John McKenzie was just 49 years old when his wife, Kathy, noticed he was slurring his words on the telephone. She then started hearing it in everyday conversations, but John didn’t think anything was wrong with him.
“My husband owned his own automotive service centre, and someone actually called the Ministry of Labour to say that he’d been drinking on the job, because of the slurring,” recalls Kathy. “Other people would ask me, ‘What’s going on? Has John had a stroke?’”
His garbled speech, combined with confusion, impaired judgement and poor decision-making — he had gotten lost driving home from Toronto one night (a familiar commute), and his business was close to bankruptcy — prompted Kathy to seek out medical intervention. Their family doctor in Barrie, Ont., brushed off her concerns, so Kathy began looking for a second opinion.
Following an extensive search for a new doctor, John was sent for an MRI scan, and within a week the couple was consulting with a neurologist. The MRI showed that John’s brain had damage to its frontal lobe.
After ruling out other possible causes, John received a diagnosis of frontotemporal dementia (FTD) in 2016, six years after the onset of symptoms. He has a secondary diagnosis of primary lateral sclerosis (PLS), a low-spectrum ALS that can co-occur with FTD and impacts motor neurons. In John’s case, his upper motor neurons that control the tongue are affected, accounting for his slurred speech. At the same time, his difficulty recalling words and putting together sentences are symptoms of cognitive impairment from frontotemporal dementia.
“It was a long journey to get help,” says Kathy, who was relieved to finally have a diagnosis that explained John’s unusual symptoms.