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Can your ‘brain waves’ be used to identify the movements of your limbs? Can you use them to interact with virtual environments using only your thoughts? Maybe!

So, what if you’re a survivor who needs to work towards regaining action control? Maybe you’re struggling with displaying enough underlying motor control to even start a movement on your more-affected side?

As you know, there are around 1.3 million people who are living in the UK right now, coping with the effects of stroke. And you’re also no doubt very aware that after hospital discharge, many survivors come to lack access to the kind of daily intensive rehabilitation they need for maximal chances of recovery combined with the learning of effective coping strategies. Upper limb often doesn’t get tackled much clinically. So, what to do?

Evidence is piling up to reveal that therapy in combination with technological interventions (amongst other adjuncts) may be an optimal way, with a lot of dedication and effort, to provide enough ‘task dosage’ over time to stimulate sustained functional change.

‘Computer Gaming’ is one such intervention, via simple computer screens or virtual reality (VR) headsets. However, acknowledged existing barriers to rehabilitation games include their limited focus on specific movements, their single-player experiences and often, the absence of brain-based co-activation.

One way to try and bridge this gap for stroke survivors (to add in to the ‘mix’ of what you might try to do to retrain for upper limb function at home) is possibly by trying a ‘gaming’ experience which combines VR with electroencephalogram (EEG) and multiplayer option.

The idea of this would be basically to empower survivors to take more control of their own recovery; by increasing the focus, fun, duration, intensity and independence of their own retraining. You would be then able to track your recovery journey through performance metrics, with feedback from a therapist enabling better decision-making in your rehab.

The Department of Computing at Imperial College London is evaluating a platform called ‘CogiGames Home’, and have asked ARNI Charity to pass this message below to stroke survivors, carers (and professionals to forward if appropriate):

If you have limb weakness and live anywhere in London, would you like to come and try on a VR/EEG headset?

If you would, the Imperial research team will ask you to do some simple real and imagined movements of the extremities, and a game which you can control with your movements.

They will record your ‘brain-waves’ and the collected data will be grouped to train algorithms that can then be used to examine possibilities such as facilitating navigation in virtual environments, seamless user interaction with objects in computer gaming or even rehabilitation training of post-stroke patients towards regaining the ability to control their limbs.

The device is completely non-invasive and painless, with only dry electrode pads touching your head to detect your brain waves. The idea is to make it as comfortable and interesting as possible for participants.

The project has been approved by Imperial College Research Governance and Integrity Team (number 22IC7505), and is sponsored by Imperial College London. Currently they have already conducted the sessions with several stroke survivors, with generally positive feedback. 

The project is led by Dr Allan Ponniah, a consultant with Royal Free NHS Foundation Trust, and Dr Robert Simister, a consultant neurologist at University College London Hospitals NHS Foundation Trust.

Media coverage of the project can be found at: https://www.imperial.ac.uk/news/245755/cogitat-partnered-with-nhs-bring-neurotechnology/

Experiment details

How to sign up? You can express your interest to participate, by sending the research team an email at mybraincommands@imperial.ac.uk and they will get back to you with details on how to book an appointment and access the site.

Where? Room 307A, Huxley Building, 180 Queen’s Gate, South Kensington, London SW7 2AZ.

What do we offer? £30 is offered as a gift to each participant.

How long will it take? 40-50 minutes.

Who can take part? Any stroke survivor over 18 with upper limb disability (weakness in either or both arms).

The vision of the project

Following this experiment, the Department plans to proceed to the full device in the next few months. You will then be invited to try on the combined full headset with a fully developed ‘game’ which will be a robust and effective device for you and other stroke survivors.

We at ARNI understand from Imperial that they hope this will be an exciting and beneficial experience for participants! You potentially not only may benefit from personal cutting-edge rehabilitation but also contribute to the advancement of stroke recovery technology ‘in the round’.

Please join through the links above and the Department will be able to organise sessions as soon as possible at a time of your convenience.

For any question or comments, please feel free to get in touch with Ms. Na Lee (Research Assistant) on  na.lee12@imperial.ac.uk

Please join through the links above and the Department will be able to organise sessions as soon as possible at a time of your convenience.

For any question or comments, please feel free to get in touch with Ms. Na Lee (Research Assistant) on na.lee12@imperial.ac.uk

Drop (or dropped) foot is common after stroke. Every stroke is different, and so are its side effects. Some stroke survivors may face different types of paralysis and others might only deal with a slight speech impairment. Either way, all stroke survivors should be aware of the possible side effects of stroke, and foot drop is one of them.

This condition is related to high degrees of motor impairment, weakness or lack of voluntary control of your ankle dorsiflexors and increased spasticity of plantar flexors.

Foot drop interferes with the initial foot contact at the beginning of the stance phase and hinders ankle dorsiflexion during the swing phase of gait.

This changes the way you walk (it contributes to disruption in weight acceptance and weight transfer, reduces walking speed, efficiency and stability of gait), which in turn hinders your ability to complete everyday tasks and increases your risk of falls.

You may never recover completely from this very significant limitation, as with many effects resulting from stroke.

But it’s possible to learn, and create, some incredible combinations of strategies to manage this problem. An ARNI instructor can help you with this. 

The severity of your condition will dictate your requirements, but if you have this difficulty, you may need an ankle-foot orthosis (AFO). This kind of splint lifts your toes and supports your ankle so that you can put your weight through your leg when you stand. It then prevents you from catching your toes when you walk. By the time you emerged from the hospital you may well have been wearing an ‘off-the-shelf’ one or a custom one produced by the orthotics department.

A rigid plastic AFOs is intended to keep you safe, and by and large, it will. It will help keep your foot in place so that you can move safely.  But unfortunately, there’s some downsides to using an AFO. One known side-effect is that prolonged use can possibly guide you into ‘learned non-use’ of the muscular structures of lower leg after a while. This pattern of non-engagement occurs because you don’t have to work hard at a whole host of things such as maximal knee lift, actively engaging your hamstrings, beating circumduction, heel-striking, minimising ‘slappage gait’ and preventing ‘foot roll’.

However, an AFO may be the very best thing to help mobilise you. Wear one while you retrain, by the way, especially at first. For most, an AFO works in order to keep you safe if you have dropped foot, but the big secret to AFO is that you’ve got to actively minimise their use over time. This will help you slowly start to outgrow the need for one. Or outgrow the need for one which is quite so supportive.

How you’ll potentially regain independence and minimise the negative effects of foot drop, certainly insofar as to mobilise well?

A Dr Tom solution (!) (for select survivors of course, but this can be ‘tweaked’ per survivor to end up as ‘big, generalisable concepts for most survivors), goes like this (and do ask a therapist or trainer to add to the below as they see fit):

Re-training (repetitive walking practice plus appropriate strength training) PLUS a support/brace (as advised/applied by a therapist as appropriate AND how gradually to minimise their use if/as appropriate) PLUS techniques/strategies PLUS supportive footwear like neutral/under-pronator trainers and others.

Trainers? Yes. Most people have NO idea how much of a difference supportive shoes/trainers make after stroke. If you have any questions, ask me and I’ll do my best to answer, refer to the evidence and/or ask an expert colleague.

See my personal current ‘fave’: (I’ve had 3 pairs of these now: Salewa Trail Shoes ; they last for ages). Very expensive, yes, but these can make THE difference (although for a lady, they are hardly a delicate shoe!) for you. Experiment. These ones for instance seriously HELP with drop foot – and have Michelin Technical Performance soles, which is great. The ‘special rubber compound and design with selected grooves and studs ensures exceptional traction and stability on hard, uneven terrain’. Yes please.

The trick is that, as you put in the hard work and do more and more mobilisation, over time you might be able to graduate to a less obtrusive AFO brace or support.

You’ll need to buy and try these to work out which one suits you best. The best ones now are hinged and/or flexible. Some are made of carbon fibre. A new-to-the market support used by a number of my patients is the Turbomed FS3000 AFO.

Many survivors, over time, however want to find a very minimal and unobtrusive ‘stealth’ type of support, having worked out that the more minimal support they give to their foot, the harder they have to work in order to cope (which stimulates neuroplasticity massively). They may find a ‘figure-of-eight’ type support useful, with permission/advice/guidance from a therapist.

The ProMedics Lincoln Ankle Brace is a good example of one of such a support, and when I needed it, it worked for me too. I have residual dropped-foot so I know whereof I speak!

Btw, be careful if ordering/considering this particular brace/support, as the company have taken to pulling the strap as a seam from around the underside, rather negating its efficacy. Ask for the older version shown here (I’m fairly sure they can find old stock or just custom-make it for you).

Avoid any brace with a lumpy seam running along the bottom of it; this won’t be fun to walk on for long periods during the day. A tip is to wear a close-fitting sock between your skin and the brace or support to ensure comfort and help prevent rubbing.

Another support which works well is a Silicone Ankle Foot Orthotic. The Ottobok SAFO is a good example. A SAFO supports your foot not from below, but across the arch of the foot from above, in order to prevent the foot from dropping. The advantage of this principle is that because of the thin, flexible sole, you can feel the ground conditions directly and detect uneven surfaces such as stones and doorsteps. The result can be enhanced safety and self-confidence when walking.

Functional Electrical Stimulation (FES) for drop foot management reveals consistently in the evidence to be more effective than using an AFO. It can improve ankle dorsiflexion, balance, and functional mobility, especially when combined with physiotherapy. But we don’t know what the results are for users over the long term as far as users becoming reliant on the FES technology.

It is known that FES devices that have been fitted correctly in a specialist centre can enable patients to learn to walk correctly and go some way to minimising muscle wastage. Implantable FES devices have been available for many years also. 

PLEASE write below to help others who are considering using orthotics and/or FES for drop-foot. Or any other helpful suggestions you’ve found work well for you! Many thanks, Tom

Are you a stroke survivor with balance difficulties? If so, you’re NOT alone!

The evidence shows that training balance and gait during stroke rehabilitation is crucial for improving a patient’s mobility, reducing the risk of falls, enhancing their quality of life, promoting brain plasticity, and preventing secondary complications.

Balance (both standing and walking) training is the only effective treatment for balance disorders, as recommended by the National Institute for Health and Care Excellence (NICE) UK.

However, access to specialist balance training services is most often poor in the UK, due to the lack of enough specialists and sufficient health resources. Moreover, most current programmes can be sub-optimal in that they are not designed to be multisensory, do not include any cognitive component (which is a key factor in determining both static and dynamic balance), and do not address real life symptoms which have been widely reported by patients to be most challenging,

At University College London’s Institute of Neurology, a large-scale global research project (funded by a European Union Horizon 2021 grant), is under way (led by Professor Doris-Eva Bamiou) to build upon a completed HOLOBALANCE project (https://holobalance.eu/ ) which is posited to provide a comprehensive, individualised tele-rehabilitation balance programme that includes multisensory balance and gait exercises, physical activity, cognitive training and exergames to improve balance function in older adults with stroke.

The group is looking for a few participants to try out/view/discuss the kit (in person and on Microsoft Teams), and would very much like to invite you to take part, with £20 remuneration.

• You are between 50-80 years of age.
• You have received a diagnosis of stroke.
• You can independently walk, with or without, a walking stick for a minimum of 500-meters.
• Have no significant visual impairment.
• Are willing to provide feedback on the usability, functionality, and acceptability of the kit, including appearance, proposed training and testing regime.
• Then Please get in touch RIGHT NOW at: b.nairn@ucl.ac.uk

Brooke Nairn, UCL Institute of Neurology & The Ear Institute.

After stroke, physiological changes in the brain can lead to new and exaggerated expressions of behaviour. These have been found most likely to be experienced by survivors with significant cognitive, communication and physical difficulties. Behaviours can range in severity and most usually have functions such as communicating a frustrated or unmet need. Mood problems can impact engagement in retraining, adjustments to difficulties, reintegration to the community and vocations, and can result in higher care needs.

Depression is amazingly common after stroke. Around a third of stroke survivors experience it after stroke, the same percentage as those who suffer aphasia. It’s classified as more than just ‘being sad’. Someone who has this might feel ‘worthless’ or ‘hopeless’, experience intense anxiety and may even sleep more to ‘escape’.

Stroke survivors with depression often do less daily activities, such as contacting friends or hobbies. This can be due to a combination of factors including physical limitations (e.g., arm weakness), thinking difficulties (e.g., memory), aphasia and because having depression often makes it hard to feel motivated. Stroke survivors with suspected depression can be referred to a clinical psychologist by their GP.

Getting back to leisure activities after stroke has been evidenced to help depression a great deal. If you think you have ‘low mood’ after stroke, try searching online, if you can. You’ll find a vast number of resources out there for you to explore. Taking part in something that stimulates you, that educates and may also be a sociable experience, can also be an enormous part of your recovery. This is termed ‘behavioural activation’. This straightforward approach is as effective as antidepressants and Cognitive Behavioural Therapy, a leading form of talking therapy at treating depression.

Researchers from the Translational Neuropsychology Lab at the University of Oxford are interested in designing better treatments for depression in stroke survivors.

AN INVITE: The Oxford University team would like very much to hear from you if it’s appropriate for you: if you think you have ‘low mood’,  feel sad a lot or are depressed.

If so, you could help with research by just tuning in to an MS Teams meet.

In this study, they are investigating two different types of behavioural activation:

• Behavioural Activation plus a planning strategy for enjoyable activities
• Behavioural Activation on its own.

The researchers think both approaches may be helpful but are interested in seeing if there are differences between the two.

If you’re interested in taking part, you will receive 3 sessions of either type of behavioural activation above. This will be done online using MS Teams, one-to-one over 3 weeks. The type of Behavioural Activation you will receive will be chosen at random.

Do you match the following?

First, a member of the research team will contact you and see if you are eligible. This will involve them asking you some questions to make sure you are:

• Are at least 18 years old.
• You live in the United Kingdom.
• You speak and understand English.
• You have been diagnosed with a stroke.
• It has been at least 6 months since your diagnoses.
• You identify as having low mood, being sad a lot or being depressed

If you are eligible, you will then be invited to meet with a researcher on MS Teams.  You will be asked to fill in some questionnaires about your stroke history, your mood, activity levels and abilities in daily tasks. You will also be asked to do a thinking task.

Your participation will be entirely voluntary, and you can withdraw from the study at any point up until the anonymous data is collected from this study is pooled (end of August 2023).

The data from the questionnaires will be anonymised and you will not be identifiable in any publications that result from this study.

If you are interested in taking part and think you might be eligible, please email John Kinley at:

John.kinley@psy.ox.ac.uk

Or register online by filling in this form:

https://oxfordxpsy.az1.qualtrics.com/jfe/form/SV_blKhwBYBTPAbrJs

Thank you very much for your consideration and we hope to hear from you soon.

John Kinley, Translational Neuropsychology Laboratory, University of Oxford

For further help with this issue, please contact DEPRESSION ALLIANCE: A UK charity which helps people with depression, run by sufferers themselves. www.depressionalliance.org

Balance and gait are essential components of functional movement, yet balance and mobility problems are among the most frequent and disabling effects of stroke, with 7 in 8 strokes affecting those over 44 years of age.

Balance (both standing and walking) training is the only effective treatment for balance disorders, as recommended by the National Institute for Health and Care Excellence (NICE) UK.

The evidence shows that training balance and gait during stroke rehabilitation is crucial for improving a patient’s mobility, reducing the risk of falls, enhancing their quality of life, promoting brain plasticity, and preventing secondary complications.

By incorporating these activities into a rehabilitation programme, stroke survivors can improve their overall recovery, regain their independence reducing feelings of depression, while increasing participating in daily and social activities, and improving their quality of life.

See https://dev.arni.freedomonlineservices.net/how-to-regain-balance-after-stroke/ for more.

However, access to specialist balance rehabilitation services can be poor due to the lack of enough specialists and sufficient health resources. Current programmes can be sub-optimal in that they are not truly multisensory, do not include any cognitive component (which is a key factor in determining both static and dynamic balance), and do not address real life symptoms reported by patients as challenging.

Telerehabilitation i.e. the remote provision of rehabilitation by means of information and communication technologies (ICT) may address these needs. 

ARNI offers low-cost tele-session support to those already receiving one to one physical rehab with instructors in the UK, as well as a popular specialist speech and language telerehabilitation service designed in collaboration with a UCL doctoral student, which helps people from all over the world.

The new (April 2023) stroke guidelines state (click link): ‘People undergoing rehabilitation after stroke should be considered for remotely delivered rehabilitation to augment conventional face-to-face rehabilitation’

With this understanding on the importance of balance and gait training for rehabilitation in stroke survivors, a research team at UCL aims to improve accessibility, feasibility, and adherence of balance rehabilitation training.

Research, led by Professor Doris-Eva Bamiou, together with the University of College London, and global partners, are conducting a large-scale global research project to improve balance and quality of life in stroke survivors.

Their ambition is to build upon the successfully completed HOLOBALANCE project (https://holobalance.eu/ ) to optimise the rehabilitation protocol to provide a comprehensive, individualised tele-rehabilitation balance physiotherapy programme that includes multisensory balance and gait exercises, physical activity and cognitive training and exergames to improve balance function in older adults with stroke.

If you are a between 50-80 years of age, have suffered a stroke and are interested in contributing to improving balance, walking, mobility and quality of life for stroke survivors, please see the information below:

Join in to current UCL Research to Improve Rehabilitation of Stroke Survivors:

The UCL team would like to invite you to take part in a patient public involvement and engagement focus group. They would like to gather feedback from stroke survivors on the new HOLOBalance system and understand how to improve the system to address stroke survivor needs. This will provide you with an opportunity to express your views and opinions on the usability and functionality of the system.

• You are between 50-80 years of age.
• You have received a diagnosis of stroke.
• You can independently walk, with or without, a walking stick for a minimum of 500-meters.
• No significant visual impairment.
• Willing to provide feedback on the usability, functionality, and acceptability of the HOLOBalance system, including appearance, proposed training and testing regime.

What will be required of you?

During the focus group, the team will have you watch a video which explains the HOLOBalance system. The team will then conduct semi-structured interviews related to the system usability and experience. They may also ask you additional questions as a group, to gather further feedback on the system. 

Your participation is entirely voluntary, and all data collected during the focus group will be kept strictly confidential and anonymous. 

If you are interested in participating, please reply to this email by Monday, May 15^th to confirm your attendance. They will then provide you with additional details and information closer to the date of the focus group.

Please feel free to contact us now at: b.nairn@ucl.ac.uk

Thank you very much for your consideration, and we hope to hear from you soon.

Brooke Nairn, Research Assistant, UCL Institute of Neurology & The Ear Institute.

Ref: Van Duijnhoven HJ, Heeren A, Peters MA, Veerbeek JM, Kwakkel G, Geurts AC, Weerdesteyn V. Effects of Exercise Therapy on Balance Capacity in Chronic Stroke: Systematic Review and Meta-Analysis. Stroke. 2016 Oct;47(10):2603-10

So many stroke survivors, at varying points during their respective times from stroke, have no idea how to start (or re-start) their recoveries. Or they do know about some options. But in either circumstance a majority don’t know what to do for themselves to stand the best chances of gaining some functional success for their efforts.

This blog could help you get over both hurdles. Read and enjoy!

First, most stroke survivors can be assisted by advising them to have one ‘go-to’ safe and accessible place to regularly train (eg. a small matted ‘training area’, which needs only to be a few square metres wide, plus a small table and a chair), how to accumulate bits of kit (adjuncts to optimise re-training), depending on needs and budget, and a set amount of times per week in which to devote to retraining as well as how to perform much more regular (often upper-limb) functional re-training and maybe ‘what with’.

This is a all a great start, and most often needs help to do from physio or trainer qualified in stroke rehab.

Here’s how you can view re-training (my combo of rehab and training!): functional re-training isn’t just about attempting to do more and more difficult things around the house and outside. It is a specific re-training regimen combined with the everyday checking of progress.

For instance, upper-limb ADL progress checking would mean making trying out upper limb tasks in your environment, evaluating your status on each (if you can). So, if on one day you tried to open windows or doors and switch on the kettle or lights around the house, and on another day, you attempted to load a cutlery drawer and use a keyboard or remote control, you need to note in a diary or into an app if you have a perceived success in aspects of those activities where you had none or little before.

This may allow you to see if you can relate progressions to anything specific you may have been working on in retraining. It’s possible to become really ‘switched on’ to the smallest of progressions by doing this, which of course keeps retraining stimulating and ‘worth doing’.

Specific task-training can be very taxing to do however, if you have barely got the underlying motor control to initiate a movement. Read below what you can do, instead, at home if you don’t. It was one of the keys to my own success when recovering from a serious stroke, which I had to work out for myself at the time.

My tip for you is that by continually noting what seems to you to be progressions in ability (even if you’re ‘wrong’ in the view of a physio or trainer if you happen to have one) is a great way to give yourself constant boosts and keep motivated.

Keep self-evaluating. Functional retraining works well if you can create this kind of continual feedback loop to inform your next sessions and general optimistic outlook (if you can, of course). And this kind of charting/noting ‘what has been done/achieved’ is a good way also to begin to tackle fatigue, if you have it, over time.

To attempt doing this, you also need if you can to try your hardest to be ‘well-informed’ about the nature of stroke and the extent to which it really is possible to get back useful function after stroke in order that you’re not fooling yourself in terms of progression.

The reason why it’s important to be able to ‘contextualise/frame yourself’ in terms of the possible progress you can make by comparing yourself to existing data (seeing where you might fit or be one of those outliers etc), is that in the community, it’s very unlikely that you’ll be able to have any of the types of measures applied to you that therapists use clinically on patients unless one is working actively with a therapist.

We do, at ARNI, regular assessments with patients including Stroke Impact Scale, CAHAI (and arm and hand function measure) and a few others, but in the community in general, especially if just attending a group class, it’s quite rare to be have any kind of ‘assessment of training or quality of life progress’.

So the key to this all is to remember that tasks performed in retraining to help you perform ADLs don’t just have to definitely be the tasks themselves (for practical reasons). They can also be trained for via ‘close-simulations’.

These rely on you finding your own task specifics, according to your goals, and finding ways to work on them in a training area and then phasing to do/practice them outside the training area. Something as ‘everyday’, pre-stroke, as grasping and pushing a shopping trolley may have to be worked on intensively after stroke. And a therapist or trainer can help you to access these things by setting up situations to introduce concepts to you and ways to practice (do as many reps as possible and in the most appropriate way(s) possible.

For instance, if you love playing golf and really want to get back to it after stroke, it might not be appropriate to practise straightaway with your Number 5 iron in your house, unless you have a high ceiling and your control is already very good!

But by getting someone to cut a broom handle in half and chamfering each end for you, you have a tool which can help you to practise your hand placement on the club and your swing without problems until you can start to use a real one again.

You can see also that this idea would help negate the leverage weight of a real golf club.

I show my trainers how to use some tape to bind a short, weighted stick to a survivor’s hand, which allows the survivor to rotate it back and forth to build wrist-strength without it falling from his grip. Weighted sticks can be made by taping tiny weights to the stick. This work can really help the survivor position the hand for grasp-type tasks.

Lots more ideas like that can be found here www.successfulstrokesurvivor.com including how to make (or get someone to make for you), a method to practice using a steering wheel.

There are other ways that you can practice for getting back to some of the pursuits you liked pre-stroke. VR works well here. People who want to be pilots take advantage of simulated work throughout their years of learning. Stroke survivors, like pilots, can get closer and closer to the real thing via this immersive learning tactic. So here, the survivor could try and go to an indoor golf simulator centre.

Even though simulations are not posited to be quite as efficient for motor learning as performing the real thing, working like this keeps you in the training area, keeps you working on-task, allows for gradated practise and keeps you safe. And then crucially, outside of the training area, you need to try to practice the tasks (or the components of them that you can manage) repetitively, as part of your ADLs. And evaluating.

So, to sum:

• You need to practice the real task itself, if possible, in your training area.
• If the real task isn’t able to be done with your current limitations or isn’t appropriate to perform in your training area, practice using as close simulations in your training area as possible.
• Progress on the real task must consistently be checked outside your training area.

Much more about all this in the Successful Stroke Survivor manual/handbook – very recently updated/printed copies available only from www.successfulstrokesurvivor.com

PLEASE SHARE THIS BLOG POST OVER TO ANYONE WHOM YOU MIGHT THINK COULD BENEFIT! MANY THANKS TO YOU…

Have YOU got aphasia?

If so, ARNI Speech and Language Therapy (SLT) can now help YOU, right now, wherever you are in the world.

Do you find it hard or impossible to say what you’re thinking (expressive) or understand the spoken word (receptive)? If so, you’re probably finding that the degree of your communication deficit is, right now, having a significant impact on the success of your overall recovery.

The latest evidence-base shows clearly that you can conquer aphasia very successfully with the help of speech and language therapy.

The evidence shows that SLT by Zoom is just as effective as in-person, face to face treatment!

Furthermore, the one to one SLT delivery in-home via Zoom mode shows comparable (high) visit satisfaction scores as the SLT in-home mode. 

The ARNI SLT Telerehab Service:

We have a team of highly experienced specialist SLTs (all post-grads from Universities such as UCL, the University of Cape Town etc) who are available to help you right now.

Finding a Speech and Language therapist after discharge is notoriously difficult and SLTs are almost exclusively clinical and/or have big case-loads to take care of. And we know that SLT is often prohibitively expensive to engage with or just unaffordable, meaning people just get incredibly frustrated.

This is why, after so many hundreds of requests over the years, ARNI has added SLT to its service list.

You get a one to one hourly service, based around your diary needs, from the convenience of your own home, with a highly experienced specialist speech and language therapist who costs just £53 an hour! You’re not paying for a clinic’s overheads or a therapist’s petrol.

The Evidence:

Click the paper below to read a summary of comprehensive meta-analysis of reviews, for instance, from 2021.

‘To evaluate effectiveness or non-inferiority of telerehabilitation for people with aphasia when compared to conventional face-to-face speech and language therapy, five electronic databases (PUBMED, EMBASE, WEB OF SCIENCE, SCOPUS and the Cochrane Library) were searched’.

‘Out of a total of 1157 records, results revealed that telerehabilitation and face-to-face speech and language treatment are comparable… with respect to the gains achieved in auditory comprehension, naming accuracy, aphasia quotient, generalization and functional communication skills’.

Importantly, ‘The analysis of the results suggest that telerehabilitation training for aphasia seems to be as effective as the conventional face-to-face treatment’.

Heading up the ARNI SLT Telerehab service are:

Storm Anderson, a UK-based speech and language therapist who has predominately treated adults affected by stroke and other acquired brain injury in acute hospital settings as well as out-patient and home-based settings. She has completed her BSc in Speech Language Pathology and MSc in Stroke Medicine, and is currently undertaking her PhD at Queen Square, UCL, using the PLORAS (Predicting Language Outcomes After Stroke) datasets.

Olivia Hodgkinson, a Johannesburg-based qualified Speech Language therapist who completed her BSc and MSc in Speech and Language Pathology at Cape Town University. She has substantial experience in both clinical (acute, sub-acute, specialised rehab and extended units) and educational settings. who has worked within highly diverse settings and within multidisciplinary teams and units. She has led and run therapy departments, supervised and mentored speech therapy university students, developed school based educational assessment programs and support structures for specialised learning units, initiated and implemented training for staff, allied professionals, family and caregivers on a variety of scope related topics in school, hospital and community based settings. She has strong dysphagia experience and skills and is a certified Vital-stim practitioner. She has a great passion for adult neurological injuries and disorders, voice disorders and dysphagia and is looking forward to helping you!

For more Info & How to Apply:

Ring ARNI Support Team now on 0203 053 0111 or write to us in the Contact Box by clicking this page

‘Mum had severe aphasia after suffering a dense stroke which has also left her unable to walk, with her right side paralysed. We were terribly disappointed by the lack of therapy she received to date and we recognised we needed to seek another way to get therapy for her speech rehabilitation needs. Mum’s aphasia was mostly expressive difficulty (her understanding is very good) and she had a range of recognisable phrases and words but these couldn’t be used ‘on demand’ easily or at all. We were recommended to ARNI’s innovative remote SLT service which continues to amazing! She’s nearly back to herself again, which has brought her life back again.’ – Sue

Are you a stroke survivor aged 65 years old or older, who has had a stroke at least 6 months ago?

We would like to know your views about designing a home-based exercise environment for improving strength and mobility in upper-limbs after a stroke!

About 75% of strokes occur in people 65 or older. In other words it’s an increasing problem the older we get. It’s been estimated that the chance of having a stroke doubles every decade after 55. 

Stroke in more elderly patients has strong association with multiple medical complications, poorer functional outcomes, and substantial healthcare cost.

Nevertheless, many stroke more elderly survivors are able to recover functional independence over time.

For survivors and their families, a comprehensive rehabilitation programme is the key to recovery and to enable them to reach their highest level of independence as possible.

Younger people tend to recover better from stroke damage than older people and their recovery may also continue for a longer time period, whereas studies often observe functional decline between 6 and 30 months after stroke onset in patients aged over 65.

BUT importantly, provision of evidence-based and culturally relevant stroke rehabilitation has been shown to improve function and quality of life for over 65s.

And one of the keys to this is that the the evidence also strongly suggests that stroke survivors over 65, at an appropriate time, should be guided to take part in some sort of appropriate regular resistance training that emphasises strengthening both affected and unaffected sides to prevent strength and muscle loss.

An invitation to YOU:

A group of researchers from Sheffield Hallam University, the University of Sussex and ARNI partnership would very much like to know your thoughts on designing feasible home exercises for strengthening and mobilising the lower and upper limbs after a stroke.

We would ask like to ask you, in a group Zoom-based interview what your views about rehab/exercise training are. And whether, if you do rehab/exercise, you prefer to use any forms of equipment such as weights, dumbbells, resistance bands and combinations of such items etc..

Do join in! Just click into https://forms.gle/NKLDohwwy3z8FRuA7 

Thank you so much!

Who to contact with any questions: Dr Mohsen Shafizadeh (m.shafizadeh@shu.ac.uk) .

The Research team

Dr Mohsen Shafizadeh, Dr Khalid Ali, Dr Nasrin Nasr, Dr Tom Balchin, Dr John Hart, Dr John Kelley.

Up to 70% of survivors experience fatigue that includes overwhelming physical and/or mental tiredness or exhaustion. And 50% find tiredness to be their main problem.

And it’s not like typical tiredness. It doesn’t always improve with rest and isn’t necessarily related to recent activity.

Experiencing fatigue after stroke can have a major impact on your ability to self-manage: impacting on your quality of life by making everyday tasks feel overwhelming and unachievable, or just plain exhausting!

It’s easy to understand why fatigue has been identified as such a major barrier for survivors when participating in daily and social activities, employment, and physical activity. That’s why, in the posts in the ARNI blog, it’s quite a dominant theme. So many survivors ask for help (some clarity and answers, at least), because for many, it is one of their most debilitating problems. Not least because there is currently no clinically accepted method for diagnosing fatigue.

Clinical guidelines suggest survivors are taught about triggers and strategies in order to manage their fatigue, but evidence around treatments is still unclear. As far as a specific medication that can ameliorate or improve fatigue, Modafinil can be effective for some, but anti-depressants are not evidenced to be effective.

Managing the condition by learning and using cognitive behavioural therapy (CBT) is often advised by GPs as an option.

Please: if you’re fatigued, be aware that it isn’t your fault. You’re not being lazy!

Try this as a battle plan. Start, and keep up some form of record (a diary) of your day-to-day life. You’ll be able to evaluate it and find, over time, that you can look back and be very encouraged at your improvements. You’ll have better and worse days. This is standard. Try tactics such as getting some gold star stickers to put in your diary to mark the successes you have. Try to pace yourself before, during and after any activity. Learn to ‘listen’ to your body and your reactions to activities as well as to your rest periods. In this sense, it can be no different to the kind of ‘training diary’ that many exercise trainees rely on.

Clinicians currently try to capture peoples experience of fatigue by these too. Or via fatigue questionnaires. This approach depends on people’s ability to recall their experiences or to summarise their fatigue. But for many people, fatigue changes throughout the day and this makes it difficult to summarise fatigue experiences or to accurately recall them.

The University of Southampton has started running a research study which builds on previous work where a smartphone app was developed to capture fatigue via a Fit-Bit watch as it happens in real-time.

Would YOU like to be involved?! 

To take part you must be:

18 years or older.

have fatigue because of a brain injury such as stroke (but please also apply if you have had any other ABI).

be able to give informed consent to take part in the study.

able to wear a FitBit for 6 days.

be able to use a smartphone.

able to participate in an online interview about fatigue/activity afterwards.

You don’t need a FitBit of your own: the Department has a number available for study-loan.

The aims of this are to:

• Investigate how useful tracking fatigue (in real-time) and daily summaries of their activity and fatigue are to people with brain injury. 
• Investigate how easy the daily summaries are to use.

So, do get involved in this important and interesting study if you feel you meet the criteria above!

The research also aims to investigate occupational therapist’s perception of the usability and usefulness of summarised daily data in understanding fatigue and guiding fatigue interventions. This means that, if you’d like to take part, the research team would need your permission to show your (anonymised) daily fatigue summaries.

For further information, please contact Leisle Ezekiel, lecturer, and researcher in the School of Health Sciences at the University of Southampton on L.Ezekiel@soton.ac.uk

After experiencing a stroke, survivors often experience physical problems with co-ordination and balance as well as cognitive problems such as difficulties with vision and attention.

You may have difficulty processing visual information after a stroke and/or struggle to make sense of this information. Often it’s possible to struggle with something called ‘spatial inattention’ which affects your perception of one side of your visual field. Even if you have good eyesight, your brain doesn’t process the information that it’s getting from one side. A left hemisphere stroke for example, could cause you to lose awareness of things to the right side of your body.

Additionally, it’s common to experience attentional problems after a stroke, where you might find long periods of concentration and tasks consisting of multiple pieces of information much more difficult.

These vision and attentional problems are often known as ‘spatial neglect’ and the estimated prevalence after unilateral stroke is 30%, with the incidence incidence across studies varying from 12% to 90%. Data shows that in the UK post-stroke, patients suffering with spatial neglect have an increased length of hospitalisation of 27 days compared to 10 days for patients without spatial neglect. Neglect often prevents patients’ level of participation within rehabilitation and so new ways of engagement in rehabilitation are being explored.

Here is a clock face showing a patient’s copy to the right. Not uncommonly, patients with left neglect might sketch a clock by drawing the entire circle and writing the numerals 12, 3, 6, and 9 at their correct locations, omitting those on one side but being satisfied that the entire clock face had been sketched. In this example, note the bunching of numerals on the right side, another characteristic of clock drawing by patients with neglect.

A simple retraining method to help increase survivors’ awareness of the neglected side is for the therapist or trainer to encourage you to try to describe items in the more-affected visual field space. Another method commonly used clinically, in community care as well as an at home resource is to encourage the use of dedicated apps.

Apps are posited to help with healthcare costs, help enhance at home rehabilitation, increase engagement (in and out of hospital) and can ensure accurate monitoring of the patient from healthcare professionals.

However, what is less known is: which apps stroke patients, carers and healthcare professionals utilise the most and their opinions about them.

For this reason, researchers at the Neuropsychology Laboratory at the University of East Anglia (at which Dr Balchin is an Honorary Senior Research Fellow), have asked ARNI to help with research, which is funded by the Stroke Association.

The University is inviting stroke survivors, care givers and clinicians to participate in a survey, which explores whether (and how) apps are used to rehabilitate vision and attentional difficulties following stroke. The survey aims to understand real opinions of these apps in order to better inform practise and development.

Would you like to help? We need you to take part: please do!

If you would like to, the online survey will take you just 15 minutes to complete.

• If you are a Stroke Survivor, click here: https://ueapsych.eu.qualtrics.com/jfe/form/SV_eQDHVQVWRom1c9g
• If you are a Family Member/Carer, click here: https://ueapsych.eu.qualtrics.com/jfe/form/SV_3soJR4uKV2a1vZI
• If you are a Healthcare Professional, click here: https://ueapsych.eu.qualtrics.com/jfe/form/SV_0ixwGweIIuxUmJU

All survey responses are anonymous.

The survey is supervised by Dr Stephanie Rossit and has been granted ethical approval by the School of Psychology Ethics Committee at the University of East Anglia.

If you have any further questions, please do not hesitate to get in touch via email to ARNI or straight to neurolab@uea.ac.uk.

Checketts, M., Mancuso, M., Fordell, H., Chen, P., Hreha, K., Eskes, G. A., Vuilleumier, P., Vail, A., & Bowen, A. (2020). Current clinical practice in the screening and diagnosis of spatial neglect post-stroke: Findings from a multidisciplinary international survey. Neuropsychological Rehabilitation, 1–32.

Halligan, P. W., & Robertson, I. (1999). Spatial neglect: A clinical handbook for diagnosis and treatment. Psychology Press.

Esposito, E., Shekhtman, G., Chen, P. (2021) Prevalence of spatial neglect post-stroke: A systematic review. Ann Phys Rehabil Med. 64(5), 101459.