Family members of patients with mysterious brain disease losing patience with N.B. public health

It has been over a month since New Brunswick’s health minister announced the creation of an oversight committee to help learn more about the mysterious neurological disease in that province.

On Wednesday afternoon, Health Minister Dorothy Shephard provided an update on how the investigation is going during a COVID-19 briefing.

With little data being brought to light on what could be causing the mysterious neurological disease in New Brunswick, family members of patients and those with the syndrome are growing impatient.

“When I hear Minister Shephard thank the families for their patience and trust. The patience is pretty thin and the trust was thin to begin with,” said Steve Ellis, whose father Roger Ellis, 63 of Bathurst, N.B., has been suffering from the disease for several years.

Ellis has been pushing for the province to be more transparent and suggested providing annual updates on the investigation into the disease. As time goes by, he sees his father’s condition worsening.

"I’m still remaining very cautiously optimistic because I see how quickly my dad has changed over the last few months and how little medications have done overall," said Ellis.

To date, public health says six people have died. Ellis' father is one of 48 cases being investigated for the disease by the province.

On Wednesday, Shephard said the investigation into the disease is progressing as more patients continue to be interviewed by public health.

“The oversight committee’s work will also help determine if there are any common links between cases, the potential for other diagnosis and whether there can be treatments offered for some cases,” said Shephard.

On June 3, Shephard announced the creation of a new oversight committee that will support the work of the mind clinic in Moncton, as well as seek expertise from federal and provincial physicians. The committee will include a set of specialists, experts, and neurologists to provide a second level of expertise, according to Shephard.

The committee will also be working extensively with public health to find similarities between the cases, as well as speed up the process that will lead to a potential diagnosis or cause.

Gabrielle Cormier, 20, was diagnosed in April with the unknown neurological syndrome that has only been found in New Brunswick. Her symptoms include memory loss, vision problems, and the inability to stand for long periods. As a result, she must now use a cane.

Cormier says she’s currently trying to pass the time by checking things off her bucket list.

"The first thing on my bucket list, I’m going to see the ballet. I’m excited for it because I was a ballet dancer and now I’m going to see actual ballet dancers," said Cormier.

Though pleased to see some progress being made in the investigation, family members like Bonnie Curtis-Vautour are asking that more official updates be provided from the province.

Curtis-Vautour says her mother passed away from the disease earlier this year.

"I'll do whatever it takes to get things going. We need to find out what's going on with this brain disease. One death is too many deaths in my book," said Curtis-Vautour.

According to public health, of the 48 cases being investigated, 39 cases have been confirmed and nine are suspected cases. Six people have died from the disease. The Government of New Brunswick's website on the unknown neurological disease says the age of those being investigated ranges from 18 to 85.

Symptoms of the mystery syndrome include rapidly progressing dementia, muscle spasms, atrophy, and a host of other complications. Creutzfeldt-Jakob disease, or CJD, has been ruled out in the New Brunswick cases.

Public health has created a website to provide updated information on the investigation that is exploring all potential causes.