Most people who begin levodopa treatment for Parkinson’s disease see good results, and their symptoms are often controlled for several years or more. But this response may become less steady as Parkinson’s disease progresses.

To some, these returning or worsening symptoms can feel a lot like a switch is being turned off, which is why this experience is referred to as Parkinson’s off time. You or your loved one may also notice changes in motor abilities, as well as stiffness, muscle cramps, and tiredness.

Here’s what you need to know about Parkinson’s off time, including ways to reduce it and improve your quality of life.

🗳️ Have you noticed off time with Parkinson’s?

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How To Manage Off Time

One of the first steps to managing off time involves addressing your medications. This may involve changing your dosage or your medication schedule or taking levodopa in a different form, such as immediate release (Sinemet) or controlled release (Sinemet CR).

Other levodopa options are:

• Extended release (Crexont, Rytary)
• Enteral suspension (Duopa)
• Tablets (Stalevo)
• Inhalation powder (Inbrija)
• Infusion (Vyalev)

Your healthcare provider may also prescribe an add-on medication like apomorphine (Apokyn), rasagiline (Azilect), or safinamide (Xadago), which can address off time. Or they might prescribe amantadine (Gocovri), which can address dyskinesia (involuntary movement).

Another option is istradefylline (Nourianz), which was approved by the U.S. Food and Drug Administration (FDA) in 2019 to treat off time. This drug blocks adenosine (a brain chemical) so that dopamine increases more easily.

COMT inhibitors, like opicapone (Ongentys), are another option. These drugs block an enzyme that breaks down levodopa so that more levodopa can get to your brain, which can help reduce off time.

Nonmedication treatments can also address off time. One option is deep brain stimulation, a surgical treatment where an implant sends impulses to the brain.

Overall, medication combinations and treatment options are very individualized. What works for one person may not be appropriate for another. With input on your symptoms and preferences, your healthcare team can develop the best treatment plan for you.

Nutrition and Mealtimes

When you begin taking levodopa in the early stages of Parkinson’s, combining the medication with meals may not cause problems. Later on, though, some people with Parkinson’s, especially those who follow a high-protein diet, find combining the two impacts its effectiveness.

If your meals are affecting your medication or causing it to wear off too soon, talk to your healthcare team. You could also consider making the following adjustments:

• Taking medications at least 30 minutes before or 60 minutes after a meal
• Spacing out iron supplementation, if you take it, to two hours before or two hours after taking levodopa

One member said, “I find if I don’t eat anything up to a half hour or 45 minutes before I take my medication, and I don’t do protein at all just before my meds, the medication works a WHOLE lot faster.”

Constipation and delayed gastric emptying can also contribute to delayed or less predictable levodopa absorption.

Exercise

Exercise is an important part of managing Parkinson’s disease and reducing issues with off time. In fact, researchers have found that exercise plays a role in slowing disease progression. Exercise can improve mobility, strength, balance, and quality of life.

The key is choosing the right exercise regimen for your symptoms and abilities. But you shouldn’t use exercise as a replacement for medication.

Instead, your healthcare team can help you develop an exercise program and medication schedule that work together. Ideally, your exercise program should be tailored to your needs and include aerobic activity, strength training, stretching, and balance exercises.

You may also need input and guidance from a physical therapist. Here are some activities that people with Parkinson’s can consider:

• Aerobic exercise like walking on a treadmill
• Riding a stationary bike
• Yoga or tai chi
• Flexibility exercises or stretching
• Dance
• No-contact boxing classes
• Resistance training

Some MyParkinsonsTeam members even swear by exercise as a way to avoid off time symptoms. “I usually start using the exercise bike as off time nears, and it gives me some extra dopamine until the new meds start working,” said one member.

Stress Management

Medical experts — and MyParkinsonsTeam members — acknowledge that stress can exacerbate Parkinson’s symptoms. In fact, one study found that stress made all Parkinson’s symptoms worse, including sleep issues, depression, freezing, dyskinesia, and bradykinesia (slow movement).

That said, researchers found that practicing mindfulness may lessen the impact of stress for some people. For instance, nearly 65 percent of the participants in the study who practiced mindfulness had less anxiety and just over 60 percent noticed an improvement in depression.

As discovered in this study, finding ways to manage stress may make it easier to cope with off time and improve your overall well-being. Some stress-relief techniques and strategies include:

• Physical activity like walking, tai chi, yoga, or swimming
• Meditation and mindfulness
• Talk therapy or cognitive behavioral therapy
• Social interaction with others
• Breathing exercises like box breathing
• Progressive muscle relaxation
• Massage therapy

Members also point to coloring and acupuncture as other options for relaxation and stress relief. “I started going to an acupuncturist, and that helped immensely in my sleeping and overall relaxation,” said one member. “Try coloring,” said another. “It seems to help me calm down.”

Just make sure you talk with a healthcare provider before trying something new. What works for one person may not be right for another.

Keep a Journal of Motor Symptoms

Having a detailed record of your motor symptoms can help your neurologist figure out the relationship between your Parkinson’s symptoms, your medications, and any side effects you’re experiencing. Keep notes in your journal about:

• The times you take Parkinson’s medications
• The timing of meals, supplements, and any other medications
• The amount of water you drink
• Any foods or drinks that seem to affect symptoms
• On times when symptoms are well controlled
• Times when symptoms start to appear or off times occur
• The amount of sleep you get and how often you exercise
• The amount of time spent outside
• Any symptoms you notice specifically during the day or night

This information can help your healthcare provider offer more accurate care. “After living with Parkinson’s disease for five years, I started to keep a journal,” explained one member. “I took my journal to the doctor last week. Just looking through, he could see if any adjustments were needed.”

Making the Most of On Time

Once you get a sense of when your off times may occur, you can better plan your day. The goal is to take advantage of on times when your symptoms are well controlled or predictable. This means planning important events and bigger tasks for when medication is working well.

How To Plan Your Schedule

When planning your day, consider your meals, medication timing, sleep, and time spent outdoors. Also keep in mind that on and off times may change as Parkinson’s progresses, so continuing to track changes can be helpful.

Consider incorporating the following elements into your schedule:

• Timing meals for best medication effectiveness
• Getting sunlight and physical activity early in the day if possible
• Keeping a regular sleep schedule
• Limiting drinking before bedtime
• Working with your healthcare team on your medication timing

Members note that medication timing, when done in coordination with your healthcare provider, can give you the flexibility you need and improve your quality of life.

After changing the timing of their medication, one member said: “I managed to get out to the local pool for a water exercise class. I don’t usually manage evenings. But have had my meds changed around, and they are giving me an extra lift now in the evening.”