Despite a devastating amyotrophic lateral sclerosis (ALS) diagnosis two years ago, Pete Truch continues to live each day with hope, positivity and gratitude.
According to the ALS Society of Alberta, the disease attacks the body’s nervous system and causes the brain to no longer be able to communicate with muscles. There is no cure for people diagnosed with ALS and the average life expectancy is two to five years.
Approximately 3,000 Canadians live with ALS and two to three Canadians die every day from the disease, ALS Alberta said.
It was a twitch in his arm that led to Truch’s ALS diagnosis back in August 2019.
“Before my diagnosis, the only thing I ever knew about ALS was it was called Lou Gehrig’s disease,” said Truch.
Lou Gehrig was a longtime pro baseball player with the Yankees and back in 1939, at the age of 34, he was diagnosed with ALS. He passed away three years later from the disease, which now bears his name.
“I remember him at one Yankee Stadium presentation saying, ‘I’m the luckiest man alive,’ and that’s always stuck in my head and stayed with me… I don’t know why. But I guess it was predestined that I was going to end up with the same disease.”
Truch considers himself lucky as well. When he was finally diagnosed with ALS, it had already started attacking his lungs. The doctors only gave him months to live.
“So with that in mind, it’s like… if you ever get out of here, then make the best of it,” Truch recalls. “And on Aug. 14, 2019, I came out of the hospital.
“I’m still here.”
Once he left the hospital, Truch only had about 60 per cent of his lung capacity left. The next thing to go was his strength, then the dexterity with his fingers.
The journey has had its ups and downs. For Truch, one of the toughest things for him, has been learning to ask for help.
“I guess I’ve always been a person who’s tried to do things for himself,” Truch said. “And so one of the things that I’m finding maybe the hardest is just giving up that independence and saying, ‘Yes, I’m not well enough anymore to rely only on myself. I do need the help.'”
Immediately after his diagnosis, the ALS Society set Truch up with client services coordinator, Michelle Savard, who was able to offer support, mobility equipment and advice on how to move forward.
“She was telling me things that happen, things that go on in the society, etc. And what they’re all about,” Truch said.
Recently, Truch and his wife have moved in with their son, Peter and his family — who are in constant awe of his parents and their positive attitude.
“When life hands you lemons, make lemonade, right? And that’s what they’ve done as best as they can. And we’ve all kind of tried to embrace that,” Peter said.
Peter mentioned how hard it has been watching the disease progress and his dad’s health deteriorate.
“The toughest thing has been to watch dad be so frustrated and struggle with what used to be a fairly basic routine, common tasks — like trying to hold a knife and cut a piece of meat,” Peter said.
With advancements in research and positive stories from other ALS cases, Truch’s wife of 50 years, Doreen, is holding onto hope that she’ll have her husband around for many more years to come.
“It has inspired me that I’ll have him for a lot longer, to give me a hard time,” Doreen said with a smile.
Support for ALS in Alberta
According to ALS Canada, the average cost of ALS to a family is $150,000-$250,000.
The ALS Society of Alberta offers an equipment loan program, among other support, to help ease the financial burden for families.
“We loan out everything from communication devices, to scooters, to power wheelchairs to hospital beds,” Karen Caughey with ALS Society of Alberta said.
“We try and take the burden from our families if we take a little bit of that pressure off and provide that piece of equipment.”
Caughey mentioned research has made some big strides over the past few years.
“There was the first-ever drug treatment that was approved in 2018 in 20 years. So I think we still have to keep that fight up,” Caughey said.
“We need to support people living with the disease, but we have to find a treatment and we have to find a cure.”
Betty's Run for ALS
Betty’s Run is named after Betty Norman, who battled ALS at the age of 58 and had a wish to find a cure.
ALS Alberta said she was the inspiration and driving force behind the first run 25 years ago, but unfortunately, she passed away two weeks after the event and 11 months post-diagnosis.
Since the first run, the event has raised more than $8.1 million for research, equipment and client support services.
Betty’s Run one of the ALS Society of Alberta’s biggest annual events and it’s happening virtually on June 13.