The Diagnosis: You have ALS

“You have ALS.” The pronouncement from the neurologist comes down like a life sentence from a high court judge. “Do you know what that is?” I’m caught off-guard. I stammer, in my already deteriorated speech pattern, “Lou Gehrig’s Disease?” The term is fresh in my memory because the renowned scientist and thinker, Stephen Hawking had just died, after living with ALS for many years. The thought was incongruous. I was just having trouble pronouncing my words, that’s it. No other issues. My expression must have been quizzical. “Bulbar onset,” she continues. I would look that up later. I wait a moment, I counter,”How sure are you?” “Eighty-five percent. There is no definitive test,” she states matter-of-factly. “And there is no cure. It’s always fatal.” Ouch! I had been through a litany of tests and consultations over a four-month period – ultrasound, magnetic resonance imaging, electromyography, consultations with a speech pathologist and a otolaryngologist as well as my family physician who was quarter-backing the process. I’m in a state of shock. This diagnosis is totally unexpected. She hands me an in-house book with spiral binding and full colour cover, entitled ‘Living with ALS. Your life will never be the same’. As if to somehow mitigate the certainty of her conclusion, I offer “I’m still working. I could retire, but I enjoy what I do. I do tax and accounting. We are right in the middle of our busy season.” The neurologist smiles, “Well, it’s time to retire. Go home and wrap it up.” I am processing the conversation, the words, the shock of it all. I have hardly ever been sick a day in my life, never been a patient, no history of any illness, never smoked or imbibed. Is this for real? The neurologist interjects, “By the way, in your book, there is a sheet of calling cards. These are the people on your team, and you will be seeing each of them every time you come.” I breathe deeply. That is an immediate comfort. I am going to have a team. Apparently, I matter. I go from seeing my family physician once a year for a routine medical to having a whole team, who’ll see me every six to eight weeks. I stand to leave, when she turns “Would you be interested in being part of a study? It could be expensive, a thousand dollars a day. We don’t have all the details yet.” “Yes,” I answer without hesitation. I have no idea what it is or how it works. I’m an early adopter by nature and it’s worked out so far. “My secretary will set a follow-up appointment.” “Thank you,” I struggle to enunciate. For some reason, I feel slightly optimistic. More to follow.

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