Most people have the same routine every morning: they wake up, open their eyes, and get out of bed. Now imagine waking up and opening your eyes, but not being able to get out of bed. Your arms and legs won’t move.
This was the morning routine for Mike, who has Parkinson’s. When he woke up, he couldn’t move his arms and legs. It felt like they were tied or wrapped up. Without assistance from his wife Gail, Mike couldn’t get out of bed or perform the basic tasks of putting on his pants and buttoning his shirt. Gail also had to help Mike into the living room, where he would sit and take his Parkinson’s medication. Mike sat there, sometimes for up to an hour, waiting for the pill to take effect.
Mike was diagnosed with Parkinson’s in 2007 and began taking oral Parkinson’s medication 2 – 3 times a day to manage his symptoms. After a while, he began experiencing symptoms more frequently, and his dosage was increased to every 3 hours. But sometimes he still experienced symptoms before his next pill was due.
About 40% of the nearly 1 million people in the United States living with Parkinson’s report that within 5 years of starting oral Parkinson’s medication, it starts wearing off before the next scheduled dose. This means the time when the medication controls their symptoms gets shorter, causing their symptoms to recur sooner than expected.
This is known as “return of symptoms,” and approximately 400,000 people with Parkinson’s experience return of symptoms (sometimes referred to as “off” periods). This can take the form of motor (movement-related) symptoms, such as tremor, rigid muscles, and slowness of movement (bradykinesia), as well as non-motor symptoms, such as anxiety, fatigue, and irritability.
In an online survey of more than 3,000 people with Parkinson’s conducted by the Michael J. Fox Foundation, nearly 70% said they experienced return of symptoms at least two times each day.
When people first start taking Parkinson’s medication, they may still have some of their own dopamine from dopamine-producing cells. Because of this, their response to medication is much more predictable. However, they still may experience some return of symptoms, and they might simply adjust their plans around them. But as the disease progresses, more dopamine-producing cells die off. After five or more years on PD medication, return of symptoms becomes harder to predict, and people may cancel activities for fear of being in a public place or unfamiliar setting during these periods.
Mike was still working when he was diagnosed with PD, and initially just tweaked his schedule to coincide with periods of symptom return. He made sure he had time to get to his next appointment, take his next dose, and have it take effect before he met with customers. But as the periods became less predictable, Mike developed anxiety, as he spent more and more time planning for return of symptoms.
Gail describes how Mike’s anxiety became a real problem, as he grew more concerned about the medication wearing off too early. He lost interest in visiting friends or attending events, and felt less comfortable going out and more comfortable staying at home. Mike’s world started to shrink.
As Mike grew more dependent on Gail and she spent more time at home, her world also started to shrink. As people with Parkinson’s become more reliant on their care partners, it’s not uncommon for the care partners to experience feelings of depression, frustration, and being overwhelmed, similar to those experienced by people with Parkinson’s.
If you think someone you know may be experiencing return of symptoms, the best advice you can give them is to talk to their doctor. Also, ask them to start keeping track of the symptoms they experience and when they experience them. They should think about their daily activities – work, hobbies, etc. – and make a note if they experience return of symptoms during any of them. It also may be helpful for them to enlist the help of friends and family members and ask them what they observe when symptoms return. Mike said Gail often noticed things he didn’t realize were happening.
Here are some questions to help frame the conversation with the doctor:
- What medications are available for return of symptoms?
- What benefits were shown in clinical trials?
- What were the side effects of the medications?
- Can I take the medication by itself, or will I have to take multiple medications?
- Are there pre-existing conditions that might prevent me from taking the medications?
- Can I take the medications in conjunction with current medication(s) for other conditions?
- Will my dose(s) have to be scaled up over time?
There are medications to help manage return of symptoms. The more information that people with Parkinson’s and their care partners can share with their doctors, the more the doctors can help find treatment options that are right for them.
This article was contributed by Acorda Therapeutics.