News

Do you have difficulty sleeping after stroke? If so, you’re not alone.

Sleep gives you the base you need to have the energy for all your daily activities such as working, home life, driving and communication. But is it something about the quality of sleep you get or the quantity that you get that helps? And how does this knowledge help stroke survivors?

Although you may have had problems sleeping pre-stroke, you may have extra difficulties post-stroke. You may have trouble falling asleep or staying asleep. You might wake up several times during the night or wake up early and can’t go back to sleep. Or you may still feel tired after waking up and find it hard to nap during the day, even though you’re tired. You may find it difficult to concentrate or feel irritable during the day. Some people develop sleep apnoea (a sleep disorder characterised by pauses in breathing or periods of shallow breathing during sleep), teeth grinding or restless leg syndrome.

It is known that lack of sleep can affect your concentration, mood, overall health and how alert you are.

Researchers from the University of Oxford, led by Professor Heidi Johansen-Berg, together with the Oxford Centre for Enablement and the Oxfordshire Stroke Rehabilitation unit, have been investigating sleep in people with stroke and brain injury. Their study, funded by the Wellcome Trust, has just been published in the journal of Neurorehabilitation and Neural Repair.

They assessed 59 people with stroke and brain injury, who were staying in a hospital rehabilitation unit, as well as a control group of 55 people who had not had a brain injury and were at home. They report that people who had experienced brain injury rated their sleep quality as lower than the control group.

Furthermore, using sleep monitoring wrist watches they showed that, on average, people with brain injury had more disrupted sleep and spent more time awake overnight.

The researchers also wanted to know how sleep quality related to recovery.

They found that upon discharge from the rehabilitation unit, people with stroke and brain injury who had better sleep:

1. Scored higher on the tests of arm/hand function
2. Showed less overall movement impairment in their affected arm and legs
3. Were more mobile.

When looking at recovery of functional independence over the time spent in the rehabilitation unit, people with brain injury who had more consistent, less disrupted sleep recovered more quickly than those who had more disrupted sleep.

 What does this mean?

Dr Fleming reports: “As we anticipated, people in hospital following brain injury generally don’t sleep as well as people who haven’t had a brain injury and are at home. What is really interesting is that people who sleep better seem to recovery more quickly and have better outcomes from their rehabilitation.”

If you have any questions about the results of this published study, please get in contact with Dr Melanie Fleming on melanie.fleming@ndcn.ox.ac.uk

What next?

In the future the researchers are hoping to investigate ways of improving sleep quality for people in the hospital, and to see whether this can help boost recovery.

First though, they are investigating whether an online sleep improvement programme can help to improve sleep quality in stroke survivors who have already been discharged from hospital. If you have had a stroke and experience poor sleep, then you may be able to take part in this research. Would you like to take part? 

ARNI INSTITUTE NOTES: DO PLEASE GET IN TOUCH WITH DR FLEMING AT THE UNIVERSITY OF OXFORD ASAP IF APPROPRIATE – WHO KNOWS WHAT COULD EMERGE IN TERMS OF OPTIMISING FUNCTIONAL RECOVERY AS RESULT OF IMPROVING SLEEP?

‘HAD A STROKE? NOW WHAT? FROM HOSPITAL TO REHABILITATION AND BEYOND’.

With a revealing Foreword by broadcaster Andrew Marr, himself a stroke survivor, this seriously practical book reveals everything you need to know about for real-life, evidence-based recovery from limitations caused by stroke, that you can actually understand, use and apply successfully for yourself.

PUBLICATION DATE 01/06/20.

(PLEASE DO FORWARD THIS POST TO OTHER PEOPLE YOU MAY KNOW, AS APPROPRIATE)

With 244 Royal book size pages of new information and material, it’s the first book Dr Balchin has presented since the 2011 best-selling ‘Successful Stroke Survivor’, so you can imagine that it’s stacked with new thoughts and revelations for you based on experience, the neurorehabilitation evidence-base and help from the numerous experts in stroke in the UK and globally who he is lucky enough to be supported by/linked with.

This book, with photos and illustrations, is a one-stop ‘go-to’ to give to a family going through the painful process of having a loved one suffer stroke – or for the stroke survivor to get for themselves to add to their ‘ammo’.

Here you will find out how to cope with stroke, and recover from it optimally. It takes you through the full process; from arriving at hospital onward. Suitable therefore also for someone many years after stroke, this book reveals many hundreds of clever tips concerning how to rehabilitate effectively and self-manage at home over the long term in a relatively cost-free way.

Every stroke results in different outcomes, dependent on thousands of variables. A clear-cut background to stroke and the problems it may cause is presented. The author is a stroke survivor who has created and refined over the last 20 years, via his Charity, The ARNI Institute, the innovative ARNI approach to stroke rehabilitation. Here he shows you exactly:

• How to get through the acute hospital time and what family, carers and friends can best do to help.
• How to dramatically extend your ‘time window’ for potential recovery by taking advantage of your brain’s capacity for neuroplasticity.
• How to recover lower and upper limb action control balance, stability, arm and hand recovery as well as regaining strength and cardiovascular health over time. 
• How to develop creative physical coping strategies and how to self-manage using evidence-based strategies and smart tricks of the trade.
• How to find which practical aids are shown in the evidence to be most likely to work for you, and those which will not, from aphasia to vision.
• How to secure the appropriate rehabilitation assistance and financial assistance to suit your needs in the community and how to save significant amounts of money and time while doing so.
• How to gain an excellent quality of life after stroke, and get back to work if appropriate.
• How to ensure that successful familial relationships and intimate partner relationships can be achieved after stroke.

Many hundreds of other questions are answered with reference to the clinical experts and latest evidence base. He shows you that nothing in your recovery should be too complex. On the contrary, he shows you how you can make your rehab a fun commitment/hobby. And therefore, easing pressure from your loved ones and supporters.

This book will be of major assistance to anyone who has had the misfortune to have had a stroke and is entering the recovery phase. And essential too, for their families and supporters.

Endorsed with the Stroke Specific Framework Quality Mark (Reg. No 19755) by the United Kingdom Forum for Stroke Training and Education (UKSF).

Andrew Marr notes: ‘This book gives you in one place, so far as I’m concerned for the first time, everything that a stroke survivor in modern Britain really needs to know. It tells you what happened, and probably why, and what can be done about it. It doesn’t shirk the grim bits. It explains the jargon. But, while Tom Balchin doesn’t sugar-coat the assault on the brain and its effects, on almost every page he gives the reader reasons for optimism and essential information’. 

Review 1: ‘Who better to write a guide to stroke recovery than someone who has had one? And of those, there can be none better than Tom. He is smart, and studied the science to find ways to go beyond the usual. No quackery, this, but an inspirational and practical evidence and experienced-based recipe for recovery. I strongly commend it’. Review by Professor Hugh Montgomery, Professor of Intensive Care Medicine, UCL, Consultant Intensivist at the Whittington Hospital, Head of Centre at the Human Health and Performance, UCL Division of Medicine, Director of Research at The Institute for Sport, Exercise and Health, London. 

Review 2: ‘This comprehensive and empowering book is a must-read for stroke survivors and their families. The book uses Tom Balchin’s own experience of stroke, his knowledge of stroke as well as his work with others over the past two decades. It is highly readable and provides clear explanations of every step of the stroke journey as well as no-nonsense practical steps that everyone can take to improve their quality of life after stroke’. Review by Professor Heidi Johansen-Berg, Professor of Cognitive Neuroscience, Director, Wellcome Centre for Integrative Neuroimaging & Director, Plasticity Group at Oxford Centre for Functional MRI of the Brain, Oxford University.

Review 3: ‘Combining his academic expertise and clinical learning, Dr Balchin delivers an exceptional high quality text book for a wide target audience. In this wonderful guide, patients and families will find the essential knowledge they need to help maximise recovery potential after a stroke (or for that matter any injury of the nervous system). He also shows the rehabilitation professional the critical importance of empowering the patient to master their own rehabilitation’. Review by Professor Anand Pandyan, Professor of Rehabilitation Technology, Keele University & Associate Non-Executive Director of the Royal Wolverhampton NHS Trust.

Review 4: ‘This is an engaging, easy to read book, suitable for anyone on their journey following a stroke as well as for their family, friends and carers. It focuses on how to personally tailor the retraining of mind and body to optimise recovery from stroke. The messages contained here from Tom instil hope and confidence, and a desire to try yet harder and achieve great things that matter to the individual; yet the book is also written with compassion and kindness to accept limitations that may remain. Thank you, Tom, for putting together this road-map to recovery for stroke survivors’. Review by Professor Sarah Dean, Professor of Psychology Applied to Rehabilitation and Health, University of Exeter Medical School.

Review 5: ‘The book is an excellent guide for stroke survivors. It provides essential information about multidimensional aspects of stroke, from its impacts on the body to rehabilitation strategies. The illustration of fundamental exercises and explanation of evidence-based practice models make it highly appropriate for readers’. Review by Dr Mohsen Shafizadeh, Senior Lecturer in Clinical Motor Control and Movement Analysis, Sheffield Hallam University.

Review 6: ‘Rehabilitation after stroke remains a big health and social challenge in the UK and world wide. Thousands of stroke survivors and their carers/ families/ friends are constantly searching for up to date support and information on how to live a fulfilling life after stroke. Dr Balchin’s new book is a comprehensive document; an essential read for all individuals personally affected by stroke as well as healthcare professionals caring for stroke survivors. Covering various stages of stroke recovery in depth in addition to recommending specific evidence-based rehabilitation strategies, the book offers great insight and practical approaches into commonly encountered consequences of stroke. The book describes elegantly how stroke-related impairments can be managed early on before they result in permanent disabilities’. Review by Dr Khalid Ali, Senior Lecturer in Geriatrics and Stroke Medicine, Brighton and Sussex Medical School & Consultant Geriatrician at Princess Royal Hospital, Haywards Heath.

Neuromodulatory non-invasive brain stimulation (NIBS) techniques are experimental therapies for improving motor function after stroke. The aim of neuromodulation is to enhance adaptive or suppress maladaptive processes of post-stroke reorganisation. However, results on the effectiveness of these methods, which include transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) are mixed. It’s posited that recent developments in NIBS technology will likely contribute to individualised therapy. Moving beyond single-area stimulation, targeting specific muscle groups that play different roles in post-stroke motor recovery (for example, finger flexors vs. extensors) may well be possible using multi-locus TMS. NIBS in stroke faces a challenge reminiscent of the development of other stroke therapies, such as thrombolysis and mechanical thrombectomy, where early studies were largely mixed before patient selection and individualising protocols were refined to determine its therapeutic potential.

So, researchers at UCL want to find out:

• How brain activity changes after someone has a stroke.
• If weak, non-invasive brain stimulation could encourage the brain into a pattern of brain activity which is useful for upper limb rehabilitation.

If so, the Institute of Neurology at UCL invites you to join in with the ReCAPS study.

PLEASE TAKE ADVANTAGE OF THIS INVITATION IF IT’S APPROPRIATE FOR YOU!

ReCAPS: Re-opening the Critical period for Plasticity After Stroke. The study is funded by Brain Research UK (BRUK). ReCAPS is just a research study at the moment, not a clinical trial or therapy.

If you would like to attend:

You will need to have an MRI scan and attend 2 study sessions at the UCL institute of Neurology. Travel can be contributed to.

During sessions, you will watch a nature documentary while having very weak brain stimulation. Brain stimulation feels like a warm, tingling sensation on your head.

Please have a look at the flyer from the Institute of Neurology:

Or contact the researchers for more information:

Ms. Jenny Lee

jenny.lee@ucl.ac.uk

Tel: 0203 4488 774

 Dr. Carys Evans

carys.evans@ucl.ac.uk

Tel: 0203 4488 774

Website: https://recapsstudy.wixsite.com/research/

Neurofeedback is a brain scanning (MRI) technique that shows an individual a representation of their own brain activity while doing a task, so they can observe their brain activity and try to adapt it.

Over the past two years, a group of researchers at the Wellcome Centre for Integrative Neuroimaging at the University of Oxford have been conducting research into whether this technique  can help improve recovery of movement after stroke.

In this particular study, stroke survivors are asked to use different movements and strategies to activate the part of their brain that controls their more-affected hand/arm during an MRI scan. This is with the aim of teaching participants to engage particular parts of the brain – in order to increase the amount of movement they have in their more-affected hand/ arm.

Feedback of brain activity as seen by the participants.

“Try to increase the height of the red bar while keeping the blue bar low”

Professor Heidi Johansen-Berg, Director of the Centre, lead for the study, has mentioned to ARNI that the Centre is about half way through this study, and that they are still looking for more volunteers to take part in the study.

So, any stroke survivors out there – do look at this!! 

STROKE SURVIVORS ARE INVITED TO COME TO THE WELLCOME CENTRE FOR INTEGRATIVE NEUROIMAGING AT THE UNIVERSITY OF OXFORD

Here are some of the experiences of the participants who have taken part already.

Upon interviewing those who have taken part already, participants’ responses have been overwhelmingly positive, specifying both the enjoyment and fulfilment involved with taking part as well as a benefit to their motor recovery.

“You will certainly learn a lot from the experience and for me the study was transformational in further understanding the effects of my stroke and to learn how I could self-train further.”

“It is hard work, but is very worthwhile, not only for the research, but for self-awareness of the progress that can be maintained post stroke.”

Participants expressed that they felt others would benefit from taking part in the same way that they did.

Thomas Smejka, a researcher on this study, has noted that ‘…as researchers it is very important to us that our participants feel comfortable while taking part and we are incredibly grateful for the contribution they have made to our research’.

If you have any questions about this research, or would like more information about the study, please contact the researchers directly:

thomas.smejka@ndcn.ox.ac.uk or melanie.fleming@ndcn.ox.ac.uk

Or call one of the research team on 01865 611461 today.

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 take the opportunity to attend this world-class facility!

The Successful Stroke Survivor is one of the most popular and useful resources on the market at the moment for stroke survivors. Now the full manual, updated in 2017, is available on e-book (including Amazon Kindle) at HALF-PRICE of the printed version!!

With 175 five-star reviews on Amazon.co.uk, this book and techniques/strategies manual by ARNI Founder Tom Balchin is acknowledged to be very comprehensive. Because of this necessity, in order to present the evidence, approach, tips, hints and ‘tricks of the trade’, it is also quite heavy for some stroke survivors to fully use during self-rehab if upper limb limitations are present.

So, it is now available in one complete edition on ebook (1480 pages of real-deal advice of ‘skip-to’ sections), making it MUCH easier to use. 

Although essentially unchanged, there are also some updates to the text from the first, printed volume that are worthwhile reading/getting to grips with.

• Text-to-Speech: Enabled 
• Word Wise: Enabled
• Screen Reader: Enabled
• Enhanced Typesetting: Enabled

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..