Understanding sleep problems in Parkinson’s

Sleep is fundamental. It’s often described as a way to let the body and mind recharge. There’s even evidence that sleep allows important repair and waste removal processes to happen inside our cells to ensure they can function properly. So it’s unsurprising that for those who experience difficulties sleeping, this can have a huge impact on their daily activities.

Parkinson’s has many symptoms, ranging from the more common and well recognised movement symptoms, such as tremor, to the symptoms that some people with Parkinson’s and even professionals may not even realise are associated, such as trouble sleeping.

Sleep problems are known to be a symptom of Parkinson’s, and people can experience them at any point in their condition. From excessive daytime sleepiness to interrupted sleep at night.

Further to this, these problems can be exacerbated by medication wearing off overnight, leaving people feeling stiff and slow in the early morning. This is also known as “early morning off”, which can be debilitating for many people with Parkinson’s.

In this blog, we explore an example of research looking to better understand these symptoms to help find a way to tackle them.

United towards better treatments

Researchers from a biotech company, Clexio, are dedicated to developing new drugs and novel treatments for neurological conditions. They are in the process of developing a potential new treatment that aims to help with sleep problems and early morning off in Parkinson’s. They wanted to understand more about these issues from the perspective of people with Parkinson’s to ensure their research is aligned with the needs of the Parkinson’s community.

With the help of our involvement team at Parkinson’s UK, the researchers put together a survey to help capture people’s experiences. The survey was reviewed by two groups of dedicated Parkinson’s UK volunteers before being shared with people with Parkinson’s.

Dr Elijahu Berkovich, Head of Emerging Science and Innovation at Clexio, shares what they wanted to achieve through the survey.

More than a bad night’s sleep

Insights from the sleep survey

396 people with Parkinson’s shared their experiences.

A range of sleep problems are considered to be associated with Parkinson’s

Survey respondents were presented with a list of common sleep complaints and were asked to select up to 3 which have the most significant impact on their life. The list below shows the percentage of people who selected each complaint.

• 52% waking up frequently
• 45% difficulty turning in bed
• 32% leg movements
• 29% nocturia (frequent urination at night)
• 27% daytime sleepiness
• 27% vivid dreams, sometimes acted out (REM sleep disorder)
• 26% difficulty falling asleep
• 24% feeling tired when waking up in the morning
• 7% nightmares
• 4% sleep attacks (falling asleep suddenly and without warning)
• 2% sleep apnoea (pauses in breathing while sleeping).

Sleep problems appeared to affect people of all ages and genders, and at different points during the condition.

Early morning off

• Over half of respondents shared that they experience periods of early morning off, where roughly a third of these people experience this every morning and more than half experience this at least 3 times a month. It seems to last longer in those who experience it more frequently.

"I am very stiff when waking & then find it hard to 'get going'."

Survey respondent

Sleep problems have a significant impact on quality of life

Respondents shared that the biggest impact of sleep problems was they were left feeling tired and lethargic. Some also mentioned the impact on their ability to focus.

"I am tired most of the day and find it difficult to concentrate. I am still working and have to constantly check myself to make sure I am not making mistakes."

Survey respondent

There is currently a lack of support and treatment options

• 70% of respondents had spoken at least once to a healthcare professional about sleep problems, but less than a third of these discussions were initiated by healthcare professionals.
• Just over a quarter of respondents were taking medications to help with sleep problems but very few were taking Parkinson’s specific medications. This may suggest that sleep problems are currently being treated as a separate issue to Parkinson’s.
• People seem reluctant to take sleeping tablets, suggesting that better medication options for people with Parkinson’s still need to be investigated.

When people were asked what they wanted from a drug treatment that aims to improve their sleep problems, they really just wanted a good night’s sleep.

"[I want] something that aids a good night’s sleep with no drowsiness the following day."

Survey respondent

Sleep tips from survey respondents

• Exercise "helps me go to sleep, say more than an hour of brisk walking or an hour at the gym."
• Bedtime routine "I find a bedtime routine helps most with getting to sleep. I don’t go to bed too early, and must read for a while before trying to settle down."
• Specialised beds and bedding "I have a 'silky' sheet underneath me which helps me to turn over. I also have some bars which stop me falling out of bed."

Read more information and advice about sleep and Parkinson's.

The main takeaways from the survey

• Parkinson’s can cause problems sleeping and many experience early morning offs.
• The topic of sleep needs to be better communicated and discussed as part of an individual’s management plan for their Parkinson’s.
• There is an unmet need for a Parkinson’s specific treatment for sleep problems.

Investigating a new treatment for sleep problems

Dr Berkovich said:

"Parkinson’s is a condition that impacts people 24 hours a day, 7 days a week, treating the night is as important as treating the day. You could imagine that better sleep could lead to better management of Parkinson’s and efficiency of treatment during the day."

"It’s only on the odd occasion when I have a really good night’s sleep that I realise how much better my Parkinson’s (and everything else) is the following day."

Survey respondent

Clexio is now using this information to help shape their plans for an upcoming trial to test a potential new treatment (CLE-600) for sleep and early morning off in people with Parkinson’s.

CLE-600 is currently an investigational medication that has not been approved for commercial distribution.

This blog is not meant as health advice. You should always consult a qualified health professional or specialist before making any changes to your medications or lifestyle.

Are you a researcher who wants to work with Parkinson’s UK to involve people with Parkinson's in your research? Find out more about Patient and Public Involvement in research. 

Are you someone who has Parkinson’s, or a friend, carer or family member of someone with the condition? You can help shape research in a variety of ways by getting involved with research today. Find out more about our research volunteering opportunities.

Thanks to Dr Natasha Ratcliffe and Clexio for their help with this blog.