A few months ago, I was working with a patient with runner’s dystonia. We had worked together in a four week intensive program and since had scheduled check-ins every other month. She was doing well - but over the past month, potentially due to a combination of illness, family obligations, and work-related factors - had experienced a flare in symptoms. Prior to this she had steadily built up to walking a mile without symptoms, running about a mile and a half without symptoms. But recently - everything was harder. She was feeling frustrated, worried that this change was her new normal, that she was regressing, that her progress had been lost. I was trying to provide reassurance when she asked me a question - “Why does this happen? How can my brain just forget how to do these things some days? It doesn’t just forget how to ride a bike”. My initial reaction was to say that what she is saying is true, but that dystonia is not like “riding a bike”. 

After she left - her question stayed with me - not because I thought my answer was wrong exactly, but because I knew my response was lacking something crucial - the WHY. Why is dystonia not like riding a bike? If it’s not like riding a bike - what is it like? 

Everyone with dystonia can relate to the truth that some days symptoms may be virtually absent; the next day - whether it’s due to stress, fatigue, social pressure, overstimulation, or other more nebulous reasons, symptoms are severe. Some days the exercises, sensory strategies, cues, or nervous system regulation techniques work like a charm, and others - it seems hopeless. Even in the process of recovery - as the overall trend line bends upwards - this fluctuation exists. Why? 

First - the answer to why dystonia is not like riding a bike comes down to complexity. Riding a bike, for the nervous system, is a simple process. A bit of coordination here, a little motor control there, and boom - you can do it. Unlike dystonia, once you know how to ride a bike well, you don’t have days where you suddenly can’t even get your foot on the pedal without falling over, or find it impossible to steer the bike (thankfully). But as we just discussed, this exact type of fluctuation does happen in dystonia. 

And now we come to golf. Compared to riding a bike - golf is an infinitely more complex motor procedure. We have to consider the stance, setup, grip on the club, balance, accuracy in delivering club to ball in the precise location and with the precise force required. This is not even taking into account weather conditions, surface conditions, angle of the ground, etc. The golf swing is an intricate dance of muscle, motor planning, sequencing, proprioception, and force tuning culminating in an output where even small discrepancies can lead to large misses. Compared to the bike, golf is much more prone to the types of fluctuations in performance seen in dystonia. Some days, you just don’t have it. Drives get shanked into the trees, putts fall short. Hello golf ball, hello pond. There’s no escaping it - even Scottie Scheffler or Tiger Woods have bad days. This complexity is what dystonia adds to movements that for patients were previously, as simple as riding a bike. Dystonia, and the brain changes that go along with it, adds task complexity to usual movements, in my patients case - walking and running. 

But ask yourself - would it make sense for Scottie or Tiger to think the way that my patient was at the time on their bad days - “Well this is my new normal. I must be regressing. I’ve forgotten how to play”? Ask an experienced golfer on a bad day if they are better now than when they started playing. They wouldn’t stop to consider the alternative - of course they are. They can look at the big picture to see that on average, they have more good days than bad days. From this perspective, we can begin to see a path to optimism in recovery. 

Individuals with dystonia often struggle to view their recovery as similar to the process of golf performance, in part because unlike golf - which is always hard, the movements they struggle with were not hard until dystonia showed up. Previously basic tasks are now complicated coordination and movement challenges. This change is a physical and mental hurdle that creates an issue of trust with their own bodies and nervous systems. To face this challenge - a mindset shift from thinking of re-training normal movements affected by dystonia - from like riding a bike to like golf - provides the foundation for recovery and optimism. The work you put in to train your brain, body, and nervous system does not disappear during even long stretches of increased symptoms. Your bad days don’t define your potential. Your nervous system has not “forgotten” how to walk, or run, or do any other activity, just because some times it is harder. 

In addition to providing perspective, this analogy clarifies the process and expectations of dystonia recovery. Dystonia is a condition we don’t generally consider to have a cure. Like golf - the goal is continuous improvement, but seeking perfection is a recipe for disappointment. And, it doesn’t really make sense. No one has ever achieved “perfect” golf performance. With hard work, the help of a knowledgeable team, and a healthy confidence in themselves and the process, people often achieve progress they never thought possible. And that’s something to celebrate. 

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. Torres-Russotto D, Perlmutter JS. Task-specific dystonias: a review. Ann N Y Acad Sci. 2008;1142:179-199. doi:10.1196/annals.1444.012
2. Byl NN, Nagajaran S, McKenzie AL. Effect of sensory discrimination training on structure and function in patients with focal hand dystonia: a case series. Arch Phys Med Rehabil. 2003;84(10):1505-1514. doi:10.1016/s0003-9993(03)00276-4