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). For example, dystonia is a common early symptom of young-onset Parkinson’s.
Dystonia often starts when you try to perform an action with the involved 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). Dystonia can also be present when you are not using the involved body part; in the example above, you could have toe curling even when sitting.
People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. 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 draw a person’s arm behind their back, or pull the head to the side or toward the chest. These movements are different from the flowing, writhing movements of dyskinesia, which tend not to be painful.
Although people with PD sometimes have dystonia, it also is its own movement disorder. People can have dystonia without having Parkinson’s. Whether dystonia is part of PD or not, it is often treated with the same medications.
Parts of the Body Affected by Dystonia
- Arms, hands, legs and feet: Involuntary movements and spasms.
- Neck: May twist uncomfortably, causing the head to be pulled down or to one side. This is called cervical dystonia or spasmodic torticollis.
- Muscles around the eyes: May squeeze involuntarily, leading a person to blink too much or to have difficulty opening the eyes.
- Vocal cords and swallowing muscles: May cause a person’s voice to sound strangled, hoarse or breathy.
- Jaw: May open 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 some questions to see if there is a pattern. For example:
- 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.
If other measures fail and your dystonia is not related to levodopa timing, you and your healthcare provider may consider botulinum toxin injections. Botulinum toxin weakens muscles. By targeting the overactive muscles, your physician can improve both the abnormal position and the pain caused by dystonia. It can take several injections to optimize benefit and may not always be effective, but when it works the benefit can last for several months before it wears off and re-injection is necessary. Botulinum toxin A (Botox) is sometimes used to decrease saliva production for people who have issues with drooling; botulinum toxin B (Myobloc) is used to treat dystonia.
Deep brain stimulation surgery may also help dystonia.
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.
- Connect with others who are living with PD and dystonia through online groups or support groups. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) if you need help finding a group near you.
- Pursue activities you enjoy and pace yourself for social, physical and creative activities.
- Treat your body well by getting enough sleep and exercise and by eating nutritious meals.