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Raising ALS awareness

Posted on August 22, 2018 by Dave Sulz
Lethbridge Herald file photo by J.W. Schnarr Participants take part in the 2017 Walk for ALS at Henderson Lake Park. This year’s walk will take place Sept. 8.

When participants in this year’s Walk for ALS set out on the route around Henderson Lake on Sept. 8, they will be helping to raise awareness and funding to battle one of the most devastating diseases known to mankind.
ALS — Amyotrophic Lateral Sclerosis — is also known as Lou Gehrig’s disease, so named for the Hall of Fame baseball player who died of the disease in 1941 just shy of his 38th birthday. The disease attacks the nerves of the body that are responsible for sending messages to the brain, resulting in weakness and deterioration, and eventually an inability to swallow or breathe.
ALS claimed the life of Gerard Thom in June 2017, about two and a half years after the Lethbridge husband and father was diagnosed with the disease. But between the time of his diagnosis and the time of his passing, Gerard waged the fight of a champion, valiantly working to raise awareness of ALS and to do everything he could to help others afflicted with the disease, as well as their families.
“He had an amazing attitude,” Shelley Thom says of her husband. “He was never angry.”
Today, Shelley carries on Gerard’s work, serving as co-ordinator of the Lethbridge Walk for ALS. Having walked the journey, she knows what families go through when they battle ALS.
“It’s a tough thing to go through as a family,” says Shelley, noting the challenges of watching a loved one decline as the disease eats away at the body’s abilities. The couple’s son Adam was just 16 when Gerard was diagnosed with ALS, and Gerard passed away a month after Adam’s graduation.
The one thing ALS doesn’t affect is the mind. “It debilitates every part of the body except the brain,” she says.
It’s estimated that there are between 2,500 and 3,000 Canadians living with ALS. The life expectancy of the disease ranges from two years to five years from the point of diagnosis. Besides the stress of dealing with a terminal illness, families also face costs that can run to about $200,000 over the course of the disease.
The brochure for this year’s Lethbridge Walk for ALS contains a message Gerard wrote for the 2016 Walk, for which he served as ambassador. In the message, Gerard noted: “… when I was diagnosed with ALS in August of 2015, I cannot lie; it was like getting punched in the gut. I truly thought my life was over. It didn’t take long for me to realize that wasn’t the case. Ironically, it has opened up my world even more and has emphasized what is truly important in my life, like the outpouring of love and support we have received as a family; from friends and so many others in this wonderful community of ours.”
Shelley says her husband wanted his fight with ALS to have a purpose and that fuelled his efforts to raise ALS awareness.
Gerard also wrote a book about his experiences with ALS, “My Life, My Awakening, and My Journey,” which Shelley is working to have published. She has found two publishing companies interested in putting it into print.
Sales are also continuing for a special coffee created in Gerard’s honour — “Gerard’s Blend” — which is available at Cuppers Coffee & Tea on 3 Avenue South. Proceeds from the coffee sales go toward the ALS Society and research, as will proceeds from Gerard’s book once it is in print.
Shelley is extremely grateful for the help provided by the ALS Society of Alberta and the South Health Campus in Calgary.
“They’re an amazing group of people,” says Shelley.
The ALS Society of Alberta works to assist families that are walking the difficult journey through ALS.
The society’s goal “is to make each day the best possible day,” says Lisa Copeland, the society’s manager of Communications & Events.
That includes making available the mobility aids and equipment ALS sufferers need to improve their day-to-day life. Because changes in condition can happen quickly, people with ALS “can’t wait eight or nine months to go through the government program” when a particular piece of equipment is needed, says Copeland.
“We can get it to them within hours if necessary.”
The aim, says Copeland, “is to keep people at home as long as possible.” That includes providing “ways to get around” so they can enjoy some quality of life through outings such as going to hockey games or other activities.
Sixty per cent of the money raised by the Walk for ALS goes toward client services provided by the ALS Society, including the equipment loan program, support groups, home visits, referrals and support for children through the Support for Champions program. The remaining 40 per cent supports ongoing ALS research.
This year’s Lethbridge Walk for ALS, which is one of 11 in Alberta, takes place Saturday, Sept. 8 with registration at 10 a.m. at the horseshoe picnic area in Henderson Lake Park. The walk starts at 11 a.m. and a barbecue will follow the walk.
Participants in the Walk for ALS raise money by collecting pledges.
To register for this year’s walk, or for more information, visit http://www.walkforals.ca or email LethbridgeWALK@alsab.ca.

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