A Surprise Diagnosis: Mo Gerhardt's Story

Article Highlights:
  • Matthew Gerhardt of Bath, Mich., thought he had Duchenne or Becker dystrophy until he was in his late 20s, when he and his family learned he has LGMD2D.
  • The new diagnosis was not unwelcome, but Gerhardt and his parents had to make some adjustments in their thinking.
  • A love for sports has dominated Gerhardt's life, and he now works part time as a radio sports commentator, as well as holding a full-time job as a student adviser at his alma mater, Michigan State University.
  • This article is part of the In Focus: Limb-Girdle Muscular Dystrophy package, which ran in the October-December 2013 issue of Quest; other articles in this series are listed at the bottom of the page.
by Margaret Wahl on October 3, 2013 - 9:05am

Quest Vol. 20, No. 4
In kindergarten, Mo Gerhardt played tee ball and soccer, and while his hand-eye coordination was excellent, his strength wasn’t.

Matthew (“Mo”) Gerhardt of Bath, Mich., will be 36 years old this fall. He has a master’s degree from Michigan State University, where he has a full-time job as a student adviser and works part time as a radio commentator for the women’s basketball program. He owns a home and a minivan, and hopes to have a family of his own. He also has limb-girdle muscular dystrophy (LGMD), although that’s a fairly recent diagnosis. 

“When I was in kindergarten, I was in tee ball and soccer,” Gerhardt recalls. “I was the slowest person on the team and couldn’t hit the ball as far as others. My hand-eye coordination was all there, but the physical strength wasn’t there. I could run, but I was the slowest one in my class. I can remember in gym class doing laps around the gym, and I was always the last one to make it.”

At the time, the family lived in a two-story house in Traverse City, Mich. “Going up the stairs was difficult for me,” Gerhardt says. “I felt like I couldn’t alternate my feet. I had to go one step at a time.”

In the summer of 1985, when Mo was 7, the family vacationed with relatives who lived in New Mexico. There, an aunt who was a physical therapist told Gerhardt’s parents that she suspected the boy had muscular dystrophy. 

The first diagnosis

Not much was known about muscular dystrophy in Traverse City, the small town in the northern part of the state where the Gerhardts lived, so the family traveled to Mott Children’s Hospital, associated with the University of Michigan in Ann Arbor. “They did a muscle biopsy there, and from that, I got the diagnosis of Duchenne muscular dystrophy,” he says.

In 1985, Mo’s parents were told their son probably wouldn’t survive past his early 20s. At that time, prior to genetic testing, Duchenne muscular dystrophy (DMD) was poorly understood, and other forms of muscular dystrophy were even less well known.

“I definitely remember as a little kid knowing about my diagnosis and knowing about my life expectancy, but I don’t remember one specific sit-down talk when it was disclosed to me,” Gerhardt says. “I do remember that my parents would want to talk to doctors alone, and when they would come out, they had been crying.” 

The Ann Arbor years: A tough period

In Ann Arbor, doctors placed Mo on what he calls a “mega-dose” of prednisone, a corticosteroid drug now used to treat DMD but not known to provide benefit for other forms of muscular dystrophy. It also has numerous side effects, such as considerable weight gain and bone loss, especially when given at high doses.

“I nearly doubled my body weight within a month,” Gerhardt recalls. “It was a very tough period, not because of the physical changes of muscular dystrophy, but because I looked different. That was one of the main reasons we started to look elsewhere [for medical care].”

The family decided to visit what was known, then as now, to be a major center of neuromuscular disease research and care — Children’s Hospital in Columbus, Ohio, associated with Ohio State University School of Medicine. (In 2007, Children’s was renamed Nationwide Children’s Hospital. It continues to be the pediatric teaching hospital for Ohio State University.) There, they met MDA clinic physician Jerry Mendell, a neurologist who now co-directs the MDA clinic at his institution and is a longtime MDA research grantee. 

A new doctor, a new diagnosis

“Once we got to Columbus, we just fell in love with the services that were being provided to us there,” Gerhardt says. “It was an unbelievable sort of connection. I still see Dr. Mendell to this day.”

Mendell was interested in the possible benefits of prednisone and a similar drug, deflazacort, on DMD, the diagnosis Gerhardt still carried. In 1988, when he was in fifth grade, Gerhardt became part of a study of prednisone and deflazacort at Ohio State. He didn’t know it at the time, but he was placed on a low dose of prednisone. (The study was “blinded,” so no one knew the drug or the dose during the trial.)

After the trial, when it was found that a temporary gain in muscle strength corresponded to the period when he was on the low dose of prednisone, Gerhardt’s doctors offered to continue the drug. “I’ve been on some dose of prednisone for the majority of my life,” he says, “and I’m currently still on 8 milligrams a day.”

Prednisone, which provides a synthetic substance that looks to the body like the cortisol the adrenal glands produce, sometimes causes a shutdown of the adrenals, making a very low dose of the drug necessary for an indeterminate period of time. “Your body becomes dependent upon it,” Gerhardt says. “They have to be careful weaning anybody from the drug after long usage such as I’ve had.”

It wasn’t clear what, if any, effect prednisone was having, but something about Mo was different from the average DMD patient. Eventually, the doctors and physical therapists at Ohio State began to recognize that Gerhardt didn’t have typical DMD. 

“Dr. Mendell tended to believe that maybe it was more of a Becker muscular dystrophy, because my progression wasn’t as drastic,” he recalls. (Becker MD, which is a less severe MD than Duchenne, is caused by a partial deficiency of the dystrophin muscle protein, while DMD is caused by its complete absence.)

“As I was getting older and progressing through junior high and high school, they started thinking it was Becker instead of Duchenne.”

Gerhardt continued to walk through the end of his junior year in high school (when a broken leg ended his walking years), and his cardiac and respiratory function remained normal — none of which is typical of DMD. “Dr. Mendell has always been amazed by my hands. My physical grip has tremendous strength. And my fine motor skills are great. All those strengths and skills are still there,” he says.

In 2005, Gerhardt was in his late 20s and, with the vastly expanded availability of DNA testing, his best friend recommended he find out exactly what DMD- or BMD-causing genetic mutation he had. For one thing, that kind of diagnosis was becoming necessary to take part in various clinical trials.

“When my DNA was sent out, I was told it was a pretty quick process, but we kept waiting and waiting to get an answer,” Gerhardt remembers. “We didn’t know why. Finally, Dr. Flanigan [Kevin Flanigan, who is now co-director of the Nationwide Children’s clinic with Jerry Mendell] gave me a call and said, ‘Mo, I don’t know exactly how to tell you this, but we don’t think you have Duchenne dystrophy. If you don’t mind, we’re going to send your sample out to some other labs here, because we’ve got a feeling that it’s a different form of muscular dystrophy. And would you mind, or would your parents mind, if we did some more testing on them?” 

Gerhardt drives a van with hand controls.
Mo Gerhardt (front, right) as the radio color commentator at a 2012 women’s basketball game at Michigan State University. With him is Rick Berkey, the play-by-play announcer.


It would be a year before they got their answer: Mo Gerhardt had never actually had DMD. He had type 2D limb-girdle muscular dystrophy (LGMD2D), a type of MD that can look somewhat like Duchenne but is due to a deficiency of a muscle protein known as alpha-sarcoglycan, located near the dystrophin protein in muscle fibers. 

LGMD2D has a highly variable course, depending mainly on how much of the alpha-sarcoglycan muscle cells make. Weakness is mostly in the proximal muscles (those close to the center of the body, such as those in the shoulders, hips, upper arms and thighs) and may not make itself known until late childhood or even early adolescence. Heart disease is rare.

There are some isolated reports of benefit from prednisone in LGMD2D, but it isn’t routinely prescribed, and no systematic trials have been conducted.

“Along with that also came the news that both my parents were carriers,” Gerhardt says. “For me, it didn’t change anything, because I had never really lived by a diagnosis. But all of a sudden, now my parents were dealing with a different emotion. It was no longer a random mutation [as his DMD had been proposed to be], but both of them were carriers. 

“They had to get over the guilt of sort of blaming themselves.”

For Gerhardt, an immediate concern was whether Mendell could continue to be his doctor. “My first words were about whether I was going to be able to continue seeing Dr. Mendell. It was one of the first things that came to my mind. I was pretty nervous that that relationship would no longer exist.” 

Fortunately, he quickly learned that Mendell and the clinic at Ohio State/Nationwide was just as interested in LGMD as in DMD. “That was a huge relief,” Gerhardt says.

For his family and friends, the changed diagnosis was reassuring. “They were thrilled,” Gerhardt says. But, on his part, he says, feelings were strangely mixed.

“It wasn’t as if it was a letdown when the diagnosis was changed,” he says, “but to be honest, I’m a very competitive person, and I’m very structured, and I look at everything in some ways as a battle. I saw the Duchenne diagnosis as a battle that I was winning. Now it seemed like I had a new battle.”

Living away from home

After high school — when he was still assuming he had DMD or BMD — Mo Gerhardt went to Michigan State University, where he earned a bachelor’s degree in business administration and a master’s in athletic administration. 

“Both my parents were alums from Michigan State, so I grew up a Spartan,” he says, referring to the name of MSU’s sports teams. “My dream was to be able to go to Michigan State. Fortunately for me, it’s one of the top universities in the country for disability services and disability rights. It was a win-win situation for me.”

That’s not to say everything was easy, however. A fall Gerhardt had sustained in May of his junior year in high school fractured his femur (the long bone of the thigh) and ended his walking years. “I was never able to take a step on my own again,” he says. “I’ve used a power wheelchair ever since that accident.”

As his high school years ended, Gerhardt could still lift his arms high enough to brush and wash his own hair, but his upper-arm muscles were losing strength. (Now, he can’t lift his hands or arms above his shoulders.)

So the immediate challenge in going away to college was finding someone to help him with his daily care needs. “This was the first time I was going to be living away from my parents,” he says, “but I was fortunate. In my first year, as a freshman, I had an aide who was from my hometown and wanted to go into medicine. He was able to help me take care of my needs that first year.”

Later, Gerhardt roomed with a friend from high school who became his caregiver. “He saw that the care I needed wasn’t anything overwhelming, so he helped me with my needs, and that became one of his part-time jobs. I was very fortunate that all that sort of came together and allowed me to live away from home.” 

A love of sports

Gerhardt has “always had a love for sports” and muscular dystrophy did nothing to change that. 

“Sports were huge. I played them up until it was no longer physically possible for me, but then I still found a way to be involved. I was a manager, or I kept score, or I ran the scoreboard. I was always finding ways to get involved with sports, which continued when I went to Michigan State.” In fact, he hoped to become a high school athletic director.

Starting in 2000, at age 23, Gerhardt found a new sport — power wheelchair hockey — and felt he had regained his competitive edge. (See PowerHockey: A league of their own.)

“I got to the point where I was really, really good in the sport, and I was traveling with an all-star team,” he says. But then disaster struck. 

His team competed in an international tournament in Calgary, Alberta, Canada, in 2006, and on the bus ride from the airport to the dorms, they were in an accident. Gerhardt broke both hips, ending his ability to transfer with minimal assistance from one surface to another. He’s needed a mechanical lift for transfers ever since the accident.

“Up to that point, I was at least able to do pivot transfers with someone holding on with a bear hug. I could still support myself. But now, since the bilateral fracture of my hips, I can’t do that.”

Being someone with a disability who wants to work in sports has been a challenge. 

“There are some battles where I still feel as if I’m trying to knock down barriers,” he says. “Even if it’s not necessarily going to work for me, if I can make it easier for somebody else down the road, I’ll keep trying to knock down those walls.

“One way that I’ve been able to be a part of athletics is through broadcast radio. I advocated for myself. I recorded a previous game and dubbed my own voice over it as if I was announcing the game, and I gave the recording to the owner of the Spartan Sports Radio Network. Through that, I was able to get my current position as a color commentator [providing background on the athletes and the game] for the Michigan State women’s basketball program. This fall is my fifth season.” 

Advising others

It turns out that Gerhardt’s original career goal of being a high school athletic director might have been difficult to achieve even without a physical disability.

“By the time I graduated from Michigan State in 2002, the economy in Michigan was starting to go into the tank. I went from being an undergrad and able to name my spot with a job, to having a master’s degree and not being able to find anything.

“I went for about three years where I was working part time at Michigan State in all kinds of different positions. In my last one, I was a part-time tutorial coordinator for student athletes on campus.” Then, in 2005, the Office of Supportive Services, which oversees a tutoring program for first-generation college students, low-income students and students with disabilities, offered him a full-time job.

“It wasn’t necessarily what I wanted to be doing, but I couldn’t be picky,” he says. “I needed to get a full-time job.” It turned out to be one at which Gerhardt excelled, and for which he ended up winning the Michigan State Outstanding Faculty/Staff award in 2006. 

In 2007, Gerhardt received MDA’s National Personal Achievement award, an honor representing outstanding achievement and community involvement. (See Go Spartan! Fight Spartan, Fight On!)

Since 2009 he’s been an adviser in the College of Natural Sciences at MSU. “I wear a few different hats in the department,” he says. “My biggest caseloads are my pre-med students. I also work with natural science no-preference students. They’re freshmen and sophomores who want to major in the sciences, but they don’t typically know where in the sciences they want to end up.”

Other goals

Gerhardt has a satisfying career now, but he has other dreams too. He lives alone, but he doesn’t necessarily want that to be permanent. “I own my house and live pretty independently. For 11 years, I lived with my service dog, Ted, but last fall, I had to make the tough decision to put him down,” he says. 

“I have a 2-year-old nephew who helped me through that loss. I love my nephew, and now that he’s able to walk, it’s so much fun interacting and playing with him. It warms my heart to see how comfortable he has become around my wheelchair. My sister-in-law is currently expecting again, so in December I’ll have my first niece! (And in August, Gerhardt acquired service dog Lavoi — a male black Labrador retriever-golden retriever mix.)

“Although I’m single, my dream is to one day be a daddy.”

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