DULUTH — Kara and Adam Goucher dropped off their son, Colton, at school last fall in Boulder, Colorado, and drove home when Adam noticed something peculiar about the way Kara was walking.
Adam took out his cell phone and recorded it, and at the end of the video, Kara said something like, “What are you doing? Get on here,” oblivious to why he was recording it.
That is, until Kara saw the video, which quickly sent shockwaves through her entire family.
“I don’t know how to say it in a respectful way, but she sounded like a drunk student,” Kara’s older sister Kelly Grgas-Wheeler said. “She was angled, touching cars as she passed, and when she didn’t have the sidewalk to follow, she crossed the street diagonally.
“I felt sick watching this. Something was wrong with my sister, who is the epitome of health, so we were all really shocked. That was the turning point where everyone knew it wasn’t. not normal.
Kara Goucher, a two-time Olympic distance runner and pride of Duluth, has been diagnosed with runner’s dystonia, a neurological disorder that typically affects the muscles in one leg and can cause them to twitch involuntarily. The rare condition “scrambles the signals between the brain and the legs, leaving athletes shackled,” according to Runner’s World.
Goucher announced the diagnosis via social media last month. This announcement, while heartfelt, almost came across as a doomsday prophecy, as if it would never run again.
Goucher, 43, is now in a much better mood and will be on Monday’s Boston Marathon broadcast team as a distance running commentator for NBC.
Goucher takes medication for Parkinson’s disease, because Parkinson’s disease and dystonia are linked. It has helped her to walk, but running is an added challenge.
“I’m still learning what treatments work for me,” Goucher said. “I’ve had good days, and I’ve had really bad days, and I’m still figuring out what my new boundaries are. It’s been a very frustrating process, but I’m also realizing that I have to figure that out so I can keep running at a certain level instead of going too far where I can’t walk or run at all.
While Goucher was incredibly disappointed by her initial diagnosis of dystonia, even upset, for her family, it felt more like hallelujah.
“I know Kara was devastated by the running, but selfishly I was like, ‘You don’t have a life-threatening illness. You’re not gonna die from this,’” Grgas-Wheeler said “I didn’t think you might end up in a wheelchair again, you might not be able to run and it’s going to take away your favorite thing. I was just relieved that she was still there.
Goucher had known something was wrong for a while, saying she started treating the symptoms in December 2020. She said she had trouble standing while running, and in the spring of 2021 she was tested for multiple sclerosis but it was ruled out.
Adam and Kara Goucher now spend their summers in Duluth after buying property last year near Kara’s mother, Patty Wheeler, on Lake Fredenberg.
For Goucher, Duluth will always hold a special place.
“I love being there,” Goucher said. “It makes me happy, it makes me feel really peaceful, and my husband and son have fallen in love with Duluth as well, so we try very hard to get back there. I love Colorado so much, I love the community, but my home is Duluth for sure.
Last summer, Kara felt a little better. His family would notice small things, but nothing major. She ran with her older sister by the lake and always took a certain side. On bad days his balance would be thrown off balance, but nothing like this video, nothing as distorted and unbalanced as that. After seeing this, his family feared the worst.
Grgas-Wheeler, who works as an assistant soccer coach and in women’s hockey communications at Minnesota Duluth, hit her boiling point last fall. Once, she walked past the office of Karen Stromme, UMD’s senior associate athletic director, and Stromme asked her how it was going. Grgas-Wheeler told him the whole story. Stromme was stunned. It was the first time Grgas-Wheeler had spoken about it with anyone outside of the family.
“At that time they were actually using the word ALS (amyotrophic lateral sclerosis), which is deadly,” Grgas-Wheeler said. “They couldn’t rule it out, and it was really scary. It was sickening. It was really, really hard on my mum, and your head is going all over the place. Kara has a son (aged 11) and you ask what happens next, where do you stand I remember being on the football bus, taking trips and trying not to cry You tried not to worry, because we didn’t know, but you had all this time to think about it. It was like a nightmare… how could Kara have this?
Well, it turned out that it was definitely not so badand even with the diagnosis of runner’s dystonia, Goucher hasn’t yet had to give up running.
One neurologist told her she should leave running behind and take up swimming or cycling, which she called “devastating” and really upset her, but another told her that the not everyone’s case was the same.
A self-described “running addict,” Goucher is a runner at heart. That’s all she knows and all she wants to do.
“Now that I know I can keep running, I’m just learning what my limits are,” she said.
Goucher called running outside “her happy place,” but she can only run outside a few times a week. If she runs outside for several days in a row, she may become exhausted. While some runners with dystonia do better outdoors, Goucher is more comfortable on a treadmill, knowing she can trust the consistency of it. When she runs outside, a gravel path is best, but it can’t be a really difficult path, because then she will catch her foot and fall.
Goucher admitted his diagnosis is confusing, combining mental and physical aspects, but it is very real. She was asked how many kilometers she traveled per week.
“It’s tough,” Goucher said. “It depends on whether I’m having a good or bad week and how much I rest between races. Some weeks I run about 20 miles and a few weeks ago I had a 50 mile week. The tracks outside are what tires me the most, but they are also my favorite. I wish I could run more outdoors, but I’m still learning what this relationship is, I’m still learning what my limits are.
Goucher has run three Boston Marathons and set a personal best there in 2011 with a time of 2 hours, 24 minutes, 52 seconds, finishing fifth. She returned two years later and finished sixth in 2:28:11 in a race marred by two explosions near the finish line, killing three spectators and injuring more than 180 others in an act of terrorism.
It was a tragic day for anyone who longs for peace on earth, and especially for Goucher, who considers running and these landmark events to be sacred. She is always moved to talk about it.
“It was a very difficult thing to go through and it had a pretty big impact on my life. It affected my son as well. He ended up having to go to therapy,” Goucher said. what really matters to me and what really matters.
“It’s something that’s still there. My innocence around the race was kind of lost, and it was sad, really sad. It will always be a kind of heavy memory. It really changed every marathon from there.
Despite this, Goucher said the Boston Marathon was his favorite, with its unmatched history. She also said it reminded her of Grandma’s marathon in Duluth, with the way it runs through neighborhoods and is embraced by the community.
Goucher was looking forward to returning this weekend as a commentator for NBC. It seems like a perfect fit, keeping her in the game close to the excitement of high-level competition, while allowing her to inform and entertain viewers with her expertise and affable personality.
After Boston, Goucher will receive a new treatment of injections in his dystonic leg. She is optimistic, it will give her a little more freedom to run outside. You can’t blame him for having hope.
Grgas-Wheeler started running again partly so she could spend more time with her younger sister. Grgas-Wheeler said running with Kara last summer helped her realize how incredibly difficult it would be for her to live without her. For more than 30 years, running has been all Goucher knows. She ran her first race when she was just six years old with her grandfather in Hermantown. She then played in Duluth East and was a three-time NCAA champion at the University of Colorado.
While Grgas-Wheeler said she had days last summer where she just wasn’t into it, Kara was never do not ready to run. She was like, “Ah, let’s go for a light five-mile run.” Riiiiiiight. A light five mile run. Grgas-Wheeler said she had to go so far as to “encourage” Goucher not to run on certain days.
For Goucher, running is his solution.
“It’s his therapy,” Grgas-Wheeler said. “It might sound corny, but running regenerates her soul, it’s who she is. There’s something about it that frees her to deal with the rest of her world. She’s had a tough year, it happened a lot of things, but racing is what balances her out. She needs that, and I think that’s hard to understand unless you know how woven into the fabric of who she is.