A young, Williams Lake wife and mother of two girls is learning to cherish each moment with her family since being diagnosed with amyotrophic lateral sclerosis (ALS).
Adrienne Kelso, 36, started noticing something was wrong during the summer of 2020 when, out of the blue, normal, every day tasks were getting more difficult.
“I was at home on maternity leave and just thought I had maybe not been doing enough exercise,” Kelso said.
Menial tasks like walking up stairs, even standing up, were starting to pose a challenge.
Her family, including her husband, Kyle Worsley, and sister-in-law, Sabrina Wheeler, also began seeing signs.
“I knew something was wrong when she was refusing to come over to my house for visits,” Wheeler said. “I asked her why and she said it was because I had stairs.”
ALS, also known as Lou Gehrig’s disease, is a terminal disease of progressive paralysis that eventually leads to the loss of the ability to move, speak and breathe. The disease causes the brain to no longer be able to communicate with the muscles of the body.
According to statistics, four out of five people die within two to five years of their diagnosis. Currently, there is no cure.
Kelso first heard from doctors in Williams Lake she may have ALS, however, could not get a concrete diagnosis. Kelso was referred to Kamloops for more testing, and then, ultimately, to the ALS clinic in Richmond.
“I’d never heard of it before then,” Worsley said. “It’s tough for them to diagnosis because ALS mimics about a half dozen different diseases and they have to rule out all of those, first.”
Since September of 2020, Kelso’s physical condition has worsened to the point where she is now forced to use a motorized wheelchair for transportation. Prior to her diagnosis she had been employed at Walmart.
“Now, each week I have to learn to overcome something new,” she said, explaining as soon as she learns how to cope with one issue, another one pops up shortly after. “One of the things that makes ALS the worst is you don’t lose your mind.”
Worsley, who had been working most recently as a boiler maker on the Site C dam, has left his job to help care for his wife. The rest of the family, including both Worsley and Kelso’s parents, who also live in Williams Lake, chip in at the house where they can.
Kelso said her children — Emma Worsley, 4, and Alora Worsley, 2 — don’t fully understand her disease, but try to be helpful.
“[Emma] helps me try to stand up, even though she’s so little, and tries so hard. She’s getting to the helpful stage. But they know I can’t get up and chase them around so they can get away with more stuff,” she joked.
The ALS Society of B.C., meanwhile, provided equipment for Kelso like walkers, a motorized wheelchair, bed rails and accessibility items for the family’s home.
Other than the help they have received from the ALS Society of BC, both Worsley and Kelso said it’s shocking how little support is available to those with the disease.
“You are pretty much diagnosed and then they send you on your way. There’s little to help you,” Worsley said, pointing to the lack of treatment available.
This month, Kelso, along with her family and friends, are preparing to join thousands throughout B.C. in the annual Virtual Walk to End ALS, taking place in Williams Lake on Saturday, June 19.
Funds raised from the event enable people like Kelso living with ALS to access services that lessen the burden of the disease and ensure a strong pipeline of funding for Canadian ALS research.
Kelso pointed to a new initiative in B.C., PROJECT HOPE, that aims to research for a cure and clinical trials through a $2 million-grant from the province to the ALS Society of BC. It is the first time clinical trials have been undertaken in the province.
PROJECT HOPE will establish an ALS research professorship in collaboration with the University of British Columbia (UBC) to offer patient care and further improve patient outcomes and research, with the goal of increasing access to clinical trials in B.C. for local patients.
In Williams Lake, Kelso said she and her family, along with a few others, plan to participate in the Virtual Walk to End ALS at the Lake City Secondary School Williams Lake Campus track.
Anyone interested in taking part in the event can do so by signing up on the Williams Lake Walk to End ALS website at www.walktoendals.ca, then scrolling down and clicking on ‘Williams Lake.’
Kelso and her family, meanwhile, are hoping to continue to spread awareness about the devastating disease while living each day to the fullest.
The couple met during high school in Williams Lake and have been together for the past 21 years.
They said the family plans to try to spend time together camping this summer, while not focusing too much on the future.
“You kind of focus on what you can do and not what it has taken from you,” Kelso said. “I just try to worry about the now. You take it as it comes.”