By Charlotte Ackroyd
Recently, I was watching an episode of The West Wing, in which the President (played by Martin Sheen) has relapsing-remitting MS. The President complains of not being able to sleep and having long periods of insomnia. As a person with MS, I shouted at the TV, “Of course you have insomnia! You have MS!” This was not the conclusion in the episode, instead it was some kind of unresolved trauma from his childhood, but it did get me thinking.
Those of us with Multiple Sclerosis and Parkinson’s know that sleep can be one of the hardest things to get right. Sleep disturbance is something that those with Parkinson’s and MS have in common. Because of the role the brain plays in sleep, impairment of certain areas of the brain can increase the likelihood of having disordered sleep.
In Parkinson’s, sleep disorders are the second most common non-motor symptom, at a prevalence of around 64%. This prevalence increases to around 78% as the condition progresses. For Multiple Sclerosis, it is harder to ascertain a true percentage prevalence, as sleep disorders are under-recognised and underdiagnosed. However, the effects of poor sleep on both MS and Parkinson’s are well recognised.
Insomnia is common in both Parkinson’s and MS patients. Insomnia is often linked to the other symptoms that come with both conditions. Some of these symptoms are motor symptoms, chronic pain, spasticity, nocturia (frequent need to urinate at night), and depression and anxiety. These problems are often treatable and should be brought up with your GP, specialist or clinical nurse specialist. There is a worksheet by National Multiple Sclerosis Society (USA) which can help you assess your sleep and give you helpful information to provide to your clinical team. Although it is from an MS charity, it is also helpful for people with Parkinson’s (see information below).
Often basic sleep hygiene practices have decreased due to issues with both conditions. Look at making sure you have a set sleep and wake time, that you are relaxing and winding down in the last hour before bedtime and that your bedroom is cool, quiet and dark. All of this can help promote better sleep. Gentle, moderate exercise can also help improve sleep and it is something that our gym classes and physiotherapists can assist with.
Another common issue in both conditions is Restless Legs Syndrome. It’s defined as an uncomfortable feeling in the lower limbs that is made worse when resting or tired and relieved only by movement or sleep. Of course, with a restless feeling in your legs, it can be very hard to go to sleep. RLS occurrence in those with Parkinson’s is at around 15%, similar to the general population. It can begin occurring before or shortly after diagnosis, with prevalence generally increasing as the condition progresses.
Current research into numbers of those with MS affected by RLS suggests that the number is at around three times higher than in the general population. The current theory for this is that there seems to be an association with spinal cord involvement. However, it can be hard to find the true number of those with RLS, as neuropathic pain can feel very similar to RLS. The good news is that RLS and neuropathic pain are treated with similar medications. Mild RLS symptoms can also be self-managed, by massaging the affected limbs, taking a bath or by distracting yourself from the feeling through activity such as reading a book. All of these things can also lead to easier sleep. If these tactics are not giving you relief, then consult your GP, as it could be that medication is needed.
Those with MS and Parkinson’s are also shown to be at risk of Obstructive Sleep Apnea (OSA), a condition that causes the patient to stop breathing or gasp for air during sleep. It is hard to get an exact reading on how prevalent OSA is in either MS or Parkinson’s, but current research has it at around the same as the general population, or slightly higher. The reason for this difficulty is that the prevalence of OSA goes up in the general population as people get older anyway. However, despite this, the effect of the disrupted sleep that comes with OSA can have a greater effect on those with Parkinson’s and MS. OSA can also increase the chances of developing insomnia or trouble maintaining sleep, which can lead to “excessive daytime sleepiness”, fatigue and even narcolepsy, all of which could already be a problem.
If you believe you may have OSA, consult with your GP immediately, as untreated OSA can become a dangerous issue. It is now a better understood condition in general, and CPAP machines which fit over the nose to help regulate breathing, have become quieter and more efficient since they first started being used.
With Parkinson’s, there are another couple of sleep disorders which can make things hard for both the person, their families and carers. The first of these is Periodic Limb Movements (PLMs) which are repetitive movement, usually affecting the legs. PLMs prevent deep, restorative sleep and those affected are sometimes unaware that it’s happening. 80% or more of those who have RLS, also get PLMs.
The second of these disorders are called Parasomnias. The first type is NREM parasomnias, which groups together sleep walking, sleep terrors, and waking up agitated and confused. They are characterized by an incomplete arousal from non-REM sleep. Luckily, the prevalence of these parasomnias in Parkinson’s is fairly low at around 8% but can be disorientating and distressing for those who have them. There are treatments for NREM parasomnias, but it is best to consult your GP or specialist.
The second type is REM parasomnias, which includes increased nightmares and REM Sleep Behaviour Disorder (RBD). RBD is characterised by complex motor behaviours during sleep, where the person affected may be acting out a dream. RBD is present in around 30% of those with Parkinson’s and can sometimes precede the diagnosis of Parkinson’s. If the behaviour begins to become dangerous or violent, it is important to seek medical advice. Your Parkinson’s specialist nurse or consultant should be well versed in this kind of sleep disorder and should be able to help. The most important thing is to make sure you, your bed partner and your family are safe.
All of these sleep disorders have various treatments, but doctors will often avoid pharmacological treatments until they have looked into other solutions. Certain medications can exacerbate other symptoms or end up interacting unfavourably with other treatments. Some of these problems with sleep can also be side effects of medications people are already on, so it is best to consult your doctors about this.
When going into appointments to discuss something that can be extremely subjective, such as sleep, it is best to be fully prepared. Be specific with what issue you are wanting to bring up, have questions written down so you don’t forget them, and know exactly what you’re wanting from your doctor, consultant or specialist nurse. They might not be able to help you in the exact way you’re wanting, but knowing what you want makes things clearer for both parties.
National Multiple Sclerosis Society, Sleep Disturbance and Multiple Sclerosis, Abbey J Hughes PhD, http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Sleep_Hughes_2016.pdf
Practical Neurology, Fatigue in Patients with Multiple Sclerosis, Jonathan L Carter MD, https://practicalneurology.com/articles/2018-july-aug/fatigue-in-patients-with-multiple-sclerosis
Practical Neurology, Sleep Disorders in Patients with Multiple Sclerosis, Tiffany J Braley MD MS, https://practicalneurology.com/articles/2018-july-aug/sleep-disorders-in-patients-with-multiple-sclerosis
Frontiers in Neurology, The Treatment of Sleep Disorders in Parkinson’s Disease: From Research to Clinical Practice, Giuseppe Loddo et. al, https://www.frontiersin.org/articles/10.3389/fneur.2017.00042/full