Getting enough sleep can help us feel rested in mind and body, and generally feel better as we get through each day1.
But what happens to sleep for people living with motor neurone disease (MND)? Can the symptoms of MND be better managed to help with sleep?
Research finds that getting enough sleep can be very important for people living with MND. Sleep helps to provide relief and improve quality of life with MND2.
MND may make sleep difficult, however. For many people with MND, as the disease and consequent muscle weakness progresses, they experience problems that disrupt their sleep3, 6. Waking up frequently or having trouble getting to sleep then creates other sorts of strains and pressures, adding to the burden of the disease4.
Problems with sleep from MND affects carers and loved ones, too. Studies show that sleep plays a major role in the wellbeing and support needs of family, loved ones and others caring for someone living with MND5.
With the New Year well and truly underway, in our first blog for 2021 we looked at the evidence of what might help with sleep for people affected by MND. We provide some ideas and strategies for, hopefully, getting more rest and relief.
Every person living with MND experiences the disease differently, and there are many ways that its various symptoms can affect the quality of sleep. What prevents, or helps, sleep for one person living with MND may not be the same for others. Despite the individual nature of MND, scientists and clinicians have conducted research suggesting that that there are two major groups of symptoms from the disease that can disturb sleep:
Muscles weakness throughout the body generally gets worse as the disease progresses. Muscle weakness usually makes breathing difficult and causes a range of other problems, all of which can affect sleep, including muscle fasciculations (more commonly known as muscle twitches), cramps, pain and immobility2, 3.
Muscle twitches are involuntary and occur when tiny muscle fibres shrink and relax. Muscle cramps, like twitches, are also involuntary, but are different in that they are painful spasms of a muscle. For many people living with MND, cramps are more likely to affect lower limb muscles and get worse during the night4.
In addition to twitches and cramps, movement during sleep may become increasingly difficult2. For example, changing position in bed could require more help from carers. In some cases, restlessness in the legs is a problem with MND3.
With the difficulty in moving muscles and cramps during sleep, some people with MND may experience pain in various parts of the body. If pain disrupts sleep, the lack of sleep may in turn worsen pain2.
Sleep-related breathing problems with MND occur mainly due to the weakening of the respiratory muscles. As a result of nerve degeneration and weakness in the diaphragm and intercostal muscles, breathing may become shallower during sleep and carbon dioxide (CO2) can build up in the body2. The increase of CO2 causes frequent wakening and disturbed sleep.
Sleep apnoea, which is the temporary stopping of breathing while asleep, may be a problem for some people with MND as well6. Many people with MND have assistance for breathing overnight (e.g. non-invasive ventilation through a mask) to help them sleep well (see What can help).
The psychological symptoms associated with MND are another major area of MND symptoms that can disrupt sleep2, 7. Fear about the future, persistent feelings of sadness and worry, recurrent grief and similar stresses can all make the body agitated. When the body is agitated, it remains aroused and alert, and has difficulty relaxing. Both the physical and psychological symptoms of MND that disrupt sleep tend to do this by affecting the amount and quality of sleep, or what is also known as sleep disruption2. Sleep disruption with MND generally refers to instances where there is:
The sleep disruptions can lead to sleepiness during the day, increased fatigue and a reduced quality of life2. Headaches may also occur but are generally a more serious sign of CO2 build up in the body and should be checked as soon as possible by a health professional. As a result of the problems associated with sleep disruptions, people living with MND experience a greater burden from the disease. The burden reinforces the need for people living with MND to work closely with a clinical team about ways of best managing their sleep (see What can help).
Carers, loved ones and others who support and help people living with MND have reported difficulties from sleep disruption associated with MND, for the people they provide care to, and for themselves2, 5. These difficulties can make it harder for carers to manage their own health and wellbeing.
Care is critical to people living with MND. Most people will be receiving support from their health care team to manage their symptoms and disability and aged care services to support them with personal care. However, it is family carer, family and friends who will be supporting people living with MND on a day to day basis and overnight from diagnosis through to end of life5.
Providing care means also helping to manage sleep disturbances. People living with MND may need their carer to assist them with the use of medications, movement in bed, and the fitting of masks and other equipment used to help with breathing. The increased fatigue from lack of sleep may also mean that the person requires more support from their carer during the day. Some carers might find they need to provide help throughout the night, making it hard for them to get the sleep they need as well.
Carers tend to experience increasing levels of strain and distress as MND progresses5. People living with MND increasingly lose the ability to move, breathe and easily communicate, and often rapidly. The burden on carers providing support as MND progress may be significant, affecting their emotional and physical health. Anxiety, grief and depression can lead to insomnia and other sleep disturbances for carers, in addition to the physical fatigue and exhaustion they may feel.
Sleep disturbances with MND are common, and as with all symptom management, research suggests it is important for people living with MND to have regular assessments. Optimal symptom management and a palliative coordinated multidisciplinary team approach to care are crucial in managing the physical and psychological impacts of MND associated with sleep disturbances2. For people living with MND, it is important to speak with their neurologist, palliative care physician, physiotherapist, occupational therapist and other members of their health care team about what may help manage their sleep6. It can help to talk about:
Carers also have valuable options for support. Evidence suggests8, 9 that it can help carers to:
More research will also help. Scientists have recommended that we look to future studies for a better understanding of sleep and MND, and to shed light on the ways MND affects motor control and the respiratory system, and the way they disrupt sleep2.