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A change in cognitive ability is common after a stroke. Did you know that as many as two-thirds of stroke survivors may experience cognitive impairment as a result of their stroke.? If this is you, or you know someone who seems possibly to be going through such difficulties, here’s 18 steps you can take to try and improve cognition difficulties after stroke:

First, what is cognition?

Put simply, cognition is thinking; it is the processing, organising and storing of information – an umbrella term for all of the mental processes used by your brain to carry you through the day, including perception, knowledge, problem-solving, judgement, language, and memory. The brain’s fantastic complexity means that it can collect vast amounts of information from your senses (sights, sounds, touch, etc) and combine it with stored information from your memory to create thoughts, guide physical actions, complete tasks and understand the world around you.

A stroke can affect the way your brain understands, organises and stores information. This brain injury can result in damage to the areas of the brain that are responsible for perception, memory, association, planning, concentration, etc. The severity and localisation of the stroke will effect the type and level of difficulties experienced by an individual, and will vary from person to person.

It can be difficult to plan and organise daily tasks. The brain is constantly working in the background, allowing us to complete a task based on prior knowledge, experience, and learned behaviour.

You don’t have to consciously think how to boil the kettle, change TV channels or put on your socks before your shoes: you just do it. But damage to the brain can result in problems with these planning and execution mechanisms.

You might not be able to think how to do a simple task, or you may get the sequence wrong (for example, shoes before socks). You might have trouble with orientation, which could include not knowing the date, day of the week, or even who you are with. Problem-solving too can become difficult. Making decisions, solving problems, understanding numbers and managing money can be a challenge.

Good cognitive function also relies on memory. The brain uses 2 types of memory to hold information, the long and short term memory. Short-term memory is the temporary store for small amounts of information. This information is kept readily available and can be recalled quickly. For example, a phone number can be remembered long enough for you to dial it. Long-term memory is where you keep your experiences, thoughts and feelings from the past and things stored here can be stored indefinitely. Memory problems could result in difficulty storing or recalling information. This could include problems remembering appointments, important dates or in the case of short term memory, what you were about to do, or what somebody just said to you.

Problems with concentration are common. Concentration is required for effective cognitive function, as many of your thinking process require concentration. Concentration requires our brain to filter out much of the information coming in from your conscious thinking, so you are not distracted by it.

Stroke can impact on this ability because of damage to the areas of the brain responsible for this, and also because tiredness, pain and emotional problems have an effect of the ability to stay focused and concentrate. This could result in difficulties when trying to follow a television programme, or conduct a conversation with a friend. Multi-tasking too is difficult.

18 Things to try

1. Cognitive problems are confusing and frustrating. But, there are some things you can to do help. Most improvements occur in the first 3 months after a stroke, after which they slow down, but the brain will keep creating new neural pathways after this time.
2. To help with memory and perception problems, try using a diary, day planner, calendar or notepad. Writing down appointments and creating to-do-lists can help you to remember them.
3. Photos and pictures can help to ‘trigger’ your memory.
4. Check your calendar, newspaper or diary to help you remember the day and date.
5. Make notes of important conversations.
6. Use notes, lists  and labels around the house and help prompt you to remember. Mobile phones are a great resource. Set alarms, reminders and memos to remind you throughout the day.
7. It is important not to overload yourself, finish one task before you start another. Plan your day and prioritise tasks.
8. Try slowing the activity down, working through a step at a time.
9. Keep instructions clear and short, no more than 5 or 6 words to a sentence, and only 1 or 2 instructions at a time.
10. Paraphrasing during a conversation can help you to remember what has been said. This repeating back what they have said in your own words helps to ensure you have understood them correctly.
11. Busy and noisy environments can make it difficult to think.
12. Limit the number of things you have to think about at any one time, for example, turn off the TV or radio when someone is speaking to you. This should reduce distractions and help you to focus on what they are saying or follow the programme.
13. Being in a quiet room can also help you when reading or learning something new. Reducing visual distractions may also help you to concentrate. Keeping the area around you as clutter free as possible could help you to focus.
14. Keep to a routine, for example, dressing in the same order may help you relearn the steps.
15. Engage in activities which help to stimulate problem solving skills. Examples include board games (connect 4, chess), crosswords, puzzles, and brain teasers. There are a variety of phone apps which can help to engage the brain.
16. Stress and tiredness can make cognitive problems worse.
17. Take plenty of breaks and incorporate time in your daily schedule to rest or relax. This is important to allow you to recharge and could be quiet time, meditation, engaging in a hobby or going for a walk.
18. Exercise and listening to music may also have a positive impact on cognitive function.

Get in touch with ARNI Stroke Charity to see how we can help. We can certainly help to sign-post you to to some of the experts in cognition that we know and/or ask questions on your behalf..

Stroke is one of many conditions that can lead to seizures, or epilepsy. You may think of these as ‘having fits’. In the UK this condition affects just under 1% of the population. Around 5% of people who have a stroke will have a seizure within the following few weeks. These are known as acute or onset seizures and normally happen within 24 hours of the stroke.

The good news is that your risk of having a seizure lessens with time following your stroke. But, you’ve really got to take care. I see people regularly who have fits for the first time. It’s never fun, but luckily, as someone who has had controlled epilepsy for over 20 years I know exactly how to identify these very early (it’s not that hard really). Quickly get the person to the floor, gently, into the recovery position and call for an ambulance. If you have a list of all their medications on hand to tell the paramedic, that would be ideal.

You are more likely to have had one if you have had a severe stroke, a haemorrhagic stroke or a stroke involving the part of the brain called the cerebral cortex. My own epilepsy came only after subarachnoid haemorrhage, (an uncommon, very serious and often fatal type of stroke caused by bleeding on the surface of the brain)

The causes of seizures are complex. Cells in the brain communicate with one another and with our muscles by passing electrical signals along nerve fibres. If you have epilepsy this electrical activity can become disordered and a sudden abnormal burst of electrical activity in the brain can lead to a seizure.

There are over 40 different types of seizures that can occur, but the most common ones are partial seizures or generalised seizures.

Partial or focal seizures only occurs in part of your brain. You may remain conscious and aware of your surroundings during a partial seizure (called a simple partial seizure) or you may become confused and unable to respond (a complex partial seizure). The symptoms you experience during a partial seizure will depend on which part of your brain has been affected. You may feel changes in sensation such as a tingling feeling, which spreads to other parts of your body.

Commonly people experience a rising feeling in their stomach (a bit like when you go over a humpback bridge). This is called an ‘epigastric rising sensation’. You may also experience uncontrollable stiffness, twitching or turning sensation in a part of the body such as your arm or hand, and/or disturbances in your vision, such as seeing flashing lights.

People can actually be taught to ‘ward off fits’! I learned the hard way how to do this. It’s a real trick of the trade you can use as a stroke survivor! Jut get in touch with me and I’ll tell you how I do it. 2004 was the last time I personally had a fit. I developed a 3-stage process which is remarkably successful. Part psychological and part-physical, it just works for me and might work for you too.

Since 2004 and 2019, I’ve controlled my fits and manipulated the levels of the drug in my body so that it can cope with changing body-weight. Putting on muscle was the main reason why I had to increase the dosage of my pills. More on anti-convulsants (or anti-epileptic drugs) below.

Generalised seizures involve both sides of your brain. There are several types of generalised seizures. Tonic-clonic seizures are the most common and widely recognised type. During a tonic-clonic seizure you lose consciousness, your muscles go stiff and you usually fall backwards. I used to fall forwards. I know this because I used to wake up not knowing what had happened to me, but seeing a massive carpet-burn on my forehead. You really do basically stiffen up and go down like a brick! 

After losing consciousness, your muscles tighten and relax in turn, causing your body to jerk (convulse). Your breathing may become difficult and you may lose control of your bladder. This convulsive phase of the seizure should only last a minute or two.

Other types of seizures include tonic seizures (where your muscles go suddenly still but you do not have convulsions), clonic seizures (you have convulsions but no muscle stillness beforehand), atonic seizures (you suddenly lose all muscle tone and go limp), or myoclonic seizures where you experience a brief muscle jerk similar to the jerk you sometimes get as you fall asleep. A secondary generalised seizure is when a partial seizure spreads to both sides of the brain. Stroke-onset seizures are often of this type.

Most seizures stop by themselves and last between two and five minutes. After a seizure you may feel tired or confused. The time it takes to recover varies from person to person. Sometimes after a seizure associated with stroke, you will have temporary weakness, which may last for a few hours.

If a seizure lasts for 30 minutes or longer, or you have a series of seizures without consciousness being regained in-between (status epilepticus), your body struggles to circulate oxygen properly and this is an emergency. Your family or carer should call emergency services immediately if you have a seizure that lasts for more than five minutes or if one seizure follows another without you regaining consciousness in-between.

IMPORTANT: If you think you have had a seizure, and are not in the hospital, you should see your GP immediately, and then referred as soon as possible to a specialist. You may not be able to remember the seizure so if someone else witnessed it, it might help if they see the specialist with you. The specialist will ask you questions about what happened. This may be enough to make a diagnosis. However, further tests may be needed, particularly if the seizure did not involve convulsions.

You may have an electroencephalogram (EEG), which involves placing electrodes on your scalp and is painless. These measure electrical activity in your brain and can identify any unusual patterns. An EEG only shows what is happening in your brain at the time it is done, so a normal EEG does not necessarily mean that you do not have epilepsy.

It’s a good idea to keep a ‘seizure diary’ with the dates and times of your attacks, what happened, and any possible triggers, such as alcohol, or stress. It means you can narrow it down to factors such as: ‘am I missing taking my pills by half an hour to an hour?’,  or ‘have I just been in very stressful situation?’ Both of these were big triggers for me. Flashing lights can be a trigger (photosensitive epilepsy) though this is not common as people think.

There is currently no cure for epilepsy, but medication can usually control seizures and allow you to lead a normal life. Which treatment you have will depend on the type of seizures you’ve had, how frequent they are, other effects of your stroke, for instance if you have problems swallowing, and any other medication you are taking.

Anti-epileptic medications (AEDs) work by preventing excessive build-up of electrical activity in the brain, which is causing the seizures. Unfortunately, the normal activity of the brain can be affected, leading to drowsiness, dizziness, and confusion amongst other side effects. Once your body is used to the medication, these side effects may disappear.

Your doctor may start you on a low dose and increase it gradually to reduce the chances of unpleasant side effects. If you can’t tolerate the medications, then you must tell your GP as there are choices of treatments, and the science is progressing all the time. There are many safe and reliable AEDs available, and you will find one that suits your individual case.  The choice of AED used for you will depend upon your type of epilepsy, sex, and any other medications you may be taking. I take the above medication: the good thing about these is you can get the Chrono-Release version, which release the medication throughout the 12 hour intervals per day you should take them.

Many people, including myself, get back to extremely busy schedules after stroke, and simply take their pills. One tip is that often AED dosages are often quite highly-tuned. If you put on bodyweight, you may begin to have enough in your system without realising. This was a total ‘game-changer’ for me and has been so for many others. It’s also a good idea, if you are having fits, to get a medical bracelet which identifies you as someone who experiences epileptic fits..

Important tips:

1. Develop your own ‘early-warning system’ and find out how to ward off fits as they come on.
2. Find an excellent Epilepsy Consultant: they are worth their weight in gold.
3. Never suddenly stop taking your medication: this will cause you to have seizures and possibly develop prolonged seizures (status epilepticus). Although studies show that the risk of having a seizure-related accident decreases as the length of time since the last seizure increases, there are still a great deal of road traffic accidents found to have been caused by people coming off anti-convulsants. Medication should only be stopped with medical supervision.

Fatigue is often experienced after acquired brain injury and people often try to manage via fatigue strategies such as planning and pacing. In order to use such strategies, the individual needs to build a picture of how their fatigue affects them in daily life. Usually,  a daily diary sheet of sleep, rest, activity and fatigue is completed. Apps on smart phones are able to collect “in the moment” information about people’s fatigue experiences and to collect information about sleep and rest patterns. This information could help the person with brain injury, their carers and their therapists to learn about their fatigue more effectively, and identify triggers and patterns of fatigue.

A student researcher conducting his doctorate at Oxford Brookes University has developed an early prototype of an app, based on interviews with people with brain injury. This app works on android mobile phones and asks the user (who has experienced a stroke or other brain injury) to rate their fatigue, identify what they were doing at the time… and to complete a reaction time test.

The app collects information about the phone screen turning on and off as this relates to sleep patterns. The aim of this study is to investigate the usability of the mobile phone app to assess fatigue after acquired brain injury. This involves finding out users views about the design of the app, ease of use and how the app works in everyday life.

Here is what you would do:

Stage 1. You would meet with the researcher at Oxford Brookes University for up to 45 minutes, to  collect the app and learn to use it. The app would be installed on your phone but there is an option to use a phone purchased for the study. You would be loaned an activity monitor and the researcher would explain how to use it. You would complete a short questionnaire which involves answering 3 questions about you and your phone use.

Stage 2. You would respond to the app prompts on the mobile phone over the next 6 days. The phone app would ask you to:

• rate your energy levels
• answer a question about what you are doing when the phone app alerted you
• complete the reaction time test.

The phone will prompt between 6 and 8 times a day. Responding to each prompt will take up to 2 minutes. You can ignore the prompt if you wish to. The app will not alert you between the hours of 8pm and 10 am.

Stage 3. After 6 days of using the app, you would be asked to meet with the researcher for 45 minutes. This involves complete a short questionnaire about the app. The research will also interview you to find out about your experiences of using the app. This may take place at Oxford Brookes, at your home or on skype (video call). The researcher will remove the app from your phone as needed. You will return any loaned equipment.

The University thanks you in advance for your consideration: the student hopes that outcomes from this study will contribute towards the development of a usable app for assessing people’s experience of fatigue after brain injury. Such an app may then support more effective interventions for fatigue after brain injury.

Click the colour thumbnail advert to download study design, confidentiality details and click link here for full study design information sheet

Contact for Further Information

Leisle Ezekiel, PhD Student, Centre for Movement, Occupation and Rehabilitation Research (MOReS), Headington Campus, Oxford OX3 0BP

eisle.ezekiel-2014@brookes.ac.uk

Telephone: 01865 485530

or Dr Johnny Collet, Clinical Research Fellow, Centre for Movement, Occupation and Rehabilitation Research (MOReS), Headington Campus, Oxford OX3 0BP

Jcollett@brookes.ac.uk

Telephone:01865 483630

Physiotherapists aim to re-educate your movement, sensation and balance in order to enable you to reach their potential for recovery of mobility and independence. They can help assess your mobility and suggest and provide equipment such as walking aids, splints or wheelchairs.

Occupational therapists assess your ability to participate in activities of daily living such as personal care, kitchen tasks and ability to manage in the home environment. They provide therapy to support both physical and cognitive (thinking) difficulties.

If you’re a current patient reading this, both are about to become your best friends. They are also going to be pushing you hard. This is for a very good reason however. They are going to get you moving. Focusing mainly on your physical rehabilitation, physiotherapists and occupational therapists usually build custom plans to fit these needs.

During your first appointment with your new therapists, they will thoroughly examine your body, consult your notes, and interview you and/or your loved ones about your symptoms and any setbacks so far. This will allow them to develop a plan that’s right for you, focusing on restoring movement and preventing problems that may occur after your stroke.

Your therapy regimen will revolve around specific goals, the achievement of which you and your therapists will work on together. If you are able to, you should make sure to ask questions, especially about your specific goals and timetable, in order to know what to expect from physical therapy, even though you will have hundreds of other questions now – for example: 35 questions stroke survivors ask. Similarly, family members, carers and friends should to help in this regard: to convey to you messages from what they are gathering about neurorehabilitation and how it applies in your case.

Physiotherapy begins with the most basic tasks and movements, with the aim of protecting your more-affected side from injury. These gradually progress to exercises and tasks that aim to improve your balance, help you relearn basic coordination skills and functional tasks such as successfully handling objects and walking. During this time, what’s your overall mission to be? The answer is ‘everything you humanly can’. Along with post-stroke weakness in one or more limbs, stroke survivors of all ages frequently are de-conditioned as a result of immobility, fatigued on a daily basis and often have insufficient underlying motor activity to start the kind of task-related practice they need to do, which does make everything much harder.

Occupational therapy will involve teaching you to do practical tasks such as to attempt to put on a shirt, brush your hair or butter some toast. Real life task-attempts are probably the best form of therapy or training for the upper limb around. Both kinds of therapists will be working in conjunction with each other to help you regain function. The intensive input of your acute therapists is vital, and so is the nature of the approach taken by them toward helping you tackling your limitations.

The Sentinel Stroke National Audit Programme (SSNAP), which audits the quality and organisation of stroke care in the NHS, reveals that you will receive just 35 minutes of therapy per working day. Over an average of 17 days (the typical stay length) you will get just 7.3 hours of physiotherapy. Will this be enough to help you recover optimally? Of course not. But it’s the best that can be offered at the moment, so finding a way to involve family members, carers and friends (who often feel quite powerless) augment is an idea that has merit and is not lost on rehab units.

Research indicates that stroke patients seem to recover lost or impaired physical abilities more quickly if family members pitch in to help them with exercise therapy. Only, however, if you are able to cope with it. Therapists are often wary of ‘allowing’ family members, carers or friends to attempt to mobilise you, as they are viewed as not being trained to do so (see also the caveat to this at the end of this post). Depending on your presentation and how long into your stay at the unit you are, some will judge that they can suitably give guidance for this to be done safely, depending on many unique factors concerning the patient, process and place. Research indicates that boredom is often reported by stroke survivors in hospital. Boredom will limit your engagement with therapy and subsequent recovery. Therefore, if families, carers and friends notice this happening and also witness/get to understand that the therapists have completely full case-loads, they should feel that it is ok to ask what they can do to help improve your recovery.

Survivors are noted to be inactive (and alone, in therapy terms) for much of the day as inpatients. This is time that is acknowledged by Professor Nick Ward at UCL as time that could probably potentially be used productively for self-rehab efforts, given some clear protocols. Upper limb work tends to be less-emphasised in inpatient rehab, in favour of the ‘big moves’;  ie, seat to stand, weight-bearing, gait control attempts, muscle strengthening etc. Upper limb needs focus, but because this is most often not the case, patients often get frustrated.

Many ‘ignore’ their more-affected upper limb during the day except for some stretching of stretching, and upper limb splinting & sling usage can seem to ‘get in the way’ of this. But not prioritising the upper limb, especially grasp and release ability, even if the hand seems completely ‘lifeless’, is a big mistake. Patients could do with knowing what kinds of self-rehab strategies would be likely to be productive. but with so many other priorities, what can be done? 

70% of survivors will be left with upper limb difficulties. Successful Stroke Survivor manual and corresponding DVDs contain lots of exercises to help you train your more-affected upper limb. Given that you can be in a seated position, you will not be endangering yourself in terms of balance, leading to a possible fall. Take your bad hand and play with it with your good hand ceaselessly, stretch it, try to do tasks with it all the time, and do the myriad of trial and error experiments to try and produce breakthroughs.

For early in-hospital self-rehab, you need to be doing is ‘as much as you can’. Please note, the therapists must be consulted at all times if there is any doubt at all, as there will be many issues, from shoulder subluxation and pain, to upper limb splints that need guidance to be removed (if indeed a good thing to do so – it may not be, depending on daily presentation) that will be in play. One thing stands out from the evidence: that it has been shown that family participation in exercise routines for stroke patients empowers the caregiver’s help and may reduce their stress levels. Which is definitely a good thing. Making family members, carers and friends feel they are useful and contributing to the process is good.

From admission to discharge, by the way, you will receive a very small measure of upper limb rehabilitation compared to what your brain actually needs in order to stimulate new connections at this critical time. Recent findings show that intensive arm training early after stroke is acceptable and beneficial to patients (physically and psychologically). However, statistics also show that you will complete less than 4 minutes of activity-related arm training daily during rehabilitation (less than 4 minutes during physiotherapy and 11 minutes during occupational therapy). You might get more; it all depends on your hospital. It’s possible to try and do some in-hospital upper-limb training to boost this dose: check the ward’s rules with your therapist.

If you’re a current patient reading this, you’ll understand that your therapists can’t be there in the weekends or after work hours (although in some hospitals there are services to extend therapy hours): but still, your top priority is to regain crucial movement and take advantage of that ‘therapeutic time-window’ they talk with you about. These circumstances can actually be taken as a chance for your family members, carers and friends to become involved if they can, learning about the nature of your limitations and finding the out the best exercises to do to to help combat your limitations. A caution here. By this, I do not mean that they can must be moving you without your therapist’s guidance, permission and encouragement.

Ask your therapists for starter strategies for safe upper-limb work that you and your family/carers can do to supplement the work they are doing with you: they will be pleased that you asked. This guide shows safe stretches and a method to introduce upper limb exercise and comes with this laptop exercise board you can possibly use too (again, seek your therapist’s advice).

Your therapists are not miracle workers. They can seem to be so! But even they will acknowledge that they are just the essential guide to the process. They need some help if your chances for recovery are to be optimised, but help from family members, carers and friends to continue rehab needs to be balanced with risk. A major problem often encountered is that stroke survivors and their family members, carers and friends are usually not sure what exercises to usefully or safely perform.

The first key to success is understanding that keeping safe is good, but not moving is bad. Find out what can be done safely and do more, not less.

Information provision remains a commonly reported unmet need in rehab. Stroke survivors and carers consistently report that they do not know enough about the mechanisms, cause, and consequence of stroke. It is difficult to know whether this is a true expression of lack of needed knowledge or a reflection of stroke survivors’ and carers’ continued post-stroke uncertainty. A paper by Dr David Clarke and Professor Anne Forster at Leeds University published in 2015 in the Journal of Multidisciplinary Healthcare shows clearly that it’s important that stroke teams ensure that messages to patients and their families are consistent and that not only basic information is provided but also that they have the knowledge of where and how to access further information if required.

As far as weight bearing, balance and gait control etc are concerned, an interesting Australian paper of note was published this year in the Journal of Physiotherapy: Dorsch et al (2019) In inpatient rehabilitation, large amounts of practice can occur safely without direct therapist supervision: an observational study which concluded that in an inpatient setting, a large percentage of practice can be performed as semi-supervised practice and that this did not appear to compromise the time spent in active practice or patient safety. This was a small scale study (1319 patient observations) carried out in Australia, but with some possibly important observations… showing perhaps that involving families, carers and friends can contribute somewhat in ramping up the amount of weight-bearing/walking done in hospitals.

Similarly for upper limb, perhaps encouraging a ‘directed to do/facilitated’ approach may have some merit to assist survivors to perform more adequate amounts of exercise with consideration to their differing presentations.

Family members/carers or friends may possibly do better by being supported/’equipped’ (in terms of a guiding of ‘how to help’) and maybe even external (NHS funded) short (online?) training sessions given, or maybe DVD guidance?).

This may go some way to counteracting feelings of powerlessness to help that carers often report whilst their loved ones are in clinic and similarly, once they are discharged,

Certainly, as those closest to you are usually the ones who will be carrying the ‘burden of care’ forward, addressing ‘carer needs’ requires attention. For sure, a focus solely on your needs alone can inadvertently lead to neglecting to support people who may experience considerable anxiety and hardship  (depending on circumstances) once you are discharged. They need to be as clued up as possible in order to help drive your rehab needs further. Knowledge is power!

(Please help inform readers further by writing your view/and or experiences in the Comments box below)

Tiredness is something we all experience in our everyday lives. But fatigue is where we experience tiredness which is unrelated to physical or mental exertion, and is not alleviated by rest. Up to 70% of survivors experience fatigue, characterised by overwhelming physical and/or mental tiredness or exhaustion. For many the symptoms dissipate and lessen over time. Others continue to experience these symptoms at a high level many years after their stroke. This is called chronic fatigue.

It is a condition which can greatly impact upon the quality of an individual’s life, making everyday tasks feel overwhelming and unachievable, or just plain exhausting.

Previously, it was thought that patients who experience depression post-stroke were fatigued as a result of their mental health, whereas it is now highly possible that the inverse relationship may, in fact, be true. Fatigue may often be the cause, or a significant contributing factor, of depression.

There is currently no clinical method for diagnosing fatigue, and no treatment is available to alleviate the condition.

Research into fatigue is at its very early stages. Work to contribute towards a treatment has now been spearheaded by Dr Anna Kuppuswamy, the lead researcher on the project.

Her study aims to further general understanding of how fatigue works in the brain, and whether or not it can be alleviated. The goal for the future is to be able to diagnose and treat fatigue effectively, so that no-one need experience its debilitating effects.

So, how can you help?

STROKE SURVIVORS EXPERIENCING HIGH LEVELS OF FATIGUE –

Please come to help Dr Kuppuswamy’s Team test a new intervention for fatigue!

The UCL study would involve three visits to 33 Queen Square to complete some computer-based tasks, as well as receiving some non-invasive brain stimulation.

The aim of the intervention is to test whether some of this stimulation can have a positive impact on the self-reported extent of fatigue; at this stage, the impact may not be greatly significant or long-lasting but, as mentioned, the research is at the early stages and the goal is longer-term.

The sessions would not be particularly intensive, as the researchers are particularly understanding of how challenging it can be to live with fatigue. The minimum is one visit.

STROKE SURVIVORS – come and take part in the screening and other tests (please view Study flyer by clicking on thumbnail copy of flyer above)

The Team will use your data as a control to further their understanding of the brains of those who have had a stroke and do not experience fatigue, and those who do experience fatigue.

If you think that you might be interested, please get in touch by emailing cameron.cook@ucl.ac.uk. You will be asked some questions to ensure you are eligible and can safely take part in their study.

This UCL research study is funded by the Wellcome Trust and Stroke Association.

Are you interested in learning about your sleep after stroke?

Researchers at the University of Oxford are currently investigating how sleep is affected by stroke.

Heidi Johansen-Berg is Professor of Cognitive Neuroscience and Director of The Wellcome Centre for Integrative Neuroimaging at the University of Oxford. There, she leads the Plasticity Group whose research focuses on how the brain changes with learning, experience, and damage.

As well as shedding light on how the healthy brain responds to change, The Plasticity Group’s work also has implications for understanding and treating disease. For example, they are currently studying how sleep can affect recovery after stroke.

Would you be interested in learning more about your sleep following stroke?

If so, The Plasticity Group are currently running a study in which you might be interested in participating – or you may know someone who is.

The aim for this study is to investigate how sleep is affected by stroke which could help to develop better sleep improvement programmes specifically for individuals after stroke.

We know that sleep plays an important role in learning. Studies have shown that if you take two groups of people and teach them the same skill, such as juggling, then allow one group to sleep for a few hours and keep the other group awake, the sleep group will perform significantly better when retested as they have been able to consolidate the memories of learning the skill through sleep.

Learning, or re-learning, of motor skills is a key component of motor rehabilitation after stroke. If sleep is impaired following stroke then consolidation of motor skills gained through physical rehabilitation may be diminished. Therefore, finding out about how sleep is affected by stroke could help us to develop better rehab outcomes following stroke.

The current study involves coming to a research centre in Oxford for one session to complete a couple of motor assessments with the upper limbs and to answer a couple of questionnaires about your sleep and mood. Then researchers will set you up with a pair of sleep monitoring wrist watches for you to wear for a week with a simple sleep diary asking what times you go to bed and get up each day.

There has been limited work with stroke survivors and sleep so researchers at the University of Oxford are currently looking for people who have difficulty using their hand/arm after a stroke to take part in this study to see how recovery after stroke is related to sleep.

If you would like to join this study/find out more, please feel free to contact the researchers:

Mr Tom Smejka: thomas.smejka@ndcn.ox.ac.uk

Dr Melanie Fleming: melanie.fleming@ndcn.ox.ac.uk

Professor Heidi Johansen-Berg: heidi.johansen-berg@ndcn.ox.ac.uk

CALL 01865 611461

Being unfit and inactive are risk factors for stroke. And after stroke (depending on your pre-stroke status), you will be far less physically active and cardiovascularly fit. If you are in either category, if appropriate, this post might be helpful… 

In the UK, stroke services are developing/referring in to stroke-specific community exercise programmes. The system is reasonably analogous to the very well-established rehabilitation services for cardiac disease patients which usually start after usual rehabilitation has ended.

Standard community pathways for exercise and physical activity vary across counties and regions in the UK, but collaborations between health boards and council-run leisure centres have resulted in the establishment of exercise referral schemes which provide a range of exercise programmes delivered in usually in small group sessions. These often utilise community leisure resources.

You can enquire yourself about local services or be referred through local identification mechanisms (GPs, health professionals).

Additionally, some UK Charities, including Stroke Association, Headway, Different Strokes and Strokeability offer free or minimal cost group exercise classes in multiple venues around the country, however these are generally low in frequency (once a week for approximately one hour in duration).

ARNI offers group classes rarely, preferring to concentrate charitable efforts on getting instructors into people’s homes in order to provide that vital one to one rehabilitation support that can be achieved at lowest cost.

Weekly exercise classes for stroke survivors (who also have resulting physical limitations requiring rehab) should be considered supplementary to what you are already doing at home and elsewhere to attempt to recover. Cost does come into this of course.

Apart from ramping up physical activity and cardio activity, by far the most important part of recovery from many stroke survivors’ points of view is rehabilitation. Hence ARNI’s concentration on teaching you techniques to tackle hundreds of improvement activities including weight-bearing, balance and gait-control (including how to cope with drop-foot and reducing the required supporting power of the AFO over time, etc), coping strategies (such as getting down and up from the floor unaided and emergency action avoidance techniques, turning etc), upper limb training (tackling spasticity. flaccidty etc) one to one, with the help of a physio or trainer, as well as how to train for cardio effect independently at home.

Wow, there’s so much to do after stroke, right?

Well, yes maybe it seems like it, but segmented into mini-efforts, it can definitely be done. You have potential to do better. PLEASE don’t get disillusioned and not make a start.

This is going to be a long term effort, with sometimes little discernible result, but believe me, absolutely everything you do matters.

Let’s define things, so you can take action.

Exercise is a physical activity that is planned, structured, repetitive, and purposeful.  Physical activity includes any body movement that contracts your muscles to burn more calories than your body would normally do so just to exist at rest. Although learning to enjoy and plan structured exercise into your routine would definitely improve fitness, it is not the only way to improve fitness. Activities of daily life keep your body moving and still count toward the recommended amount of weekly physical activity. Most importantly, no matter what your current fitness level, you are able to improve your physical fitness and therefore, your heart health, by increasing physical activity and/or exercise as you are able.

What you should be doing in terms of exercise is regarding it as comparable to a prescription of medication.

Ie, it’s probably best taken every day. You should only start exercising once you have recovered enough and only do as much as you can manage. Talk to your doctor or therapist about what is right for you.

Here’s how you can optimise everything  from now on (ie, minimise time on training and maximise time on LIVING LIFE!!).

These three priorities should be the ‘spend’ and the ‘reward’ is knowing you are doing everything optimally to recover and vastly diminish possibilities of further complications. 

1. Try and secure rehabilitation at home one to four times per week with a physio or trainer. There are lots of options. Physiotherapy clinics are all over the place with some first-class physios ready to provide excellent rehabilitation. This website, of course, shows you how to get a physio or trainer in your area who will come to your house and help you optimally, for around £45 to £50 per full hour. This can be even be supplemented by telerehabilitation (focused on upper limb training) with your instructor for around £20, during the week. 
2. Do cardio on a machine (stationary bicycle, recumbent bicycle, treadmill) at home every day, for 10 to 30 minutes, depending on status.
3. Be as physically active throughout the day as you can.

Knowledge is power – let’s look at the meanings of cardiovascular exercise, sedentary behaviour and physical activity  – so that you can quickly figure out the optimal choices for you – and how best to save time and money.

Cardiovascular exercise covers everything from walking, jogging or running over-ground or on a treadmill (with or without bodyweight support such as the Alter-G anti-gravity treadmill), to cycling, recumbent stepping or swimming. Many people call it ‘cardio’ exercise.

Cardio is a therapeutic intervention that, despite the known benefits, is under-utilised by clinicians during rehabilitation. So, do not feel guilty if you have not done any since your stroke. But let’s start putting that to right.

Sedentary behaviours are basically any waking behaviours characterised by an energy expenditure of ≤1.5 metabolic equivalents (METs), while in a sitting, reclining or lying posture.

The chart shows you the different levels of physical activity.

Most stroke survivors are stuck firmly in sedentary behaviour levels.

Over the last 10 years, evidence has emerged that too much sedentary time (e.g. time spent sitting down) is related to a multitude of physiological consequences that result in reduced fitness, increased cardiovascular risk and increased risk of further sickness and even death.

It is important to note the distinction in definition between sedentary behaviours and physically inactivity (defined as: an insufficient physical activity level to meet present physical activity recommendations – e.g. not achieving 150 minutes/week of moderate intensity activity).

Note: an individual may be physically inactive but have low levels of sedentary time across their day, or vice versa. So, a person could meet physical activity recommendations but also spend considerable time in sedentary behaviours. 

But do daily METs really ‘tell the whole story’ of the health effects from physical activity? Maybe not.

A number of crucial physical attributes beyond daily METs for health are either unexplored or have received very little attention. For example, improvements in cardio fitness requires physical activity levels of relatively high intensity (>60% of maximal cardiorespiratory fitness). Thus, large volumes of daily METs at a lower intensity may improve metabolic fitness, but not cardiorespiratory fitness (due to insufficient stimulus on the cardiorespiratory system to adapt for higher physical activity demands).

Amazingly, workers in manual jobs (eg, cleaners) measured to walk about 20,000 steps per day still have poor cardiorespiratory fitness. On the contrary, high-intensity interval training for very short time improves cardiorespiratory fitness despite low total METs spent.

Given this, it is clear that you need to adjust some variables here.

The main principle used when defining and prescribing physical activity is called The FITT principle. 

The great news is that exercise training is a really potent stimulus for improving fitness and cardiovascular risk after stroke – and it doesn’t have to be at all onerous.

The dose of physical activity is different from person to person taking into consideration your capacity and limitations while also making sure you can adhere to the activity and safely complete it. And the best physical activities  provide progressive challenge over time.

It is recommended you should try and complete frequent but shorter sessions. This still may sound like a lot to do, but it does need to be contemplated. Look below at the chart ‘Interval Training Set’ for exactly how to do it.

Cardiovascular exercise has many health benefits to strengthen the heart’s efficiency.

The heart is one of the powerhouses of the body. When you strengthen your heart, you strengthen your whole system, including the arteries. With every heartbeat it puts pressure on your arteries, which transports a constant flow of blood throughout the body.

Exercise improves the heart’s efficiency by increasing the number of your smallest arteries called capillaries (this is called an increase in capillary density); which allows greater exchange of those nutrients your body requires. Cardiovascular exercise also increases the amount of blood that leaves the heart with every beat (stroke volume) meaning the heart doesn’t have to beat as many times per minute; the heart essentially doesn’t have to work as hard, increasing its efficiency.

In terms of your arteries, aerobic exercise decreases what is called arterial stiffness, this allows for the blood to be pushed along the arteries through proper dilation and contractibility, with an adequate amount of pressure.

A recent systematic review has shown that exercise interventions can result in clinically meaningful blood pressure reductions. Particularly if initiated early and alongside education about healthy lifestyle. In a haemorrhagic stroke, long-term arterial stiffness weakens the arteries. And with a rise in pressure, arteries can burst. Cardiovascular exercise is the first step to keeping or creating a healthy heart and arteries while a second intervention is diet. I will reveal more on healthy diet for stroke survivors in a next post. Your blood contains important factors that can keep you functioning properly, such as oxygen and many nutrients transported through the arteries.

Intensity of exercise is dependent on your heart rate or the amount of effort you feel you are exerting. To determine how ‘hard’ your heart is working and the intensity during exercise is also depended on your age. The more intense the activity the higher your heart rate will be. You might hear the phrase Rate of Perceived Exertion or RPE for short.

This is a scale that generally runs from either 6-20 (6 being resting while 20 is a maximal exertion during exercise) or a scale of 0-10 (0 being resting and 10 being maximal exertion during exercise). This scale is used to see how hard you perceive the activity to be.

It is advised to complete 3-6 days per week for 10-60 minutes per session depending on your status and the intensity of the exercise being completed. To get this done most efficiently, use the HITT principle, with permission from your GP.

HIIT training is high intensity interval training: a type of cardio workout where you will perform a set of exercises, alternating between high intensity periods and active or full recovery. These are short sessions of of intense work. The intense periods can vary from 10 seconds to 1 minute long and should be performed at 80 to 95% of maximum heart rate.

It should feel like you are working hard to very hard and be short of breath. If you use the talk test you would struggle to carry on a conversation. The recovery periods are performed at 40 to 50% of maximum heart rate. This is the period where you would feel comfortable and allow the body to recover and prepare for next work interval. You can also use the RPE chart where work intervals are between 8 to 10 and rest periods are from 4 to 6. The relationship between the work and rest periods is very important. The length of work and rest can be equal in length or the rest period can be shorter than the work period. This depends on your fitness levels as well as what you are actually doing in your work period.

Cardio exercise. It’s a good idea to plan from the start, how you are going to get cardio exercise done by yourself at home. In the beginning you may be nervous about doing some exercise training at home without supervision, but if you’re smart about it you can do it safely and successfully.

What to buy? It depends on your wallet, space in your house and other personal factors of course, but some general advice below.

Stationary exercise machines such as bikes are great, as you can use them without worrying about your balance.

A rowing machine is probably a no-no – it’s a sure-fire way to mess with your shoulder if you have subluxation in your more-affected upper limb.

Treadmills are risky unless you have two hands that work (you do need to be able to hold on!)

Ellipticals are often hopeless for those with upper-limb weakness (the more-affected hand cannot hold onto the handle), but some survivors make them work, no problem.

A much better bet for stroke survivors are stationary bikes that are more horizontal in nature rather than vertical.

These are known as recumbent or semi-recumbent bikes (depending how reclined it is). These types of gym bikes can be picked up relatively affordably from a variety of places. These are, for many, much better solutions. And they hold an excellent re-sale value.

I strongly advise the recumbent bicycle for stroke survivors with upper limb limitations – this solution is the best I’ve found. Here is my own one. See pic too. It sits in my office and is absolutely great. If you get one, you can prop an Ipad on the small tray where the display is and watch box sets or TED talks on youtube as you pedal!

I also have a commercial treadmill (fold-up one) in my office and do fast walking, covering around two miles per day on it using inclines varying from 0% to 15%. I also wear a 20kg weighted back pack. I try and do two sessions of 23 minutes each to complete the 2 miles. Sometimes it’s just one mile I manage to get done on top of weight training. This is actually just to ramp up physical activity (and a bit more power) in my more-affected leg.

But obviously I’ve worked up to this. I’m also holding on tightly throughout, to both handles! So this advice is only for those stroke survivors who have been spared upper limb limitations, or have rehabilitated  to such a good functional level that they feel able to use the treadmill safely. You will find that the treadmill has a fail-safe cord on it too which cuts the motor if you move too far from the control bar.

You can get amazing deals on these. I got mine for around £430. New, they are around £1100. This was because it was an ex-demo model. I just ensured that it was refurbished before buying. Have a look at Fitness Superstore. In this link I’ve found you the page for reduced price treadmills.

Mainly, it’s about doing what you can do, within exercise after stroke guidelines which are clearly available just by googling.

A final point: it’s a good idea to monitor yourself while exercising, so you can follow your own progress and also know when you need to push yourself a little further. There are several ways you can do this. Heart rate monitors are a great way to keep track of the intensity you are working at. Speak with your GP to find out what heart rate you should be working at for your age.

Pedometers are probably a more readily available and simple way to monitor how much you do in the sense of how many steps. However, ideally you want to be doing these steps fast if you want to improve your health and fitness. Physical activity watches such as a FitBit can track all sorts of things throughout your day such as activity, sleep and heart rate. If you want a way to begin tracking your activity levels to continue with your recovery one of these gadgets could be very useful in tracking your improvements over time.

In terms of physical activity, I encourage you to incorporate a variety of exercises in to your lifestyle. Particularly things like getting out of your residence and walking as well as you can (accompanied as appropriate), swimming (swimming classes for stroke survivors are often available and run by some ARNI INSTRUCTORS) and are a great way to socialise while achieving something.

Physical activity, rehab activity and cardio activity – each one followed by kettle and mug activity!

All is possible!

Are you looking for something to send a stroke survivor friend or to advise someone to get for you for Xmas? If so, these 2 low-cost gifts could be what you need. Both are available in limited supply for under £100!

I. If you want to give someone the ultimate home DIY exercises to help them recover, try this.

A login/password for anytime online streaming access (straight to ipad, phone etc) to the full DVD series of the well-known ‘Successful Stroke Survivor’!

This is a great gift. You can also send a gift of the actual DVD set for their DVD player too.

Exercises are for people of all levels – wheelchair-bound to those with ‘fine-tuning’ requirements. It’s all there.

Click here for more and find a Xmas saving of £40 on combined cost of all the DVDs.

2. If you want to help your friend recover use of their hand after a stroke, this brand new item is hugely popular at the moment!

It’s called the Stroke Task-Training Board and allows for standardised repetitive hand training. This can be used at any point to help retrain the upper limb – particularly the grasp and release.

Comes with 11 customised items that have been found by ARNI to work best for variety in terms of texture and shape.

Comes with a special 10 page colour Guide. Ultra-helpful for the stroke survivor!

Click here for more and find a Xmas saving of £10 on each Board.

Extra!

You might also want to buy some cards to support ARNI! 

Get your set (or sets) of 10 ARNI Stroke Charity Christmas cards!

These are A5 and very thick card.

We hope you love the design done by a young stroke survivor with his affected hand!

All therapists know what a challenge it is to try and help patients gain further action control of the more-affected upper limb. For ultra-effective upper limb training, get your task-specific training board shown here in conjunction with stretching before and after each grasp and release sequence.

If you or your loved one has upper limb limitations, this can be an excellent way to ‘increase the dosage’ of repetitions.

As Professor Nick Ward at the Institute of Neurology points out continually, in his and his team’s efforts to get stroke survivors to do more to engage the upper limb, ramping up the amount of grasp and release efforts performed daily may be most likely to increase neuroplasticity and accelerate recovery.

At last, available to you is the Upper Limb Task-Training board, as described in Successful Stroke Survivor and accompanying DVDs.

An innovative and simple idea created by Dr Tom Balchin which has helped thousands of survivors around the world since 2011, is now standardised here for you with his ideas of optimal content.

Red, Pink or Silver: choose your colour for a Christmas gift to yourself or another!

Comes with a full colour, fully illustrated 10-page A4 GUIDE for use.

The laptop tray, which can be opened and locked at any angle, is covered with strategically placed Velcro hook and comb strips and squares. 11 different tactile items, each with different manual challenge, have been sourced and purchased for stroke survivors to practice grasp, place and release. 

These are really great for people to try, if there is spasticity or flaccidity present – and this is the stepping stone that we have found for countless ARNI patients over the years that works to progress their hand from one phase to another. Best advice is always start off with the wooden pegs in slots. Physiotherapists have, among their many upper limb measures, a test called the ‘9 hole peg test’. This is an idea borrowed and scaled up from that test, with slots to enable practice. Advice is (all present in the Guide), is to start off with these, working on ‘getting the gap’.

Dr Tom shows you in the Guide how to try create the temporary ability via a particular stretching sequence how to maintain a gap between thumb, index and middle finger to enable a grasp upon command. The idea is to work up to being able to go up and down the line, lifting and replacing.

When you can do this, it’s time to move on to more challenging items on the board. The longest, smoothest and widest items are the most challenging. The Velcro always keep the paretic hand from knocking over items as the survivor attempts to grasp items until more fluidity/accuracy is gained. All is explained in the Guide and DVDs. You are going to like this approach; it gives SERIOUS RESULTS in terms of action control.

This is a must-have for all stroke survivors with upper limb limitations. 

Sourcing the varying of thickness and adhesiveness of very high-strength Velcro, the cost of the lockable laptop board itself, combined with the cost of the items adds up surprisingly. We have done all this and put the time in to create and offer you this at the very best possible price to cover outlay.

Get yours here to help yourself or your loved one with ARNI style upper-limb training… and get a fully-illustrated colour 10 page accompanying Guide with it! 

Go to the Products page to get the Task-Board.

IMPORTANT – Instructors and survivors will also be using this board together for forthcoming upper-limb telerehab sessions.