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Do your Parkinson’s disease symptoms return between doses of medication? You may be experiencing motor fluctuations, which can gradually develop after years of treatment. Motor fluctuations are common as Parkinson’s disease progresses, but you can work with your neurologist to find new treatment options that manage your symptoms better.
In this article, we’ll explain what motor fluctuations are, why they develop, and how they can be treated. Every person is different, so your doctor will tailor a plan that works best for you.
Motor fluctuations are changes in how well you move as your medication — usually levodopa/carbidopa — stops working well at the current dose.
The brain needs a chemical called dopamine to help movement. In Parkinson’s disease, the brain gradually stops producing dopamine, leading to symptoms such as slowed movement, tremors, and rigidity (when muscles feel stiff or resistant to motion).
At the early stage of Parkinson’s, just a few dopamine-producing cells are affected, and symptoms may be mild. Levodopa therapy helps by giving the brain the building blocks to make more dopamine. However, as the disease progresses and more cells are lost, the initial dose isn’t enough to relieve symptoms. Motor fluctuations are often a sign that the current dose is wearing off more quickly, so it may be time to adjust your treatment.
Motor fluctuations can also include dyskinesia, a movement disorder that can affect the face, arms, legs, or trunk. These involuntary movements can look like jerking or writhing, and some people also feel muscle spasms. Dyskinesia isn’t one of the symptoms of Parkinson’s disease — it’s a side effect of levodopa (often called levodopa-induced dyskinesia).
Over time, brain cells may become more sensitive to changes in levodopa levels. This can cause Parkinson’s symptoms to return when the levodopa wears off and dyskinesia to appear when levels peak. Treatment adjustments can help manage both.
As you develop motor fluctuations, you may notice periods when your medication is most and least effective. These are also called “on” and “off” times. Your “on” time is when medication helps your body ease movement symptoms. “Off” time is when the effects wear off and symptoms start returning.
According to the American Parkinson Disease Association, “on” and “off” times can be either predictable or unpredictable.
Predictable motor fluctuations include:
Unpredictable motor fluctuations include:
Members of MyParkinsonsTeam have described how challenging it can be to manage “off” times. “It’s one of the hardest parts of living with Parkinson’s because we need to time our activities around our medication schedule,” wrote one member. “I don’t mind being ‘off’ when I don’t have much to do, but I need to be ‘on’ around my family or during meetings.”
Certain factors may increase the chance of developing motor fluctuations.
Many MyParkinsonsTeam members experience motor fluctuations as their disease progresses. “My first ‘off’ time made me feel afraid. I’ve learned to be kinder to myself,” one member shared.
If you need more support, ask your doctor about mental health resources that can help.
Motor fluctuations can greatly affect your quality of life, but you can work with your healthcare team to reduce “off” time and find a treatment plan that works for you. They may suggest changing your diet, adjusting your treatment plan, or trying certain procedures.
Some clinicians may suggest changing your diet or eating schedule to promote better medication absorption in your gut. For example, they may suggest taking levodopa on an empty stomach or avoiding protein-rich meals near your dose time.
Adjusting your medication dosage is often the first step to managing motor fluctuations. For example, your doctor may suggest taking your medication more often. Finding the right schedule can take some trial and error, so regular follow-up with your doctor as you track symptoms is important.
If swallowing pills isn’t working well anymore, your doctor may suggest alternative delivery methods such as:
Several types of drugs can help manage motor fluctuations, either on their own or alongside levodopa. Depending on your symptoms and a drug’s potential side effects, your doctor may suggest one of these options:
Your doctor may recommend trying focused ultrasound to help restore movement. This noninvasive procedure uses ultrasound waves to target the brain area causing symptoms. The waves create a small lesion that blocks abnormal brain signals and helps restore smoother movement.
Deep brain stimulation (DBS) is a surgical option that may help reduce motor fluctuations. Electrodes are placed in the brain area that controls movement, and they connect to a small device (called an implantable pulse generator) implanted under the skin in the chest or abdomen. When this device is activated, it blocks abnormal signals to improve motor control.
One MyParkinsonsTeam member shared their experience with DBS: “I wasn’t sure if I wanted to be awake during surgery, but I’m so glad I was. The moment they touched the correct spot, the tremors stopped, and I felt at peace.”
On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.
Have you been experiencing motor fluctuations lately? Let others know in the comments below.
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