Family upset by lack of information about mystery New Brunswick brain disease

Fredericton — A loved one-fearing family suffers from a mysterious neurological syndrome in New Brunswick and says they have lost the patience to wait for information from health officials under investigation.

“Maybe the government is afraid to over-inform and scare people, but at the same time, not providing information also scares people,” the father said of all mysterious illnesses. Steve Ellis, who has symptoms, said.

There were 6 deaths and 44 suspicious cases associated with brain disease.

According to the New Brunswick Department of Health, the first cases date back to 2015, but were not identified until early 2020, when a series of cases were detected by the Creutzfeldt-Jakob disease monitoring system operated by the Public Health Agency of Canada. ..

The agency conducts national surveillance of prion diseases such as Creutzfeldt-Jakob disease, which causes neurological symptoms.

Symptoms of state mystery syndrome include rapidly developing dementia, muscle spasms, atrophy, and many other complications. Creutzfeldt-Jakob disease (CJD) is excluded in cases in New Brunswick.

Most cases have been identified in the northeastern and southeastern parts of the state, but it is unclear if geography is relevant. At least one researcher states that the potential cause may be some form of environmental exposure.

Ellis, who started a support group on Facebook for her family, says his father, 63-year-old Roger Ellis in Bathurst, New Brunswick, had no neurological problems before showing symptoms two years ago. I will.

“He fell at home with a seizure in June 2019. He went to the hospital and within a few weeks he had hallucinations, delusions, aggressive behavior, weight loss, and almost childlike behavior. There was a downhill spiral, “he said in an interview last week.

Since then, Ellis said her father had undergone a wide range of tests, including spinal puncture, to rule out suspicious causes. His father currently lives in a special nursing home for the elderly.

“Until just a month ago, I thought he was the only one dealing with this,” Ellis said. “The worst part is seeing your dad’s change. The second worst part is not knowing why.”

Ellis said he had asked government officials for some answers, but didn’t get them. News of the unknown syndrome was first revealed through a March 5 memo from Dr. Christine Mucke, Deputy Chief Medical Officer of Health, to various associations of medical professionals in the state.

Last week, Health Minister Dorothy Shepherd said a website was being developed to provide information to the general public and “is expected to be open to the public at any time.”

Peggy Jenkins, whose son appears to be ill, said he wasn’t surprised that the authorities didn’t provide any further answers.

“I’m not surprised because I don’t think they know, but I’m surprised they aren’t talking more with their families just to reassure us,” she said.

His son Andrew, who lives in Riverview, New Brunswick, was only 39 years old when he began to show symptoms in February 2019.

She said she couldn’t finish the sentence or remember her name and was hospitalized by September of that year and had a series of tests including spinal puncture, CJD exclusion, and many other possibilities. It was.

“He was able to sit down today and learn how to print, but next week he didn’t know how to print,” she said. “If this is happening to many people, it’s very scary.”

According to Jenkins, his son’s neurologist is working with Dr. Alier Marrero of Moncton’s Vitalite Health Network, who is leading the study of mystery syndrome, but his son is not part of the research group. I don’t know if is included in the research group. I answered her.

Marello did not respond to the interview request for this story.

Edmonton’s Trina Musso has been curiously watching the news of a mysterious illness after her father Cedric Mills died five years ago. Mills was 60 when he died in Bridgeport, Newfoundland and Labrador. He worked as a fisherman in Pennfield, southwestern New Brunswick, and became ill in 2014 after spraying fishing nets.

“I contacted New Brunswick and Dr. Marello’s public health, but neither responded,” she said. Muso joined the Facebook support group after seeing his father exhibiting the same symptoms as other suspected illnesses.

“They tested him for all the illnesses known to a person — Lyme disease, Parkinson’s disease (multiple sclerosis), you name it, they tested him for it “She said. After his death, his brain was tested for CJD, but the result was negative.

“The doctor said my dad was a medical mystery. That’s the term they used,” she said.

Muso said he had all of his father’s medical records and wanted to share them with researchers in New Brunswick, but no one called her. She hopes that with enough information, the doctor will eventually be able to provide some answers.

“At this point, we lost our father and we can’t bring him back, but if there was one thing he wanted, it was to know what was wrong with him. That also applies to his family. “Musou said.

Kevin Bisset

Posted on