Brain injury patients find support at Elgin hospital

Libby Smith was really worried about whether she'd fully recover from the stroke she suffered six months ago, because she felt she was making very slow progress.

The Sleepy Hollow resident still can't drive, can barely write, and doesn't trust herself to plant flowers in the garden by herself, lest she fall and get injured. But she can teach Bible study lessons, perhaps because it's all so ingrained in her memory, she said.

Last week, Smith ventured into the "Brain Works" support group for survivors of brain injury at Advocate Sherman Hospital in Elgin, and walked out feeling reassured.

"It answered a lot of my questions," she said. "I was actually concerned that it was taking so long (to recover), but I saw some other people that it had taken much longer and I thought, 'That's encouraging. It means I'm getting well."

The support group is lead by speech language pathologist Jennifer Bell, who says patients' experiences are in many ways alike, but in other ways starkly different. Some, for example, lose weight and their appetites, while others find themselves more sedentary and pack on the pounds.

One of the most difficult changes is the loss of independence from not being able to drive, at least at first, Bell said.

"The hardest part of this journey you're all on is that you're left with a new brain and a new body," she said, "and you're not sure what to do with it."

But there are also stories of remarkable recoveries, such as one patient who at first was in a wheelchair and has recovered so well that he's now a ride share driver, she said.

The support group is so popular that a new monthly session debuted this week.

A common symptom of brain injury is fatigue, which Dave Carlson of Algonquin said affects him daily after his stroke in December 2015.

"It's a tremendous lack of energy," he said, adding he's put on 30 pounds because it's so hard to maintain a regular workout regimen.

That, in turn, affects his emotional well-being, he said. "I'm mad about stuff," he said. "It's exhausting to be mad all the time."

Bell suggested having reasonable expectations, such as lifting less weight or doing fewer repetitions.

"You're different now," she said. "It's not a bad difference, but holding yourself to those same requirements does not help you."

"It's really important to listen to your body," she added. "Usually, it's trying to tell you something."

Each session is different: there can be a lot of laughter, but conversations can get really emotional, too, she said.

Bell shares medical journal articles with the group participants, and points them to a variety of brain injury resources. She gives them practical advice such as to keep challenging themselves with puzzles and brain teasers, and by changing up their daily walking routes.

She also encourages them to focus on the basics: getting enough sleep and proper nutrition. "It's all lifestyle. Healthy living," she said.

Stroke survivor Jim Geminer, who leads the support group with Sherman's senior chaplain Digna Campanano, had to work hard in therapy to recover his ability to speak after a 2012 stroke. "I had to learn where to put the tongue in my mouth for each letter," he said.

Joining the support group early on helped him understand what he was dealing with, Geminer added.

"They say the window (for recovery) is six months to a year, but you can still improve after that," he said. "A lot of those people in there have improved a lot in a bunch of years."

The Brain Works support group is open to anyone with a brain injury and their caregivers. For more information contact Jennifer Bell at jennifer.bell@advocatehealth.com or (224) 783-8277.