Kara Goucher is a former USA Olympic distance runner (2008 and 2012), and one of the most celebrated and impressive distance runners of her generation. She was diagnosed with runner’s dystonia in 2021 and made her diagnosis public in 2022. Since then, she has talked in numerous interviews and her own social media accounts about her experience. For many reasons unrelated to her diagnosis overlapping with my clinical interests, she is someone I deeply admire. And, despite her specific background, someone whose story I have found instructive for people with all types of dystonia. 

As she says of the early days after symptom onset where she was completely unable to run: 

“It was bad. I was struggling to walk into the grocery store.” 

She spoke at the time about being told she might not run again and how she felt as though “it was like you told me I was dead”. And in a sense, there is a loss that occurred - the passing of a previously imagined future of personal best run times, Boston marathon competitions, walking, running, living without any interference from dystonia. Her reality now seemed dictated by her symptoms, rather than her desires or dreams, which she has acknowledged took an emotional and physical toll. 

Fast forward to 2023 - there was a transformation occurring. As she says, “I feel completely stable walking now all the time…with running, it kind of ebbs and flows. This fall, I had an incredible month in September, I felt so great. I was running a lot, and then I must have pushed too much, and my body really pushed back. And so then I lost a month of running. I’m still figuring out what that balance is.” 

How did she get here? In following her story, I see a journey of progress, but also mindset, and commitment. The commitment she demonstrates requires a belief in something of a paradox: that you have control of your recovery with dystonia even though you had no control over the onset. 

Most people with dystonia understand the challenge this presents. Commitment to recovery needs to be strong enough to sustain during long stretches of exacerbated symptoms. And even harder - when things are going well - only to lapse into an unexpected flare. 

Patients I work with often go through a process of bargaining and acceptance. There is a turning point where an unspoken question arises: how do I choose the arduous process of recovery when there is no guarantee of how much, or how soon? This requires first believing that some recovery actually is a better outcome than the present state, and worth the effort. Acceptance is a prerequisite to action. The first voluntary step of recovery is choosing belief in yourself, trust in the idea that happiness can exist in a form that is different than what you had previously imagined. Believe, trust, recover - these are active verbs. 

Like anything else in dystonia, this is not instantaneous - but it is possible. Kara demonstrates this outlook in a 2023 interview saying: 

“I’m in a pretty good place where I’m running most days…If I really keep the mileage low, and don’t push it on days I’m tired, I’ve gotten into this rhythm of like five miles is my sweet spot. And I’ll take it. It’s better than nothing”. 

As a therapist, it’s my job and goal to help people find that belief and action in themselves.

To help - there are two questions I have begun asking the patients I work with: 

1. What are all the things that make you happy that dystonia does not affect?
2. Imagine what might it look like to be 50% of the way from where you are to where you used to be prior to dystonia? 

And the followup:

What’s the first step between here and there that is realistic for you to take? 

My intent with these questions is to flip the perception in their mind of control, from dystonia to them. I want them to consider how much joy in their life dystonia can not touch, and how they can use their inherent strength and determination to reach their goals. If recovery seems like an insurmountable climb, how about after you take the first step up the hill? What might it look like after 20 steps? Dystonia cannot take away your ability to choose to start up that path, or to pick yourself up after sliding back down.

In September 2024, after three years with runner’s dystonia, Kara Goucher posted on Instagram about her first trail run since being diagnosed. In summarizing the unpredictable and miraculous experience of recovery with dystonia, I think Kara put it perfectly: 

“It was scary, I tripped a lot and I don’t plan on doing it again soon. But it was also empowering. Baby steps.” 

This trail run was a remarkable accomplishment by a remarkable athlete. Yet, her athleticism is not the primary reason she got to where she was that day, but rather her mindset. You don’t have to be an Olympian to do what she has done. Your life with dystonia might not be what you had always hoped for, but who knows - maybe it will. It’s your journey, and your choice, to find out. Baby steps. 

If you are interested in learning more about Re+active’s approach to dystonia recovery, and how you can make positive changes - we’re here to help. 

• Sign up for our dystonia freebie: a free guide for people with dystonia
• apply for a program on our website
• become a dystonia education class member 
• and share this article with anyone you know with dystonia  

Dr. Lincoln Beal, PT, DPT, NCS 

Physical Therapist 

Dystonia Program Director 

re+active Therapy and Wellness 

References: 

1. Pham, Bach. “Kara Goucher on Living with Dystonia, the Nike Oregon Project and Protecting Female Athletes | DOR Podcast 184.” Doctorsofrunning.com, 31 Mar. 2024, www.doctorsofrunning.com/2024/03/kara-goucher-on-living-with-dystonia.html. Accessed 1 May 2025.
2. Soong, Kelyn. “Olympic Runner Kara Goucher’s Lessons on Resilience.” The Washington Post, 24 Mar. 2023, www.washingtonpost.com/wellness/2023/03/24/kara-goucher-running-resilience-training/Accessed 1 May 2025.