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Given Inconsistent Support for Brain Injury in Canada, Peer Groups Are a Lifeline | CBC News

It’s early December and Barb Butler is handing out photocopied, handwritten notes with the date and time of the holiday pizza party to the group sitting in a circle around her – “for those of you who have memory problems, which is all of you.” “

Humor is always present at these meetings at a branch of the Regina Public Library. New participants in the Saskatchewan Brain Injury Association Survivor Support Group receive a pin that reads, “Hello, I can’t remember your name either!”

The group’s premise is simple: shared experience, mutual support, camaraderie, some fun and fundraising.

“This group means friendship and support to me when I need it,” says one regular, who appreciates being able to ask other members about their symptoms.

“It means I’m not alone,” says another. “It means I can absolutely be myself. If I cry, that’s okay.”

An older woman sits at a table and talks to a group of people.
Barb Butler has led a support group for people with brain injuries in Regina since 1998. (Natascia Lypny/CBC)

Brain injuries are misunderstood and isolating. They can have little or no external signs but completely upend a person’s inner workings and daily life.

Each year, 20,000 Canadians are hospitalized for traumatic brain injury, such as a sports concussion or a car accident. This does not include the tens of thousands who are not hospitalized or who suffer an acquired brain injury, such as from a stroke or a tumor. Despite this prevalence, “the current state of brain injury services and support across the country is characterized by fragmentation, isolation, and chronic underfunding,” according to the CGB Center for Traumatic Life Losses.

Instead, the survivors turn to each other.

“Like a big family, except we like each other,” Butler says with a laugh.

VIEW | Spend some time with a brain injury support group in Regina:

For brain injury survivors, peer support groups like this one can be a lifeline

Brain injuries are misunderstood and isolating. CBC News spent time with a peer support group in Regina that helps people feel less alone in their recovery.

Finding meaning in an accident

On the way home from a camping trip in 1993, Butler and her family took a detour to Wilcox, Sask. Having recently moved to Regina, they wanted to attend Athol Murray College of Notre Dame, a boarding school known for producing elite athletes.

As they turned off the highway onto the city’s main street, their minivan was hit by a semi-trailer and thrown several meters before landing in the ditch.

A mangled vehicle lies in a ditch on a highway.  A little further down the road, a semi-trailer is pulled aside, facing her.  Orange pilons shield the vehicles from traffic.
In 1993, Barb Butler and her family were driving home from a camping trip when their minivan was struck by a semi-trailer. (Submitted by Barb Butler)

Butler’s husband, young son and daughter all survived, but she spent her 38th birthday in a coma. Her first memories of her recovery come from Regina’s Wascana Rehabilitation Center, where she relearned basic functions such as walking and eating, engaged in conversation, and regained her ability to read and number. The left side of his body was partially paralyzed and numb for the next 20 years. She still struggles with short-term memory loss.

“I look good, but if you spent more than 10 minutes in my brain you would be very scared,” Butler says. “It doesn’t think like everyone else’s brain.”

At first, she found it difficult to identify as someone with a brain injury. When she was growing up, the term “brain damaged” was still in use and had a negative connotation.

“Believe me, I had the most pity at the party for the first six months of my life, until one day I looked around and realized there was no one at the party but you, Barb, so you might as well just move on,” said she remembers.

She is now 68 and has never resumed her teaching career. Instead, she realized her brain injury hadn’t happened To but she for her so that she can help people in similar situations.

An older woman with shoulder-length, dark blonde hair and hazel eyes smiles into the camera.
Barb Butler, 68, never worked as a teacher again after her accident. Instead, she poured her energy into supporting and advocating for people with brain injuries. (Natascia Lypny/CBC)

In 1998, Butler founded a weekly survival group that continues to this day at the Regina Library. She says it helps people feel seen and supported.

“I think they feel comforted that they’re not alone – that someone else knows what they’ve been through.”

Getting this support can be difficult and resources vary greatly depending on where you live in Canada.

That’s why in June 2022, NDP MP Alistair MacGregor introduced Private Member’s Bill C-277 to establish a national brain injury strategy. It calls for better education, prevention and treatment of brain injuries and a consistent, well-funded approach across the country. The goal is also to better identify the links between brain injuries and problems such as homelessness, substance use, mental illness and incarceration.

A lot of that The work of the federal government This area focused on concussions, including developing a national strategy and funding research on traumatic brain injuries.

VIEW | Barb Butler and her family advocate for a national brain injury strategy:

Butler has called on members of the Regina support group to write letters to try to advance this bill in Parliament.

“Canada is so diverse in its ability to help people,” says Butler, “and that’s why Bill C-277 is important to me because I think everyone in Canada with a brain injury should have the same rights and privileges as anywhere else .” other province.”

“Disconnected me from the world”

The evening after the library session, Brooke Knaus walks around a group of tables at the south Regina Starbucks, taking orders. The Social Beans group is another regular program of the Saskatchewan Brain Injury Association – one of several across the province.

According to Knaus, this environment can be good for developing social skills, practicing interacting with employees and making decisions.

Brijesh Patel has been attending these weekly meetings since fall 2023. The 28-year-old says he has struggled to make friends since his brain injury.

A young man sits on a couch and looks at his cell phone.
Since his car accident, Brijesh Patel has adopted a few habits to keep his brain sharp. One of them is learning French via app. (Natascia Lypny/CBC)

On March 1, 2020, Patel was riding in a car with friends when it drove off the Regina bypass into a ditch. The driver and another passenger were killed. He was thrown out of the car and woke up in the hospital due to a global pandemic. At first he thought he was in prison.

Many people in Canada spend months in treatment – ​​first in hospital, then in rehabilitation. Even when they go home, they are often unable to pick up life where they left off, and this can be isolating.

Patel is no stranger to brain injuries: His father suffered a debilitating stroke 20 years ago, which Patel says received little treatment.

When he was first recovering from the accident, Patel googled how he could help keep his brain sharp. Learning a new language was a suggestion. Already fluent in Gujarati, Hindi and English, Patel chose French. He started playing the tabla (a type of Indian drum) again, exercising regularly and going to the temple three times every weekend.

A young man plays a larger and a smaller drum with each hand.
Brijesh Patel learned to play tabla in India. He’s been playing again recently. (Natascia Lypny/CBC)

He is also a sponge for small details, such as the fact that damaged nerves grow back an average of one millimeter per day.

“I think people have this idea that when you have a brain injury, it’s like here’s this guy with a broken brain, but our brain has the ability to heal itself,” Patel says.

Despite the progress Patel is making on his own, the Saskatchewan Brain Injury Association offers him something more.

“You can be sociable. Because of the brain injury…it just cut me off from the world.”

“Something bigger than just ourselves”

Earlier this week, another group – with some familiar faces – came together not because of a shared love of coffee, but because they found a common rhythm.

“When we work together, we become part of something bigger than just ourselves,” says Mike Pelzer, who has led the Saskatchewan Brain Injury Association drumming group since 2010.

A man stands in a simple room and holds up three fingers on each hand.  At his feet lies a selection of percussion instruments.  A woman sitting at a high drum looks up at him.
Mike Pelzer began leading a drumming circle for brain injury survivors in Regina in 2010. It takes place on Wednesdays at the Argyle North Community Association. (Natascia Lypny/CBC)

“If you can say it, you can play it,” Pelzer encourages the instructor as he leads the group through a favorite exercise: using the phrases “Hot Pepper” and “Apple Pie” to beat the beat on their tambourines, djembes and wooden blocks to hold and shaker.

Carla Eckert beams as she plays her favorite instrument: a tabano.

“This Mike Pelzer — holy moly — literally helps us meditate in drum group every week,” she says.

A woman smiles while playing a drum with two mallets.
Carla Eckert joined the drum group in autumn 2023. She looks forward to it every week. (Natascia Lypny/CBC)

Eckert is a newer member of the local Brain Injury Association team. In May 2022, her husband noticed that she was not behaving as usual. They thought she had COVID-19. It turned out to be encephalitis – or inflammation of the brain – caused by a viral infection.

When she came home from the hospital, she had to relearn many basic tasks. Her short-term memory was impaired, as was her vocabulary. And because the infection was concentrated in her anterior temporal lobe, her emotional regulation was impaired.

Eckert, 52, always considered himself optimistic. Now she is exuberant.

“I just see things in a more positive light, much more positive than before,” she says, wearing a purple T-shirt that reads: “I am a brain injury survivor. What are your superpowers?”

Her love for life is evident on her Instagram account, which she uses as a public diary of simple everyday joys like preparing breakfast buffets, dancing while cleaning, and devotedly cheering on her favorite sports teams.

Six people sit in a circle.  In the middle is a stack of percussion instruments, each holding one, such as wooden blocks, a shaker and a tambourine.
The drumming group is one of several programs the Saskatchewan Brain Injury Association runs across the province. (Natascia Lypny/CBC)

She also documents the weekly drumming sessions where she enjoys connecting with other brain injury survivors and sharing helpful information.

“It’s really cool that when some of us don’t show up to some of these groups, we reach out to make sure someone is OK,” Eckert said.

In the drum circle, these relationships have developed into a synchronicity. The players find a rhythm together when the rest of their lives are out of control. They close their eyes when they get into the groove and stay put on cue. Silence and some peace.

New Year’s resolutions

It’s the New Year and Eckert is wearing another T-shirt in her favorite color. It says: “I see no good reason to behave at my age.”

An older woman writes on a white plate with a permanent market as another woman stares on in a T-shirt that reads,
Carla Eckert (right) also regularly attends the Saskatchewan Brain Injury Association survivor group meetings held at the Regent Place branch of the Regina Public Library. Barb Butler (left) leads the group in activities and discussions every Thursday. (Natascia Lypny/CBC)

She offers the phrase as her contribution to an activity Butler leads at this survivor support group meeting. Butler writes on a plate what the members want to leave behind in 2023. Sugar, swearing and stress are among the suggestions.

Then it’s time to smash it.

“You should feel lighter and unburdened because, in my opinion, all the things you wanted gone are now gone,” Butler tells the group after everyone has had a chance to hit the plate with the gavel. “So this is like a new day – a new beginning.”

A woman's hands write on a white plate with a permanent marker.  “Regina Support Group Goodbye 2023” can be seen on the plate.
The Saskatchewan Brain Injury Association survival support group in Regina said goodbye to things it planned to leave behind in 2023 by writing them on a plate and then smashing it with a hammer. (Natascia Lypny/CBC)

The new year brings a little more hope for a national brain injury strategy. On February 13, Bill C-277 was ranked, meaning it was selected for debate in the House of Commons.

“I would hope that anyone who has suffered a brain injury receives the same type of care and treatment anywhere in Canada,” Butler says.

But that’s not all. The sign also read: “Misunderstanding.”

“I would hope that the stigma of brain injury goes away,” Butler says. “That despite the brain injury, you are still yourself.”

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