Curled, clenched toes or a painful cramped foot is often a telltale sign of dystonia. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can be an early or late symptom of Parkinson’s disease (PD).
People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. This painful cramp usually goes away after the first dose of PD medications. Less commonly, dystonia can affect other body parts and come and go throughout the day. It causes 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 to be not painful.
Although people with PD sometimes have dystonia, it also is its own movement disorder; people can have dystonia without having PD. 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.
As with any intermittent symptom in PD, it is critical to establish whether it is related to drug levels in the brain that are too low or too high. Your doctor may ask you to stay in the office for a few hours to observe your symptoms and how they relate to your PD medications. He or she may also ask:
- 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, PD medications may need to be adjusted or an additional medication added (for example, the injectable drug apomorphine). Additional therapies for dystonia include botulinum toxin injections or deep brain stimulation surgery.
Tips for Living with Dystonia
- Learn about dystonia and treatment options, and work with your doctor to find the best treatment for you.
- Connect with others who are living with PD and dystonia through support groups, online groups and organizations.
- 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.
Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinson’s Foundation Center of Excellence.