News

There has been attention given by researchers in stroke across the globe to tie down what we really ‘mean’ by the terms ‘rehabilitation’ and ‘recovery’.

In neuropsychological terms, if the phenomenon of creativity is first under examination, we might discover the descriptor term: ‘4 P’s of creativity‘: the person, process, product and press. The ‘press’ being the ‘environment’ where the creator is creating/inventing/innovating (these three terms also have different definitions).

Also, note as an aside that if ‘Press’  may involve ‘where one creates’ / where/who is around to help you do stuff / what sources can you look at / involve with etc etc, it does rather shine a light on the importance of being cognisant of not just ‘where one is’ (eg, in a flat, in a tower block, in the suburbs of London) but how one can bring maximal resources to bear to help your own situation.

For example; can you set up some effective home training gear? Can you get help from a qualified therapist or instructor to come to you to help in the early days? Can you get to a stroke rehab class if there’s one worth bothering with? Can you investigate interventions.. and learn about everything from CIMT to finding and utilising a specific kind of AFO which won’t restrict neuroplasticity but will support it whilst supporting you? Etc.

If one looks at how these 4 P’s of creativity map over to definitions produced by a global expert panel in 2017 (Bernhardt et al),which included long term supporter & friend, Professor Nick Ward at the Institute of Neurology, UCL, one can see that in the framework above, recovery is the product. A ‘product in perma-flux’! I’ve placed a blue line around a sentence from the paper which bears repetition.

After your stroke, the aim of rehabilitation is to help you overcome and cope in the long term with the damage caused. You’ll be helped to relearn or adapt skills so that you can be as independent as possible. Arguably the concept which will bear the most importance upon your rehabilitation potential from now on is ‘neuroplasticity’; 

Your brain attempts to repair as much as possible after stroke, but there is a downside. During this period of repair, the neurons that surround the infarct are not able to do their job of conducting impulses.

Only once corrective metabolic activity recedes, swelling declines and ‘stunned’ neurons reawaken. This resolution is usually complemented by neuroplasticity. There is then available a period of optimal learning; when the area surrounding the lesion is at its most ‘plastic’. Although, it must be understood that that your although your ‘plastic potential’ declines, it will never be lost.

A town-planning analogy may be considered; in the same way a city has many streets and roads that link different suburbs, your brain has many connections that link different parts of your brain. There are many different exits and junctions that can take you wherever you need to go in the quickest way possible.

The more a road is used or the more popular it may become (ie, if a new short-cut to a motorway has just been loaded to the sat-nav technology), the more traffic may build suddenly up along that route, so the council may strengthen the existing road to cope with the traffic and/or add more lanes or new routes to cope with the increased traffic (new connections). It will also add speed-bumps no doubt!

Your brain can substantially reorganise itself in response to the input it is, or isn’t, receiving after stroke. Your brain has the ability to seek out older, less-used, ‘secondary’ roads if the ‘main roads’ are blocked or damaged.

Neuroplasticity allows us to compensate for irreparably damaged neural pathways by strengthening or re-routing remaining ones. The more you use these pathways, your brain will respond by upgrading them so that they’re more efficient at handling the traffic and the quicker the information is sent. The more the pathways (or ‘roads’) are used, the more adequately functional a task, ability or skill may seem to become.

Have a think about this; recovery is a journey. Rehabilitation is the road. Re-training is the vehicle and YOU are the driver. You’ve got a destination to go to, but it’s an on-going one, like a tour!

You absolutely, unequivocally, must drive yourself through your weeks, months and even a few years of rehabilitation to continue your recovery. The good news is that this road isn’t going to be boring, at all. On the contrary, the weather may be changeable at times but you’ll have lots of company on the way and there will be loads of great shops to try new rehab and/or self-management gear at and pubs to make pitstops at!

This is why repetition in rehabilitation post-stroke is so heavily emphasised. The more you repeat activities, the more likelihood you have potentially to gain back some of the function you may have lost due to your stroke. There is now a strong consensus among rehabilitation experts that the most important element in any recovery programme is carefully directed (well-focused and appropriately dosed) repetitive practice.

A big secret to success with your upper limb for example (dependent on presentation) is, after early intensive recovery efforts have moved you to a certain standard of functional movement, to start ‘creating’ things with the thought of ‘formal rehab’ firmly in the background.

The choice or choices of hobby you take on to pursue over the long term would be set up first to ensure that your more-affected upper limb, from shoulder to fingertips, is maximally involved. The requirements of painting a picture involving your more affected hand and acquiring skill at this practice is one example. Or setting out to make cards to sell for charity or on Ebay!

One problem that many researchers find is that individual creative efforts like these don’t readily lend itself to measurement, however contributory they are to your overall rehab. And creativity notoriously suffers under measurement and control during trials. This is one of the reasons why you won’t find ‘off-the-shelf’ custom self-rehab programmes. They are by nature all generalised. They have to be.

And furthermore, motivation must ‘run like a ribbon’ through the creative process. This must be intrinsic to the creator – there must be a NEED to create, to problem-solve until an objective is complete. This need stokes interest, drive, enthusiasm, desire, perseverance, passion and persistence.

So remember, the ARNI 4 retraining elements are meant to be initially explored with the help of a therapist or trainer if possible, then individualised by you, the creator, as soon as appropriate.

A good start is to try to take onboard, and adhere to, these 9 golden rules:

1) Time matters: neuroplasticity is a process rather than a single event, with windows of opportunity opening for different skills at different times. In rehabilitation, starting earlier is usually better than starting later.

2) Repetition matters: you must do a task over and over again to actually change your brain.

3) Specificity matters: you must skillfully practice the exact tasks you want to improve.

4) Salience matters: to change the brain optimally, the skills you’re practicing must ideally have meaning, relevance, or importance to you.

5) Intensity matters: more repetitions in a shorter time are necessary for creating new connections.

6) Train to transfer: practicing one skill can often result in improvement of a related skill.

7) Use it or lose it: the skills you don’t practice often get weaker.

8) Use it and improve it: the skills you practice the most, you get better at the most.

9) Age is a number: younger brains tend to change faster than older brains, but significant functional improvements are possible at any age.

10) Engage with others: get as many other people involved with your rehab over the long term as you humanely can!

Dr Tom Balchin, who founded the Action for Rehabilitation from Neurological Injury (ARNI) Charity nearly 25 years ago, has been made an Officer of the British Empire (OBE) in the New Year’s Honours List.

At ARNI, we are all absolutely delighted for him.

All those who know him will know how dedicated and passionate he is, and continues to be, about helping people who have suffered a stroke to recover as much as possible.

Dr Tom had a severe stroke in 1997. Stemming from his own self-recovery and despite retaining ‘drop-foot’, he created a unique ‘approach’ (a series of linked evidence-based physical rehabilitation strategies & interventions) to stroke rehabilitation.

His ARNI Approach has become well known world-wide for its amazing successes in terms of guiding stroke survivors to regain movement and managing limitations.

Over the years, Dr Tom has helped many thousands of people personally (and via his books and login videos). And he has taught many hundreds of specialists (his ‘ARNI Army’ of over 150 specialist qualified neurorehabilitation trainers and therapists) who each help lots of survivors on a daily basis.

To do this required Dr Tom create what has become the only existing national accredited qualification in rehabilitation after stroke for specialist personal trainers and therapists.

The ARNI Trustees said to us on hearing the news:

‘Dr Balchin has grown this Charity from just an idea to help people like himself, and has done it always voluntarily. We think he is a quite remarkable man who is fully deserving of this very significant national Honour.’

If you know Tom, have been helped by one of his specialists or in any other context, please write to him on tom@arni.uk.com

Even better;

• ARNI Stroke Rehabilitation Charity needs to further its reach in order to help as many other survivors who may not have heard about Tom and his Charity.
• If you are in a position to write up a quick article and paste it to an authoritative page in an Institution you may represent, please do…
• And/or send this to someone in the media who you know, we would be so very grateful to you.
• By doing this, you may be able to indirectly gain support for stroke survivors out there who would not have contacted ARNI without you highlighting for them.

There is a page (click picture ‘Meet Dr Tom‘) with further text that you or another can cull some text from.

Or that a writer or reporter can gain a better understanding.

And of course, he/she is so welcome to email Dr Balchin OBE directly and/or speak with him.

Approximately 70% of stroke survivors experience a weakened arm immediately after the stroke and for 40%, this persists beyond 6 months¹. Arm weakness can have a very large effect on the individual’s routine daily activities such as eating, dressing, washing, cleaning, and shopping and can also reduce potential employability.

Stroke survivors have identified arm weakness as a high priority for clinical research which aims to produce better functional outcomes in the upper limb². Current physical therapies are limited in their success and are also very time demanding. Therefore, effective augments to use alongside rehabilitation are sought.

In a recent trial³ it was shown that stimulating the vagus nerve (VN) whilst carrying out rehabilitation exercises led to better arm recovery compared to the control group (no stimulation – rehabilitation only). However, this trial used a surgically implanted VN stimulator which required surgery under general anaesthesia and, the rehabilitation therapy was mostly delivered in hospital.

Now a new national groundbreaking multi-centre trial called TRICEPS, led by Professor Arshad Majid and researchers from the Sheffield Teaching Hospitals NHS Foundation Trust, is investigating whether arm recovery after stroke can be improved by using a non-invasive VN stimulator.

The trial uses a device which is worn as an earpiece (image 1 and 2), whilst self-delivered rehabilitation exercises are carried out at home. Surgery is not needed as a branch of the VN, located within the ear, is stimulated through the skin (Transcutaneous Vagus Nerve Stimulation, TVNS).

Using brain scanning and blood tests the trial also aims to explore how TVNS helps the brain to repair its function after stroke.

How can I get involved?

Sheffield Teaching Hospitals and NHS Trusts nationally are looking for stroke survivors (aged 18+) with persistent arm weakness following an ischaemic stroke, which occurred between 6 months and 10 years ago. 

The trial involves wearing a TVNS earpiece and wristband (Image 1 and 2) whilst doing rehabilitation therapy at home. Some participants will also be asked to wear the device while performing their usual daily activities.

If YOU would like to join in, you’ll be asked to attend a face-to-face appointment at their nearest research centre at the start of the trial, followed by two further appointments at 3 and 6 months.

What support will there be?

• Participants will be given specific instructions regarding the device and the rehabilitation exercises.
• The 12-week rehabilitation therapy plan will be tailored specifically to each participant.
• A member of the clinical research team will organise phone or video calls with participants throughout the 12-week treatment period.
• If required, these may be completed face-to-face at the research facility. 
• Some research centres are able to offer home visits.
• Participants will be reimbursed for travel costs incurred as part of the trial.

I am interested, where can I take part?

The trial is open at 19 NHS centres across England and Wales.

A full list is available on the trial website here www.triceps-trial.com

How do I express interest?

Please contact the central research team in Sheffield who will carry out a quick preliminary assessment of eligibility by phone and refer you onto your nearest research site.

Central TRICEPS Research Team contact:

Email: triceps@sheffield.ac.uk

Phone: 07935 514510

1. https://www.nice.org.uk/guidance/ng236/chapter/Recommendations#intensity-of-stroke-rehabilitation
2. French et al., “Repetitive task training for improving functional ability after stroke,” 2016, doi: 10.1002/14651858.CD006073.pub3.www.cochranelibrary.com.
3. Dawson, J ∙ Liu, CY ∙ Francisco, GE ∙ et al. Vagus nerve stimulation paired with rehabilitation for upper limb motor function after ischaemic stroke (VNS-REHAB): a randomised, blinded, pivotal, device trial   2021; 397:1545-1553

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

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 mobility, reducing the risk of falls, enhancing quality of life, promoting brain plasticity, and preventing secondary complications.

The newest (April 2023) stroke guidelines state: (click text)

1. ‘People with impaired balance at any level (sitting, standing, stepping, walking) at any time after stroke should receive repetitive task practice in the form of progressive balance training such as trunk control exercises, treadmill training, circuit and functional training, fitness training, and strengthening exercises.

2. Further, that people with impaired balance after stroke should be offered repetitive task practice and balance training as the principal rehabilitation approach, in preference to other therapy approaches including Bobath‘.

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

(click text) HOW TO REGAIN BALANCE ARNI BLOG POST for more.

However, access to specialist balance rehabilitation services can be poor in the UK, due mainly 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.

Many specialists in stroke posit that Telerehabilitation could address many of these needs. 

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

ARNI Stroke Rehabilitation Charity adheres to these guidelines: we have offered a very successful speech, language and cognition rehabilitation / therapy remote service, simply using Zoom, for the past four years with survivors applying from around the world .

Click text to this page on the ARNI site: TALK WITH OUR SLT SPECIALIST ABOUT ARNI SPEECH, UNDERSTANDING & COGNITION SERVICE FOR FREE NOW

This page also shows the evidence summaries (meta-analyses of available recent studies which are as powered/controlled as possible) which reveal (for speech and language therapy at least) that Telerehabilitation is proven to be just as effective and far less costly in real-terms than in-person, face to face treatment.

We have reported before how ARNI supporter Professor Doris-Eva Bamiou, together with the University of College London and global partners, have been conducting a large-scale global research project to improve balance and quality of life in stroke survivors which involves software and required kit, but is designed to be for use at HOME, where the vast majority of re-training can take place most regularly and over the long-term.

We stroke survivors are generally ‘in it for the long-haul! Clinicians like Professor Bamiou understand this, hence her energy & activity leading a team of professionals to improve the lives of stroke survivors. The ARNI Institute supports her efforts. Please read below about a chance to get involved!

If you’re between 40-80 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 do read on!

A GREAT OPPORTUNITY FOR YOU: the team’s ambition is to optimise balance rehabilitation opportunities by providing you with a comprehensive, individualised tele-rehabilitation balance physiotherapy programme and the new HOLOBalance system, which includes multisensory balance and gait exercises, physical activity and cognitive training and exergames to improve balance function in older adults with stroke. And then to monitor your progress.

This  12-week intervention will then take place in the comfort of your own home with remote monitoring by a trained physiotherapist.

Here’s the inclusion criteria… please consider applying if you:

• Are between 40-80 years of age.
• Are able to understand and consent to participation.
• Live within Greater London area.
• Have received a diagnosis of ONE of: 1) stroke, 2) mild cognitive impairment, or 3) long covid-19
• Can independently walk, with or without, a walking stick for a minimum of 500-meters.
• Have no significant visual impairment.
• Do not have any other co-existing neurological conditions (ie. Multiple Sclerosis, Parkinsons’ Disease).
• Do not have any language or communication deficits impairing your ability to communicate and/or express their thoughts 
• Are willing to provide feedback on the usability, functionality, and acceptability of the kit, including appearance, proposed training and testing regime.

What will happen during the study?

1. You will receive an initial screening call to determine your eligibility.

2. Upon meeting the initial inclusion criteria, you will be invited to the clinic at 33 Queen Square, Clinical Neuroscience Centre, London, WC1N 3BG to complete the remaining eligibility screening, including the mobility, function and cognitive tests.

3. If you are deemed fully eligible, you will be randomised into either the intervention group or control group to complete a home-based balance rehabilitation programme.

4. The intervention group will complete a home-based, remote balance rehabilitation program using augmented reality, with body motion tracking for real-time feedback.

5. The control group will complete either the OTAGO home exercise programme, or a Vestibular rehabilitation program for Dizziness.

6. The program is to be completed 5-days/week over 12-weeks, with weekly phone calls, and programme reviews every 3-weeks.

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

How can you find out more/register interest?

If you are interested in participating and would like to find out more, please contact Brooke Nairn, Research Physiotherapist, UCL, Institute of Neurology & The Ear Institute on b.nairn@ucl.ac.uk

This study is funded by UK Research and Innovation UKRI, Reference Number 10062111 (under the European Union HORIZON 2021 scheme).

Over the 23 years of service to the public, we have trained many thousands of people over the long term, and usually every day we have a kind thank you coming in via email. These are most treasured, because to be thanked continually for the difference our instructors make, reminds those who run ARNI what a valuable and unique national service has been created and continues to exist with kind support from personal donations.

Furthermore, that we have continually worked since 2001 using the most current evidence-based concepts/interventions (and have been able to at any time, point to the continually updated meta-analyses of the major studies to prove this is so) has been imperative in creating our reputation.

As has the privileges of being able to work alongside and have the support of so many world-class leaders in neurorehabilitation research and practice across the UK universities in order to ensure our patients have the best knowledge they need (from application of techniques and strategies, to customising the most applicable augmentations to therapy & training) to make positive progress at all stages and to figure out what to do when rehabilitation stalls so that they may get back onto their recovery pathway again.

Many stroke survivors, since the earliest days of the charity decided to thank us for successful rehabilitation by writing testimonials of the time that they were with us. These are great indications of the personalised care you will receive at ARNI. Press here to view. These are valuable sources of real-life experiences, and indicative of what you can expect from ARNI.

Here’s the very latest one:

ANDREW (BY MARION). September 2024.

‘I found out about ARNI when I was calling around local physios trying to engage a mobile therapist for my step father, Andrew. It was proving impossible to find anyone willing to make visits to a residential care home. But one smart receptionist at a Lincoln practice knew about ARNI and told me I could contact the charity directly without a referral.

I hadn’t heard of ARNI before. My late mother had a stroke in 2012 and another in 2022. Why had I never heard of ARNI? The NHS gives short term physio support after a stroke. But if recovery is taking a little longer for you, then you risk being prematurely abandoned. Told you have reached the extent of your recovery. This is nonsense. You have just reached the extent of NHS funding.

Andrew, 5 months post stroke, was spending 90%+ of his day in bed at the Nursing and Care Home where he is at. Demotivated. Believing he was as good as he could be. Grieving for the loss of his wife. Anticipating the same outcome for himself. On a slippery slope.

When I made my enquiry I couldn’t believe how straight forward the process was. The immediate answer was, ‘yes – we can help’. The registration and paperwork was simple. An ARNI physio was identified and Natalie agreed to work with Andrew on weekly visits.

Three months into physio with Natalie and Andrew spends 90% of his waking day out of bed. A complete turn around.

He can mobilise unaided around his bedroom. He walks with a frame to the dining room for three meals a day. He is motivated to participate in social activities with other residents. He can take himself for a walk around the garden unaccompanied. Now he has the confidence to accept invitations to go out and can be collected by friends and go to public places.

ARNI, through Natalie, has given enormous hope to an 81yr old who thought he was destined to the same demise as his wife, who never regained mobility despite being desperately motivated to do so. Judith was a bed escaper! The response to this was to put the bed on the floor and lay out crash mats. The NHS assessment was that it was unsafe to allow her to try to walk. If only we’d known about ARNI then.

I firmly believe that ARNI services should be universally accessible and recommended by the NHS. There was no signposting from the medical profession. This is information that people who have had a stroke need to know.

According to Andrew, Natalie can read his mind. She knows when his blockers are emotional, not physical, and she knows how to motivate him beyond those. Truly, the intervention of ARNI has been life changing. An enormous relief for family who live hundreds of miles away. An inspiration to Andrew, and a long term hope of an active future’.

As far as any of the Testimonials one can find on the ARNI site are concerned, which go back to the earliest days of the charity, there are no miracles at all.

Only the successes (and failures) that came about when determined people who’ve had a major medical life incident made the effort and said to themselves ‘I’m not going to stay like this anymore…’ . They made the effort to enquire, do their research, took the decision to get the ARNI books, video streams via login, ask to be matched to an ARNI therapist, and most importantly, STAYED ON THE ‘RETRAINING TRACK’ afterwards.

We find that a majority continue on the self-rehab track they’ve developed, often because they grew to enjoy the process of working hard towards their own rehabilitation and realised via training at ARNI that this kind of intense interest in progressive self-development and self-improvement is highlighted in the neurorehabilitation evidence to be one of the keys to successful recovery from brain injury.

We feel that not one of these people did not recognise, by the end of the period that they chose to stay at ARNI, that the effort they put in translated directly towards their own progress in terms of functional improvement in movement, and increasing strength in both body and mind.

Furthermore, working with colleagues in neurorehabilitation research and practice across the UK universities and clinics to ensure our patients have the best knowledge they need (from application Of techniques and strategies, to customising the most applicable augmentations to therapy & training) to make positive progress at all stages (and to figure out what to do when rehabilitation stalls, in order to get back onto the recovery pathway again.

This is why from the earliest days, ARNI has concentrated on one-to-one re-training, so that survivors can move on to the next methods of long term rehab (back to life again – and joining in with community activities, involving in stroke survivor exercise groups etc and as appropriate.

Please call ARNI for Stroke Rehabilitation to find out more.

Even if 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 not be a passive recipient. It’s time for action and knowledge is power. But how do you go about doing this? How do you work with the evidence? Just some thoughts for you to make all this clearer. Firstly, let’s look back at Professor Nick Ward and international colleagues’ ‘agreed definitions’ of the terms ‘rehabilitation’ and ‘recovery’ from 2017. This is worth a couple of screenshots:

See the blue-box? I ask all my students (on online/hybrid courses) to read this out & repeat it with me 3 times. Then we discuss it: it’s important. Definitions really are, otherwise we’re just playing around with words. I then ask them if they think that recovery ever really happens (in near to full totality) for many survivors; which then leads onto more discussion, etc.

Can a generic recovery programme to help you recover be created? For example, is there one ‘programme’ that will fit everyone? It would be much easier that way but the most accepted answer is ‘no’. I’m afraid not. You need something highly customised and evidence based (and you are a changing target, remember, so any ‘programme’ must allow you to work on the edges of your current ability, with progressions that you can only try/experiment with once you gain some success (so progressions can’t in any way be ‘pre-set’, but become part of recovery).

The good news for you is that it’s practically certain that there are numerous things that most or ALL stroke survivors must do to get/regain the above. You can start with basic tasks that you need to master in order that you can work towards more complex tasks. You will ‘get nothing by doing nothing’.

To boil it down (black and white style), you may well need to countenance attempting these 10 things below, over time. It’s a great ‘starter for 10’ way to look at the totality of recovery:

1. Understand how to produce, start, a very manageable, customised self-rehab programme (with the assistance of a physio or specialist neuro-rehab ARNI instructor).
2. Understand what, when and why you’re doing what you’re doing, instead of doing things ‘piece-meal’. You need your progress trajectory to be upwards.
3. Understand what factors you can play with, try out, evaluate and combine interventions (how to manipulate the concepts, principles and available adjuncts/interventions).
4. How to record & evaluate: the no. 2 of 2 of re-training. No. 1 is starting it and doing it.
5. Understand that specific goals will only come once you can see your way (ie, get some successes under your belt, which is why learning how to get down and up from the floor with no help or support is incredibly important). Many people, having been told they need to goal-set, don’t then build in the try/fail factor – and get annoyed/stop trying to self-rehab and/or engage with a physio or trainer on a weekly basis. Which isn’t good.
6. Understand how to, and initiate, weight-bearing, balance, co-ordination, postural and gait control over time.
7. Understand how to, and initiate, the decrease of upper limb spasticity/flaccidity if you have it & increase functional movement return over time.
8. Understand how to, and initiate, the increase of muscular, tendon, ligament and bone strength over time.
9. Understand how to, and initiate the increase of confidence and removal of the the fear of the consequences of exercising.
10. Understand how to become progressively more self-sufficient, make tremendous efforts to get that way, giving hope to those who love and care for you & then become productive in an occupation and/or hobby be happy with life and give back to others.
    

    ---

Can I do these things? ABSOLUTELY!! These can all be achieved by you, to a certain degree, however old you are, step by step, if you’re motivated and are prepared to sacrifice time and effort (again, if you are able to/if appropriate).

Can I recover from stroke if I can’t find anyone to help me? ABSOLUTELY! You can still self-rehab very successfully indeed, but to start, you’ll appreciate that knowledge is power. Which is why therapists and specialists instructors are well worth ‘using’, as they can provide you with the grounding that you probably need to understand how to reach ‘stages’, get to stages, make your own stages etc. And you need to do your knowledge accumulation (if you can.. ). And again, you need to know (quickly), how to avoid reaching out to tenuous/non-evidence based sources or for interventions out there with little to no evidence for efficacy. Or those which seem to show efficacy but in examination, have perhaps manage this by apparent strong relationships with/to those with good evidence for efficacy. You’ll invariably end up wasting money and time ingesting metaphorical snake-oil.

What sources can I look at to get started? Well, you could start by have a read of Had a Stroke? Now What? to get you started… click the book cover or press here. I’ve done my best in 244 pages of the neurorehabilitation evidence-base, 25 years of experience as a survivor and help from the numerous worldwide experts in stroke I’m lucky enough to be supported by/linked with, to provide you with the best picture of ‘what to try/do/what perhaps to avoid’. This book gives lots of indicators concerning the evidence applicable for your situation right now. It also shows lots more paths (many via the 3rd Sector like ARNI, concerning how you can ask people out there to send you links/clips/sites to help you get more acquainted in the importance of the evidence…

What is the ‘evidence’ for recovery after stroke? Basically, you need to try understand the parameters of your recovery. Ie; ‘understand it, do it’. Or in practice, ‘start, make efforts, gain best understanding as you can over time, and build on your know-how constantly’. In a word, you’ve got to be intensely INTERESTED. No way you should just let yourself become a passive recipient of things happening to you (or not).

Of the many, excellent overall meta-analyses that exist, the regularly updated Evidence-Based Review of Stroke Rehabilitation (Professor Robert Teasell’s team in Ontario) is one of my ‘go to’ ones. It’s an in-depth reviews of well over 4,500 studies including over 2,170 randomized controlled trials, with ‘lay-summaries’ that are very useful indeed to further your understanding whoever you are, once you’ve understood the terminology. So, for you too, there’s no reason it can’t help to guide the parameters of what you’re now ‘dealing with’.

Will I need help to understand what ‘the evidence’ is?  It’s difficult for the majority of stroke survivors to do, which is why instructors and physios (who are applying the current evidence) are so very necessary. The Reviews are for clinicians & therapists mainly for this reason. But, as above, there’s no reason why family members/carers/friends can’t start to investigate the evidence and start to learn from it. Understanding the nuances of the evidence and exactly why various interventions can change from, for example, ‘strong’ to ‘mixed evidence for’, or, the nuanced word ‘may be’… (beneficial) that seems to have crept into these reviews.

For example: the upper extremity interventions section (2020) shows the interventions and their applications, with very useful summaries of their efficacies with:

So, for example, you may be recommended ‘task-training’ to do. But why? And how can you practically set it up, do it? And what in real terms will it do for you? And how to optimise its effectiveness….

Nevertheless, as a template of what to do and what not to do, if you get to understand the terms (get a copy of ‘Had a Stroke, Now What’ and use the ‘Terminology’ pages in the introduction) and can interpret how to practically create ‘task-specific training’ for yourself.

Also, you could go on to the ARNI site and see ‘task-board’ in products section as example or just make a similar one instructions on one of the any-time stream (vid 6 of 7) via log-in to your device – click the picture or here ).

You can see that you need over time to become the ‘patient-professional’. Or have someone close to you (family member/carer/friend) who can help you in this regard/do it for you. In short, you/they need to get to understand , reasonably quickly, what the current evidence recommends, doesn’t recommend and what it concludes about the efficacies of various interventions.

A further (random) example: therapists often use/recommend splinting and orthoses with patients. But why? What are they hoping to achieve? Do you know? If not, then having a look at conclusions of the current evidence about the intervention is useful: see screenshot below.

The ‘sum of the evidence-base’ is the best we have to work with – it’s often a little out of date due to many factors, not least the nature of the time it takes to collate and display. But it’s being updated all the time. Also (I’ve found), there are very many very friendly experts in Universities who may certainly be approached in the right manner with a question or two, who will be able to refer you to online resources that may be appropriate to aid your further understanding. Ask me, if you like, and I may be able to help by asking a colleague researching in the area of your question.

In short, as above, you need to try and understand the parameters of what you’re dealing with. This is something for when you’re now home or in other accommodation, such as your circumstances dictate.

So, I hope to emphasise to you with this post that the evidence can aid you not to waste lots of time and money and concentrate on the regain of your functional movement action control as much as you can, learning essential physical coping strategies which 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. Newer stroke survivors will get to understand what I mean. The good news is that: ‘retraining’ can (and should) very soon phase into an enjoyable and social physical activity wherein you are actively rehabilitating. The reason is that formal re-training is essentially boring. We all know it. Why should it be exciting? It’s grind! So you’ve GOT to find a way to make ‘it’ part of your everyday life. So now you see that you’ve got to find the combination of ‘its’ that seem to work best to tackle your limitations (by challenging yourself at the edges of your current ability).

If this sounds abstract, here’s a simple formula as a starter for 10.

Regular formal rehab + everyday re-training efforts split into a number of aspects + about 3 hobbies which all challenge your limitations (there are quite a few to try; it just takes trying trying a many things as you can think of + try and have as much fun as possible + try and make ‘yourself’ and your own recovery (remember the definition above?!) an experiment: go beyond that which anyone thought possible of you.

Find out exactly how I did these three things in the Successful Stroke Survivor (click picture of book or here).

And lastly (encouragingly), it seems that ‘formal training’ is finite… it must be. But it must be done ‘right’ so you can phase into a maintaining status quo in some areas if there’s absolutely no other option – and regularly improve/know how to regain where you were in others (usually micro-improvements) via re-training.

Get in touch with ARNI Stroke Rehab Charity now if you think we can help you.  Call Us : 0203 053 0111

Each year there are more than 100,000 first-time strokes in the UK; and as you may have heard on the news a couple of weeks ago, this number is set to rise by 50% by 2035.

And as you know, stroke often brings with it lots of complications. Current evidence suggests that a full 25–30% of ischaemic stroke survivors develop immediate or delayed vascular cognitive impairment (VCI) or vascular dementia (VaD). This is in no small part due to the high percentage of strokes happening to those who are more elderly at the time of stroke. Here in the UK, the average age for men to have a stroke is 74 and for women, the average age is 80 years old. 10% or more of stroke patients may have existing vascular dementia.

Vascular dementia is the second most common form of dementia after Alzheimer disease (AD). The condition isn’t a single disease; it’s a group of syndromes relating to different vascular mechanisms.

Although most patients with post-stroke dementia have vascular brain lesions that explain the cognitive impairment, some patients have concomitant neurodegenerative diseases.

A national longitudinal cohort study 2007–2017 using Swedish national registries was conducted to analyse predictors of death after stroke in patients with dementia and investigate possible time and treatment trends (Zupanic at al 2021).

12,629 ischemic stroke events in patients with dementia with matched 57,954 stroke events in non-dementia controls in different aspects of patient care and mortality. Patients with≤80 years with prior Alzheimer’s disease or mixed dementia showed higher mortality rates after stroke compared to patients with prior vascular dementia.

Because over time, areas of brain cells stop working, the symptoms of vascular dementia are similar in presentation to other cognitive deficits following a stroke and there can be strong overlaps. The reason vascular dementia is classified separately from cognitive impairments is because it’s caused by brain damage from impaired blood flow to the brain.

Besides disability in stroke survivors, vascular cognitive impairment (VCI) can prevent these patients from living independently. Memory loss, confusion, language problems, difficulty paying attention or following a conversation, difficulty planning and organising tasks, difficulty with calculations, making decisions, solving problems, visual orientation problems, hallucinations and impaired motor skills are all known symptoms. associated with disability, dependency (including institutionalism) and morbidity (people with vascular dementia who have had a stroke have a 5-year survival rate of 39%). Major depression is also a widely observed mood disorder in vascular dementia. So, vascular dementia is most usually frustrating for not just the survivor, but trying to help them.

Although it doesn’t have a ‘cure’ at the moment, there ARE increasingly customised ‘battle-plans’ that can be created for survivors and their carers-givers by experts in dementia. The goal of these is to help survivors and manage symptoms and helping those who help them.

Click to read My Choice; a newly released information resource (April 2024) designed to help people live well with dementia.

(ARNI Contribution: p. 14 covering the area of physical activity). 

See also news article https://arc-kss.nihr.ac.uk/news/new-resource-launched-to-help-live-well-with-dementia

• Continually staying active mentally has been shown to improve memory and communication skills.
• Participating in physical activities, acquiring a healthy diet and eliminating smoking and alcohol consumption have all been shown to improve symptoms of vascular dementia.
• Managing current morbidities or conditions such as high blood pressure, diabetes and obesity can also prevent progression of vascular dementia. 
• Furthermore, social functioning is often reduced as a result of vascular dementia, so joining a social group which has meaning for the person rather than one which is too different and unfamiliar, can help.
• Connecting with others, along with practicing social skills, is posited to help with the feelings of isolation post-stroke.
• Interactive apps can help too, dependent upon the person’s presentation/status: see current examples below

MindMate is a free app, available for Apple, Android, and computers, offers brain games and workouts to help with attention, memory, problem-solving, and cognitive speed. MindMate also features other tools to stimulate brain and general health, promoting good nutrition, physical exercise, mental stimulation, and social interaction. The site allows you to take a memory test online and promptly emails you your results.

Constant Therapy is an app for dementia patients available for smartphones and tablets. Offering cognitive, language, and speech therapy, it is designed to support patients with Alzheimer’s and dementia, as well as those recovering from brain injuries including stroke. The award-winning programme was developed by scientists at Boston University and adapts to keep patients challenged, but not frustrated. Subscribers have unlimited access to a library of brain rehabilitation exercises. There is also a version available for clinicians to use with their patients.

Piano with Songs is a free app for people struggling with memory issues, who may find music therapeutic and relaxing. It lets users play the piano, even if they haven’t played it in years (or ever), for free. With a library of thousands of songs, people with Alzheimer’s and dementia can use the app to access old favourite songs and unlock good memories in the process.

Alz Calls is quite an interesting addition. Caregivers of people with dementia are familiar with the repeated phone calls and questions from a frightened loved one who needs the reassurance of hearing their voice. Unfortunately, many caregivers are not always available to provide this reassurance due to work and other obligations. This app is basically a chatbot designed for patients who repeatedly ask for their family, struggle with transitions to new environments, or need social interaction. Family members can record their voice, add a photo that will pop up for the patient to recognize, and answer frequent questions so that the patient can have an interactive conversation when the caregiver is not available to talk.

Spaced retrieval therapy is an app to help patients with dementia often have trouble retrieving information they have recently heard or seen. Tactus Therapy offers apps for cognition and language problems, including spaced retrieval therapy to help patients remember new information longer using evidence-based memory techniques. The app is available for $4.99 for both Android and Apple devices.

Lumosity is one of the earliest brain-training apps developed, and it continues to be popular after more than ten years, with over 100 million users. The app’s scientists create fun, challenging, easy-to-learn brain games based on established cognitive training exercises. The app boasts peer-reviewed studies that show that it improves cognition. Available on Apple and Android as well as online, Lumosity costs $14.95 per month, but costs go down significantly if you subscribe for a year or longer, and lifetime subscriptions are also available.

Real Jigsaw Puzzles is a great free app, available on Apple and Android, for seniors who enjoy jigsaw puzzles and could use some brain stimulation. Jigsaw puzzles are great for entertainment and promoting focus, but they take up a lot of space, and they’re not very portable. With this app, one can choose from a wide variety of puzzles and the number of pieces per puzzle is adjustable from 9 to 1000.

AmuseIT is an app designed to promote conversation; isolation can be a problem for those living with dementia, and it can be difficult for those who care for them to know how to engage. It contains over 1000 simple quiz questions with a strong visual component. In addition to facilitating a connection between dementia patients and caregivers who use the app, AmuseIT stimulates memory and reasoning and is easy to use, even for those intimidated by technology.

Word Search Colorful is an an uncomplicated, engaging, classic, free word search game available on Apple and Android which involves words hidden within blocks of letters; instead of needing to circle the words with a pen, a swipe of the finger provides a colourful highlight.

MEternally is a website that offers photo and activity cards, DVD, and other tangible tools to promote reminiscence for seniors with memory loss. The reason for this being available on a site and not a smartphone or tablet,is that there are many seniors with dementia who don’t have access to (or just are not interested in) using them. The site offers various collections, including themes such as Nature, Patriotic, and Favorite Things in an effort to help people make connections and share joy through reminiscence.

My Choice: led by Katherine Sykes MRes (ClinRes); PGCert (Dementia); BSc (Nursing), NIHR Applied Research Collaboration KSS / Health Innovation Network KSS, Associate faculty, Centre for Dementia Studies, Brighton & Sussex Medical School.

Zupanic, E. et al (2021). Mortality After Ischemic Stroke in Patients with Alzheimer’s Disease Dementia and Other Dementia Disorders. Journal of Alzheimer’s Disease, vol. 81, no. 3, pp. 1253-1261.

Kalaria RN, Akinyemi R, Ihara M. (2016). Stroke injury, cognitive impairment and vascular dementia. Biochim Biophys Acta. vol. 1862, no. 5, pp. 915-25.

So, what’s the point of task-specific practice and why should you do it? Can assistive devices help much? Are they ‘better’ than a therapist or trainer? Or is there very little point in employing them? What about in tandem? 

You’ll probably know well that upper limb weakness is a common, disabling and persistent problem after stroke and is a major contributor to many survivors’ poor well-being and quality of life. Conventional upper limb rehabilitation has had limited success and novel combined interventions are being investigated in an effort to stimulate greater recovery.

Although probably ever-under investigation for strong evidence of efficacy for stroke rehabilitation (!), task-specific practice can be said to be one of the best weapons stroke survivors have to try and engage plasticity. It also 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, particularly with upper limb recovery.

A concern for many years amongst professionals in stroke has been (alongside what/when/how task-training can most effectively be done), the efficacy with which it may be augmented using devices ranging from active orthotics and robotics to medications.

My colleague, Sarah Valkenborghs in 2019, with the aid of her group, carried out a systematic review with a meta-analyses to find the evidence for combining assistive devices to task-specific training following stroke. From 3494 citations identified in 7 databases, 21 adjunctive interventions including electrical stimulation, transcranial magnetic stimulation, robotic devices, mental practice, action observation, trunk restraint and virtual reality were included. Only peripheral nerve stimulation with task-practice demonstrated small additional benefits over those of task-specific training alone for upper limb impairment. They concluded that there is little evidence that adding another intervention to task-practice confers additional benefits.

Rozevink at al, 2023 found, in a systematic review and meta-analysis analysing on the effectiveness of task-specific training using assistive devices and task-specific usual care on upper limb performance after stroke that task-specific training using assistive devices seems to be more effective in reducing impairment compared with task specific usual care in the subacute phase after stroke, but equally effective in the chronic phase of stroke.

So, overall, whether using an assistive device or not when doing re-training, ‘task-practice’ is pretty much necessary/required.

And for stroke survivors doing their best to recover in the community, it’s probably best to focus on task-training with a trainer or therapist, supplemented by lots of ‘retraining task-specific homework’ that any effective professional will be able to guide them into/support them with, and regard assistive devices (such as can be affordable), as useful adjuncts which can often facilitate task-training if/as as appropriate.

Dutch researchers (Kollen, Kwakkel & Lindeman) 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).

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.

One more point: emerging minimal movement is often very overlooked. even if visible, it’s often considered non-functional. But this is very wrong. You actually need to try and regain an increase in active range of motion (AROM) in as many planes and pivots as possible.  Increases 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.

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’s 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:

• Task-practice comes first and may not be significantly augmented by interventions: time to get busy, in other words.
• To start, get clued up to understand how to set up a training methodology
• An excellent starter for 10 is shown on these stroke rehab online videos (available for anytime login btw and half-price for a limited time).
• Get some help from a trainer or therapist to do task-practice,
• 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.
• Make task-practice highly meaningful for you.
• 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.
• Get assessed to see if any treatments, augments, devices or drugs are appropriate for you at your current (stage).

Sarah R. Valkenborghs, Robin Callister, Milanka M. Visser, Michael Nilsson & Paulette van Vliet (2019) Interventions combined with task-specific training to improve upper limb motor recovery following stroke: a systematic review with meta-analyses, Physical Therapy Reviews, 24:3-4, 100-117, DOI: 10.1080/10833196.2019.1597439

Samantha G. Rozevink, Juha M. Hijmans, Koen A. Horstink & Corry K. van der Sluis (2023) Effectiveness of task-specific training using assistive devices and task-specific usual care on upper limb performance after stroke: a systematic review and meta-analysis, Disability and Rehabilitation: Assistive Technology, 18:7, 1245-1258, DOI: 10.1080/17483107.2021.2001061

Your exclusive free invitation to 3 hr online Workshop on Saturday January 20th, 2024 (10.30am to 1.30pm). Listen to (and talk directly with) two of the UK’s leading stroke rehab experts in stroke. Survivors, family members, carers and professionals ALL so welcome!

Professor Nick Ward (Professor of Clinical Neurology & Neurorehabilitation, UCL Queen Square Institute of Neurology) will speak about stimulating motor recovery after stroke.

Professor Anand Pandyan (Executive Dean, Health & Social Sciences, Bournemouth University) will speak about using technology to assist with rehabilitation after stroke.

This is a rare chance for you to ask these two engaging experts about their fields and any other query you have. They will present for 50 minutes each and the rest of the time will be concerned with taking your questions and panel discussion.

There is NO CHARGE and we can also issue a Certificate to you for 3 hours National CPD Service attendance points.

Both Professors are experts who have given their time kindly and freely to help the ARNI Charity over a span of many years (Professor Ward in particular has helped and supported us by talking regularly at ARNI Conferences and workshops since 2006). 

Chairs: Dr Balchin & Hokman Wong. 

And PLEASE forward this mail to anyone who you think may be interested!

Reservations for Saturday 20th’s awesome event are going quickly, so please do read the flyer below and reserve yours NOW

by emailing tom@arni.uk.com or karleyhewitt@bbkllp.co.uk

We will then email you with a Welcome note which will contain your Registration and Login details.

Please note, the flyer here is a jpg without clickable hot-links. 

Your exclusive free invitation for 3 hours Conference on January 20th 2024: 

For professionals who help those with brain injury – and for survivors and their families – only by application RIGHT NOW!

Professor Nick Ward (Professor of Clinical Neurology & Neurorehabilitation, UCL Queen Square Institute of Neurology) will speak about stimulating motor recovery after stroke.

Professor Anand Pandyan (Executive Dean, Health & Social Sciences, Bournemouth University) will speak about using technology to assist with rehabilitation after stroke.

For 3 hours, on January 20th 2024 (10.30am to 1.30pm), do login in order to listen to (and talk directly with) two of the UK’s leading experts in stroke. The topic will be in particular about rehab of the upper limb.

This is a rare chance for you to ask these two engaging experts about their fields and any other query you have. They will present for 50 minutes each and the rest of the time will be concerned with panel discussion and taking your questions. So do come prepared with a question or two to ask…

There is NO CHARGE and we can also issue a Certificate to you for 3 hours National CPD Service attendance points.

These people are experts who have given their time kindly and freely to help the ARNI Charity over a span of many years (Professor Ward in particular has helped and supported us by talking regularly at ARNI Conferences and workshops since 2006). 

These people are both experts who I try and engage with, if they can spare a second, when I need advice about a particular issue in order to help someone. So whoever you are, be it professional, survivor, family member or carer, do book up for this event (see flyer below). 

Reservations for Saturday 20th’s awesome event are going quickly, so please do read the flyer below and reserve yours NOW by emailing tom@arni.uk.com

I will then reserve a place for you and my colleague (Hokman Wong at BBK) will email you with a Welcome note which will contain your Login details.