Dyskinesia are uncontrolled, unwanted and jerky movements.
These movements usually affect your arms, legs, face, and the head, but can also affect the whole body.
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. 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.
Symptoms
Dyskinesia can look and feel very different from one person to the next. Here’s what you might notice:
Body parts involved
- Arms and hands fidgeting or flicking
- Legs and feet kicking, writhing, or tapping
- Head bobbing or nodding
- Face moving, particularly mouth, opening and closing involuntarily
- Torso shifting, rocking, or swaying
- In some cases, the entire body may move in a wave-like pattern
Pattern and rhythm
- Sudden, jerky bursts of movement or slow, writhing motions
- Random twitches one moment, rhythmic “dance-like” movements the next
- Some people describe it as feeling like their muscles can’t stop moving
Duration and intensity
- Short-lived flurries of motion or constant, chronic activity
- Ranges from barely noticeable to so pronounced it makes daily tasks hard
- May feel mildly annoying or, for some, painfully tight or cramping
Triggers and timing
- 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.
Dyskinesia can impact your mood, confidence, and ability to join in on activities you love. Sometimes people feel stigmatised because of these misunderstood movements. The good news is that by tracking when these movements happen, adjusting medication timing, and working closely with your specialist (e.g. neurologist, Parkinson’s nurse or movement disorder specialist) and physiotherapist, you can find ways to reduce their impact.
Causes
While the exact cause of dyskinesia isn’t fully understood, researchers believe it involves a complex interaction between several brain chemicals, most notably dopamine, but also serotonin and glutamate. In Parkinson’s, the brain cells responsible for producing dopamine gradually deteriorate, leading to lower dopamine levels. Levodopa helps restore dopamine temporarily, but because it’s taken in doses throughout the day, dopamine levels fluctuate. These ups and downs, combined with ongoing loss of dopamine-producing cells, make it difficult to maintain a steady dopamine level, contributing to the development of dyskinesia.
Podcast: https://www.michaeljfox.org/podcast/podcast-what-causes-dyskinesia
How do you manage dyskinesia?
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.
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.
How do I access support?
It’s advisable to explore all available pathways to find the support that best suits your needs. Look to:
- getting a GP referral to physiotherapists with Parkinson‘s experience
- your state-based Parkinson’s organisation for advice on local services to access
- private health to see what is covered in relation to consultations and expenses
- DVA, NDIS or My Aged Care plan supports.
Infosheet kindly reviewed by Dr Paulo Henrique Silva Pelicioni
Dr Paulo Henrique Silva Pelicioni is an NHMRC Early Leadership Fellow and Senior Lecturer at UNSW Sydney and a conjoint senior research fellow at Neuroscience Research Australia, specialising in movement disorders and fall prevention in Parkinson’s. His work focuses on developing clinical tools and neurorehabilitation strategies to reduce fall risk and improve mobility for Australians living with Parkinson’s. He leads interdisciplinary research that bridges physiotherapy, neuroscience, and public health to enhance care and equity for people with Parkinson’s in Australia.
References
Ahlskog, J. E., & Muenter, M. D. (2001). Frequency of levodopa-related dyskinesias and motor fluctuations as estimated from the cumulative literature. Movement Disorders, 16(3), 448–458. https://doi.org/10.1002/mds.1181
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
Nadkarni, N. V., & Sethi, K. D. (2012). Dyskinesia in Parkinson’s disease: Epidemiology, pathophysiology, and management. Journal of Neurology, Neurosurgery & Psychiatry, 83(12), 1206–1213. https://doi.org/10.1136/jnnp-2012-302200
Rascol, O., Brooks, D. J., Korczyn, A. D., De Deyn, P. P., Clarke, C. E., & Parkes, J. D. (2000). A five-year study of the incidence of dyskinesia in Parkinson’s disease. The New England Journal of Medicine, 342(6), 438–444. https://doi.org/10.1056/NEJM200002103420604
Sassone, J., Valtorta, F., & Ciammola, A. (2019). Early dyskinesias in Parkinson’s disease patients with PARKIN mutation: A primary corticostriatal synaptopathy? Frontiers in Neuroscience, 13, 273. https://doi.org/10.3389/fnins.2019.00273
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