Who Needs a Miracle For That Straitjacket Feeling?

Florida resident, Brian Jackson’s, life changed dramatically when he was 15.

That’s when the active high-schooler first started experiencing unusual and terrifying symptoms.

First, he stopped being able to write his own name. How weird is that? Then, he couldn’t control his dining utensils when he ate. What the heck? Things got worse in a hurry. Brian’s spine began curving, causing his torso to twist because his muscles were constantly—excruciatingly—contracting beyond his control.

Six months after his first symptoms appeared, Brian was confined to a wheelchair, without any answers.

At first, doctors were stumped. Was it scoliosis? No… scoliosis wouldn’t advance so quickly. It took months of futile doctor visits before the cause of Brian’s decline was found: He was suffering from a disorder called dystonia.

Dystonia causes involuntary muscle contractions, which leads to uncontrollable twitches and postures. Imagine that your neck muscles are all tied together on a single cord like the one threaded around the hood opening of a rain jacket. When you cinch the cord tight, the hood contracts tightly around your face. Dystonia causes muscles to do something similar–to cinch tight, pulling them into unnatural, disfiguring positions and often causing unbearable pain.

Brian likened dystonia contractions to being locked into a straitjacket… a very painful straitjacket.

Often, dystonia responds well to injections of botulinum toxin (commonly known as Botox). In Brian’s case, his family transferred him to a doctor in New York City who specialized in Deep Brain Stimulation (DBS). Small electrodes were surgically implanted in Brian’s brain. Connected to a pulse generator located in the chest, the electrodes send controlled amounts of electricity to the exact point of the brain causing the muscle contractions. The pulses disrupt the disordered “contract NOW!” signals that cause dystonia symptoms.

DBS doesn’t work for every person with dystonia. But from Brian’s perspective—and that of his father and mother—the surgery was miraculous.

Forty-eight hours after the surgery, Brian got out of his wheelchair to walk through the bustle of Times Square—he even climbed a couple flights of stairs! Remember the Christmas movie, A Miracle on 34th Street? Well, the streets and avenues of NYC must have special powers!

Source: www.giphy.com
Source: www.giphy.com

David’s parents were so grateful for their son’s recovery that they donated $1,000,000 to fund dystonia research and train doctors about the disorder at Florida State University (FSU).

And on Valentine’s Day 2016, Brian, now 25, and his family attended a fundraiser at FSU to keep the good work going.

Meanwhile, scientists at the National Institute of Neurological Disorders and Stroke continue to search for a cure for dystonia by, among other things, conducting detailed investigations of brain activity and patterns of muscle activity. Here’s hoping many more “miracles” are waiting on 34th street and every other street in the world.

Source: https://media.giphy.com

To hear Brian and his parents sharing part of his story, click here.



EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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