Mary Rose Blackduck, a former Tłı̨chǫ broadcaster, faced a challenging journey to receive a proper diagnosis after experiencing troubling symptoms in Yellowknife. The 69-year-old sought medical help in her hometown multiple times but was initially misdiagnosed and prescribed sleeping pills despite showing signs of a severe health issue. Feeling let down by the local medical community, Blackduck decided to travel to the University of Alberta Hospital, where she was diagnosed with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease.
ALS is a devastating nervous system disorder that causes muscle deterioration, with a life expectancy of two to five years post-diagnosis. Blackduck expressed shock and despair upon learning about her condition, describing ALS as a “dreadful, cruel disease.” Despite the challenges she faced, she is now focusing on preparing for the future by researching the disease and learning from the experiences of others with ALS.
The Northwest Territories Health and Social Services Authority (NTHSSA) acknowledged the complexity of diagnosing ALS due to the absence of a definitive test and the variability of early symptoms. The territory lacks a full-time neurologist to aid in diagnosing such cases, as neurology is not a funded core specialist service. The NTHSSA collaborates with visiting neurologists from Alberta to provide intermittent services in Yellowknife.
Blackduck, now contemplating a move to Edmonton for better support, acknowledged that she does not expect reimbursement for her diagnostic journey. While facing the harsh reality of her diagnosis, she remains grateful for the time she has to organize her affairs and seek out resources for living with ALS. The N.W.T. currently lacks a support group specific to ALS, but patients can access resources from ALS Canada or the ALS Society of Alberta for assistance.
