When Mary Rose Blackduck began experiencing difficulties walking and feeling unstable, she realized she needed medical attention. The Yellowknife resident ended up spending a significant amount of money to travel outside her region to discover the cause of her health issues.
Blackduck, who is 69 years old and a former Tłı̨chǫ broadcaster for CKLB radio and CBC North, sought medical help in Yellowknife after facing painful muscle spasms, cramps, weakness, and experiencing a fall resulting in a broken foot. Despite visiting local doctors five times and describing her symptoms, she felt her concerns were not adequately addressed.
Following inconclusive tests and being prescribed sleeping pills as a solution, Blackduck lost faith in the local medical community. Subsequently, she made a substantial financial investment, approximately $6,000, to seek a diagnosis at the University of Alberta Hospital. There, she was diagnosed with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, a rare condition affecting the nervous system that causes muscle damage. The typical life expectancy post-diagnosis ranges from two to five years.
Receiving the devastating news left Blackduck in shock as she described ALS as an extremely severe and merciless disease. The Northwest Territories Health and Social Services Authority (NTHSSA) refrained from commenting on individual cases but acknowledged the complexities involved in diagnosing ALS due to the absence of definitive tests and the variability of early symptoms.
According to the ALS Society of Canada, approximately 4,000 Canadians are living with ALS at any given time, with around 1,000 succumbing to the disease annually. The N.W.T. health department disclosed that the territory lacks a full-time neurologist for diagnosing such conditions, attributing this gap to the absence of funded core specialist services in neurology.
In light of her diagnosis, Blackduck has been proactively researching ALS and learning from others’ experiences to brace herself for the challenges ahead. She anticipates a future where basic functions like talking and eating will become increasingly difficult due to muscle degeneration. Despite her grim outlook, Blackduck remains determined to face the future head-on.
Regarding potential reimbursement for her diagnostic journey, Blackduck expressed doubts about receiving any compensation, stating that she does not expect it in her lifetime. Contemplating a move to Edmonton for better ALS support services, she acknowledged the lack of local resources in the N.W.T. for individuals with ALS, suggesting patients seek assistance from organizations like ALS Canada or the ALS Society of Alberta.
As Blackduck prepares for the road ahead, she is focusing on organizing her affairs and belongings, grateful for the clarity her diagnosis has provided and determined to make the most of the time she has left.
