Mary Rose Blackduck, a former Tłı̨chǫ broadcaster for CKLB radio and CBC North in Yellowknife, faced a challenging medical journey after experiencing symptoms that led to her being diagnosed with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. Blackduck, 69, initially sought medical help in Yellowknife after experiencing muscle spasms, cramps, weakness, and a loss of function on the right side of her body. Despite multiple visits to local doctors, she was only prescribed sleeping pills and told she was healthy.
Feeling unsettled by the lack of a proper diagnosis, Blackduck decided to travel to the University of Alberta Hospital, where she spent nearly $6,000 to seek answers. There, she was diagnosed with ALS, a devastating nervous system disease that typically gives patients a life expectancy of two to five years post-diagnosis. Blackduck expressed shock upon receiving the diagnosis, describing ALS as a “dreadful, cruel disease.”
The Northwest Territories Health and Social Services Authority (NTHSSA) acknowledged the complexity of diagnosing ALS, citing the absence of definitive tests and the variability of early symptoms. While the N.W.T. health department does not track ALS cases and lacks a full-time neurologist for diagnoses, it collaborates with visiting neurologists from Alberta to provide intermittent services in Yellowknife.
Following her diagnosis, Blackduck has been researching ALS and mentally preparing for the challenges ahead, including the eventual loss of motor functions, the need for assistive devices like wheelchairs and feeding tubes, and the inability to speak or eat normally. She expressed concerns about the future but remains focused on organizing her affairs and potentially relocating to Edmonton for better support, as the N.W.T. lacks an ALS support group.
Despite the financial strain of seeking a proper diagnosis, Blackduck does not expect reimbursement and is grateful for the time she has to prepare for the progression of her disease. She highlighted the importance of having support resources available for individuals with ALS and hopes to find solace in a new community as she navigates this challenging chapter in her life.
