When Mary Rose Blackduck started feeling like she would stumble and fall every time she walked, she knew she had to see a doctor.
The Yellowknife woman ended up spending thousands of dollars out of pocket to travel south in order to learn that she had a fatal disease.
Blackduck, 69, is a former Tłı̨chǫ broadcaster for CKLB radio and CBC North. She says she visited doctors in Yellowknife five times and told them she had painful muscle spasms, cramps and weakness to the point where she fell and broke a foot, and that the right side of her body stopped working.
“I knew I was in trouble,” she recalled.
After multiple X-rays and blood tests, she says doctors in Yellowknife told her she was healthy and prescribed her sleeping pills.
“That is when I lost confidence and I lost faith in our medical community here in Yellowknife and right across the Northwest Territories,” she said.
Blackduck then spent nearly $6,000 to visit the University of Alberta Hospital, where she was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, which is a rare nervous system disease that leads to damaged muscles. The typical life expectancy after diagnosis is two to five years.
Blackduck says she went into shock when she heard the diagnosis. She describes ALS as “a very dreadful, cruel disease.”
The Northwest Territories Health and Social Services Authority (NTHSSA) says it can’t comment on individual cases. However, in an emailed statement to CBC News, the authority said diagnosing ALS is complex because there isn’t a definitive test and early symptoms can vary.
“We recognize that the journey to diagnosing ALS can be difficult and include periods of uncertainty,” the statement reads.
The ALS Society of Canada says at any given time, there are about 4,000 Canadians living with ALS and approximately 1,000 die from the disease each year.
The N.W.T. health department said it does not track cases in the territory.
The territory also does not have a full-time neurologist to diagnose people who might have the disease. The NTHSSA said that’s because neurology is not a funded core specialist service in the territory.
The authority said it works with a group of private neurologists in Alberta who provide visiting services in Yellowknife “with varying frequency.”
Since her diagnosis, Blackduck has been researching the disease and watching interviews of others who have ALS to prepare herself for what’s to come.
“I won’t be able to talk anymore … I won’t be able to eat salads because my muscles are dying,” she said.
“I’m going to need some oxygen and then feeding tubes, wheelchairs. I won’t be able to move, not even my fingers. Everything will just be a complete vegetable.
“I dread that time when I have to face it,” she said.
The N.W.T. health department would not say whether Blackduck would be reimbursed for her trip to Alberta for a diagnosis. The department says it cannot comment on individual cases, and that patients need a medical referral under the territory’s medical travel policy.
“Should a resident require medical travel, we recommend that they work with their health care provider to submit a request,” the department said in an emailed statement to CBC News.
Blackduck says she doesn’t expect to be reimbursed.
“I don’t think I’ll get a refund in my lifetime,” she said.
After living in the N.W.T. all her life, she is now considering moving to Edmonton where she hopes to join a support group.
There isn’t a support group for people with ALS in the N.W.T., the health department said. The department says patients can reach out to ALS Canada or the ALS Society of Alberta for more resources.
For now, Blackduck is focusing on giving away her clothes, sewing machine and other belongings.
“I am relieved to find out what disease I have. I’m also grateful for the time that I have now, so I can sort out my affairs,” she said.
