Carol Clark is one of 48 people in a Canadian province who've developed a mysterious brain disease.
She stutters, has memory loss, and lost a significant amount of weight, her daughter said.
The causes of the disease are unknown, but researchers are investigating.
At first, Carol Clark, 75, had flu-like symptoms and rapidly lost weight. Now she forgets long conversations she had just a few days prior, according to her daughter, Joanne Graves.
Clark is one of 48 people in Canada's New Brunswick province who've developed a mysterious brain disorder that's suspected to have caused six deaths, Dr. Alier Marrero, a neurologist leading New Brunswick's investigation, told the BBC last week.
The cluster of cases became public in March when Radio-Canada and the CBC got a leaked memo that health officials had sent to local doctors. The memo told the doctors to be aware of patients showing symptoms of Creutzfeldt-Jakob disease, including blurred vision, hallucinations, or disorientation. While the mysterious disorder bears similarities to Creutzfeldt-Jakob, it's not the same disease.
There's no known cause or treatment.
A no-name mysterious brain disorder
The cluster of cases surfaced in 2018, the same year Clark moved to New Brunswick, but doctors believe one case occurred in 2013, the BBC reported.
Patients first came in with pains, spasms, and behavioral changes. The symptoms progressed to impaired cognitive abilities, muscle wasting, drooling, hallucinations, and tooth shattering over the next 18 to 36 months, Marrero said.
Clark started to have some of these symptoms in January 2020.
"The muscle mass, it was just falling off her," Graves said.
Clark's legs and arms felt heavy, prompting several trips to the hospital. But it wasn't until June, when she began having tremors in her hands and arms, that she was referred to Marrero.
Though an MRI revealed that her left frontal lobe had "changed," Graves said, tests, scans, and a spinal tap didn't lead to a diagnosis. She tested negative for Creutzfeldt-Jakob disease.
"They never put a word on it, a name on it, because, let's face it, they still haven't. They've just called it the mystery neurological disease," Graves said.
A leaked memo revealed a larger trend
Roger Ellis, now in his 60s, had led a healthy life in New Brunswick's Acadian Peninsula. But in June 2019, he had a seizure. Ellis' son, Steve Ellis, said his father's health took a downturn.
"He had delusions, hallucinations, weight loss, aggression, repetitive speech," Steve Ellis told the BBC. "At one point he couldn't even walk. So in the span of three months we were being brought to a hospital to tell us they believed he was dying - but no one knew why."
Like Clark, Roger Ellis underwent numerous tests and scans, and he tested negative for Creutzfeldt-Jakob disease.
He was left without a diagnosis. It wasn't until the leaked memo emerged that the younger Ellis realized his father was part of a trend.
Investigators are searching for causes of the disorder
Experts in neurology, environmental health, and zoonotics are working to find a cause of the mysterious condition.
One possibility is that the people were exposed to environmental toxins. Investigators are studying excitotoxins, which were associated with a food poisoning case in a neighboring province in 1987, and beta-methylamino-L-alanine, which one 2009 study linked to Alzheimer's and dementia.
Clark goes to bed worrying she won't be able to walk the next day
Ellis is now in a specialized home where he gets assistance with daily activities, his son told the BBC. Though his condition has stabilized, he still has sleep and speech problems.
Clark is taking Clonazepam, a sedative used to treat anxiety and seizures. Graves said that her mother's condition had stabilized but that she goes to bed every night fearing that she won't be able to walk or talk the next day. Clark also stutters and wears layers of clothing to cover her weight loss.
"I call her an onion," Graves said.
Graves said that she was frustrated that the cluster of cases hadn't been made public earlier, adding that more awareness might have helped her mom get treated faster.
"Maybe if it was made more public that they would have possibly looked into her earlier, and she may not be in the situation that she's in," Graves said.
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