Dystonia in Cerebral Palsy

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While CP has commonly been associated with movements affected by conditions such as spasticity, there is an increasing awareness that individuals with CP often experience some dystonia, even to the point that it may be present in the majority of people with CP. Dystonia is the primary form of tone in 15% of people with CP, but approximately 70 percent of people with CP also have some dystonia seen with other disorders of movement or muscle tone.


What Is Dystonia in Cerebral Palsy?

Dystonia is a movement disorder in people with CP that causes slow, uncontrolled, involuntary movements that emerge through triggers.

Common triggers for dystonia include:

  • Attempting voluntary movement
  • Performing a task that may be difficult for the individual
  • Feeling excited or feeling unwell
  • Having someone move your body.

Types of dystonia in CP

  1. Generalized dystonia: Dystonia is experienced throughout the body.
  2. Focal dystonia: Dystonia is limited to a certain part of the body.

Why do we need to know about dystonia in CP?

Knowing you have dystonia and knowing it as early as possible, is important for physicians and therapists to effectively identify the related symptoms that may be interfering with your daily activities and comfort. 

Determining whether someone has dystonia may also affect the medical team’s understanding and approach to addressing the person’s other CP related symptoms. You and/or your parent/caregiver can help by bringing up the possibility of dystonia with your medical team. With a proper screening and diagnosis you may shorten the time it takes for you or your loved one with CP to access the care and treatment that may help.

How does dystonia impact a person’s life?

  1. Dystonia can affect how the person moves and coordinates movement (including speech).
  2. Dystonia can interfere with positioning for sitting and lying.
  3. Dystonic postures and movement can be painful and interfere with daily activities.
  4. Dystonia can interfere with sleep.
  5. Dystonia can result in the person using high amounts of energy and may lead to problems with nutrition because the extra muscle movements cause the body to use more energy.
  6. Dystonic postures can create challenges with caregiving.
  7. Dystonia can impact wellbeing.

*Please note that the words dystonia and dystonic both refer to the same condition. Dystonia is the adjective used to describe the presence of dystonia.


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A pink water lily in full blossom floating in a pond with a reflection the trees and sky above

“I experience it more with deliberate movements that take concentration.”
–Anonymous, Adult with CP
“I notice it when I am stressed (in a time sensitive way or with excitement) a lot more than when I am not stressed.”
–Anonymous, Adult with CP
The average age at onset of dystonia is typically 3-4 months, but the average age of referral to a medical center that treats dystonia is 8 years. This delay means that many children with dystonia don’t receive a diagnosis or treatment for several years and many adults with CP may be unaware that they have it.


Continue to Dystonia Diagnosis
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