Two common issues in young onset are dyskinesia and dystonia. Understanding these abnormal movement disorders is fundamental for you, your caregivers, and your care team. Dyskinesia and dystonia both involve involuntary movements, yet they differ in how they look, what causes them, and how you treat them.

What is dyskinesia?

  • Dyskinesia refers to involuntary, erratic, and often excessive movements that mainly occur when Parkinson’s medications (especially levodopa) are at their peak. These movements usually affect your arms, legs, face, and head, but can also affect the whole body.
  • However, although not as common, dyskinesias can occur at the start, and the end of the medication cycle (diphasic dyskinesia) and when in off-periods of medication, e.g. when the medication is not optimally working, and levels of dopamine are low.
  • Feeling stressed or excited can also bring on these movements, which could expose people to an increased risk of falling or accidents (e.g., tripping over, dropping something accidentally on the floor).
  • Many people with Parkinson’s mention they’d rather have dyskinesia than spend time stuck in stiffness or with slowed movement. However, dyskinesia can sometimes be painful or make it hard to exercise, work, or enjoy social activities.
  • Dyskinesia typically appears after several years of treatment and is more common in women and those diagnosed at a younger age or those who have required higher doses of levodopa over time.
  • Dyskinesia is most commonly associated with Parkinson’s, but it can also occur in other neurological conditions such as Tourette’s syndrome and Wilson’s disease, or as a side effect of certain medications, including some antipsychotics.

Common triggers

  • Most commonly during “on” periods when your medication is working best
  • Stress, excitement, or being in a rush can bring on or worsen movements
  • Sometimes emerges gradually as medications take effect or wears off over time.

Managing dyskinesia involves a combination of strategies

  • Adjusting medications: Working with your doctor to find the right balance of medications can help minimise dyskinesia. This might include changing doses or adding other drugs to smooth out dopamine levels.
  • Amantadine (Symmetrel or Amantamed): can help with involuntary movements (dyskinesias) caused by long-term levodopa use. It’s usually used alongside other medications.
  • Botulinum Toxin Injections: Botox can help relax overactive muscles, reducing involuntary movements.
  • Deep Brain Stimulation (DBS): In some cases, DBS can help control dyskinesia by regulating abnormal brain signals.
  • Open communication: keeping an open communication channel with medical and allied health practitioners part of your care team is key, since they will help you understand and create strategies to mitigate the issues caused by dyskinesias.
  • Avoid situations that can trigger dyskinesias: if you are aware of when your dyskinesia episodes can start or become more exacerbated, create strategies to avoid these triggering situations.
  • Get involved in clinical trials: Consider participating, whenever is available, in studies aiming to understand dyskinesias.

Should I not start levodopa due to the risk of dyskinesia?

Levodopa has been the cornerstone of Parkinson’s treatment for nearly 60 years. It remains the most effective medication for managing motor symptoms such as tremor, stiffness and slowness of movement. Yet, despite its proven benefits, some people hesitate to start levodopa due to concerns about side effects like dyskinesia.

This hesitation, sometimes called “levodopaphobia,” can delay symptom relief and impact your quality of life.

Recent studies show that starting levodopa earlier does not increase the risk of dyskinesia or speed up disease progression. In fact, delaying levodopa until symptoms become more severe may lead to poorer symptom control and overall reduced quality of life. The American Academy of Neurology recommends levodopa as the preferred first-line treatment for motor symptoms in early Parkinson’s, due to its superior effectiveness compared to other options.

What is dystonia?

Dystonia causes muscles to contract constantly, creating abnormal postures or twisting movements.

  • Focal dystonia affects one area (for example, the neck, foot or hand)
  • Generalised dystonia spreads across several body parts
  • Often occurs when Parkinson’s medication wears off
  • Can be painful and tiring.

Common triggers

  • Low dopamine during “off” periods between doses
  • Side effects of some Parkinson’s or antipsychotic drugs
  • Genetic factors or brain injuries.

Management tips

  • Adjust your Parkinson’s medication schedule with your neurologist to reduce “off” time
  • Use botulinum toxin (BOTOX) injections to relax specific muscles
  • Try asking your neurologist about oral medications like anticholinergics or muscle relaxants
  • Speak to your neurologist about DBS if other treatments do not help.

Key differences at a glance

Feature Dyskinesia Dystonia
Movement Type Jerky, fluid, dance-like wriggles (disco!) Sustained muscle contractions, twisting postures (twisting muscle cramps)
Relation to Medication Level Often peaks when dopamine is high (“on” periods) Usually flare-ups when dopamine is low (“off” periods)
Pain Usually painless Often painful and tiring
Main management focus Smoothing medication levels, DBS, physiotherapy Injection therapy, medication timing, DBS

For more information, visit our infohub on the Parkinson’s Australia website: https://www.parkinsons.org.au/information-hub/

Track your dyskinesia over the day with our hourly symptom tracker: https://www.parkinsons.org.au/wp-content/uploads/2024/08/Medication-Planner-Sheets-25.pdf

References

Baas, H. (2000). Dyskinesia in Parkinson’s disease: Pathophysiology and clinical risk factors. Journal of Neurology, 247 (Suppl. 4), IV12–IV16. https://doi.org/10.1007/PL00007767

Calabresi, P., & Standaert, D. G. (2019). Dystonia and levodopa-induced dyskinesias in Parkinson’s disease: Is there a connection? Neurobiology of Disease, 132, 104579. https://doi.org/10.1016/j.nbd.2019.104579

Jinnah, H. A., et al. (2018). Dystonia guidelines: A consensus update. Neurology, 90(5), 232–239. https://doi.org/10.1212/WNL.0000000000004867

More reading: 

https://www.michaeljfox.org/news/dyskinesia

https://www.michaeljfox.org/news/dystonia

https://www.myparkinsonsteam.com/resources/dyskinesia-vs-dystonia-understanding-the-difference

Share

Other articles

  • Managing Symptoms | UTIs

    Bladder issues can feel private and difficult to talk about, but they are an incredibly common part of living with Parkinson's. Please do not ignore these symptoms or accept them as an inevitable part of ageing. By understanding the risks, staying vigilant for the signs of delirium, and speaking openly with your care team, you can manage your symptoms, prevent severe infections, and maintain a much higher quality of life.

  • CARE TEAM | Neurologist

    What do neurologists do? Reprinted from the Parkinson's Australia infohub | Neurologist infosheet. A neurologist is a medical doctor specialising in diagnosing and treating disorders affecting the nervous system, including the brain, spinal cord, nerves, and muscles. They are trained to evaluate and manage a wide range of neurological conditions, such as epilepsy, stroke, multiple [...]

  • 101 | Hormonal stages & Parkinson’s

    Women experience very different hormonal environments at different life stages. Grouping all women together can hide important biological signals. Our research findings suggest that considering menopausal status reveals patterns that aren’t visible when only comparing males and females.