Twenty four years ago, Donald Watt watched his father die from an illness doctors still consider an enigma.
“One day my father stepped out of his car and one of his legs just gave way under him,” said Watt.
“The following week his other leg gave out and he was confined to a wheelchair. Six months he later was dead.”
Watt’s father passed away from amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gherig’s Disease after the famous baseball player who died from it in the prime of his career.
“My father’s death was a startling wake-up call to me on mortality,” said Watt.
“I didn’t have enough time to spend with him before he died.”
So when Watt heard that Thalina Tchulokovsky, a Whitehorse woman diagnosed with ALS, was organizing a walk in support of those with the disease, he wanted to help out.
However, Watt never had the chance to meet Tchulokovsky. She died before that could happen.
Tchulokovsky discovered she had ALS in the spring of 2007.
For two years, the disease went undiagnosed. Tchulokovsky exhibited signs of sickness, but Whitehorse doctors couldn’t pin down the cause.
“There’s not a lot of awareness about ALS, and in the North even fewer doctors are aware of the disease,” said Wendy Magee, director of ALS Society for British Columbia and the Yukon.
“Only one in 100,000 people are affected by ALS; in a general practitioner’s career, a doctor may never come face to face with an ALS patient.”
ALS has no known cure and can affect both men and women at any time in their lives.
“I think Thalina was a little upset about the fact the doctors didn’t discover what she had sooner,” said longtime friend and coworker James Kathrein.
“If she had known earlier she could have done things differently.”
Tchulokovsky worked with Kathrein in the forest service for 25 years, tending a fire lookout tower in Tagish.
“Some of her fondest memories were spending time out at the tower with her dogs. She had a million-dollar view of Tagish—you can’t beat that view,” said Kathrein.
Tchulokovsky had no family here in Whitehorse and few friends. She grew up in Siberia and walked out of the country as a young teenager.
“I wish I would have had the chance to know those details of her life—why she left Siberia and ended up here in Canada—but she was a very private person,” he said.
Once Tchulokovsky was diagnosed with ALS, the symptoms of the disease progressed quite quickly.
She stopped working in 2007 and began to receive home care shortly after.
“The final stages of ALS are difficult; it’s 24-hour care,” said Watt. “Often the patient can’t speak or swallow and requires a great deal of medical attention. But their mind remains intact.”
Tchulokovsky passed away on May 8th.
A month earlier, she had gathered people together to organize a walk to raise money and awareness about ALS in Whitehorse.
Magee came up from Vancouver for the meeting and says she was impressed to see the amount of support Tchulokovsky received.
The minister of health, the mayor of Whitehorse, health-care professionals and Tchulokovsky’s colleagues attended the meeting.
“I’ve organized events throughout British Columbia and I’ve never seen a reception like that before,” said Magee.
The ALS walk, now under the direction of Watt, is slated to happen in early September.
“Thalina really wanted this walk to happen,” said Watt. “She wanted people to know how devastating this disease can be.
“This is the least that I can do.”
Watt hopes to raise $10,000 for the walk. The money will go towards supporting ALS research and to assist other ALS sufferers in the North with medical costs.
This will be the first ALS walk to happen in Northern Canada. Last year, these walks raised $2.2 million and spread the message of the malady across Canada.
“Without awareness people won’t ask whether they may have ALS and won’t know where to get answers,” said Magee.
Contact Vivian Belik at