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If you are able to transfer from bed to chair independently or with assistance, you may be offered an Early Supported Discharge (ESD) as long as a safe and secure environment can be provided. The team is responsible for making sure your home is suitable, that your family is supported through this change, and you must all be in agreement that this ESD is the best course of action for you.

Your family and/or carers must be involved in every part of the planning for your transfer of care. Your family/carers might need – and should take up – training in caring for you – for instance, in moving, handling, helping with dressing and so on. You should expect to receive the same intensity of therapy and range of multidisciplinary skills available in hospital.

A key point: your family/carers really should plan, whilst you’re still in hospital, for when the community therapy team finishes.

They need to do the Googling and makes some calls. They need to engage an independent physiotherapist (who can literally be gold dust if they are not traditional therapists and instead, do task-training and strength training with you and advise appropriate adjuncts to training) who can come in to your house after community therapy finishes. Be careful that you are offered a reasonable rate.

Or they/you can call ARNI, and get linked with one of my own group of 130 active stroke specialist physios and trainers, who deliver the above at usually a lower cost as they are tasked to offer a reasonably charitable rate including petrol. Cost is only half of the reason that you should think about engaging an ARNI trainer however as there are some literally vital techniques for the stroke survivor’s armoury that they can teach you.

Early discharges from hospitals are a good idea to free up hospital beds and to get you back to familiar surroundings once again. But only if the support mechanism of your further ‘re-training’ is in place. Often the support can finish too quickly, leaving survivors (and usually their families/carers too) worried about what to do next, and who to go to for further help. Outpatient therapy and community care, or the lack of it, is often quite wrongly, blamed for not solving all problems.

Being at home is good. It really is all just much better at home. IF there is support for you there, and you are not just returning back to somewhere where you cannot cope with being, for whatever reason. This needs careful management and forethought.

There is evidence that you can recover physically just as well with a therapist’s or trainer’s help and ‘retraining’ yourself at your home rather than at hospital. It’s good for you psychologically: you will see all your familiar things again – which allows you to feel more ‘normal’ and in control. You might feel that your rehab will not be as intensive now, and you may be right.

But relatively little therapy time (actually a homeopathic dose as far stimulating plasticity was concerned) was actually going on in hospital anyway due to time and resources. The therapists would have loved to have helped you for many, many hours per day but large workloads get in the way, so after community therapy is finished, you just need to ensure that you’re doing something everyday. This is where engaging help and self-rehab comes in – it’s the mix of both of these that will allow the successful creation of a progressive programme for you, which will be the rock around which every intervention from method (eg. CIMT) to technology (eg. upper limb robotics combined with VR) revolves.

So now it’s discharge time? Well, this is good! Don’t fear it.

All your information will be given to the relevant health and social care professionals, and you should have the same comprehensive copy as well. Your family members/carers, and to an extent you too, should try and become as informed as possible. They need to become the ‘expert patient’ on your behalf. They need to know your current and future needs, possibilities for improvement and how and where to get further assistance.

This information will include a summary of your rehabilitation progress and your current goals, your diagnosis and your current health status. Functional abilities, which include communication needs are included as well as your care needs – washing, dressing, going to the toilet, eating and so on.

It is vital also that information regarding your psychological needs are fully explored and understood by the community team as you may have cognitive problems and emotional needs at this stage in your recovery. The information about your medications, including your ability to manage them, your social circumstances, which include your carer’s needs, and your mental capacity with regard to your transfer decision are up there on the list for your health care in the community.

Included also is a risk management assessment which must include the needs of vulnerable adults.

Your family member/carers must make sure you are aware of the plans for follow-up rehabilitation and access to health and social care and how voluntary sector services such as Stroke Association, Different Strokes, ARNI etc can help.

What is Aphasia?

Aphasia is more common than you might think.

• every five minutes someone in the UK has a stroke.
• there are approximately 152,000 strokes in the UK every year.

About a third of these people will have Aphasia. Aphasia is a communication disorder that can affect a person’s ability to speak, to understand speech, and to read and write. It can occur after a neurological injury, such as stroke. Aphasia is mainly treated by speech and language therapy.

Aphasia research is ongoing; studies include revealing underlying problems of brain tissue damage, the links between comprehension and expression, rehabilitation methods, drug therapy, speech therapy, and other ways to understand and treat aspects of aphasia.

But currently very little information can be given to people with aphasia about whether their language will get better, and how long this might take.

The PLORAS research study aims to improve our understanding of how language works in the brain. Their goal for the future is to be able to give people with aphasia, their families and healthcare professionals a prediction about:

• How much language the person is likely to re-gain.
• How long this is likely to take.

So, the two ways to help stroke patients with aphasia?

1. STROKE SURVIVORS WITH APHASIA – come for an MRI brain scan

The PLORAS study is carried out by conducting structural and functional MRI scans with people who have had a stroke, and by carrying out a language test. Both people with and without communication problems are included. This information is analysed together with information about time post-stroke, to look for patterns in recovery.

Updates on the progress of their research can be found on their website,

or by downloading their latest newsletter.

Please get involved!!

Opportunity for non-stroke survivors to get involved!

2. EVEN IF YOU HAVEN’T HAD A STROKE, please come for an MRI Brain Scan.

Currently the PLORAS team is ALSO inviting people who have NOT had a stroke to have an MRI brain scan at their centre. Please help the team…

This is because they need some participants to act as ‘healthy controls’ to help them adjust their lesion identification software.

If you think that you might be interested, please get in touch by emailing ploras@ucl.ac.uk, or by calling 020 7813 1538. The team will need to ask some questions about your medical history in order to meet the strict safety criteria at their Centre.

The PLORAS research study is based at the Wellcome Centre for Human Neuroimaging and is led by Professor Cathy Price.

Below is a talk given by Professor Cathy Price – click and play!

PLORAS would like to thank ARNI for the support for stroke survivors

Other Support for Aphasia and Stroke:

PLORAS useful links – a list of organisations that provide information or support

Just a quick note on GDPR – Changes and Privacy Rights.

Welcome to the new Data Laws coming in to effect tomorrow: May 25th.

ARNI keeps no data about you at all except your email address. 

These are used once a month or so only by one person (Dr Balchin) to send emails concerning stroke rehabilitation. 

Just to let you know that we have your data safe.

Your privacy is important to ARNI and we take our responsibility regarding the security of your personal information very seriously.

To reflect the newest changes in data protection law (the General Data Protection Regulations – GDPR), and our commitment to transparency, we have updated our Privacy Policy.

Nothing is changing about how your information is processed, rather, we’ve updated the privacy policy on our website to improve transparency and describe our data protection practices. This updated version of the Privacy Policy is available on our website: Data Policy

If you would like to find out more about any of this, or have any GDPR related queries please reply to this email or contact support@arni.uk.com

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.

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?
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.

CALLING ALL STROKE SURVIVORS BASED AROUND WEST LONDON:

You can find more information here: https://doi.org/10.1186/ISRCTN60291412

Download the patient information sheet right here: RHOMBUS Participant Information

CONTACT: DANIEL SCOTT:07780 225384

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).

Need low-cost upper limb products right now?

Try low-cost ARNI Neuroreach, Neurostrong and Neurogripper for size. Click any of the recommended products below.

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’.

In 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.

What 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.

One 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 any anti-spasticity medications are appropriate and could help.

On October 13^th 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.

Professor 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