Every once in a while there will be a new research paper or article about dystonia that allows us to consider the diagnosis from a different perspective. For a condition with as much complexity and uncertainty as dystonia - this is always valuable, but especially so when it comes from someone as consequential as Dr. Mark Hallett. As the director of the Human Motor Control Division at the National Institute of Health, Dr. Hallett has been a pioneering researcher into movement disorders, including dystonia. I had the pleasure of hearing him speak at the 2022 FND Society Conference, and the 2022 Aspen Movement Disorders Society Conference. At re+active, he is somewhat of a hero. And, in June of this year he published a perspective article titled “Dystonia: The Ability to Forget”1 in the Parkinsonism & Related Disorders which provides a synthesis of research into the field of memory and motor learning in dystonia - and the ways in which these processes are impaired or altered in the brain in dystonia. We know that plasticity - especially in regards to aberrantly learning the dystonic movement pattern is a driver of the diagnosis, but Dr. Hallett also asks - is forgetting also impaired in dystonia? He makes many interesting points and the overall message is important - and there are also parts of it that I don’t entirely agree with. So, the goal of this post is to discuss those key points, explain what this means, and most importantly, what can we do with this information? Knowledge is power, and I believe this article and discussion can be another step towards empowering you to take control over your dystonia symptoms. 

Key Points: 

• Among the network changes that occur in dystonia - there appears to be differences in potentiation (strengthening) of abnormal connections and depression (weakening) of the abnormal connections. 
• Dr. Hallett cites several studies that describe this important distinction. In the brains of individuals with dystonia - not only is there an enhancement of learning the abnormal (dystonic) movement over time, there is an impairment of the ability to “de-potentiate” these networks. This results in a much greater degree of  difficulty with “forgetting” the dystonic pattern. 
• Notably - there is a difference in this plasticity pattern in functional dystonia - where there is not (as far as we know) this abnormal plasticity. This is likely why it is much more common for individuals with functional dystonia to experience rapid and complete reversal of their dystonia symptoms compared to other types. 

My Thoughts: 

Dr. Hallett presents an interesting case and makes many points I agree with but I have some notes - as I think the conclusion is overly broad. In describing differences in studies vs focal hand dystonia and cervical dystonia he writes that “some of the abnormal plasticity may be specific to the type of dystonia”. However he then states that 1) training with normal movements is generally not helpful (not true) and 2) DBS can be helpful (can be - but only for very select subtypes has this been shown and for some the opposite has been shown) - these are just not statements that can be applied with a broad brush. Not that Dr. Hallett needs me to defend him, but I will briefly - this is a brief perspective piece and can’t quite fit all of the nuance that he might include in his discussion were this a longer article. And, the main point about what we have learned about plasticity is true and important. But I want to also make clear to you all that in fact we have numerous studies showing that not only can normal movement be reinforced and learned and improved upon, they can be maintained long-term. And for the types of dystonias we have less research on, we have plenty of anecdotal and patient example evidence of individuals sustaining progress long-term including cervical dystonia, runner’s dystonia, functional dystonias, and other focal dystonias. Consider this long-term follow-up study2 published this year - which followed 28 individuals with focal hand dystonia undergoing a sensory and motor home rehabilitation program at 1-year, and 7-years to determine the extent of their dystonia symptoms. Not only were the changes these participants managed significant at 1 year follow-up - they were actually greater at 7-year follow-up, with higher reported musical playing ability and lower disability related to dystonia symptoms. As the authors state that “with sensory-motor rehabilitation therapy…changes may take time but benefits can be sustained over the long-term”. 

So what is the takeaway? 

While there seem to be changes within the brain that make forgetting more challenging - a struggle all with dystonia can relate to - as these studies, and the people we work with every day demonstrate - it is not impossible. With an individualized, long-term approach focused on sensory and motor re-training, nervous system regulation, psychological and lifestyle changes - unlearning dystonic patterns and remembering normal movement is possible. Don’t forget it. 

Did you like this post? Do you want more content to help you get the most out of your dystonia recovery, and start making progress? Join our Dystonia Class! A weekly class for all types of dystonia with practical tips and strategies to understand your symptoms and take control of your recovery - linked below!!! 

• Become a Dystonia Class Member Here! 
• Also: sign up for our dystonia freebie: a free guide for people with dystonia
• Or if you’re ready to commit to treatment: apply for a program on our website
• and share this article with anyone you know with dystonia! 

Dr. Lincoln Beal, PT, DPT, NCS 

Physical Therapist 

Board-certified Neurologic Clinical Specialist 

Dystonia Program Director 

re+active Therapy and Wellness 

[email protected] 

References: 

1. Hallett M. Dystonia: The ability to forget. Parkinsonism Relat Disord. 2025;137:107929. doi:10.1016/j.parkreldis.2025.107929
2. Butler K, Sadnicka A, Edwards MJ, Freeman J. Long-term (seven-year) follow-up of sensory-motor rehabilitation therapy for task-specific focal hand dystonia. J Hand Ther. Published online May 12, 2025. doi:10.1016/j.jht.2025.02.008