When it comes to cerebral palsy (CP), there is a wealth of information and knowledge dedicated to symptoms like spasticity and ataxia. However, little is understood about dystonia – perhaps because it is a rarer side effect of CP.
Even though I have cerebral palsy, I struggle to find relevant information on this topic. I reached out to our telehealth nurse, Amy, who gives a terrific rundown on the subject, including what dystonia is and tricks to manage its side effects.
What is dystonia?
Dystonia is characterised by involuntary muscle contractions or ‘extra’ movements; these contractions cause repetitive or slow twisting movements or abnormal postures beyond the person’s control. It can also present as hypertonia (stiff or tight muscles). Dystonia can come with a lot of discomfort and even pain, and it can cause sleep disturbances and impact balance and mobility.
Dystonia impacts muscle relaxation and can result in overflow movements which are the association of involuntary movement with conscious activity, which spreads to surrounding or distant muscles. Dystonia may only impact one muscle group, such as the arms or legs, or it can affect the entire body. Dystonia and emotions
As someone with CP, I have often noticed the peculiar relationship between my emotions and body. Things such as stress or anxiety could always exacerbate my muscle spasticity. As it turns out, the same can be said of dystonia.
“Dystonia might worsen when the person is upset or emotional, tired, worried or excited. For some people, it goes away when resting, while for others, it might not,” says Amy. She adds, “dystonia not only occurs in Dyskinetic CP, it can commonly occur in Spastic CP and Mixed CP also.” Treatments and therapies
Like everything else in the world of CP, dystonia can be managed with several therapeutic interventions. Any potential treatments should be discussed with your doctor or therapist, such as a Physiotherapist or Occupational therapist. Medications
Oral baclofen is generally the first-line medication for the treatment of dystonia. Baclofen relaxes muscles which can help to reduce dystonia. For some people, it can result in hypotonia (low muscle tone), which can also cause disturbances to balance and mobility. Other medications such as Trihexyphenidyl, Clonidine, or Diazepam (Valium) may also be trailed.
Using these medications should be discussed carefully with your physician as they can cause long-term side effects, tolerance, and loss of efficacy over time. Therapeutic interventions
You can also work with your physiotherapist or occupational therapist to develop exercise routines to reduce dystonia and get a better range of movement. Seating can be optimised to ensure adequate support. This can lessen involuntary movements associated with dystonia when seated and optimise the functional activity in the arms and hands. Sensory treatment
A range of sensory tricks has been used to reduce dystonia's effects. These are simple exercises that a person can perform and be developed with an OT; they include:
Resting the back of the head against a wall
Tucking the hand under the chin or touching the face with a hand or finger
Sensory items such as fidgets
Botox injections
Botox injections can be used for both dystonia and spasticity, significantly where the dystonia impacts one group of muscles, such as the arms or legs. This treatment involves a series of injections into the affected muscles leading to reduced stiffness and pain. The effect of the injections lasts between three and six months and can be repeated if effective. Intrathecal baclofen
A baclofen pump may be considered where dystonia has severe and lasting impacts. If this is an avenue you are considering, discuss the pros and cons with your treating doctor. Splints
Hard or soft splints or orthosis can be used to help manage dystonia. Second skin body orthotics or Lycra garments such as Jettproof garments can be helpful. Final thoughts
The day-to-day experience of having a disability often makes me feel like my world revolves around adaptations. I’m constantly adapting to either the symptoms of my CP or the physical barriers around me that don’t accommodate the fact that I have CP.
It seems that many of the techniques listed are like those recommended for spasticity. While I don’t have dystonia myself, I was curious to see if any of these tricks would help me control my muscle spasms.
The other night, I went to a music gig with some friends, the venue only offered tall bar stools – something I struggle with. So, I chose the bar stool closest to the wall and used it as lumbar support – I was amazed at how effective this was in dealing with my spasticity and it made the evening much more enjoyable. It would be worth exploring how these techniques work for you.
Want to know more about dystonia? Call Amy on 03 9478 1001 or email cpsn@cpsn.org.au.