A New Brunswick son is sharing his story about his family’s health struggles in hopes of finding answers and signaling others who may have had similar experiences.
When Roger Ellis was first admitted to hospital in 2019 and had a seizure, he was misdiagnosed with epilepsy and given treatment.
The Bathurst, N.B., man has been going downhill health-wise ever since.
That’s why for the past two years, his son Steve Ellis has been trying to find answers to what has been causing his 63-year-old father to deteriorate mentally and physically.
“Everything about him has changed,” said his son, who now lives in Nova Scotia. “He has repetitive speech. He paces a lot. Before his illness, he had sleep issues, but it was just like anyone who can’t sleep every so often, but now it’s amplified.
“Every so often we get a glimpse of dad or Roger. But it’s few and far between.”
The Ellis family resigned themselves to the fact that they would never know what Roger’s illness is until he dies, but Steve said things might be different now after New Brunswick public health warned the public of a mysterious brain disease, which includes many of the symptoms Roger already has.
In a Q&A with New Brunswick’s chief medical officer of health Dr. Jennifer Russell on the mysterious brain disease, Russell said the symptoms of the disease include “rapidly progressing dementia; unexplained, significant weight loss; myoclonic, so that’s a really tightening of the muscles; gait attacks, which means you’re unco-ordinated, you look unsteady on your feet; and muscle atrophy, wasting of the muscles.”
Symptoms of the condition are similar to those of Creutzfeldt-Jakob disease, a rare degenerative brain disorder, but not much else is known — including its source.
Steve said his father had every single symptom of Creutzfeldt-Jakob disease, but when he got tested the result came back negative.
Roger has also been tested and misdiagnosed with autoimmune encephalitis and most recently with progressive supranuclear palsy (PSP).
“After we got that diagnosis in March 2020, he started to stabilize, which is not consistent with PSP at all,” said Steve.
There are currently 43 active cases of the mysterious brain disease in New Brunswick and the unknown syndrome hasn’t been identified anywhere else in the country.
News of the disease first emerged through a March 5 memo from deputy chief medical officer of health Dr. Cristin Muecke to the province’s various medical professionals. The memo asked anyone who suspects they may have come across a patient with the illness to refer them to a specialized clinic.
“When I read (an article) about the memo coming out… instantly I was like, ‘This is my dad,'” said Steve.
He says he then reached out to New Brunswick’s public health multiple times by phone and email, but did not get a response.
Global News has also tried reaching out to New Brunswick public health about their lack of response to Steve, but there was no immediate comment.
Steve eventually reached out to Roger’s family doctor who helped refer him to Moncton neurologist Dr. Alier Marrero, who is leading the investigation into the mysterious disease.
As of March 23, Steve said he has spoken with Marrero, who confirmed that he will look through his father’s chart, but said he cannot confirm if Roger is one of the patients with the mysterious illness.
This has given Steve some “cautious” hope.
“My dad has been sick now for almost two years. He gets an MRI every six months and it shows that the atrophy in his brain continues. It gives me hope in the sense that if they can figure out what caused it, they might be able to figure out how to treat it,” Steve said.
“And obviously, I don’t think it’s going to reverse what’s already the damage that’s already been done. But maybe it’ll slow the progression and we can have him for a little bit longer.”
As Steve waits for Marrero’s confirmation of his dad’s case, he said the public deserves to know what’s happening with this research and what kind of testing is being used.
“(The government, public health and some people) don’t want people to be scared and to panic, but I think people need to because that’s all we’ve been doing as a family,” said Steve.
He said he and his family wonder if this is genetic and if other members of the family will have it too down the line, which is a concern they have lived with for the last two years.
“If this is something that’s environmental, we need to know… That’s why I was trying to reach out to public health because I want to share my story with them,” said Steve.
Russell has told Global News that Marrero “feels there’s probably three different sources of possibilities. He is suggesting it could be from a food source, from a water source or an environmental source.”
When asked about whether this is something New Brunswick should be concerned about, Russell said that if anyone notices these types of symptoms, it’s best to get seen by a physician and make sure they get a referral to a neurologist.
“If we can find the etiology, if we can find the cause, then hopefully we can prevent it. So we have a lot of work ahead of us to put all this together and find out what the source is and what the cause is,” Russell said.
On March 26, Ellis received an email from New Brunswick public health encouraging him “to contact his primary care provider who will share his information with public health after their initial clinical validation.”
Ellis said he’s not satisfied with their response and said he reached out New Brunswick Green Party Leader David Coon who agreed to bring up his dad’s case at a meeting with public health next week.
Global News has also reached out to Marrero about his research, but has not yet received a response.