’re trapped in a body that won’t work. I just can’t imagine it.”
It was also devastating to watch her husband’s increased sense of helplessness. Cliff was once a robustly active man. “Farming, pipelining, fishing, hunting. He was 48 when he passed away – in the prime of his life.”
As ALS progresses, those with it can’t manage to care for themselves as they once did. Their reliance on others dramatically increases. As Terry points out, that’s where the solid support of friends and family was also so essential to getting through each day.
“His wish was also to stay home until the end, and I kept him at home until he passed away.”
According to the ALS Society of Alberta, 80% of people with ALS die within two to five years of diagnosis, but 10% of those affected may live for 10 years or longer.
ALS can strike anyone. It can hit at any time, regardless of age, sex or ethnic origin.
Terry, who lives northeast of Rocky with her two children (another daughter is on her own), is now involved with the ALS Society and is working to build awareness about this year’s eighth annual Walk for ALS set for June 18 at Little Chief Park.
Registration starts at 9:15 a.m. Participants are encouraged to gather donations and hit the trails for the 4.5 km walk.
Sixty per cent of donations are used for client support in Alberta and 40% goes to ALS research to find the cause and cure.
“Research is very important, but what the ALS Society does for families is unbelievable,” says Terry. “The average person with ALS needs more than $50,000 worth of equipment to care for them. You need lifts, you need things for the bath. You need wheelchairs and walkers.
“Everything that we needed, the ALS Society provided. All you had to do was call. That kind of support is really, really important.”
Ultimately, the experience of losing her husband has reinforced to Terry the brevity of life and how vital it is to truly live each moment and not let opportunities pass by.
“My feelings now are that if you want to do something then go do it. Cliff was diagnosed on December 20 of 2006, and on December 21 I was in town booking a trip to Disneyland. We surprised the kids with it and went in January.”
Terry is also gearing up to do something really adventurous – she’s taking part in ‘Skydive for ALS’ on July 30 in Innisfail. The event will help raise awareness and funds. “I’m going to do it,” she says with a laugh. “I tell people, I’m going to be 50 years old and I want to skydive.”
Local groups are also doing their part to help with the cause.
A Poker Run for ALS runs Aug. 20, with registration at 10 a.m. at Gasoline Alley Harley-Davidson. Call 403-341-3040.
The Rocky Mountain House Rodeo is also set for June 10-12 has picked the Red Deer Walk for ALS as this year’s charity and the Red Deer Optimist Club is planning a poker tournament for Sept. 23.
For more about the Red Deer Walk for ALS, call 403-342-5730 or 403-358-9999.