Most people who begin levodopa treatment for Parkinson’s disease can get several years of near-complete relief from symptoms with few side effects. After several years on levodopa, however, it’s 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, some 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.
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:
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.
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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 rasagiline (Azilect), amantadine (Gocovri), or apomorphine (Apokyn), which can reduce “off” time and dyskinesias. Other treatment options for Parkinson disease, such as deep brain stimulation (DBS), can also reduce “off” time.
However, there are many steps and lifestyle changes you can try to manage “off” time at home.
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:
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.”
Talk to a dietitian if you’re interested in making changes to your diet.
Although it cannot prevent or reduce “off” periods, exercise can improve symptoms among people living with all stages of Parkinson’s. It has been shown to help individuals with PD increase strength and agility, better manage the disease, and improve quality of life. Good types of physical activity for people with Parkinson’s include:
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 until the new meds start working,” said one member.
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:
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.”
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:
This information can help your health care provider 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!”
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:
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. If you can identify a pattern, make the most of your “on” time.
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:
Most complementary treatments, such as nutritional supplements, have not been studied for safety or effectiveness in clinical trials. Always check with your health care team before trying new supplements or alternative treatments. Some can cause dangerous interactions and may even worsen symptoms.
On MyParkinsonsTeam, the social network for people with Parkinson’s disease and their loved ones, more than 90,000 members come together to ask questions, give advice, and share their stories with others who understand life with the condition.
Do you have any tips to help improve “off” time? Share your experience in the comments below, or start a conversation by posting on your Activities page.