Sleeping disorders after a brain injury (stroke) can be another problem you don’t need during your rehabilitation.

Lack of sleep has a negative effect on our cognition, mood, energy levels and appetite. The average person needs eight hours of sleep a night or will suffer from decreased concentration, energy and many other problems. These effects are multiplied many times by a brain injury.

Unfortunately, a brain injury can often lead to a sleep disorder. This can be hard to detect as people with brain injuries can also experience fatigue. Although some people may have problems with getting too much sleep, the usual sleep disorder is trouble sleeping at night followed by feeling drowsy during the day.

Causes of sleeping problems

After a brain injury many find it not only difficult to sleep, but they are very easily awakened, sometimes dozens of times a night. On top of this, they may find themselves unable to sleep at all around 3am, despite being desperately tired. Sleep will usually be very light, so the smallest noise brings the person instantly awake. Research suggests a major cause of disruptions or “sleep fragmentation” is a change in release of neurotransmitters in the brain during sleep.

There can be a variety of other causes for disrupting sleep. Discomfort from headache, neck pain or back pain will always make it hard to get to sleep. Depression is a common feature after a brain injury and people may find they fall asleep easily but wake up several hours before dawn, unable to sleep again. Anxiety and inability to handle stress are other common problems. Negative thoughts whirring through the mind will usually make it very hard to fall asleep also.

Sleep your way to recovery

Sleep plays its part in not only helping the brain to recover from injury, but in physical healing as well. In a Traumatic Brain Injury, there are often muscles damaged. During active sleep, the brain stem secretes hormones that in effect paralyse our muscles to prevent twitching. This can play a role in helping muscles to heal, but poor sleep will hinder this process.

Medication and sleep

There are medications that can assist with sleep problems. Some medications are designed to promote sleep but they are typically avoided by physicians who treat brain injury. Typically, the medication is taken a half hour before bedtime and assists with sleeping through the night. Sometimes this medication works too well and people sleep for 12 to 15 hours for the first two or three days.

Some people report side effects such as difficulty waking up in the mornings. Lowered sensitivity to some medications can also occur after extended use - reducing medication effectiveness. It is important to always seek information from your doctor before starting, stopping or changing any medication. Only use medications as your doctor prescribes, and always inform them of any preexisting conditions (e.g. Brain Injury or stroke).

Practical steps to good snoozing

Routine is vital for sound sleep. Go to bed at exactly the same time every night — even on the weekend. Do not vary this by more than 15 minutes. That may sound extreme, but if you go to bed at the same time and get up at the same time each day, your body will adjust to that pattern. Avoid caffeine and nicotine. These stimulants have a negative effect on the brain, and for some people may increase the likelihood of seizures.

Don’t get the body stimulated with exercise late in the evening. Make sure your bedroom is at the right temperature and that the room is very dark. This can be very important because light plays a critical role in your sleep pattern. Make sure it’s quiet as well. Talk with family members about respecting your need for a quiet environment.

So what about naps during the day?

Some find that afternoon naps are essential due to the cognitive fatigue from a brain injury. Afternoon naps, however, can disrupt your night time sleeping so it is important to experiment. It might be better to lie down and rest without allowing yourself to sleep.

When stress, anxiety and negative thoughts are involved, cognitive behavioural therapy can also help. Speak with your GP about seeing a Psychologist or Neuropsychologist who can help you out with this.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Using technology to aid in stroke recovery

StrokeConnections spoke to Southern Health speech pathologists Gabrielle Writer and Jaime Cosham share with us their thoughts on iPads as rehabilitation tools. Please note though, Gabrielle and Jaime say this is not the most suitable communication device for everyone. They recommend a speech pathology assessment before making an investment as iPads are not a “onesize- fits-all” piece of equipment.

How can iPads be used as a device for communication for stroke survivors?

iPads can be a fantastic option as a communication device. They are light weight and portable, affordable and very ‘in’ right now, making them socially acceptable. They allow non-verbal communication via email or messenger applications (‘apps’) for people who can write and spell. An app is a computer program that is downloaded onto your iPad or smart phone.

There are a large number of alternative and augmentative communication (AAC) apps available, ranging in cost from completely free to several hundreds of dollars. There is a variety of types of AAC apps, for example picture or symbol-based, where a word or phrase is spoken when a picture is selected; text to talk where the person writes or types in a word or phrase to be spoken, and combinations of both.

What role can they play in therapy?

Specific therapy apps can be used in individual and group therapy, and used for extensive home practice. Suitable apps can be used to provide the person with auditory and/or visual feedback, enable self-monitoring and measure progress.

There are a variety of great apps therapists can use: for rating/measurement improvements, as a fluency rater, sound level meter for measuring volume of voice, etc.

How have you found stroke survivors respond to using an iPad?

Many love it and have found the technology of the iPad itself quite easy to pick up, even if they have not had a lot of ‘technology’ experience. Feedback from clients has included that the iPad is ‘motivating’ and ‘enjoyable to use’. We have had reports of increased family involvement in a client’s home therapy practice, as all the grandchildren wanted to be involved with the iPad!

On the other hand, there are some people who have had difficulty using the touch screen aspect of the iPad due to problems with manual dexterity/ dyspraxia.

Kingston CRC client Margaret using the iPad with Southern Health Speech Pathologist Jaime Cosham.

Will they be accessible enough? Is the price restrictive?

The price is reasonable compared with other communication technology. There can be issues with the process of using iTunes for accessing and downloading the apps. The user definitely needs to have some degree of computer know-how and access to WiFi or another computer for this, or a support person who can assist them.

There is such a huge array of apps and this can be overwhelming and confusing. Again there needs to be someone with knowledge and experience involved to find suitable apps.

What are the benefits of this technology?

It can be modified to continue to meet each person’s needs if their condition changes It may enable increased social “connectedness” with email, video calling and access to the internet.

Other features are available to assist in activities of daily living include a calendar, alarm clock, daily reminder lists, calculator, and it can provide portable entertainment (music, videos, games, photos etc).

Stroke survivor Andrew Iselin is set to run the Gold Coast Marathon on Sunday 1 July and in doing so will break a world record. Here he shares with us his journey to Do it 4 Stroke.

My name is Andrew Iselin and I suffered a stroke in early 2009 when I was 17 years of age. My left vertebral artery was dissected and this caused the complete loss of movement to the right side of my body. I spent about two weeks in hospital where I tried to regain basic functions. After this I went into a rehabilitation unit where I spent about 6 weeks partaking in intensive rehab where I spent about an hour a day with the physios and occupational therapists, as well as constantly doing the exercises they gave me until I went to bed. I worked with them in learning to gain the function back in the right hand side of my body, where I learnt to crawl, walk, write, etc. Once I had exited the rehabilitation unit I was still visiting about twice a week until I started university midway through that year.

Since then I have been classified into athletes with a disability where I have competed three times at nationals with the hope of eventually making an Australian team for the 800m or 1500m events on the track. I did have my sights set on London 2012 but I came to the realisation that in order to make it I will have to train for longer and get more used to my disability. After my disappointment of not performing how I would have liked during the track season I was again looking over the world records for my classification which one-day I hope to be able to achieve. I decided out of interest to look at the marathon world record and when I did I realised that there had been no record set for my classification. This motivated me to set a world record for my classification. My training schedule has not changed greatly from what I would have been doing at this time of year in order to prepare for the next track season. I train 6 days a week, twice a day whilst completing three university subjects. The only difference now is I have picked up the kilometres so I will now do an average of 60km a week.

My main challenges facing me now when it comes to preparing for the marathon is making sure I listen to my body and don’t train to hard when I feel a small injury occurring. My aim is to run the marathon under four hours and hopefully the right side of my body will handle the distance. I know that I have the determination to finish the marathon; it all comes down to how fast I complete it. In running this marathon I want to raise as much money as I can for the National Stroke Foundation and I also hope my running of the marathon can help raise awareness of stroke and encourage people to seek out the warning signs of a stroke because as you can see a stroke can happen to anyone of any age, of any athletic ability. If I knew the warning signs my stroke could have been prevented.

To donate money and support Andrew in his amazing effort to break a world record visit his fundraising page: Andrew Islin

The National Stroke Foundation recommends that you seek the advice of a healthcare professional before embarking on any strenuous exercise.

Brain injury can change parts of the brain that regulate or control emotional behaviour and feelings

Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is not related to the person’s emotional state.

What causes emotional lability?

Emotional lability occurs because of damage to parts of the brain that control:

• Awareness of emotions (ours and others)
• Ability to control how emotions are expressed, so ability to inhibit or stop emotions emerging

When a person is emotionally labile emotions can be out of proportion to the situation or environment the person is in. For example, a person may cry, even when they are not unhappy – they may cry just in response to strong emotions or feelings, or it may happen “out of the blue” without warning.

A person may have little control over the expression of these strong emotions, and they may not be connected to any specific event or person.

Following a brain injury an individual may also lose emotional awareness and sensitivity to their own and others emotions, and therefore their capacity to control their emotional behaviour may also be reduced.

They may overreact to people or events around them – conversations about particular topics, sad or funny movies or stories. Weaker emotional control and lower frustration tolerance, particularly with fatigue and stress can also result in more extreme changes in emotional responses.

The person may express their emotions in situations where previously they would have been able to control (in quiet situations, in church, listening to a concert).

These behaviours can be confusing, embarrassing, and difficult to understand for the person with brain injury and for others.

Emotional responses after Acquired Brain Injury - become aware of triggers

• Be aware of triggers for emotional lability and try to avoid these when you can. Triggers can include: excessive fatigue or tiredness
• Stress, worry or anxiety
• High stimulation (too demanding, too noisy, too many people) and too much pressure
• Strong emotions and demands from others
• Very sad or funny situation (such as jokes, movies, certain stories or books)
• Discussing certain topics (e.g. driving, loss of job, relationships, death of a family member)
• Speaking on the telephone or in front of a group or where a person feels under pressure.

Have a break

Have a short break away from the situation so the person can regain control of emotions, and to give the opportunity for emotions to settle.

Sometimes a break for a few minutes or longer period is enough to regain control of emotions – taking a short walk, doing a different activity all can help to cope with these strong emotions.

Ignore the behaviour

Try to ignore the emotional lability as much as possible. Try to get others to ignore it too and continue on with the conversation or task.

Focussing on the lability, or giving the person too much attention when it is happening, can reinforce the problem. It is important that other people don’t laugh too, as this will also reinforce and increase the behaviour.

Change the topic or task

Changing the topic or activity (redirection and distraction) can reduce stimulation or stress (particularly if the topic was a trigger). Try to distract or divert the person’s attention by engaging them in a different activity or task.

Provide information and education

Uncontrolled crying or laughing can be upsetting frightening or confusing for other people if they don’t understand so:

Provide simple explanations of information to other people about the lability e.g. “I cry a lot since I had my stroke….don’t worry about it” or “Sometimes when I am nervous I get the giggles”.

Tell people what they should do e.g. just ignore me and it will stop”.

Plan ahead

When there is severe emotional lability, one-to-one, brief and fun activities in a quiet environment will be better. Try to avoid putting the person in stressful situations or environments e.g. noisy, busy, high levels of activity or a too demanding.

Plan activities that are within the person’s ability, and plan more demanding activities or appointments after rests, or when the person has the most energy. Plan for rests between activities.

Use cognitive techniques

Some simple cognitive strategies can also assist in managing emotional lability:

• Relaxation and breathing exercises to reduce tension and stress
• Use distraction e.g. thinking of something else, imagining a peaceful image or picture, counting
• Do an activity (going for a walk)
• Discuss cognitive and behavioural strategies (e.g. ‘thought stopping’|) with a psychologist.

Counselling and support

Sometimes a person has had many losses and changes to cope with after the brain injury – loss of work, ability to drive, independence, changes in relationships or finances, and lower quality of life. These changes can happen suddenly with little chance to prepare for them.

These feelings of sadness, grief, anger, frustration, disappointment, jealousy or depression after an injury are common and may be difficult to cope with.

If there are other emotional adjustment and coping issues, referral to a councillor such as a psychologist, social worker or psychiatrist may be helpful. Families (parents, siblings, partners, children), friends and carers may also benefit from support and care to help them understand and to cope with these changes.

Thank you to The Brain Injury Association of Queensland for the article in Synapse Bridge Magazine the official journal of BIAQ. This article was first printed from the ABIOS fact sheets available at www.health.qld.gov.au/abios.