Dystonia is a fairly common symptom that about 1/3 experience when you are living with Parkinson’s.

Dystonia is involuntary, painful muscle contractions that cause repetitive or twisting movements.

What is dystonia?

Dystonia is a movement disorder that causes muscles to contract without control. These contractions can be painful and may lead to unusual movements or postures, like a foot turning inward or the head tilting to one side. It can affect different parts of the body, including the neck (cervical dystonia), face, arms, legs, eyelids (blepharospasm), and even the voice (spasmodic dysphonia).

For people living with Parkinson’s, dystonia can be a symptom of the condition or a side effect of treatment. Dystonia can be an early sign of Parkinson’s, often happening when exercising (e.g. the foot turns in or toes curl under while running). Some people experience dystonia when their Parkinson’s medication, especially levodopa, starts to wear off. It’s also more common in people with certain genetic forms of Parkinson’s, such as those with a PRKN gene mutation. It is also more common in people who are younger at diagnosis (under 50).

Effective management often involves a combination of medications, physical therapy, and in some cases, surgical interventions. If you or someone you know is dealing with dystonia, it’s important to consult with your care team to develop a tailored treatment plan.

Dystonia & Parkinson’s

Experts believe dystonia happens because of miscommunication in the brain, especially in the areas that control movement. These are the same areas affected by Parkinson’s. While the exact cause isn’t fully understood, researchers are working hard to learn more and improve treatment options.

It’s estimated that up to 30% of people with Parkinson’s may experience dystonia at some point. It can show up early in the disease or later, and the severity can vary from person to person.

In Parkinson’s, dystonia can be due to:

  • Medications: Long-term use or high doses of dopaminergic (c/l) medications can trigger dystonia.
  • Parkinson’s progression: As your condition progresses, the natural course of the condition can also lead to dystonia.
  • Other factors: Stress, fatigue, exercise and other external factors can make your dystonic symptoms.

Treatment

Managing dystonia involves a comprehensive approach:

  • Medication Adjustments: Tweaking Parkinson’s medications can help reduce dystonic symptoms. This may involve changing doses, switching medications, or adding other drugs to manage symptoms.
  • Botulinum Toxin Injections: Botox injections can help relax overactive muscles and provide relief from symptoms.
  • Physical Therapy: Specialised exercises and therapies may improve muscle control and reduce discomfort. Techniques like stretching and strengthening exercises can be beneficial.
  • Deep Brain Stimulation (DBS): In some cases, DBS can help manage dystonia by targeting specific brain areas involved in muscle control.
  • Supportive Therapies: Speech pathology, occupational therapy, and pain management strategies may help improve quality of life.

Key Statistics

    1. Dystonia is a common motor symptom in Parkinson’s, often affecting about 40-60% of people with the condition.
    2. Types of dystonia can present as focal (affecting one part of the body), segmental (affecting adjacent body parts), or generalised (affecting the whole body). In Parkinson’s, dystonia often affects the neck, limbs, or face.
    3. Dystonia can occur as an “off” symptom (when medication effects wear off) or as an “on” symptom (during peak medication times). It can also manifest first thing in the morning or after periods of rest.
    4. Dystonia is more common in YOPD.

How do I access an allied health professional?

Accessing physical and occupational therapy services may make a significant difference in managing the symptoms of Parkinson’s, improving quality of life and maintaining independence.

It’s advisable to explore all available pathways to find the support that best suits your individual needs. Look to:

  • getting a GP referral to a Physiotherapist and an OT with Parkinson‘s experience
  • your state-based Parkinson’s organisation for advice on allied health professionals to access
  • private health to see what is covered in relation to consultations and expenses
  • DVA, NDIS or My Aged Care plan supports.

Infosheet under review

Dystonia Network of Australia Inc. (DNA) is the National Peak Organisation for all types of Dystonia in Australia. DNA was founded in 2014 and is a registered charity with the Australian Charities and Not-for-profits Commission. Their aims are to provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers; to increase community awareness of dystonia; and to fund seminars and educational forums and assist with research into dystonia.

References:

(1) Post, B., van den Heuvel, L., van Prooije, T., van Ruissen, X., van de Warrenburg, B., & Nonnekes, J. (2020). Young Onset Parkinson’s Disease: A Modern and Tailored Approach. Journal of Parkinson’s disease, 10(s1), S29–S36. https://doi.org/10.3233/JPD-202135

(2) Shetty, A. S., Bhatia, K. P., & Lang, A. E. (2019). Dystonia and Parkinson’s disease: What is the relationship? Neurobiology of disease, 132, 104462. https://doi.org/10.1016/j.nbd.2019.05.001

MJFF Webinar: https://www.michaeljfox.org/webinar/cramping-more-your-style-dystonia-causes-and-care

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