ALS walk organizer honours father

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This article was published 07/06/2023 (1068 days ago), so information in it may no longer be current.

CHATER — Five years ago, Taryn Stinson-Tuttle lost her father, Craig Stinson, to Amyotrophic Lateral Sclerosis when he was 66 years old. And each year since, she has taken steps to honour his memory while helping others at the same time.

ALS is a fatal disease that attacks nerve cells in the brain and spinal cord, which leads to paralysis of the muscles including those in the chest, throat and diaphragm, causing inability to swallow and eventually breathe.

There is no known cause and there is no cure, so when 38-year-old Stinson-Tuttle and her brother Donavon found out, it was a “heartbreaking shock.”

In 2018, Craig Stinson, then living in Rivers, had symptoms that began with muscle twitching in his arm, and then spread to the rest of his body, his daughter said. He was sent to a neurologist in Winnipeg, and then an ALS specialist, but it progressed so quickly, she added, that he was already in a wheelchair before receiving the diagnosis.

“They confirmed to us that it was ALS and that he would have two to five years, but we got four weeks. It was very, very fast. And such a shock. There are people who live many years. It’s just so different with everybody on how fast it progresses. I guess we were just the unlucky ones,” Stinson-Tuttle said as her voice faltered.

ALS is a very difficult disease to diagnose, and is done so by process of elimination, according to Diana Rasmussen, executive director and client services co-ordinator with the ALS Society of Manitoba.

“There are more than 400 people in Manitoba at any given time living with ALS and motor neuron diseases like progressive muscular atrophy, spinal muscular atrophy, and post-polio syndrome,” Rasmussen said.

It’s also a costly disease, Rasmussen added. It drains the physical, emotional and financial resources of caregivers.

“From the time someone is diagnosed with ALS to the time of their passing, it can cost anywhere from $200,000 to $400,000 in equipment, nursing care and modifying your home if someone can’t mobilize.”

“These are the kinds of things that people don’t understand, nor are they aware of until they’re in the situation, and that’s important for people to know,” Rasmussen said.

While dealing with her father’s illness, Stinson-Tuttle was pregnant with her fourth child, and it was “a struggle,” she said. “Grieving and taking care of myself was really rough, but I got through it thanks to my husband, Mike.”

And that’s when she started to do research, to look beyond what she knew about ALS through the Ice Bucket Challenge, which was a popular fundraiser in 2014, when people dumped icy water on their heads, dared others to do the same and sent money to local ALS chapters.

“We had such great support from the ALS Society of Manitoba. They gave out equipment for free like a neck brace, breathing bags, commode, and provided counselling, so I wanted to give back,” Stinson-Tuttle said.

After her daughter was born, Stinson-Tuttle said she became interested in fundraising with the annual Walk to End ALS, but there wasn’t one held in Brandon because there was no co-ordinator to organize it.

That was when Stinson-Tuttle said she “would do it” as a volunteer — and has been since 2019.

“It’s my way of remembering him and if he was still here, then I would be doing it to help him, but this is my way of making sure that other people have access to the support that he got.”

“Last year, we raised almost $10,000 in the Brandon area, so this year we are hoping we can still top that,” Stinson-Tuttle said.

A portion of the funds raised during the Canada-wide and provincial walks go to research to investigate if ALS is connected to family history, to certain viruses or infections, environmental toxins, or changes to the immune system.

And in Manitoba, the funds benefit the programs that care for clients and their families, said Rasmussen.

“When people get diagnosed with ALS, we try to support them from the day they come in until the time of their passing, and we stay connected with family and check in on them for six months post-death to make sure that they’re all doing OK because sometimes when you lose a loved one, it’s very difficult, and you just don’t know where to turn and what to do,” said Rasmussen.

Stinson-Tuttle said organizing the annual walk is something that she does for others, while honouring her dad.

“I just want to make my dad proud. I wish he was still here, but I’ll keep his memory alive. Everybody knows that I do this, and this is the reason why.”

The four-kilometre Walk to End ALS takes place June 24 at the Riverbank Discovery Centre, with registration at 10 a.m., and the walk beginning at 11 a.m. For more information, call 204-570-2489 or visit alsmb.ca/walk-to-end-als-2023-brandon.

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