Heather Sher, MD published a moving essay in the New England Journal of Medicine about her father’s ALS diagnosis, which she says was delayed by her denial.
Sher was a 23-year old medical student at the time. When ALS was finally diagnosed, she thought it might be something else:
I made a case to my father’s neurologist that his weakness was not a symptom of ALS, but a rare neurologic manifestation of Lyme disease. I’m not sure whether I was truly convincing or whether the neurologist was merely allowing my family time to adjust to a diagnosis that he knew was a death sentence, with no effective treatment or cure.
If he was indulging my denial, he was extra-indulgent in encouraging us to take a trip to New York to pursue exhaustive testing by experts in Lyme disease and starting my dad on empirical treatment for that condition. My father continued to decline clinically.
ALS has no link to Lyme disease, and they are quite different conditions. It was very difficult for Sher to accept the ALS diagnosis. The whole essay is worth reading:
Sher H. The Grace of Denial. N Engl J Med. 2019. (paper mirror 🔓)
Heather Sher, MD: An Unspeakable Loss: This Doctor’s Reflections on Losing my Father to ALS (mirror)
LymeScience: Lyme: No link to multiple sclerosis, ALS, Alzheimer’s, autism, or Parkinson’s
TV2: Camilla’s husband [An ALS patient] was promised a miracle at a German clinic: now he is dead
LymeScience: Journalists expose German Lyme clinics
Wired: An Alternative-Medicine Believer’s Journey Back to Science
CBC: Former Lunenburg councillor misdiagnosed with Lyme disease now told he has ALS
Saul Green, PhD: The Realities of Alternative Medicine for Serious Illness