Caregiver Corner: the Body as a Whole

By Ian Hebeisen

Over the years, my mom has undergone various treatments to battle her brain injury. She tried everything from physical therapy to vocational rehab to help reclaim her life, each aiding to some degree. Yet throughout her therapies, her progress fluctuated. At times, when one aspect of her injury improved, another worsened.

Early on, we began to notice certain tremors and ticks that would arise. Most notably, her face would contort into a large, involuntary frown – something we dubbed as “porging”, after the aliens from the Star Wars franchise. Other random contractions began to crop up as well. “Adjustments to my back set off tremors in my arms or legs,” said mom.

“Every therapy I have ever done triggers a reaction somewhere else in my body. It is why I originally spent 18 months in vision therapy, and why I was not able to make progress in physical therapy,” said mom. For example, right she’s partaking in a type of vision therapy that’s causing her jaw to clench. “It’s causing contractions in my jaw, but my ability to communicate has improved. I keep doing it because I know it’s helping,” said mom.

Since she’s dealt with these symptoms for so long, they’ve just become another part of life. “When you live it every day, you lose sight of it,” said mom. “It’s hard for me to recall all the ways that I’ve improved because I deal with it all the time.”

There’s a couple of important takeaways from my mom’s experience. First, her unexpected ailments demonstrate the true interconnectivity of the nervous system. When one part of her brain overloads, the excess stimuli get pushed onto another part, triggering her nerves and causing the contortions. Or, if a nerve in one part of the body flares up, it can cause similar problems in a different part. It’s all part of the same system, and seeking help can mean treating every part of the body.

Second, the random contractions show that the treatments are actually doing their job. When undergoing a treatment or therapy after brain injury, you work on repairing and rebuilding neuropathways. It’s grueling work, and when reconstructing these pathways, the brain will sometimes trigger other parts of the body in the process.

“It’s like when a toddler throws a temper tantrum,” said mom. “My brain doesn’t like doing something new, so it throws a fit, and I flare up for a couple of weeks. As the neuropathways build and the body adapts, they calm down.” Taking a look at these patterns, we can see how holistic brain injury recovery can truly be. If stimuli in one part of the body can trigger a reaction in another part, we should be examining and treating the nervous system in its entirety.

Keep an open mind about you when it comes to seeking treatment. If the science is right, a treatment targeting one part of the mind or body could actually help improve a multitude of ailments. With no two brain injuries being the same, you never know what might work for you.

For caregivers, remember to pay attention to the symptoms your loved one experiences. Take note of any new flare ups that arise, and potentially cross-reference those with past ailments and treatments. Be empathetic to their symptoms – it isn’t easy to experience such difficult side effects when undergoing treatment. Your listening ear and encouragement will play an important role in your loved one’s recovery journey.

Ian Hebeisen is a writer based in the Twin Cities. Graduating in 2020 with a degree in Literature with a Writing Emphasis, Ian spends his time writing for The Brain Health Magazine. He also writes comics, zines, short stories, and poetry. He lives with his partner and two cats, and enjoys playing board games and reading.