Curled, clenched toes or a painful cramped foot are telltale signs of dystonia. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). Dystonia is a common early symptom of young-onset Parkinson’s, but it can appear during any stage of Parkinson’s.
What is Dystonia?
Dystonia often starts when you try to perform an action with the affected body part. For example, if you have dystonia of the foot, you may be fine when seated, but if you start to walk, you may develop toe curling or foot inversion (turning in of the foot or ankle). Some dystonia happens unrelated to an action or movement.
People with PD often experience a painful dystonia on the side of their body with more Parkinson’s symptoms. This usually occurs first thing in the morning, when dopamine levels are at their lowest as nighttime medications wear off. This painful cramp usually goes away after the first daily dose of Parkinson’s medications.
Less commonly, dystonia can affect other body parts and come and go throughout the day, not relating to timing of medication at all. It can cause forceful twisting movements that, for example, can pull the head to the side or toward the chest.
Although dystonia can be a Parkinson’s symptom, people can experience dystonia without PD. Dystonia movements are different from dyskinesia (flowing, writhing movements that tend not to be painful).
Parts of the Body Affected by Dystonia
- Arms, hands, legs and feet: Involuntary movements, spasms or twisting and "curling"
- Neck: May twist uncomfortably, causing the head to be pulled down or to the side. This is called cervical dystonia or spasmodic torticollis
- Muscles around the eyes: May squeeze involuntarily, leading to a person to blink too much or to have difficulty opening the eyes. This is also called blepharospasm
- Vocal cords and swallowing muscles: May cause a person's voice to sound softened, hoarse or breathy
- Jaw: May open or close forcefully or there may be grimacing of the face
- Abdominal wall: May cause sustained contractions and involuntary, writhing movements of the abdominal wall or close forcefully, or there may be grimacing of the face.
It can be helpful to keep track of when dystonia occurs to figure out if there is a relationship between the onset of dystonia and the timing of your medication. Your doctor may ask you the below questions to see if there is a pattern:
- Do you have dystonia symptoms when levodopa (Sinemet) is at its peak effect (“on” period)?
- Do symptoms happen before the first dose in the morning or when medication is wearing off?
With your physician’s guidance, adjusting the dose or frequency of medication may help relieve dystonia. For example, if you have morning dystonia, which occurs before your first dose of levodopa kicks in, your doctor may add a bedtime dose of controlled-release carbidopa-levodopa or a long-acting dopamine agonist.
Physical and occupational therapy
It may be difficult to exercise when you are in pain. However, if you are in pain while moving and suddenly stop, the pain can get worse. A physical or occupational therapist can recommend exercises or techniques to target the source of your pain and to stretch and strengthen the body parts most affected by dystonia.
Botulinum Toxin Injections
If various therapies fail and your dystonia is not helped by altering medication timing, you and your healthcare provider may consider Botulinum toxin: (BOTOX®) injections. Botulinum toxin weakens muscles, which helps calm the overactivity caused by dystonia. By targeting the overactive muscles, your physician can decrease the discomfort and pain caused by dystonia. It can take several injections to work well and it may not always be effective. When it does work, the benefit can last for several months before it wears off and reinjection is necessary.
Deep brain stimulation (DBS)
In some cases DBS may help dystonia in Parkinson’s. DBS is a standard treatment for specific types of dystonia that are not associated with PD. Its role as a treatment for dystonia in Parkinson’s is being researched. For dystonia, the electrical leads can be placed in the same brain regions used in Parkinson’s.
Tips for Living with Dystonia
- Learn about dystonia and treatment options with our book Managing Parkinson’s Mid-Stride.
- Work with your doctor to find the best treatment for you.
- Meet with a physical and/or occupational therapist to identify strategies to strengthen and stretch the impacted area.
- Pursue activities you enjoy and pace yourself during social, physical and creative activities. Consider calming activities such as meditation, yoga or Tai Chi.
- Connect with others who are living with Parkinson’s and dystonia through online groups or support groups or through our online forum, PDConversations.org.