Man Overcomes Neurological Disorder to Run Marathon

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(Ed. Note: Here’s a tremendous story of a young man from a story run in the Zeeland, MI Sentinel who had a severe form of dystonia (ST and upper truncal dystonia including Dysphonia). In our July newsmagazine you read of him having the DBS surgery. What were his results? Read on – a great, great ending. We’re all proud of you, Brian. Keep on!)


Virtually all his adult life, Brian Stephenson has suffered through severe muscle spasms caused by a neurological disorder.

The pain was excruciating and the disorder sapped his energy. The spasms were so severe at times he could barely talk, let alone read a goodnight story to his daughter.

But last year, doctors implanted two brain stimulators in Stephenson’s brain that changed his life dramatically. The 34-year old Zeeland resident is not only returning to a more normal life, he has rebounded so far that he is now training to run in this fall’s Chicago Marathon.

Stephenson has cervical dystonia and oromandibular dystonia genetic disorders which doctors believe are caused by a chemical imbalance in the brain.

“My head would move so much I would get dizzy,” Stephenson said of the spasms. “I always drank out of a straw because I couldn’t hold a glass still to drink.”

The disease also affected his speech, making it hard to understand him at times. His fingers would sometimes curl up making it difficult to dribble or shoot when he played basketball with friends.

Symptoms first struck about 15 years ago when he was a student at Michigan State University and were at their worst in 1994 and 1995. It would distort his facial muscles and occurred on a daily basis.

Last summer Stephenson underwent surgery at Northwestern University in Evanston, IL. Doctors implanted two deep brain stimulator devices in his brain and two battery packs in his upper chest which resemble pacemakers. They send electrical impulses to the brain that prevents spasms from happening.

“The spasms are virtually gone now and it’s made talking a little easier,” said Stephenson, a Zeeland native who works as a manager at Martin Transportation Center in Byron Center.

His father, Michael Stephenson, said he’s so proud of his son’s accomplishments.

“Brian has been through a number of surgeries, but this last one that has taken place recently has worked wonders,” he said. “Brian’s doing great.”

Brian’s always liked running, but only could go two or three miles because he could breathe only through his nose.

One of his dreams has always been to run a marathon. Since his breathing problem was corrected by surgery, he thought he would give it a shot.

He’s been running on his own with a group from Gazelle Sports in Holland since January.

He ran the 15.5 mile Fifth Third River Bank Run in Grand Rapids in May with a time of 1 hour, 56 minutes. He’s also run three 5 and 10 kilometer races, which are 3.1 and 6.2 miles.

“I cried my eyes out at the end of the River Bank Run,” said Brian’s wife, Robyn. “I’m so proud of him.”

The Stephenson’s have two children, Ellie 2, and Amber 8 months.

“The children were a motivation for him to have the surgery, ” Robyn said. “Brian has always been a good dad, but he wanted to be a better dad. Now he’s able to read bedtime stories to Ellie.”

Stephenson has impressed his running mates at Gazelle Sports. About a dozen runners from the group are training for the Chicago Marathon.

“He doesn’t have a strong running background but he’s running with the first group,” said Sarah Vroegindewey, 25 of Holland, who like Brian, will be running her first marathon October 9 in Chicago. “He usually does more than what he’s asked to do. He’s strong mentally and physically. He’s just incredible.”

My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews