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Loss of arm function is a very common problem after stroke. Put bluntly, if you have a stroke, it causes lasting damage to the part of your brain that controls movement in your arm. Stroke survivors may experience multiple upper limb symptoms resulting in complications such as weakness, planning and co-ordination problems, changes in the muscles (spasticity & flaccidity), subluxation, contracture, pain, swelling and a host of other symptoms and combinations of symptoms. The resulting presentation can render the upper limb virtually ‘non-functional’.

A well-known feature that can creep in is called ‘learned non-use’, where the stroke survivor quickly gets very good at doing most reaching, grasping and releasing tasks with their less-affected, functional arm… ultimately him or her to forego efforts to improve the more-affected arm. Which is not good at all. Stroke survivors really want to know therefore whether intensive rehabilitation really does improve their upper limb motor control processes and reduce their impairments. And if it does, how should they go about getting this/doing it?

There is converging evidence that more therapy might result in better outcomes: current evidence suggests that intensive rehabilitation therapy helps people regain movement in their affected arm in the first few months after stroke. However, stroke survivors get to believe that little (if any) improvement can be made later on, which is sad, because we know this is not true.

Regaining lost movement may be possible many years after suffering a stroke, thanks to intensive rehabilitation therapy methods and inclusion of some principles, concepts and augments into rehab programmes, one of which is the use of robots. With the right therapy combinations, people can see improvements in movement, everyday function, and quality of life. Witness, for example, data which has emerged as a result of survivors attending the Queen Square (London) Upper Limb programme. See report in ACNR Journal. A majority improved in key clinical scores of motor impairment and arm function measured at admission and discharge and retain these improvements at 6-week and 6-month follow-up. Moreover, these are people improving months to years after their strokes occurred.

Is it the higher dosages of physical therapy/task-practice? Is it the combination of robotics and related augments alongside therapy/task-practice (therapy/task-practice aimed primarily at ramping up the dosage of repetitions on tasks)? For sure, as the RATULS Trial has emphasised, we need adequately powered dose-finding studies of promising interventions, tailored to targeted subgroups which also take into account potential cost-effectiveness to better understand the parameters involved.

Studies like the below hope to provide crucial data: please look!

STROKE SURVIVORS INVITED TO COME TO THE INSTITUTE OF NEUROLOGY

An invitation to volunteer for: MOvement Control After Stroke (MOCAS)

The purpose of the MOCAS study is to examine and understand the mechanisms that underlie these improvements using a purpose-built robotic arm device to study movement kinematics.  This knowledge is crucial to progress in the field and for the ongoing optimisation and development of stroke rehabilitation programmes. Understanding how these changes occur is basically key to developing and optimising rehabilitation for survivors.

Taking part in the MOCAS study:

Background:

50 patients admitted to the QSUL programme have already been tested and the researcher, Dr Angelo Dawson, is now following them for 6 months post discharge.

Where you’re invited to participate:

He also needs to recruit a control group of stroke survivors who have been left with some degree of arm weakness but who are not going through the QSUL programme… and who would like to come into the motor control lab at Queen Square for two testing sessions with him. These would be approximately 3 weeks apart and you would be performing the same robotic arm reaching tasks and simple clinical tests of arm movement and strength as the patients who have gone through the full programme.

It is the view of ARNI that being part of a clinical research study can ALWAYS push/point you towards new directions that you may not have ever thought about. You MUST check this opportunity to attend this world-class facility out!

Download here a brief MOCAS Study summary sheet, the study advertisement and the full information sheet for stroke survivors.

Once at Queen Square, Dr Dawson will:

1. Explain the MOCAS Study to you in detail and answer any questions you have
2. Accurately measure and assess your ability to move and control your weak arm using a special robotic arm. The robotic arm supports the weight of your arm and allows you to make frictionless movements as you perform a simple reaching task
3. Measure the size, muscle strength and range of motion of your arms
4. Quickly assess your levels of tiredness and energy during the session

• The first testing session will last no longer than 60 min in total; the second testing session will last approx. 45 minutes. Sessions will be arranged at a time that is most convenient for you.
• The information that will be gain from your participation in this research project will increase knowledge of how people continue to recover from a stroke in later months and years and guide the future expansion and development of rehabilitation services for stroke survivors.

Please contact Dr Angelo (Ang) Dawson to take part and for further information:

ang.dawson@ucl.ac.uk

ang.dawson@nhs.net

(UCL/UCLH Project R&D Ref: 17/0209; IRAS ID: 222832; REC Ref: 17/LO/1466)

Professor Nick S Ward, MBBS, BSc, MD, FRCP is Professor of Clinical Neurology and Neurorehabilitation at UCL Queen Square Institute of Neurology, and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. His clinical and research interest is in stroke and neurorehabilitation and in particular the assessment and treatment of upper limb dysfunction. He uses structural and functional brain imaging techniques to investigate mechanisms of impairment and recovery after stroke.

Kate Kelly, MSc, BSc (Hons), BAOT is a Consultant Occupational Therapist at The National Hospital for Neurology and Neurology and is clinical lead for hyper-acute stroke, acute brain injury and neurorehabilitation OT services. She specialises in stroke rehabilitation and complex inpatient neurorehabilitation with a special interest in upper limb and vocational rehabilitation.

Fran Brander, MSc, Grad Dip Phys, MCSP is a Consultant Physiotherapist at The National Hospital for Neurology and Neurosurgery. She trained at Guy’s Hospital School of Physiotherapy. She obtained her MSc in Advanced Neurophysiotherapy at UCL. She specialises in complex inpatient and stroke rehabilitation and has a special interest in upper limb rehabilitation.

Switched-on stroke survivors are aware that the neurorehabilitation evidence base updates continually. But are you keeping current enough to help yourself optimally? Find out at the UCL World Stroke Day Forum!

This event, on 29th October 2019, features interactive workshops, discussion groups and talks centred on the latest developments in Stroke Research and Rehabilitation. The afternoon session talks/workshops will be the same as the morning ones, and vice-versa (see full detail below).

Timings: 09:15 – 16:15 (AM 9:15 – 12:00 PM 13:15 – 16:00).

Address: Church House, Deans Yard, Westminster, London SW1P 3NZ.

Hosted by the Wellcome Centre for Human Imaging and UCL, with representation from world leading clinicians and researchers from UCL and UCLH, alongside charity contributors such as Stroke Association, The National Brain Appeal, SameYou, ourselves at ARNI Institute Stroke Charity, and Different Strokes, this event aims to empower Stroke Survivors to contribute to, and influence the future of, Stroke Research and Rehabilitation at UCL.

The event will host a number of open talks and workshops, covering topics as diverse as speech rehabilitation, functional rehabilitation, post-stroke fatigue and life as a younger stroke survivor.

Tickets are completely free but must be reserved via Eventbrite or if necessary via email or phone. Tickets are first come first served, so do advise any contacts of yours to book quickly and specify the ticket type that they require! Scroll down for details…

Alongside this, UCL World Stroke Day Forum provides an expo area offering 10 stalls and the chance to sit down with leaders in the field of stroke research and rehabilitation. The expo provides opportunities to follow up on topics from the featured talks and workshops, gain further support from relevant charities, bodies or research centres, or get involved with research and clinical trials.

Timings and Sessions for Morning Session (Afternoon Session similar)

09:15 AM: UCL World Stroke Day Forum opens for registration

09:45 AM: Official Opening speech

10:00 – 10:25 AM: Session one: talks and workshops

10:30 – 10:55 AM: Session two: talks and workshops

11:00 – 11:25 AM: Session three: talks and workshops

11:30 – 11:55 AM: Session four: talks and workshops

12:00 PM: Event ends.

The expo area will be open continually throughout the event from 09:15 AM until 12:00 PM.

More Information

All attendees will be provided with a UCL World Stroke Day Forum bag and a program of available talks and workshops on the day. The event is open primarily to Stroke Survivors and their friends and families, but there are also spots available for practitioners. Please specify the type of free ticket you require on ordering. Tickets are free and distribution  will end at 4pm on 28th October 2019. If you would prefer to book tickets for the afternoon event instead, follow this link: https://www.eventbrite.com/e/ucl-world-stroke-day-forum-pm-session-tickets-69006170313=0

For more information about last year’s forum, see: https://www.ucl.ac.uk/brain-sciences/news/2018/oct/ucl-world-stroke-

As a stroke survivor, you probably heard the term ‘goal setting’ from your multi-disciplinary team who helped you in ‘the early days’. This is because goal setting is considered ‘best practice’ in clinical stroke rehabilitation and its benefits are well recognised. Let’s have a look now about how to translate this practice into something that you can do by yourself when you get home, by yourself or with collaboration from a family member or friend.,

First, it is recognised that even though goal setting is embedded within community-based stroke rehabilitation given by NHS, practice does vary and is potentially sub-optimal. Further, to date, few randomised controlled trials have been completed to demonstrate that goal setting makes a unique contribution to stroke survivors’ rehabilitation outcomes.

You have received 6 weeks of community therapy, or you may have had much more, but many people after stroke feel that therapy ended much quicker than you may have liked. And if this therapy is now in the past, you will may possibly feel that it hasn’t optimally prepared you to try and haul yourself through the aftermath of stroke: ie, coping and trying to flourish as a stroke survivor, minimising multiple physical and psychological problems you may have been left with.

Unsurprisingly, a common denominator of many stroke survivors is that they believe (important to stress ‘believe’) that they have not been shown how to rehabilitate themselves effectively going forward.

Most usually understand that they need to ‘retrain’ themselves somehow, and are keen to go for it. And their supporters are keen to help them achieve their goals. But the same people hit a common wall, because they cast about in vain to find the best single way forward. It can take years for stroke survivors to exhaust presented (often very expensive) options, not realising that they had considerable power all that time to change their ‘status quo’, by planning and working out how to deliver self-set goals.

Often, not easy to do – but not particularly difficult either. Where does this leave ‘goals’? Will those things that the multi-disciplinary teams agreed with you to achieve in the community be the same kind of things you need to work out in the ‘real world’ and tackle as you move further away from from your time of stroke?

And how are goals supposed to be set and stuck to without that ‘negotiationary’ aspect to the process that the therapists helped you with in hospital and during  community therapy?

All reasonable questions – let’s break it down to component parts: 

Overall, most stroke survivors want to  ‘normalise and de-medicalise’ their lives again. They can set goals to do this.

Goals are things you would like to achieve. Many stroke survivors will want to restore lost function, and be able to do the things that they could do before their stroke. These are broad aims that may seem unachievable, and they may not know how to start, but defining goals can help then to break these aims down into smaller, more achievable goals.

Goal setting involves some planning and thought, but usually does not take overly long to do. It basically provides you with the steps to move from where you are now, to where you want to be. You’ll find it to be an empowering process, giving you the chance to take control of your rehabilitation.

To do this, you’re going to ‘get specific’ and ALSO ‘get broad’. Stroke survivors often have very individual hopes for the here and now, and also for the future, in terms of the goals they would like to achieve.

So. once all your therapy finishes, how do you do it? All good questions. To find out the answer, let’s get back to basics.

Where to start.

1 – Identify your goals!

When thinking about goal setting, the first thing to do is identify your goals, ask yourself ‘What do I want to achieve?’

When setting personal goals, specificity is king. For example, just challenging yourself to “do more work” is way too vague, as you’ve got no way of tracking your progress, and no endpoint. Simply put, if your goals aren’t quantifiable, achieving success can be challenging.

SMART goals can  the answer, as you can break them down into five quantifiable factors.

Try and look at goals in this way: they should be specific, measurable, achievable, realistic/results-based/relevant and timely (SMART). These specific goals should be meaningful to you, and be a mix of highly achievable and reasonable. That said, its good to throw a few unlikely ones in to the mix, which you can do your best at achieving.

Include short-term, mid-term and longer-term goals. Rehabilitation is a journey and takes time. Your goals will reflect this.

By the way, goals that move you forward are almost ALWAYS ABOUT YOU.. DOING THINGS. Not THINGS BEING DONE UNTO YOU.

And in the meantime so much can happen or, in particular, not happen.

Let me stress that you don’t have to become fanatical to achieve success in stroke recovery. Many stroke survivors are living day to day feeling frustrated with their lot. But frustration doesn’t negate intrinsic motivation. This motivation is drive you stimulation/drive you to start, and persevere.

Here some examples of common goals;

• To walk indoors independently
• To walk upstairs safely using a hand rail
• To dress upper body independently, threading t shirt over weak arm
• To stand to pull up trousers
• To be able to cut a slice of bread
• To butter toast
• To manage independent exercise programme
• To maintain range of movement in hand, wrist and elbow
• To open a tablet bottle
• To remember when to take my tablets
• To know what my medication is for
• To get in and out of the car safely
• To be able to type an e-mail accurately
• To practice golf on a driving range

EXAMPLE: So, perhaps you would like to walk upstairs independently. Great! That might be a longer-term goal.  First you must be able to stand with support. Then, you need to be able to lift one leg and support your weight with the other leg. Then you need to move yourself up a step.  Review what you can do now and work from there.  Stepping up could be a very difficult thing to do straight away, so your short-term goals might include specific exercises, for example marching, or squats, that strengthen the muscles that you need to climb the stairs. Once you have mastered this, you could increase the repetitions, or move on to stepping up to a low step. Then increase the height of the step, or the number of steps, and so on, until you complete the longer term goal of walking up stairs independently.

Whatever your personal goal, the trick is to break it down into smaller, achievable tasks.

Big Tips from Tom –

• Be ambitious but get someone to help you regulate your ambitiousness: in practice, ‘run it past someone who knows you well”,
• Reveal your limitations: if one of your primary goals is not to reveal your limitations for as many hours of the day as is possible, this can create an anti-risk paradigm towards your recuperation and self-training, it is highly unlikely you will do what it takes to progress.

Prioritise what you want to achieve. Hey, you don’t have to think about working out how to master everything at once… too many goals and trying to accomplish them is far too overwhelming and exhausting. Work out what you want to aim for first, and move to step 2.

2– Make a plan

Once you have identified your goals, you can start planning for their achievement and work out how to incorporate this into your routine.

How will you measure your progress, and over what time-scale? For example, you decide to master a few smaller steps before reaching for the staircase. But, how will you know when to move onto the next challenge? You might get bored with stepping up a few steps, and run the risk of becoming disheartened or become content to just do that, losing sight of your original longer-term goal. Instead, your goal could be to step up 10 small steps after 4 weeks. This is a time-specific and measurable goal. It keeps you focused and gives you something specific to aim for.

When you can measure goals, you can appreciate your progress, and this is so motivating! Thousands of people have found this very thing out after stroke. Just what you need to keep you moving forward.

Involve family, friends and carers.  Their input is valuable, and you might want their help. They might think of things that you haven’t thought of, or provide that supportive arm, and it can helpful to get their perspective. They will be part of your journey. Time to start on that journey – move to Step 3.

3 – Do it! 

Armed with your planner – do your ‘retraining’, practising formally and also by simply doing activities of daily-life. Record what you’re doing. Don’t overload yourself, but make sure you challenge yourself.

A great tip for you would be: in retraining situations it is important to advance quickly toward practice of whole tasks with as much of the environment context made available as possible. For example, say, a goal of yours is to improve the action control of your paretic foot for being able to cope whilst walking outside, unsupervised and with no supports. The best retraining you can get is to ask a trainer or friend to plan a route for you to go with him or her, so that you can trial it safely and under careful supervision. You can work on leaving a stick behind or reducing the use of an AFO according to your current levels of ability.

A unifying similarity amongst successful stroke survivors is not cognitive or affective (relating to moods, feelings, and attitudes), but willingness to strive for goals deemed ‘unachievable’ for them by those around them (as worked out in your Steps 1 and 2).

CLICK PIC OF STROKE SURVIVOR DOING THE THREE PEAKS CHALLENGE WITH ONE OF OUR ARNI INSTRUCTORS, KIERON FRANKLIN FROM POOLE, WHO HAS TAKEN SOME OF HIS STROKE SURVIVORS ON THIS FOR THE LAST 2 YEARS. DONATE TO ‘MOUNTEMBER 2019‘ IF YOU’RE FEELING GENEROUS!

Tip – motivation is key – if you’re not intrinsically motivated, you’ll have no incentive to push beyond generally accepted boundaries.

4 – Review your goals regularly.

Life may take you in another direction, changing the attainability or suitability of your goals. You may be working towards them faster or slower than you anticipated, or may find that other goals have taken priority. Whatever is happening in your life, it is perfectly OK to adapt or change your goals to suit you where you are now.

Keep talking with the people close to you, try to stay positive and motivated. Also, help/guide others who are going through a similar experience, if you come into contact with them in person or online – this actually has an effect to keep YOU motivated…

5 – Identify barriers to effective goal setting, then adapt and overcome.

Barriers could include communication difficulties, cognitive impairment, fatigue, mood disorders, other health conditions and even a lack of knowledge or understanding of your problems/condition.

If you feel you may have these, or other barriers, don’t let it stop you setting your own goals.

Take time to ensure that your goals are what you want to achieve. Try to enlist the support of positive people who will take the time to work through what you want to achieve, whether they are family or carers, or therapists/instructors. Positivity breeds positivity.

Be aware of your limitations, but almost everyone can improve and become more functional. Listen to your body and adapt your goals accordingly. You could just break them down to smaller tasks, or do them a different way.

If you are too fatigued, don’t struggle. Rest and return to the task more refreshed.

Educate yourself; there is a wealth of information available about stroke and self-help online and through books.

You can read more about goal setting in The Successful Stroke Survivor, as well as lots of innovative ways to encourage rehabilitation after stroke.

What if I need more help?

Working with a therapist or trainer can be really motivating. This collaboration combines your initiative and drive with the knowledge and experience of a professional. For example, ARNI instructors are specifically trained in methods of stroke rehabilitation and will work with you to identify goals that are functional and personal to you, and together you will strive to achieve them. Empowering you to take control of your rehabilitation.

CALL ARNI now on 0203 053 0111 or write in to receive an info pack through the post. 

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