More than 30% of people living with Parkinson’s disease experience dystonia. The dystonia can precede clinical symptoms of Parkinson's disease by almost a decade. It is more prevalent in those with young onset Parkinson’s (YOPD). While common in PD, dystonia is not unique to only Parkinson’s. In fact, it is estimated that 500,000 adults and children in the United States and Canada are affected by dystonia. Scientists do not yet know the exact cause, but they do know that dystonia in those with PD is a result of the disease or medication. Unlike dyskinesia, which is thought to be due to the medications.
What is Dystonia?
Dystonia is a movement disorder that causes the muscles to stiffen or contract involuntarily. They are often painful and will cause abnormal movements and postures, like toes curling or the head tilting sideways. More than 30% of people living with Parkinson’s disease experience dystonia. It is more prevalent in those with young onset Parkinson’s (YOPD).
There are two main types of dystonia, primary and secondary
In primary dystonia, dystonia is the only clinical feature. Primary dystonias are genetic (or believed to be genetic) in origin
Secondary dystonia is thought to be the result of an external factor such as a spinal cord, head, or peripheral injury. It is also dystonia associated with a number of neurological and metabolic diseases, like Parkinson’s. Secondary dystonia can also be caused by levodopa medications.
Dystonia related to medication
Dystonia is most commonly linked to Parkinson's medication, especially levodopa. It can be linked to your "on" and "off" times.
Sometimes as your medication starts to work or when it is at the peak-dose, your body can almost go into dopamine overdose. When this happens, you can develop dystonia.
Dystonia most commonly happens as your medication is wearing off, or in other words, when your medication becomes less effective. This usually happens right before you take your next dose. Do you experience painful muscle spasms in the morning, especially in your legs and feet? This may be dystonia that is related to your "off" time.
Dystonia often occurs on the side of the body that is more affected by Parkinson’s. However, this can change as the disease progresses.
In early PD, foot dystonia is one of the most common sources of dystonia related pain.
Common dystonia symptoms:
Spasms or twisting and "curling" of the arms, hands, legs, and feet
Head being uncomfortably pulled down or to the side
Excessive blinking or difficulty opening eyes (blepharospasm)
Softened, hoarse, or breathy voice
Opening or closing of the jaw forcibly
Grimacing of the face
Writhing movements of the trunk
What are some Dystonia treatments:
1. Deep Brain Stimulation
DBS is a surgical procedure that involves inserting electrodes into a targeted area of the brain.
You may be a good candidate if you...
Have had PD symptoms for at least four years.
Have “on/off” symptoms even though you are consistent with your medication dosing.
Have bothersome dyskinesias.
Medication side effects that are not tolerable.
Have tremor that is not well controlled with medications.
Continue to have a good response to medications, especially carbidopa-levodopa.
Have tried different combinations of medications.
Have PD symptoms that are interfering with your daily activities.
2. Levodopa and anticholinergic medications. Talk to your neurologist about what would be best for you!
3. Muscle relaxants or antispasticity drugs
Botox or Xeomin injections can be helpful for up to several months at a time.
4. Physical Therapy, Occupational Therapy, Speech Therapy - Check out this list of local therapists
5. Stress Management - Check out our blog post on stress and Parkinson's!