Managing Your Dystonia and Dyskinesia
Differentiating Dystonia from Dyskinesia
You may have heard the words dystonia and dyskinesia said during your medical appointments or perhaps with your exercise professional. Hearing about these two conditions is different than experiencing them. Like the symptoms of Parkinson’s disease (PD) not all people living with PD will experience dystonia and dyskinesia. However, some might, and learning about them can be a stepping stone to getting relief from these symptoms.
Dystonia
Primary dystonia affects an estimated 300,000 people in the United States and Canada; secondary dystonia is caused by a number of diseases and traumas and is much more prevalent than the primary forms (Dystonia Canada, 2015). When we look at the dozens of diseases that can cause dystonia, Parkinson’s is one of them.
Dystonia in Parkinson’s occurs as a result of painful abnormal muscle contractions related to a dysfunction in the region of the brain called the basal ganglia. It is characterized by abnormal postures, rigid twisting, turning and/or clenching (e.g., toe curling or leg cramps). People may experience these symptoms in their neck, shoulders, arms, hands, feet, face, jaw and vocal folds.
Dystonia may occur as an early symptom of PD or as a complication of treatment. For instance, “off” dystonia may occur during “off” periods, when the efficacy of levodopa treatment begins to wear off. In contrast, “on” dystonia may also occur during periods when levodopa has recently been taken and muscle spasms occur as a result of too much dopamine in the brain at one time. In some circumstances, dystonia may simply be a symptom of PD, however this is rare.
Dyskinesia
The meaning of dyskinesia comes from dys, referring to “not correct”, and kinesia referring to “movement”. Dyskinesia is characterized by abnormal, involuntary wriggling movements that some describe as random dance-like motions. These movements are different from the common PD tremor. Dyskinesia can affect part of the body or the entire body, including the legs, arms, trunk, head, face, mouth and tongue.
It is important to note that not all people living with PD will experience dyskinesia. It can be a side effect of medication prescribed to treat PD. As PD progresses, there are changes in how the brain is able to store and release dopamine. This means that over time, people with PD are more likely to experience dyskinesia no matter how long they have been on treatment.
Treating Dystonia
Knowing what is causing your dystonia is the first step in treating it. If your dystonia is affected by your PD medications, your doctor may be able to work with you to minimize these side effects by modifying doses of levodopa. The purpose of treatment for dystonia is to help lessen the symptoms of muscle spasms, pain and awkward postures (Dystonia Canada, 2015). Additional treatment options may include:
- Yoga, tai chi, qi gong, and meditation
- Physical therapy
- Muscle relaxants or antispastic agents
- Botulinum toxin injections (i.e. Botox, Xeomin, Dysport) may be effective for some patients
- Deep Brain Stimulation surgery
Managing Dyskinesia
It is best to discuss the options for managing dyskinesia with your medical team. PD doctors will work to minimize your movement problems to get the most “on” time without dyskinesia. It can be a lengthy process to determine the correct dose, timing and type of medication as each individual is different and treatment needs can change over time. Some people with PD choose to live with mild dyskinesia as they are not bothered by it and feel that treating it may be more disruptive to the treatment of other, more serious symptoms.
Sources
Ahlskog, J. E. (2015). The New Parkinson’s Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications, Second Edition. New York, NY: Oxford University Press.
Christensen, Jackie Hunt. (2005). The First Year Parkinson’s Disease: An Essential Guide for the Newly Diagnosed. New York, NY: Marlowe & Company
Dystonia Canada. (2015). What is Dystonia? Retrieved from: https://dystoniacanada.org/whatisdystonia
Okun M. S. & Fernandez, H. H. (2010). Ask the doctor about Parkinson’s disease. New York, NY. Demos Medical Publishing.
Parkinson’s Disease Foundation. Dystonia. Retrieved from http://www.pdf.org/Dystonia
Parkinson’s UK. Muscle Cramps and Dystonia. Retrieved from https://www.parkinsons.org.uk/information-and-support/muscle-cramps-and-dystoniapulsivity
Weiner, W. J., Shulman L. M., & Lang A. E. (2001). Parkinson’s disease: A complete guide for patients & families. Baltimore, MD: The John Hopkins University Press.
This content was published in the September 2018 edition of our monthly support group newsletter, GroupLink. The content was accurate as of this publication date.