Article written by
Kelly Crumrin

Most people who begin Levodopa treatment for Parkinson’s can get several years of near-complete relief from symptoms and few side effects. After several years on Levodopa, it is common for symptoms to become harder to manage and more medication to become necessary. As Levodopa loses its effectiveness and dopamine levels rise and fall, people living with Parkinson’s notice “off” times when medication isn’t working, as well as motor fluctuations — changes in their ability to move. In some people, motor fluctuations are accompanied by dyskinesia, a complication of dopamine agonist therapy that causes involuntary and abnormal movements such as twisting, writhing, and jerking.¹

What Is “Off” Time Like?

For people living with Parkinson’s, “off” episodes can impact quality of life and make the difference between a good day and a bad one. Members of MyParkinsonsTeam report a wide variety of movement disorders and other experiences associated with “off” time:

• “My gait gets really bad, hand tremor returns, and tics in my legs keep me from sleeping.”
• “The medicine wears off and I can't move.”
• “When my Sinemet wears off, my left leg is dragging and I’m more off-balance.”
• “When my medicine starts to wear off, I feel extremely fatigued with shortness of breath.”
• “Low to no energy, difficulty talking, and muscle stiffness.”
• “I get squinting in my face when the medication wears off.”
• “Large amount of pain in my ‘off’ periods.”
• “My toes curl up when I am ‘off.’”
• “Urinary incontinence during my ‘off’ periods.”

Days without “off” time are celebrated by MyParkinsonsTeam members. When one member shared that she had not experienced any “off” periods that day, another responded, “Any day without ‘off’ time is a GREAT day! I wish you many more! ❤” Another member described her day, saying, “It’s been a good day. Productive. Almost no ‘off’ time. Blessed!”

The good news is that “off” time can be managed. There are steps you can take to minimize “off” time and get more out of “on” time.

“Off” Time Can Be Managed

Your doctor can recommend medical management approaches, such as changing your medication dosage or dosage schedule, or taking Levodopa in a different way. They may also prescribe add-on medications such as Azilect (Rasagiline) or Gocovri (Amantadine), the only medication clinically proven to reduce both dyskinesia and “off” time.

However, there are many steps and lifestyle changes you can try to manage “off” time at home.

Nutrition and Mealtimes

In the early stages of Parkinson’s, when you first begin taking Levodopa, taking medication with meals may not cause problems. But for some people with Parkinson’s, taking pills with meals can lower the medication’s effectiveness or cause it to wear off sooner. These tips for scheduling meals and doses may help:²

• Try taking medications at least 30 minutes before or 60 minutes after a meal.
• Eat any high-protein foods such as meat, fish, cheese, eggs, and soy later in the day, when “off” time may be less of a concern. Protein competes with Levodopa during the digestion process.
• If you take iron supplements, take them two hours before or two hours after taking Levodopa. Like protein, iron can compete with Levodopa for absorption.

Many MyParkinsonsTeam members find scheduling meals around medication helpful in avoiding “off” time. 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.”

Exercise

Although it cannot prevent or reduce “off” periods, exercise can improve symptoms experienced while you’re “off.” Exercise is beneficial for people living with all stages of Parkinson’s. It has been shown to increase strength and agility, improve walking and balance, and overcome freezing and gait problems. Good types of physical activity for people with Parkinson’s include:³

• Walking on a treadmill
• Riding a stationary bike
• Yoga
• Tai chi, a gentle martial arts style
• Dance and incorporating music into activity
• Gait training and other types of rehabilitative physical therapy

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

Stress Management

Experts acknowledge that stress can exacerbate Parkinson’s symptoms. “Stress makes all the PD symptoms worse,” confirmed a MyParkinsonsTeam member. Finding better ways to manage stress may make it easier to cope with “off” time and improve your well-being. Stress-relief techniques might include:⁴

• Breathing exercises
• Massage therapy
• Meditation
• Cognitive behavioral therapy (CBT), a type of psychotherapy aimed at changing harmful thought and behavior patterns

MyParkinsonsTeam members often share what helps them relax and let go of stress. “I started going to an acupuncturist, and that helped immensely in my sleeping and overall relaxation,” said one member. “Try coloring,” said another in response to a member suffering from stress. “It seems to help me calm down.”

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 are experiencing. Keep notes in your journal about:⁵

• When you take Parkinson’s medications
• The timing of meals, drinks, supplements, and any other medications
• Whether certain foods or drinks seem to affect symptoms
• “On” times when symptoms are well-controlled
• When symptoms appear, and which symptoms you notice specifically during the day or night

This information can help your doctor better understand your motor fluctuations and provide accurate health care. “After living with PD for five years, I started to keep a journal,” explained one MyParkinsonsTeam member. “I enter the day and time I take my meds. On bad days, when I can take an extra dose of my PD meds, the extra med is in red. On good days, all my times are in black. I took my journal to the doctor last week. Just looking through, he could see if any adjustments are needed. He encouraged me to keep it up!”

Making the Most of “On” Time

Although there are many approaches to managing “off” time, it often becomes harder to control motor fluctuations over time. Once you get a sense of when your “off” times are likely to occur — possibly with the help of a motor symptom journal — you can better plan your day. Take advantage of “on” times when symptoms are well-controlled to be active, and try to make sure “off” times happen at times when it matters less.

Each person’s daily schedule will look different based on when “off” time occurs — which may be as a dose of Parkinson’s medication wears off, in the morning before the first dose, or while waiting for a dose to take effect. It may also depend on other medications you take, whether for Parkinson’s or another medical condition.

As you make your schedule, take into account:⁶

• Timing meals for best medication effectiveness
• Getting sunlight and physical activity early in the day if possible
• Keeping a regular sleep schedule
• Minimizing drinking before bedtime to avoid needing to get up to urinate
• Taking any sedating medication later in the day, closer to bedtime

For some MyParkinsonsTeam members, the morning is peak “on” time. “Best time for me is early in the morning,” wrote one member. “I clean house, do yoga, then have a big breakfast at about 6:30.” Another shared, “Walked three miles this morning. If I don't walk in the morning, by the afternoon I'm spent! No energy!”

Afternoons bring fewer symptoms for others. “Does anyone else consistently feel better in the afternoon, particularly late afternoon?” asked one MyParkinsonsTeam member. “Yes, afternoon and early evening are good for me too,” another replied.

Another member celebrated a change in her dosage schedule that allowed her to attend an evening activity. “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.”

Regular “on” and “off” times may change over the course of an individual’s Parkinson’s disease. But if you can identify a pattern, make the most of your “on” time.

More Tips From MyParkinsonsTeam Members

Managing “off” time is a popular topic of conversation on MyParkinsonsTeam. Members often ask for recommendations on what has worked for others. Here are a few tips they’ve shared:

• “I use CBD oil [cannabidiol], and no more tremors.”
• “I have been up and about with renewed energy. I'm sure it is due to the vitamin B12 supplements I started taking again.”
• “I started taking a half-teaspoon of Mucuna pruriens last week, resulting in a sudden burst of energy and a significant reduction in symptoms.”

Most complementary treatments, such as nutritional supplements, have not been studied for safety or effectiveness in clinical trials. Always check with your doctor before trying new supplements or alternative treatments. Some can cause dangerous interactions and may even worsen symptoms.

Here are some question-and-answer exchanges on ways to manage “off” time:

• “Does eating protein close to taking Sinemet reduce the efficacy of the medication?”
• “If you are taking Carbidopa-Levodopa (Sinemet) could you please share your pill schedule with me?”

Here are some recent conversations about managing “off” periods:

• “I just dread the evenings because I get dyskinesia after dinnertime and can’t settle myself.”
• “Anyone have any advice on foods that have helped?”

Do you or your loved one struggle with “off” times when medications stop working? What works to help manage “off” periods? Share tips in the comments below or post on MyParkinsonsTeam.

References

1. Managing PD Mid-Stride — Parkinson’s Foundation
2. Diet & Nutrition — The Michael J. Fox Foundation for Parkinson’s Research
3. Parkinson Disease — Penn State Hershey, Milton S. Hershey Medical Center
4. Stress Management for PD — Parkinson’s Foundation
5. Motor Symptoms — European Parkinson's Disease Association (EPDA)
6. Parkinson’s Disease and Sleep — SleepFoundation.org

Kelly leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.