Get ready to take charge
The standard treatment for Parkinson’s disease is a dopamine-replacement medication, such as levodopa. Levodopa works well in treating Parkinson’s—often for several years. However, over the course of treatment, you may experience new difficulties with your movement control, which may keep you from doing the things you love with family and friends.
- Learn about OFF time and dyskinesia, so that you can take charge of your good ON time, or the time when you have good movement control.
- Make every movement count and do more of what you love by:
- Getting tips on how to speak with your doctor about the right balance between managing OFF and dyskinesia
- Finding out about potential treatment options to maximize good ON time
“Parkinson’s has slowed me down on the court, but it hasn’t stopped me.”
What is OFF time?
When the PD medication is at low levels or is not working well, symptoms of Parkinson’s appear during what is called OFF time. Symptoms of Parkinson’s / OFF time may include:
- Tremors: Involuntary, rhythmic movements that look like shaking.
- Bradykinesia: Slowness of movement
- Rigidity: Stiffness of the limbs and torso
- Instability: Difficulty with balance with problems like standing from a low or soft chair or a tendency to teeter backward or lurch forward
What is dyskinesia?
Dyskinesia: involuntary, erratic, writhing movements of the face, arms, legs or trunk.
These movements are often fluid and dance-like but may also cause rapid jerking or slow and extended muscle spasms. Dyskinesia is different than OFF time because it is not a symptom of Parkinson’s itself, but is caused by levodopa.
“Sometimes the dyskinesia is worse than having PD. My arms flail around with a life of their own. Other times I can’t stop rocking. It’s embarrassing.”
People who are diagnosed with Parkinson’s at a younger age (called young-onset Parkinson’s disease) are more likely to experience increased OFF and dyskinesia, earlier in their disease progression — compared to those who are diagnosed at an older age.5
OFF time and dyskinesia can feel unpredictable, disruptive, and frustrating.
OFF time and dyskinesia often come on without warning, which can make you feel like you don’t have control of your movements. Experiencing OFF and dyskinesia may prevent you from doing activities and spending time with the people you love – and also may cause anxiety and embarrassment.6
OFF time and dyskinesia can get in the way of all sorts of things.
Meetups with friends and family, birthdays, weddings, and other events may make you feel awkward or uncomfortable to be around other people because you don’t know when your OFF time or dyskinesia will flare up. Additionally, special events with other people can be stressful and cause more dyskinesia due to the anxiety, so you may opt to stay home.
Daily routine activities
Uncontrolled movements make simple tasks like walking, typing, signing your name, cleaning the house, texting, or calling a friend difficult. They can also make these tasks embarrassing, irritating, and time-consuming.
Hobbies you would normally enjoy like yoga, tennis, gardening, dancing, or painting may become difficult to do.
You may not feel confident in day-to-day work tasks or speaking on the phone, or you may want to avoid feeling embarrassed around co-workers.
You may not be able to enjoy meals without dreading an accidental food or drink spill, so you may avoid eating in public with family and friends.
“I can’t talk to John on the phone anymore. His dyskinesia makes his head turn from side to side so much. I only hear half of what he has to say.”
What causes OFF and dyskinesia?
Changes in dopamine levels can lead to episodes of OFF or dyskinesia.
As Parkinson’s disease progresses, the brain makes less and less of the chemical involved in coordinating movement and balance, called dopamine.
Levodopa helps replace the dopamine that is lost. Levodopa works well in treating Parkinson’s disease —often for several years. However, as the disease progresses, the effects of levodopa do not last as long. This triggers the need to take higher or more doses of levodopa throughout the day, which may in turn trigger dyskinesia. Therefore, it may become difficult to maximize good ON time, or the period of time when a person with Parkinson’s experiences good motor control.7
Motor complications (including OFF and dyskinesia) were cited as the top symptoms affecting quality of life in a survey of people with Parkinson’s disease for at least 6 years.8 If you are experiencing these, learn about your treatment options.
A fine balance: Achieving good ON time
Treatment strategies that adjust or limit levodopa therapies to treat OFF and dyskinesia often result in a “trade-off”: either accept OFF or dyskinesia. Some people think that levodopa will bring dyskinesia sooner, so they may choose to delay starting levodopa, even while experiencing significant tremors and stiffness. Starting levodopa sooner does not increase dyskinesia and, in fact, can be helpful in alleviating OFF symptoms earlier in the disease progression.11 12 It is important to note that there are also other treatment options as well.
Learn about treatment approaches that might help you maximize your good ON time so you are able to do more of what you love with good movement control.
“I would like to encourage people with Parkinson’s to work with their doctors for the best combination of treatments and meds to find what works for them. Exercise regularly and go to a Movement Disorder Specialist.”
— Jean B.
Maximizing levodopa therapy
Over time, it can be difficult to achieve good ON time by adjusting levodopa.
Tips for making the most of your levodopa
- Drink a full glass of water with your medication. This allows the drug to fully dissolve and move through the digestive tract.
- Take your medication at least 30 minutes before or 1-2 hours after a meal.
- If you experience nausea, try a light low-protein snack, such as dry bread, soda crackers, or a piece of banana If the nausea does not resolve, call your doctor. You may need supplemental carbidopa to help resolve this side effect.13
How are OFF and dyskinesia managed?
You may be hesitant to consider adding another medicine to the ones you are already taking. However, you may want to discuss with your doctor ways to manage OFF and dyskinesia so you can experience more good ON time with better movement throughout the day.
Your doctor may consider a number of ways to manage or treat OFF, dyskinesia or both.
Talking to your doctor
Have an open and informed conversation about your experience, symptoms, and your goals.
Sometimes when there are a lot of things to discuss at your next doctor’s visit, OFF and dyskinesia may fall lower on the priority list. It is important to speak to your healthcare provider about your experience with OFF and dyskinesia so your doctor can help you to increase your good ON time – to spend on things that are important to you.
OFF and dyskinesia often impact both the person with PD and their care partner or family – develop a plan to discuss with your doctor how to manage OFF time and dyskinesia during your next visit.
These are important questions to consider as you speak with your doctor to develop a plan to manage OFF and dyskinesia time:
About OFF and dyskinesia
I sometimes experience uncontrolled, unpredictable twisting and turning movements. These occur in my face, arms, legs, and/or torso. Could this be dyskinesia?
How do I know what I am experiencing is dyskinesia rather than a symptom of OFF time?
How OFF or dyskinesia can impact daily activities
Sometimes due to my OFF and/or dyskinesia, I find it difficult to engage in my hobbies and daily activities. Is this something that’s just part of Parkinson’s, or is there something that could help me control my movements better?
How can my care partner help me observe and track my OFF time and dyskinesia so we can have an informed conversation during our next visit?
Managing OFF or dyskinesia
OFF time and dyskinesia are unpredictable and make it difficult for me to plan for my day. How can I better manage these problems?
I’ve heard one way to manage dyskinesia is to adjust my levodopa dose. Will lowering my levodopa make me experience more OFF time?
In order to address my OFF time, I heard that increasing my levodopa dose could lead to dyskinesia. How can I manage any dyskinesia that I also experience?
Is there a way I can reduce both OFF and dyskinesia together without adjusting my levodopa so I can maximize my good ON time?
How can my care partner help me observe and track my OFF or/and dyskinesia so we can have an informed conversation during our next visit?
For care partners
What can I do if my partner’s OFF and dyskinesia make our daily activities difficult?
I see my partner’s dyskinesia and/or OFF symptoms getting worse, but he/she doesn’t seem to notice or mind. Is this something I should be worried about?
Are there treatments available so my partner can reduce either OFF and dyskinesia, or both, to maximize their good ON time?
How can I observe and track my partner’s OFF and/or dyskinesia so we can have an informed conversation during our next visit?
Download a guide to remember your questions and track your symptoms.
This Discussion guide can help you prepare for your next doctor’s appointment and help you keep track of your symptoms.