Dystonia is a continuous or repetitive muscle twisting, spasm, or cramp that can happen at different times of the day. Curled, clenched toes or painful, cramped feet are common signs of dystonia. It can occur in different stages of Parkinson's disease (PD). It is very common in Young Onset Parkinson's, but also appears in middle and advanced stages of Parkinson's. It most commonly occurs in the feet or toes, but can also be found in the neck, face, or throat muscles.
Dystonia often happens when the person with PD tries to perform an action with the affected body part, but it can also happen when you are not using that part. Some dystonia happens unrelated to an action or movement, like toe curling while sitting.
People with PD often experience pain with dystonia, especially in the morning when dopamine levels are at their lowest and nighttime medications wear off. This generally can cause painful cramping that will be minimized after a first dose of PD medications.
How Does Dystonia Impact Different Parts of the Body?
Limbs (arms, hands, legs, feet): Involuntary movements, spasms or twisting and "curling"
Neck: May twist uncomfortably, causing the head to be pulled down or to the side. This is called cervical dystonia or spasmodic torticollis
Muscles around the eyes / Eyelids: May squeeze involuntarily, leading to a person to blink too much or have difficulty opening eyes - also called blepharospasm
Vocal cords and swallowing muscles: may cause a person's voice to sound softened, hoarse or breathy
Jaw/Tongue: May open or close forcefully or present with a grimacing face
Abdominal Wall / Trunk: May cause sustained contractions and involuntary movements of the abdominal wall.
How Can You Manage Dystonia?
Keeping track of when dystonia symptoms occur can help you understand how to administer medication timely. Work with your doctor by providing a journal summary for when your symptoms appear so that an ideal medication schedule can be created. Items to consider tracking so that you notice a pattern, include:
Do you experience dystonia when levodopa is at a peak?
Do dystonia symptoms happen before the first dose in the morning or when medication is wearing off?
By finding common patterns, you and your doctor can work to adjust the dose and frequency of medications, perhaps even consider controlled-release, extended release, or long-acting dopamine agonists. Keeping a diary can help track symptoms to adjust medications with your doctor or recognize triggers that may increase dystonia.
Therapies can also help manage some dystonia. Working with a physical or occupational therapist to create an exercise routine to target the source of your dystonia may help. Stretching has also proven to strengthen some of the body parts most impacted by dystonia.
Did you know you can trick your body? Using the sensory trick called "geste antagoniste," lightly touch a part of your body that is not cramping or curling. Sometimes this can quiet the dystonia.
Alternatives to medication and therapies could include Botulinum toxins (BOTOX). BOTOX injections weaken muscles and help to keep them calm from overactivity caused by dystonia. By targeting overactive muscles, your physician may be able to decrease the discomfort and pain associated with Dystonia. It isn't effective in everyone, and generally requires several injections to see its benefits. When it does work, benefits could last for several months. BOTOX is also used to decrease saliva production for people with drooling issues. It is important to know that it has not been approved by the FDA for drooling and may cause dry mouth.
In some cases, muscle relaxants may also be utilized in more extreme cases.
Deep Brain Stimulation (DBS) surgery may also help with dystonia in Parkinson's in some cases. It is recommended for specific types of dystonia and continues to be researched to see how DBS techniques can better target dystonia symptoms related to Parkinson's.
Consult with your medical professional if dystonia is a painful, reoccurring symptom that needs to be more aggressively managed.
Davis Phinney Foundation for Parkinson's. Every Victory Counts, Your Go-To-Resource of Essential Information and Inspiration for Living Well with Parkinson's. Page 88. "Manual." Sixth Edition, 2021.