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Dystonia - Cramping your style

Updated: 7 days ago

Dystonia affects about 30% of those living with PD and is a miscommunication between the brain and muscles. It can result in prolonged and, at times, painful muscle contractions. It can be a symptom of PD or can be associated with the wearing "off" of medications. For some, especially for those who are diagnosed at a younger age, this can be the first sign of Parkinson's.


Why does dystonia happen?

Dystonia can become present when someone is taking dopamine medication and the medication is beginning to wear off ("off" period). This commonly will occur in the morning before taking your first dose of medication for the day or during the day prior to your next dose of dopamine medication.


Dystonia can also happen with the medication Levodopa. This can happen when you are at the peak of your dose or at the beginning or ending of a dose of medication. . The medication (which helps with movement) can cause extra movement which can leads to sustained twisting movement.

Where are common areas of dystonia?

These muscles contractions typically begin in one area of the body (foot, hand, neck) and for some people can spread to other regions. Common areas where dystonia occurs are:

  • Eyes (blepharospasm) - this can be uncontrolled eye lid closing. This can become worse with certain triggers like bright light.

  • Neck (cervical)- this can result in forward flexed or bent posture.

  • Trunk (camptocormia)- this can result in forward flexed or bent posture. Even though someone's forward flexed posture can be significant, when the person lies flat or stands against a wall they are able to stand up tall.

  • Limbs - this can result in cramps in the foot or hand and may occur only during specific activities like walking/ running or writing.


What can be done to manage these muscle cramps?

  • It is really important to determine the connection between the timing of your medication and your dystonia symptoms. Dystonia can present either during "off" times of medication or as side effect of the levodopa. Keeping a diary of your medications including dosage and timing and when you have your symptoms can provide invaluable information.

  • Dopamine medications may need to be adjusted.

  • If the dystonia is happening because of levodopa a medication called Amantadine can be used to help control this dystonic dyskinesia.

  • Botox: this is a medication injected into the specific muscle that cramps which can help for several months

  • Physical or occupational therapy: In therapy stretches and exercises can be provided to help manage the muscle spasms.

  • Deep brain stimulation: If the dystonia is related to an approaching off time, DBS may be beneficial.

  • For some sensory tricks work: This can include touching the part of the body that gets the dystonic movement in order to help decrease that unwanted muscle contraction. An example would be touching your chin to decrease dystonia in the neck or wearing 5 toe shoes to prevent toe curling dystonia.

More to come on strategies to help with dystonia!



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