Mary Rose Blackduck, a former Tłı̨chǫ broadcaster for CKLB radio and CBC North, sought medical attention after experiencing balance issues and muscle weakness. Despite multiple visits to Yellowknife doctors where she reported muscle spasms and weakness, she was initially misdiagnosed and prescribed sleeping pills. Frustrated with the lack of progress, Blackduck spent nearly $6,000 on a trip to the University of Alberta Hospital, where she was diagnosed with amyotrophic lateral sclerosis (ALS), a debilitating nervous system disease.
ALS, also known as Lou Gehrig’s disease, is a rare condition that leads to muscle deterioration, with an average life expectancy of two to five years post-diagnosis. Blackduck expressed shock upon receiving the diagnosis, describing ALS as a cruel and dreadful disease. The Northwest Territories Health and Social Services Authority acknowledged the complexity of diagnosing ALS, citing the absence of a definitive test and the variability of early symptoms.
The N.W.T. lacks a full-time neurologist due to funding constraints, leading to challenges in diagnosing conditions like ALS. As a result, the territory relies on visiting services from private neurologists in Alberta. Blackduck, now facing a grim prognosis, is contemplating relocating to Edmonton for better support services unavailable in the N.W.T.
Although uncertain about reimbursement for her diagnostic journey, Blackduck remains focused on preparing for the challenges ahead, such as losing the ability to speak and eat independently. With no ALS support group in the N.W.T., patients are encouraged to seek resources from organizations like ALS Canada and the ALS Society of Alberta. Despite the daunting road ahead, Blackduck expressed gratitude for knowing her diagnosis and is prioritizing organizing her affairs as she navigates her ALS journey.