Mary Rose Blackduck sought medical attention when she began experiencing difficulties walking and feared falling. Despite visiting doctors in Yellowknife multiple times and reporting symptoms like muscle spasms and weakness leading to a foot injury and loss of function in her right side, she was initially told she was healthy and prescribed sleeping pills. Dissatisfied with the diagnosis, she spent nearly $6,000 to travel to the University of Alberta Hospital, where she was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
ALS is a rare nervous system disorder that affects muscles, with a life expectancy of two to five years post-diagnosis. Blackduck expressed shock upon learning of her condition, describing ALS as a “dreadful, cruel disease.” The Northwest Territories Health and Social Services Authority (NTHSSA) acknowledged the challenges in diagnosing ALS due to the absence of a definitive test and varying early symptoms. At any given time, around 4,000 Canadians live with ALS, with approximately 1,000 deaths annually from the disease.
The N.W.T. health department does not track ALS cases within the territory and lacks a full-time neurologist for diagnosing such conditions, citing funding limitations. Instead, the authority collaborates with visiting neurologists from Alberta to provide intermittent services in Yellowknife. Blackduck, post-diagnosis, is researching ALS and mentally preparing for the disease’s progression. She anticipates losing motor functions progressively, necessitating medical interventions like oxygen support and feeding tubes.
The N.W.T. health department did not confirm if Blackduck’s diagnostic travel expenses would be reimbursed, noting that patients must follow the territory’s medical travel policy and obtain referrals from healthcare providers. Despite not expecting reimbursement, Blackduck contemplates relocating to Edmonton for better ALS support services, as the N.W.T. lacks a dedicated ALS support group. Patients in the territory are advised to engage with ALS Canada or the ALS Society of Alberta for additional resources and assistance.
Facing the reality of her situation, Blackduck is organizing her affairs and possessions, acknowledging the relief of knowing her diagnosis and expressing gratitude for the time she has to prepare for the future.