Brain injury survivors find comfort in support group

 I found zero comfort in stroke support groups, they were mainly about whining. If your hospital has one; IT MEANS THEY ARE A COMPLETE FUCKING FAILURE AT GETTING YOU 100% RECOVERED! They don't deserve to exist at all for such incompetence!

Brain injury survivors find comfort in support group

Trauma comes in many forms, and sometimes, what we need is a tight-knit community of those with whom we can all relate. That is where Michelle Lang has those individuals covered.

Lang leads the Stroke & Brain Injury Support Group at the M Fairview Health Clinic in Wyoming, which meets on the first Saturday of each month from 10 a.m. to 12 p.m. The group, founded by Lang for those recovering from different forms of brain trauma, is one she describes as a safe environment for attendees to open up and discuss their struggles.

“I think everyone feels very comfortable with each other there,” said Lang. “We are all a family. We’re all very close.”

The group’s origins are rooted in Lang’s own history of brain trauma following a stroke in April 2023. “I spent about a month in acute rehab,” she explained. “I was in a wheelchair to begin with. 

“I was also with a walker and a cane, so I worked my butt off to get to where I was. Eventually, I found that when I went to an exercise class, it made me realize how much in friendships I had lost as a result of the stroke. People don’t know what to say or what to do, so it’s easier for them to walk away or just ignore the whole situation.”

In finding a location to hold group meetings, Lang chose the M Fairview Health Clinic in Wyoming due to its proximity to her residence (Chisago City) and its familiarity. “The closest groups were either up in Duluth or down to the cities,” she said. “I think that a lot of it was because I was there all the time, too. I talked with the administration, and they were willing to give the space free of charge. It seemed like a natural choice.”

Enlisting the help of her daughter, Anna, to create and spread group flyers, Lang began hosting the first meeting in December of that year. Though attendance was initially minimal, participation steadily increased through Facebook and different neighborhood group websites. By May 2024, the group had 31 members from cities including Hugo and Forest Lake.

Among the first few who joined were Hugo couple Marie and Dennis Knieff. Dennis had previously suffered a malformation-induced brain bleed in 2022, which required emergency surgery. “We’d been coming here for occupational and physical therapy,” said Marie. “I was a little apprehensive just because I’ve never done anything like this, but when I got to know Michelle, it felt like going to your neighbor’s house. She kept us grounded and positive, and it just felt really at home. It’s nice to know it’s getting bigger and bigger all the time.”

After previous groups closed due to COVID-19, Forest Lake couple Carolyn and Douglas Schulette found Lang. “As soon as the pandemic came, it left us,” said Carolyn, who had attended a St. Paul-based brain tumor support group with Douglas. “When I saw another group that had to do with brain functioning, I thought it would be a good one to have some other people that he (Douglas) could relate to.”

The group has featured a number of notable guest speakers at certain group meetings. Among them is Dr. Haitham Hussein, a neurologist with M Health Fairview and the University of Minnesota Medical School, whom Lang herself has seen as a patient.

“There’s a lot of work that goes into starting a support group like that,” said Hussein, “sustaining and keeping it going. Michelle really single-handedly did that. It isn’t just that she had the motivation; she also had the perseverance to find resources and figure out how to keep things going.”

In his role as guest speaker, Hussein said that his goal is not to discuss any one single topic but to see it as an opportunity to spend time with individual stroke/brain injury survivors. “I get to learn more about their everyday struggles beyond the medical aspects,” explained Hussein, “which tends to be the focus when they come to the clinic. In the medical field, we have tools to measure stroke recovery developed based on the doctor’s opinion about what is helpful for a person surviving a stroke. But there is a different point of view when you hear the patient.”

Hussein said that spending this time helped him understand more about himself as a doctor and the group members’ recovery process. “For example, we think that if someone is able to walk, that’s good,” said Hussein. “But maybe you hear from the patient, ‘No, that’s not good enough because I want to be more independent or I want to go back to riding my bike.’

“Sometimes, what is important for stroke survivors and their caregivers might not be what a doctor is looking for or what the medical community thinks is a good or bad outcome,” Hussein said. “I also learned from the stroke survivors, when they go to a rehab facility, what ones are good and what are not very good. We can find, for example, more sophisticated therapists to help people recover from stroke in urban settings versus rural settings. It is helpful for me to be in these meetings so I can understand the everyday struggles at home with stroke recovery.

“I am grateful to this support group for inviting me and me to go multiple times. That has always been a fun and lovely experience for me.”

The next group meeting will be from 10 a.m. to noon Saturday, March 1, at the M Health Fairview Clinic, 5200 Fairview Blvd., Wyoming. To learn more about stroke symptoms and treatments, visit the American Stroke Association website at www.stroke.org/en/.