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Following stroke, 85% of people suffer from weakness and only 5-45% regain full function of their arm, resulting in increased dependence and reduced quality of life (Nichols –Larsen et al 2005, Kong et al 2011).  In addition, reduced upper limb function has been found to be the strongest predictor of reduced psychological well-being following stroke (Wyller et al 1997).

Dr Cherry Kilbride, who has done some pilot studies to examine the efficacy of the ARNI techniques, has asked us to disseminate information about a new trial she and her team are running at Brunel University.

The Rhombus Study

The primary aim of this project is to assess the feasibility (i.e. can it be used), and acceptability (i.e. do people like it) of using an intervention at home for the rehabilitation of the arm after stroke. This research study is funded by Innovate UK and is a partnership between Brunel University London and Neurofenix, a bio-engineeering SME (small & medium sized enterprise).

The current study will recruit 30 stroke survivors who can provide informed consent, who are 18 years old or over, who are at least 12 weeks post stroke, are not receiving rehabilitation for their arm from another provider (i.e. NHS or private therapist) and still have a problem with moving the arm (full inclusion and exclusion criteria provided in the Participant Information Sheet). Key exclusion criteria include pain in the arm at rest, and photosensitivity epilepsy in adulthood.

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The stroke survivors will use this device: the ‘Gameball’, created by Neurofenix. It is an upper limb rehabilitation device and software for gamification of stroke rehabilitation. Gameball is a portable device that uses either a hand controller or easy to put on arm bands that allow all in one arm training through uniquely designed rehabilitation games displayed on a laptop or tablet. The Gameball has been designed by bio-engineers with the input of stroke survivors and specialist physiotherapists. The Gameball has previously been tested for usability in a university setting and was positively received by all 18 stroke survivors and found to be safe and enjoyable to use

What does the study involve?
2018 04 14 15 56 07 - Recovery of Upper Limb: Try Gamification - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to Face
For a participant, the study will begin with a researcher attending the participants in their homes to perform a baseline assessment. One week later the researcher will deliver the Gameball device and train the participant how to use the device. The participant will then be asked to progressively increase the amount of time they use the device over the first week they have it. After that first week the participants will be asked to use the device as much as safely possible for 6 weeks. The participant will have the Gameball for a total of 7 weeks before the researcher then collects the Gameball and performs an assessment. The researcher will return 4 weeks later to perform a final follow up assessment. The total process will last 12 weeks.


You can find more information here:

Download the patient information sheet right here: RHOMBUS Participant Information



Why does this study focus on Upper Limb?

Rehabilitation for the arm post stroke is at best scant, as the focus of rehabilitation in the acute phase post stroke is on getting the patient home. Time spent on retraining the upper limb is very low (Lang et al 2009). Effective treatment interventions post stroke are characterised by high intensity and repetitive practice (Langhorne et al 2009). However, changes in infrastructure, resource pressures, an emphasis on mobility during rehabilitation and recent policies advocating earlier discharge home -such as Care Closer to Home- (DoH 2008) have resulted in challenges delivering the amount of rehabilitation necessary to optimise recovery (McHugh et al 2013). In consequence, there is a greater emphasis on stroke survivor’s exercising independently without the presence of a therapist. However, there are issues with delivering this, including problems providing feedback of results and performance,  measuring progress and ensuring compliance with prescribed exercise regimes (Deutsch et al 2007, Holden et al 2007, Durfee at al 2009, Golomb et al 2010, Hendrie 2011). Lack of perceived support and boredom with exercises are the most frequently cited factors associated with poor compliance (Hendrie 2011,Tijou et al 2010).

It has been suggested that the use of virtual reality games and activities could help address issues of boredom and compliance and therefore help provide the high intensity, repetitious practice necessary to drive recovery  (Saposnik et al 2010, Saposnik & Levin 2011, Laver et al 2011). In addition, the provision of visual feedback via an on-screen character (avatar) has been postulated to activate “mirror neurones” (brain cells involved in performing a movement which also “fire” when observing a movement) which has been suggested may aid recovery from stroke (Celnik et al 2006, Francheshini et al 2012).

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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 Centre for Functional MRI of the Brain. Her 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, her team’s work also has implications for understanding and treating disease. For example, they are testing new methods for rehabilitation after stroke and assessing whether taking up exercise could slow the effects of age on the brain.


If so, Professor Johnsen Berg-has asked us to disseminate a study in which you may be interested in participating – or you may know someone who is.

stroke arni upper limb oxford study 300x225 - Difficulty moving arm/hand after stroke? Neurofeedback - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceThe aim for this study is to research a treatment method to see if can improve upper limb function.

Many stroke survivors experience weakness to one side of the body, leaving them with difficulties in daily activities. Current physical therapies are limited in their success and are very time demanding. Therefore, treatments to use alongside rehabilitation are sought.

Learning is an important part of rehabilitation after stroke. When learning a new movement or skill it is important to get feedback so that you can repeat movements that were successful or try to adapt ones that did not work as well. What if there was a way to also get feedback of your brain activity when trying different movements?

Researchers at the University of Oxford are currently testing a new type of treatment for stroke survivors using MRI Neurofeedback. Neurofeedback involves participants being shown a live visual display of their brain activity whilst in an MRI scanner so that they can see which kinds of movements are best to increase the activity in the brain hemisphere where the stroke occurred.

Participants are asked to lie in the scanner and try to move their affected hand in different ways. The activity of their brain is recorded while they perform these movements and then shown to them as a ‘thermometer type’ bar that gets bigger with more activity.

Previous neurofeedback studies by Dr Heather Neyedli of the University of Oxford (Neyedli et al., Neuroscience, 2017) tried showing real or placebo feedback while volunteers who had not had a stroke moved their hands. They found that people could use this technique to change their brain activity while moving their hand.

There has been limited work with stroke survivors using this technique and researchers at Oxford are currently looking for people who have difficulty using their hand/arm after a stroke to take part in some MRI neurofeedback sessions to see if this treatment can improve motor function.

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

Mr Tom Smejka:

Dr Melanie Fleming:

Professor Heidi Johansen-Berg:


CALL 01865 611461


Example of visual display showing increasing brain activity

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Below is a talk given by Professor Johansen-Berg – click and play!


So, what’s the point of task-specific practice and why should you do it? Dutch researchers (Kollen, Kwakkel & Lindeman) way back in 2006 reviewed ALL available published clinical stroke rehabilitation trials, of which at the time of writing there existed 735. They selected 151 studies including 123 randomised controlled trials and 28 controlled trials. In their consideration, the rest either did not meet the inclusion criteria or lacked statistical and internal validity, reflecting the poorer methodological quality of many of the clinical intervention studies under consideration. The Dutch researchers concluded in their analysis that traditional treatment approaches induce improvements that are confined to impairment level only and do not generalise to a functional improvement level. In contrast, they concluded that evidence existed that: ‘more recently developed treatment strategies that incorporate compensation strategies with a strong emphasis on functional training, may hold the key to optimal stroke rehabilitation’.

P1030301 300x225 - Why should you task-train after stroke? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceIn summing up their findings, they reported that ‘intensity and task-specific exercise therapy are important components of such an approach’. I have found that there is a strong case for implementing and balancing both into an Approach, with the addition of strength training. It’s what I did (and still do) to retrain, manage and ‘negate’ my own physical limitations. And it is how so many others are being taught how to get some significant results in terms of upper limb capacity AND performance (in ADLs).

Although still under investigation for strong evidence of efficacy for stroke rehabilitation, task-specific practice can be said to be one of the best weapons we have to help retrain the brain. It means simply to train the action to be performed in a natural environment. For example, if you wanted to lift a mug and drink from it, you should take a mug and practice lifting and drinking from it, over and over again … and attempt to improve progressively and consistently. The retraining that you are going to do holds this method up as a very BEST paradigm to be following, and one around which lots of other improvement interventions can be introduced/tried, from active orthotics to technology and drugs.

Functional task-practice must not only reinforce recovery milestones, such as sitting balance, standing upright and the ability to walk but also tackle behaviours that are introduced after stroke. You need to be doing the task you want to do. So, for those with significant spasticity in the upper limb, to retrain the ability to open a glasses case to get your specs, for instance… you practise opening up a glasses case.

Get a ‘How-To’ Video. This online DVD about Real-life Upper Limb Self-rehab will show you lots of ways for people who are retraining at home to ‘retrain’ for normal tasks which involve reaching, grasping and releasing.

Task training is critical because it will ‘force’ you to practice using your more-affected limb. This is why the Evidence-Based Review of Stroke Rehabilitation (EBRSR) concludes that constraint induced movement therapy (CIMT) in clinical settings, for those who meet the qualifying criteria, shows strong evidence of benefit in comparison to traditional therapies in the chronic stage of stroke. CIMT is a great example of task training for the upper-limb. 30 to 66 % of stroke survivors report no longer being able to use the affected arm despite trying to rehabilitate and are in danger of avoiding using it (‘learned non-use’ or inattention/ neglect of the limb). Several factors might explain this phenomenon. First, you may see no reason to try and use your bad arm and therefore remain ignorant of underlying motor potential. Second, you may not know how to use any emerging isolated movement for functional performance.

In fact, emerging movement often overlooked: it is considered non-functional. But this is wrong. You actually need to try and regain an increase in active range of motion (AROM) in as many planes and pivots as possible.  Increase in non-functional AROM increases strength and muscle bulk, encourages muscular activity which promotes vascular return, decreases the potential for soft-tissue shortening, and damage with resultant pain and stiffness – and increases osteoblastic activity on the affected and often osteoporetic) side.

2017 10 24 12 03 09 249x300 - Why should you task-train after stroke? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceWhat you need to know is that now, eclectic therapists are seeking to fight on two fronts: teaching compensatory strategies for the sake of function and training the affected side to re-establish cortical control over the affected extremities by the ‘original’ neurons. This means that actually, compensatory strategies are not ‘bad’. Rather, they are now being recognised as critical to recovery.

Indeed, as action control is incrementally unmasked on the affected side, emerging movement should be recognised, celebrated, encouraged and built upon. The trick is making sure that compensations & recovery are both worked on, although the work will be separate in the short-term. In the long-term they will meld indistinguishably.

So, try to do MORE with your more-affected upper limb by yourself each day (ie work towards a new goal, and check retention during your ADLs constantly afterwards (because you can lose ability, just like strength (which is shockingly easy to lose). Repeated attempts to use your affected limbs in training creates a form of practice that can potentially lead to further improvement in performance. The ideal is to find oneself in a ‘virtuous circle’, in which spontaneous limb use and motor performance will reinforce each other and re-teach your body to control the position of an affected limb.

In formal retraining situations it is important to advance quickly toward practice of whole tasks with as much of ordinary 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 on the pavement, 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 your stick and/or supports behind or using/wearing them according to your current levels of ability.

Many stroke survivors can be assisted to retrain by advising them to have one place and a set amount of times per week in which they devote time to their retraining. I tend to promote the importance of setting up a small matted ‘training area’ in your house, which needs only to be a few square metres wide. You also need a chair and a small table with a task-board, more advanced challenge board and other small items on it.

You need to finding your own task specifics, according to your goals. You also need to work on ‘close-simulations’. Even though simulations are probably not as effective for motor learning as performing the actual task, and remember, we are after significant performance improvement via task practice, you can see that this approach gives you some great advantages. It keeps you in the training area, keeps you working on-task and keeps you safe. And then outside of the training area, you need to make an effort to practice the tasks (or the components of them that you can manage), as part of your ADLs, noting changes when you can.

dj therapy tom 300x191 - Why should you task-train after stroke? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceOne great example: I created ‘DJ-Therapy’ to get my upper limb working again. I basically made up a hugely successful paradigm which was suitable for me. How I did it is all listed in The Successful Stroke Survivor.

You can read how I started it ‘off-decks’, then used the decks themselves to absolutely superb effect – ‘training’ 5 or so hours per day. It was never ‘training’ per se, for me, however.

Making training ‘not training’ is one of the biggest secrets to getting optimal success with upper limb function. I wish more people would have a go at this idea. Have a think about what might be suitable for YOU to keep YOU practising and interested.

Messages from this post are:

  • Get clued up to understand how to set up a training methodology (a good number shown on these DVDs, for example)
  • Get some help from a physio, OT or trainer.
  • Perform as many specific, whole tasks of your choice inside a safe training area as you can.
  • Work on the ‘edges of your current ability’
  • If the task is not appropriate to perform in your training area, you should try and to practise for it using close simulations in your training area first.
  • Progress on task performance must consistently be checked outside your training area.
  • If you can, you should try and pinpoint new action control in your ADLs to something you are doing in retraining
  • And repeat! Many many many times. And have fun with it. Make things. Create.
  • Investigate to see if you can find any appropriate technology for stroke rehab.
  • For upper limb problems, if in England, see if you can be referred into the Queen Square Upper Limb service in London for an intervention (this requires a referral from your GP).
  • Also for upper limb problems, get assessed to see if drugs (ie, BOTOX, Baclofen etc) are appropriate and could help.

On October 13th 2017, the ARNI Institute for Stroke Rehabilitation and the Institute for Sport, Exercise and Health combined forces to run the ‘Recovery after Brain Injury – State of the Art’ Conference at the Royal Society of Medicine. Chaired by Professor Alan Roberts OBE, Professor Hugh Montgomery, Professor Helen Dawes and Dr Tom Balchin, the Formal Welcome was given by the Rt Hon, the Lord Lingfield, DL, Kt., and the Address was given by HRH Princess Katarina of Yugoslavia. The theme was recovery from acquired brain injury: stroke in particular.

Professor of Stroke Medicine at the University of Leicester, Thompson Robinson, noted the many strides forward in acute ischaemic and haemorrhagic stroke treatment over the past 10 years, which has contributed to a reduction in mortality from 25% to 12%. He stated that the most significant factor leading to better survival has been the introduction of specialist stroke units. He warned that with the number of people registered as hypertensive consistently increasing since 2005, that there could be up to another 6.8 million people in the UK with undiagnosed high blood pressure.

Professor of Stroke Medicine at Keele University, Christine Roffe, reported that early treatment with aspirin following the IST study has undoubtedly been a significant factor. Pneumonia, caused by aspiration of saliva and vomit, remains the most common cause of death after stroke, and there is good evidence that early screening for swallowing problems lowers the risk. Maintenance of normal physiological parameters, such as blood pressure, body temperature, oxygen levels, and blood sugar have also been shown to be important for better outcomes.

Professor of Neurological Rehabilitation at the University of Newcastle upon Tyne, Mike Barnes, spoke about the impact of brain injury. He noted that while there is now good evidence of the efficacy of multidisciplinary rehabilitation, the lack of appropriate rehabilitation facilities means that many people have less than adequate rehabilitation and thus do not meet their full potential. Specific rehabilitation problems were outlined, including the management of pressure sores, urinary continence, spasticity and nutrition.

Professor of Clinical Neurology and Neurorehabilitation at UCL, Nick Ward, noted that stroke appears to induce the critical period plasticity that supports recovery. Further, that we should seek evidence of this in humans to justify early and intensive therapy/training. He stated that the evidence shows that the window for plasticity may return to ‘normal’ levels after a few months, but it does not shut. Importantly, drugs (e.g. fluoxetine) are available to increase the potential for plasticity right now, but in order to know who and when to treat, he highlights the need for biomarkers of plasticity mechanisms in humans.

Professor of Cognitive Neuroscience at Oxford University, Heidi Johansen-Berg  confirmed how non-invasive brain imaging techniques can be used to detect systems-level structural and functional plasticity in the human brain. She stressed that although imaging is useful to detect such adaptations, many imaging measures are non-specific and do not allow us to pinpoint the underlying cellular changes that are driving observed effects. She predicted that in the future, imaging could be used to guide individually targeted brain stimulation to enhance adaptive brain plasticity.

Professor of Neurorehabilitation at the University of East Anglia, Val Pomeroy, reported on the creation of a free app called ‘Viatherapy’. This is designed to enhance the ability of clinicians to be current in their use of evidence-based stroke rehabilitation interventions for the upper limb. Through answering a series of questions that the app poses, the therapist is guided to the current best treatment options based on the motor impairment characteristics of each individual after stroke. These options can then be refined by considering other aspects of the individual’s clinical presentation such time after stroke and whether apraxia is present.

cathy price 265x300 - Recovery after Brain Injury: A Report - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceProfessor in Cognitive Neuroscience at UCL, Cathy Price, spoke about how people recover the power of speech after stroke. She confirmed that not being able to speak to family and friends is one of the most devastating consequences of stroke. Patients desperately want to know if they will recover but currently, clinicians can’t provide accurate predictions. Cathy and her PLORAS team are predicting recovery based on which parts of the brain have been damaged by the stroke. The results are proving to be much more useful than previous methods. The goal is to improve the quality of life for as many stroke patients as possible.

Consultant in Stroke Medicine at Imperial College Healthcare NHS Trust, Soma Banerjee, informed Conference about a stroke therapy using stem cells extracted from patients’ bone marrow which has shown promising results in the first trial of its kind in humans.  She noted that the study showed that the treatment appears to be safe and that it is feasible to treat patients early when they might be more likely to benefit. She noted that it is currently too early to draw definitive conclusions about the effectiveness of the therapy.

Associate Professor in Psychology Applied to Rehabilitation and Health at Exeter University, Sarah Dean, spoke about the evaluate the clinical effectiveness and cost effectiveness of the ARNI Programme (the ReTrain Trial). ARNI (Action for Rehabilitation from Neurological Injury) Institute Charity was set up in 2001 by Dr Tom Balchin. It provides a community-integration and support network for survivors by matching them with its therapists and instructors. These specialists teach its intensive and creative programme which features innovative techniques such as a rotational technique to get off the floor without assistance, and the use of implement-challenge boards to train the reach, grasp and release components of the upper limb.

Professor of Restorative Neuroscience & Rehabilitation at the University of East London, Duncan Turner, presented the results from some patients who had taken part in the RATULS (Robotic Assisted Training for the Upper Limb after Stroke) Trial so far. He charted the improvement in fine movement control in these patients before and after the intervention and stated that noted that robots, which can carry out 1,000 repetitions an hour, can dramatically augment the therapist’s power to deliver clinically-meaningful input volume.

Key emergent themes from the event were that early intervention, repetitive practice, meaningful tasks and intensity are primary drivers for successful recoveries after stroke. Our grateful thanks to guest speaker Michael Lynagh, and Advances in Clinical Neuroscience and Rehabilitation (ACNR) Editor, Rachael Hansford, who donated a box of the latest issues for delegates.

Download page report, published March 2018, from ACNR

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Many years of research suggests that the mobility and functional dependence of stroke survivors worsen over time and that accessing later rehabilitation becomes increasingly difficult for stroke survivors. This raises the big question: when should your ‘supported care pathway’ end? The ideal answer is ‘when I am better’.

The problem is that stroke survivors rarely simply ‘get better’ or ‘get back to normal’. Clinical rehabilitation therefore always has to be a compromise, due to time and resources allocated to professionals and patients. Just ask any hard-working physio or OT! And there are also some specific factors (Approach-specific factors, for example) involved in this compromise which will probably never be fully explained to your satisfaction, even if you were to ask.

51es4IOg20L. SX389 BO1204203200  235x300 - Does your therapy end too quickly? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceStroke survivors simply tend to know when therapy seems to have ended too soon. They can feel very neglected. Let’s quickly examine Professor Glen Gillen’s handbook ‘Stroke Rehabilitation: A Function-Based Approach’ (a must-get’ read).

In it is an inspirational account from his colleague, the late Professor Barbara Neuhaus (Director of Columbia University’s Programs in Occupational Therapy) who had a stroke in later life and wrote an inspirational description of her resilience and fighting back against her new limitations.

When she got back home from the hospital, different therapists came to her house and assessed her. All three independently signed off that she was too advanced to receive home therapy and so she lost eligibility for further therapy because she was too ‘well’.

Yet instead of feeling elated that these three professionals had all independently agreed she was well, she just felt abandoned and let-down and certainly felt that her rehab was very far indeed from complete.

I’m not sure this squares with US clinical practice guidelines concerning management of adult stroke rehabilitation care:

‘Patients who have sustained an acute stroke should receive rehabilitation services if their post-stroke functional status is below their pre-stroke status, and if there is a potential for improvement. If pre-and post-stroke functional status is equivalent, or if the prognosis is judged to be poor, rehabilitation services may not be appropriate for the patient at the present time’.

Is it that this community therapy failed to recognise the requirement for further rehabilitation, was there no money or time to help her further or was what they felt they could do for her in itself limited at the time? I don’t know. Interesting to speculate though.

Back here in the the UK, we know that many people, after discharge from community physio are clearly not ‘well-enough’ not to need further assistance. They may still be stuck in wheelchairs and/or using sticks and orthotics without much of an idea of how to proceed (ie, self-manage, self-rehab, diminish the use of functional aids over time etc) when the care pathway (from the hospital and community teams) has finished.

But really, it has to be said that the NHS has 99 times out of 100 (or so!) done their very best for them, with usually outstanding pathway – from critical life-saving care all the way to other leading-edge follow-up services such as Prof Nick Ward’s Upper Limb Clinic, which I hope will be used as a blueprint for similar services in hospitals around the UK.

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But here’s the thing. Community therapy obviously should phase into a much, much longer, joined-up and structured period of support. And I think all involved in stroke care would agree with me. But it can’t. The questions to be asked are then: who can help, and who will pay for it. Big questions.

A partial answer to the first may possibly be to activate a rung of professional therapists and exercise trainers to support the hospitals in the way that ARNI has done for years. The answer to the second is unclear and outside the remit of this blog!

Back to ‘what happens after therapy’. There is an interesting review of a workshop carried out by the Care Quality Commission (CQC) that I accessed way back in in 2009 that examines services for people who have had a stroke and their carers. The conclusions from the workshop echo the same stories we are told at ARNI every day. Some of the people involved were even our past patients and carers.

The report includes the comment which I get nearly every day on the phone from stroke survivors and carers as a way to precede asking for help. Quoting from the CQC document: “…often people have been given very negative prognoses. They write you off totally, giving you no hope.” It’s important to acknowledge that once YOU BELIEVE that someone who you view as representing the medical profession has told you this, there’s not much you can do to undo having been told it! It’s the way you respond to it that counts.

My view about this for many years is that often people won’t actually have been told ‘you’ll never move this limb again’, or similar, but it’s what they’ve come to understand as the sum result of the ‘it’s not ethical not give my patient false hope’ thing.

It’s actually the only way possible to proceed clinically, but the net result is people either simply giving up before they start, or go the opposite direction and going at their rehab with renewed vigour ‘to spite’ the consultant/physio or whoever they have labelled as the naysayer! I can’t tell you how many times I’ve heard this with stroke survivors who train with me. Personally, I’m not sure it’s helpful to give little hope to people – I hear this less and less now, thank goodness.

Back to a few more of the issues raised in this 2009 workshop. The people involved discussed how the physiotherapy they had received had been very good and said the physiotherapists had really cared for them. One participant mentioned how the physiotherapists had helped him get out of the house which was really important to his recovery (turning point) and commented that he still keeps in touch with them. The group discussed, however, that therapists are under a lot of pressure and some commented that their physiotherapy service had been cut-off after a certain period of time.

One stroke survivor felt that whilst in his experience the physiotherapy was very good in hospital, the physiotherapists never explained the purpose of the exercises they were given and how they would help. Another participant highlighted the importance of physiotherapists explaining the reason and importance of carrying out exercises. Some people talked about finding further help merely ‘by chance’, and said that they needed help navigating ‘the system’.

Another stroke survivor described how when he had a stroke he was declared medically unfit for work, ‘thrown out’; and had nowhere to turn. He went to the Citizens Advice Bureau but they did not have the expertise. On the medical side, he was simply sent home with no support or back up. He was told he would make a full recovery and had his benefits taken away. He said it was not until two years after his stroke that he was referred to the Stroke Association for informational help. Another stated that independent services are bewildering and it is very difficult to see what you might be able to get to fulfil your needs and help you live. He expressed the view that the voluntary sector is often better than state care services in this regard.

A carer said that the intensive physiotherapy received in hospital was not followed up after discharge, and that they had to wait several weeks after going home for home-based physiotherapy to start. She added that physio (once a week for 6 weeks) was not adequate and that, although instruction sheets were given for practising between sessions, there was no ongoing support after that time. As a result she paid for private therapy. 

But then maybe services in general have improved across the board in the 10 years since this CQC Report.

So, what do you think? Does community therapy end too quickly? And what can community services do better to support physical rehab? Also, what does usual clinical care tend not to concentrate on enough for individuals before discharge?

Upper limb impairment affects most patients at the time of the stroke, with persisting problems for between a half and three quarters of survivors. This can be partly explained by where the injury is in the cortex. But because regaining lost function in the upper extremities has been found to be more difficult to achieve than return of normal function in the lower extremities, only 14% of these will regain any useful function. Between 55% and 75% continue to experience upper extremity functional limitations.

Professor Nick Ward (who has kindly taught my ARNI instructor groups at UCL for around 10 years now) runs the UK’s first and to date only dedicated (and outstanding) Upper Limb Service at Queen Square. He states that upper limb recovery after stroke is unacceptably poor – and gives some stats:

  • 60% of patients with non-functional arms 1 week post-stroke didn’t recover

(Wade et al, 1983) 

  • 18 months post-stroke 55% of patients had limited or no dextrous function

(Welmer et al, 2008)

  • 4 years post-stroke only 50% had fair to good function 

(Broeks et al, 1999)

If you’re a stroke survivor, you know already that regaining upper body function is a very different task to rehabilitating the lower body. Nevertheless, the two ‘halves’ of the body are not so different after stroke. New evidence says that both the upper and lower limb are as weak as each other after-stroke, which suggests that the poorer recovery of the arm, so frequently seen in stroke patients, may not be an inevitable consequence of the stroke.

An excellent research paper by Professor Sarah Tyson and colleagues in 2006 called ‘Distribution of weakness in the upper and lower limbs post-stroke’ advises that the effectiveness and intensity of rehabilitation interventions should be considered. This may well be so: the majority of stroke survivors whom I’ve met, when describing their prior physiotherapy and any other rehabilitative efforts, will report that the focus of consistent therapy was usually on the lower limb and walking practice. A minority remembered consistently focusing on practising upper limb exercises.

This happens for a number of reasons, but primarily because it is critical to get stroke survivors walking, and also essential to keep spirits up with the recognition of progress, which probably is facilitated better by the thought of being able to walk again. So hospitals often do not have time to devote to extensive hand-function efforts, and by the time further treatment is sought, the task is all the more harder.

The evidence states clearly that initial degree of motor impairment is the best predictor of motor recovery following a stroke. So, functional recovery goals are appropriate for those patients who are expected to achieve a greater amount of motor recovery in the arm and hand. But the evidence also shows that compensatory treatment goals should be pursued if there is an expected outcome of poor motor recovery. We are even uncertain whether task-specific repetitive training improves upper extremity motor function.

It is vital that stroke survivors are shown, in clinic, ways to either train for progressive functionality or physical self-management techniques or/and both. Rather than leaving people to try and work it out for themselves once they reach the community.

Those with more potential can be shown how to radically ramp up the dose of repetitions performed with upper limb during the day, perhaps incorporating modified constraint induced movement therapy (a beneficial treatment approach which can be done at home, for those stroke patients with some active wrist and hand movement). Professor Nick Ward told me that Professor Gert Kwakkel and colleagues noted way back in 2003 that those showing some synergistic movement in the upper limb within 4 weeks after stroke have 90% chance of improving. 

We interviewed Professor Nick Ward to find out more about his views about what both therapists and stroke survivors can potentially do to improve upper limb outcomes after stroke:


You may well be interested in reading just some of the questions asked of me by stroke survivors. You may be asking yourself some of these same questions right now. Or may have conquered many of these issues already. These are a sample of meaningful issues drawn from just two places. First, from the sum of a trawl though hundreds of emails to ARNI from stroke survivors from 2007 to 2011. Second, from the sum of a trawl though notes taken next to baseline assessments (Stroke Impact Scale) face to face with stroke survivors. For more information, see the Successful Stroke Survivor manual, published in 2011.

  • Will I be able to walk properly again?
  • Will I be able to coordinate my body movement better?
  • Will I be able to converse properly again?
  • Will I be able to understand people?
  • Will I have to compensate or will I recover actual movement?
  • How weak will I be (muscle loss etc) after discharge?
  • How much rehabilitation will I need?
  • Does my type and severity and site of my stroke impact on my recovery potential?
  • Will my visual problems recede?
  • Will I be able to write properly again?
  • Will I stop feeling overwhelmed and fatigued?
  • Will I be able to drive? Catch a train? Go on holiday?
  • Will I be able to dress myself properly?
  • Will my spasticity (in upper limb/lower limb) recede?
  • Will it be hard to get back to running/being aerobically fit again?
  • Will I get back my full movement?
  • What is the timing, intensity, or duration of such activities I need to do?
  • Will my confidence return?
  • Will I enjoy life as much again with the things that stroke has left me with?
  • Will this affect how long I have to live?
  • How much do I need to rely on being motivated?
  • Will I have to drive this recovery myself?
  • At what point will my movement start to come back in my hand/foot?
  • Will I be able to wear high heels again?
  • Will I be able to do everyday manual tasks (using a knife and fork, opening jars)?
  • Will I be able to regain my strength, flexibility, balance & endurance?
  • Will depression due to loss of ability and abrupt change in life be a factor?
  • Is it true that there is a cut off point for functional recovery?
  • Will my sex life be affected?
  • How long will I need to rehabilitate for?
  • Will I be able to get back to my job/studying?
  • Will I be able to regain a high degree of independence?
  • Will I be able to become progressively more self-sufficient?
  • What current technology for stroke rehab is worth investing in?
  • Might I suffer a further stroke?                                                                            

20140303 145458 300x169 - 35 questions stroke survivors ask - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceNo consultant, therapist or expert in stroke research would attempt to answer the majority of these without preceding and qualifying the answer with an ‘if’. You are different from anyone else; from injury to the brain and plastic potential to occupational difficulties, demographic details to rate of recovery and lifestyles, making your presentation unique.

So although there are general principles of stroke recovery, and there are some common problems suffered by a majority of stroke survivors, no two stroke survivors ever shares exactly the same experience.

I will tackle all these issues in future posts – sign up now to receive the posts straight after posting.

The stroke rehabilitation literature suggests that the first three to six months are typically when most spontaneous functional motor recovery will occur. This first recovery mechanism is essentially a resolution of harmful local factors, which generally account for early spontaneous improvement after stroke. These processes include resolution of local edema, resorption of local toxins, improvement of local circulation, and recovery of partially damaged ischemic neurons.

After this time, please don’t let ANYONE tell you ‘that’s it’, because you then have the potential to restore significant function at whatever point from injury you happen to be, whether it is a month or 10 years.  You can take advantage of the second major recovery mechanism: neuroplasticity, which can take place early or late. This is the ability of the nervous system to modify its structural and functional organisation. The two most plausible forms of plasticity are collateral sprouting of new synaptic connections and the unmasking of neural pathways and synapses that are not normally used, but that can be called upon when the dominant system fails.

CIMT (constraint-induced movement therapy – check it out if you don’t know) is a magnificent example of intensive, ultra-focused repetitive work to drive plasticity. This simple but powerful ‘forced-use paradigm’ can be modified for use in your home rather than a clinic, This is the topic for one of my next posts.

So, mu advice is that it is useful to wave goodbye to the naysayers. Forget about any 1-year rule. Forget a 3-year rule. In fact, time to forget ‘the rules’, ok? Very limiting things, rules… because we tend to follow them blindly without asking why they are there or who made them up. Recovery can continue over a long period of time if you have partial return of voluntary movement, especially in the upper limb.  A systematic review of 58 studies confirms the most important predictive factor for upper limb recovery following stroke is the initial severity of motor impairment or function.

Furthermore, who says that you cannot be the exception to the ‘rule’? Potential is a difficult word. I personally have the potential to be astronaut. Probably won’t happen! But recovery potential? Don’t let anyone tell you that you aren’t going to make as good a recovery as possible. The reason is that there is ALWAYS something you can do to try to improve your lot. If all else fails, you’ll at least be keeping the ‘plastic template’ open and available for applications of current or future cutting-edge innovations. That’s why every repetition you do counts. More on this in a later post. For now, I can tell you for certain that time-rules and the ‘nay-sayers’ can be ignored.

IMG 2685 8 300x225 - Does a cut-off point for stroke rehabilitation exist? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceThe current UK National Stroke Strategy emphasises the need for long-term, therapy-based rehabilitation for stroke patients. Yet at the same time, there is insufficient evidence to support the development of more therapy-based rehabilitation, which is currently such an accepted part of stroke management.

Wider afield, in Florida, internationally respected stroke therapy expert Professor Pamela Duncan suggested that there is an urgent need to make additional strides in stroke rehabilitation research for such reasons, arguing that we still know little about how the characteristics (timing, intensity, or duration) of traditional therapies really work in comparison to others.

She was, and is still, right! This lack of data is also down to the fact that it has been felt over the years to be unethical not to ‘treat’ a large cohort of patients as part of a control group to test dominant therapies. Whilst the experts figure it out and continue to add to the growing body of high quality studies for the evidence base, I suggest that YOU (when you’re ready), start incrementally to make the rules for yourself, as I did.

To help you on your journey, you can use the complete system shown in the Successful Stroke Survivor manual  and there IS a lot of other help around – you just need to know where and how to look. You can be much more informed than I ever was 2o years ago at the time of my own stroke. You have absolutely nothing to lose. Who knows what you can achieve if you have no set boundaries? There’s absolutely no reason why you can’t ‘Do It Yourself’ to a large extent, after you reach some significant functional milestones, avoiding spending thousands of expensive clinical neurophysiotherapy in the process.

Importantly, you can significantly increase your ability to perform activities of daily life from ANY point in time after your injury. I’ll show you how. Not only that, but I can show you what you have to do to keep, and add to, your gains year on year. Make sure to tune in to further posts!

“If we could put exercise into a drug, it would be one of the most effective medications to  prevent vascular disease and treat patients with cardiovascular and cerebrovascular diseases including stroke.” Yep. And this statement is reinforced by the finding that exercise interventions are significantly more effective than drug treatments in both rehabilitation and reducing the odds of mortality among stroke survivors.

Chronic inactivity related to stroke basically has a whole load of physiological consequences that result in cardiovascular deconditioning, increased cardiovascular risk and increased mortality and morbidity risk.

The majority of survivors are cardiovascularly unfit. It has been found that due to the effects of stroke, you can even be rendered half as cardiovascularly fit compared to someone who has not had a stroke.

This can be worsened by a pre-existing cardiovascular condition, such as hypertension, congestive heart failure, peripheral vascular disease, or pulmonary and metabolic diseases. This is the bad news. The good news is that the evidence now also suggests that your exercise train-ability may be comparable, in many ways, to that of your age-matched healthy counterparts.

Despite the fact that the energy expenditure required for you to perform routine walking varies with the degree of weakness, spasticity, training, and AFO usage.. and is elevated by one and a half to two times that of non-stroke subjects…you can increase your cardiovascular fitness by a magnitude that is similar to that of healthy adults who engage in endurance training programmes. Improving aerobic fitness may allow you to carry out everyday activities with less effort and for longer periods.

So you’ve got to be active, right? There’s another crucial factor you need to know. There is growing evidence that exercise promotes brain neuroplasticity. Neuroplasticity mediates cognition and the relearning of motor skills and other skills after stroke. Brains learn what they do. Remember, the brain loves repetition. Cardiovascular exercise is repetition.

And for such adaptation to happen optimally, you must be prepared to do some focused work with whatever movement you possess (with some caveats, to be explained shortly), even if you believe you have none at all. Over and over again, with as much attention to detail as you can muster.

We’ll have a look at programming for cardiovascular fitness in further posts (watch out for my tips and hints coming shortly!).

But the take-home from this post is that I want you now to think of yourself as a CREATIVE stroke survivor. Take walking. Repetitions are required but ALSO you need to set goals and targets (actually, like me, you’ll find these are fast-moving targets): to get away from supports like wheelchairs, frames and sticks as soon as possible, to go further, to go for set distances, to feel less tired each time, to ramp up the quality of your walking by focusing on how you walk, to walk over different surfaces, to walk with an AFO and without, to tackle stairs, etc. etc.

Time to make a move! Get professional help if you need or ‘go-it-alone’. If you are setting up to ‘retrain’ by yourself, when attempting walking practice, dependent on your presentation, at least collar a young and strong family member or friend to help you. No-one will mind, especially when they see you making a darned good effort. The world is yours.

Even you have hired the help of a trainer or a therapist to get you started (advised), you must have input towards your own rehabilitation and the way you want to go. Knowledge is power. My aim is to show you exactly how to achieve 6 things:

  1. Correct balance, co-ordination and posture over time
  2. Increase muscular, tendon and ligament strength and fitness over time
  3. Decrease spasticity and increase specific functional movement return over time
  4. Increase confidence and remove fear of the consequences of exercising
  5. Become progressively more self-sufficient
  6. Become productive in an occupation and be happy with life

Can you take up the challenge? These can all be achieved by you to a certain degree, however old you are, if you want them badly enough and are prepared to sacrifice some time and effort. Can a generic programme be created? For example, is there one ‘programme’ that will fit everyone? It would be much easier that way, right?

The simple answer is ‘no’. But there are many things that all stroke survivors must do, and many things that most will need to do. You will start with basic tasks that you need to master in order that you can work towards more complex tasks. Everything you do will rewire your brain: by doing more, you will develop more motor control and gain strength. You will ‘get nothing by doing nothing’.

Please understand that the degree to which brain repair, neural rewiring and neurogenesis happens can be influenced very significantly long after the short therapeutic window after stroke may close.

stroke survivor1 300x116 - 6 targets you need to have as goals after stroke - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceSo, I hope to emphasise to you with this post that the regain of functional movement with control, strength, flexibility, stability and essential physical coping strategies are highly individual, relying as they do on your own genetics, status of accompanying medical problems, attitude (drive, persistence, desire and motivation) and so very many other factors.

The longer you’re a stroke survivor, the more you’ll notice that you can ‘win’ or control (manage) many of these but others will have to be accepted. And, I have to tell you, that re-training efforts can never stop, throughout the rest of your life. Sounds like bad news?! Not so… I’ll show why, in a forthcoming post.

Long term stroke survivors reading this will be nodding to themselves. New stroke survivors will get to understand what I mean (just read my next posts. The good news? ‘Retraining’ can very soon phase into an enjoyable and social physical activity wherein you are actively rehabilitating. So encouragingly, it seems that ‘formal training’ is finite… but it must be done right so you can phase into a maintaining status quo in some areas and regularly improve in others (usually micro-improvements).

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