Sleep better with Parkinson’s

Basic tips for a better experience in bed.



Solutions to getting in and out of bed

Parkinsons UK partnershipIf you have Parkinson’s, you may experience movement problems. This may mean that you cannot get in and out of bed independently and hence rely on someone else for help.

If you find getting in and out of bed difficult, there is a range of different products available from Theraposture that will help you. These include the Theracare Leg Lifter, Adjustable Beds and the Rotoflex range of turning bed systems. Telephone us for further details on: 0800 834654.

Dependent on the level of powered assistance you need, owning a Theraposture product will maximise your safety and confidence when getting in and out of bed. They will allow you to use your bed on your own terms with less, or no support, required from a relative, friend or carer. This can result in significant time and care cost saving and greater independence through personal enablement.

Theraposture products have been specifically designed to help users with Parkinson’s. You can choose from:

Theracare Leg Lifter

woman using machine to lift legs into bed

The Theracare Leg Lifter from Theraposture has been designed to enable users with Parkinson’s to safely and easily get their legs into bed. This simple daily task can prove difficult or even impossible for many who may have lost muscle strength, general mobility and have balance issues.

  • Assistance with positioning legs into the middle of the bed
  • Fast and simple fitting – it only weighs 12kg
  • Left and right handed versions for each side of the bed
  • Proven safety, stability and reliability from the market leader
  • An ergonomic, aesthetically pleasing design
  • Capability for lifting heavy and swollen legs
  • A 14-day Suitability Guarantee

Difficulties turning over in bed

Turning over in bed can be difficult for people with Parkinson’s because of rigidity. However, if you choose a Theraposture bed there are many accessories that can be added to assist you. These include bed side rails, lifting poles and grab handles which can be positioned in a variety of locations for easy access. By holding onto these strong and ergonomic fixtures you will be able to gain greater leverage so turning in bed requires less strength and effort.

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Using satin pyjamas or satin sheets may also help. The shiny material can help you to turn over, but try not to use satin sheets and satin pyjamas at the same time. Together, they can increase the risk of sliding out of bed too quickly.

If you use satin sheets or panels, make sure there is an area of friction either at the end or sides of the bed, so you can get some grip. Your Parkinson’s nurse or occupational therapist should be able to give you advice.

There is no specific bed or mattress recommended for people with Parkinson’s. What is best for you depends on your individual needs and preferences however we have one of the widest range of specialist mattresses available. Telephone one of our specialist advisors to discuss your individual needs on 0800 834654.

You can only truly decide that a mattress and bed is ideal for you by experiencing it at home. This is why we offer a 14-day Suitability Guarantee which provides an
opportunity to try the bed without the risk of owning a product that is not right. If you feel you need a new bed, mattress, or aids to help you get in and out of bed, speak to us and we can discuss further whilst liaising with your Occupational Therapist. Provision of beds can then be discussed either through Statutory Services, case management or via a private purchase. If you meet the criteria in terms of a registered disability, then you are exempt from paying VAT.

Increasing your time asleep

Reducing the amount of time, you spend in bed awake can help strengthen or re-establish the ‘triggers’ for sleepiness.

If you are not sleeping, it may be tempting to stay in bed until you fall asleep. This may help in the short term however it is not effective in the long run. As you spend longer in bed, sleep becomes more ‘broken’ and restless with the risk of insomnia symptoms continuing. Even if you don’t think you’re spending too much time in bed, there is no reason to stay in bed if you’re not asleep.

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Leave time to unwind

Try to leave at least an hour to unwind before you go to bed. Try to do any activity, such as reading, watching television, listening to music or talking, before you go to bed. When it is time for bed try not to think too much about the day or your plans for tomorrow. Try to set aside time earlier in the evening to think about any issues.

It may be helpful to write down any worries or concerns during this time and then plan how you’ll deal with them at a later date. There isn’t anything wrong with thinking about the things going on in your life and trying to solve problems, but try to put any concerns or negative thoughts to one side before you go to bed.

Go to bed only when sleepy

First, it’s important to be aware of the difference between being tired and being sleepy:

  • Tiredness is a feeling of exhaustion – this does not always involve the need to sleep
  • Sleepiness means being ready to fall asleep. Signs of sleepiness may include yawning, having ‘heavy’ eyelids or sore eyes, or even feeling a little unsteady.

Waiting to be sleepy before going to bed can help you fall asleep faster. Going to bed too early can give you time to worry (about problems or being unable to fall asleep) and that, of course, can keep you awake.

If you don’t fall asleep, try to get up. Lying in bed trying to get to sleep can make you feel anxious or frustrated. So, try getting up after about 20 minutes, go to another room and do something quiet and calm, such as reading. If you own a Theraposture adjustable bed or Rotoflex, change your position in bed or use the powered functionality to exit the bed in a controlled and relaxed manner.

Go back to bed only when you feel sleepy. Try not to leave your bedroom only to fall asleep in a chair or on the sofa as this doesn’t help to build the link between your bed and sleep. A Theraposture bed will make getting in and out easier so the temptation to try and sleep in a chair can be avoided.

You may have to get up several times during the night if you can’t fall asleep at bedtime or you wake during the night and can’t get back to sleep. This can be difficult at first, but if you keep trying with this method your mind will soon link your bed and bedroom with getting to sleep quickly.

One common problem is going back to bed too soon after getting up. Some people think that if you stay up too long, you will never get back to sleep. In fact, the opposite is true: the longer you stay up, the quicker you fall asleep when you go back to bed.

You may not feel like leaving the comfort of your bed, particularly if you think you could be cold or bored while waiting to get sleepy.

If this is the case, try keeping a warm blanket or dressing gown near your bed, have a comfortable place to sit in the house and keep things to do there. These shouldn’t be so interesting that your mind becomes too active, but not so boring that you have no motivation to get up.

Some things you can try if you need to get up are:

  • reading
  • watching television
  • listening to the radio
  • doing a crossword puzzle
  • knitting
  • writing

Things to avoid:

  • doing housework or cleaning
  • taking a walk or exercising
  • working on a computer or tablet
  • worrying
  • relaxing on the bed or in a chair

Use an alarm clock

Set an alarm clock and if you are able to, get out of bed at roughly the same time every morning. Do this if it’s a weekday or the weekend. It will help reset your body clock and restore your sleep–wake pattern.

It’s common to ‘lie in’ to make up for lost sleep. This can help in the short term, but it’s best to stick to a regular routine.

Try not to nap during the day

For many people, napping during the day affects their quality of night-time sleep, and reduces the amount of deep sleep they get. Some people with Parkinson’s find they need a nap during the day.

Certain medication, for example, can make people very sleepy. If this is the case, try to nap for a short time only, for around 20 minutes. This should not have too much of an impact on your night-time sleep. However comfortable your Theraposture bed is, set an alarm clock to wake you after 20 minutes if you’re worried you’ll sleep for longer!

Sleep conditions

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Akinetic pain

Akinetic pain is caused by a lack of movement and may interfere with your sleep. The symptoms may include severe stiffness, pain in muscles and joints, headache and, sometimes, pain in your whole body. Speak to your GP, specialist or Parkinson’s nurse to find out about ways they can help you to deal with this type of pain.

Nocturia

Nocturia is waking up at night with the urge to urinate, which can be a common problem for people with Parkinson’s. If this urge happens during an ‘off’ period (when your medication isn’t fully active), some people find that they can’t control their bladder and can’t get to the toilet in time.

There are other possible causes of nocturia, such as a bladder infection.

Some medications can cause nocturia, for example some anti-depressants or medications for high blood pressure.

If you are experiencing this problem, speak to your GP, specialist or Parkinson’s nurse to work out the cause of your nocturia. They can suggest ways to treat and manage the issue. You may also be referred to a continence advisor – a specialist nurse who assesses and manages incontinence.

If you are having problems sleeping because of an increased urge to pass urine at night, you can try the following:

  • For bladder problems, it is important not to cut down too much on the amount of fluid you drink. That may leave you dehydrated and may make the bladder more irritable. But try and reduce the amount you drink in the evening and make sure you have been to the toilet before you get into bed.
  • Avoid drinking alcohol or caffeine-containing drinks, such as coffee and tea, in the evening, and try to limit these during the day generally.
  • Use bed protection, such as absorbent sheets and bed pads, just in case. Appliances such as handheld urinals or sheaths may also help you if you are having problems getting to the toilet.

Low blood pressure and getting out of bed

A sudden or abnormal fall in your blood pressure (hypotension) when standing up quickly can make you feel lightheaded. For example, when getting out of bed to go to the toilet.

If this happens, take care and move slowly. This is where ownership of a Theraposture Rotoflex turning bed can provide a huge difference. As this solution rotates and profiles you and your mattress in a fully upright seated position, with your feet on the floor, a sit-to-stand transfer is safer. This is enhanced by the Rotoflex’s vertical lift in the seated position which means you have a higher level platform to leverage from without being tipped forward. This functionality means your ‘nose remains
behind your toes’ until you feel confident and safe to stand. Inferior copies of the Rotoflex or rise and recliner chairs have a different mechanism which will slope the seating surface forward which could increase the risk of falls if you have balance and strength inconsistencies.

Dystonia

Dystonia is involuntary contractions of the muscles in the toes, fingers, ankles or wrists that cause the body to go into spasm. It may, for example, cause the feet to turn inwards, or toes to curl downwards.

It may feel like a painful cramp and it often occurs in the early morning, or at night as the effects of your Parkinson’s medication wears off. If you have any of these symptoms, your medication may need to be altered. Speak to your health professional for advice.

Restless legs syndrome and sleep

Restless legs syndrome is an overwhelming desire to move your legs when you’re awake. It usually happens during the evening and at night. Contact with bedclothes may feel uncomfortable. Rarely, your sleep may be disturbed because you have produced more dopamine than you need due to your Parkinson’s medication. The effect is similar to restless legs syndrome, but the abnormal involuntary movement (dyskinesia) is due to your medication.

Periodic leg movements and sleep

‘Jumping’ of the legs, arms or body during sleep is not uncommon in Parkinson’s. It’s known as ‘periodic leg (or limb) movements’. Some people get it with restless legs syndrome, but it can happen on its own. It responds well to treatment with levodopa and dopamine agonists. Speak to your health professional for advice.

Other methods to tackle sleep issues

Using sleeping tablets alone is rarely an effective way of dealing with long-lasting sleep problems as they do not treat the underlying reasons that are causing your insomnia.

Scientific studies have compared the effects of sleep medication with psychological treatments, such as cognitive behavioural therapy (CBT). Sleeping tablets produce faster results than self-help treatments. But psychological treatments also produce more permanent improvements that can have lasting benefits for your sleep.

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Psychological treatments

These treatments may help you to manage your habits, routines and deal with insomnia. You may also be able to discuss your sleep problem with a psychological practitioner.

Ask your GP about being referred. Many treatments for insomnia look at making helpful changes to habits and feelings that may affect our sleep. These simple changes are:

  • spend less time in bed awake
  • go to bed only when you’re sleepy
  • keep to a regular bedtime and getting-up time
  • avoid worrying in bed

Remember that Parkinson’s varies from person to person. The symptoms you have and the rate it progresses are different for everyone. So there isn’t a ‘one size fits all’ solution to sleep problems.

But the ideas discussed here may offer some practical ways to help you get better sleep.

Excessive daytime sleepiness

This is also known as daytime hypersomnolence. Parkinson’s medications can cause excessive daytime sleepiness or sudden onset of sleep. This can be severe.

This may be more likely in people with later stage Parkinson’s who are on multiple medications. It can also occur when increasing medication, particularly dopamine agonists.

Excessive feelings of sleepiness during the day can also happen if you’re not getting enough sleep at night. The effect can cause people to fall asleep or doze off during normal waking hours.

In some cases, it can even lead to the sudden onset of sleep. This can be dangerous if you are doing certain things, such as driving or operating machinery.
Medication may help, so speak to your GP, specialist or Parkinson’s nurse.

Sleep apnoea

Sleep apnoea is a serious condition where a person momentarily stops breathing while asleep. This makes the person wake up, take a few breaths and go back to sleep again.

The person has no memory of this happening, as it’s so brief, but it disturbs their sleep.

Symptoms of possible sleep apnoea include loud snoring, choking noises while asleep or excessive daytime sleepiness. If you or your bed partner notice any of the symptoms, you should seek treatment from a sleep specialist.