News

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.

Virtual reality (VR) basically means interactive simulations of activities within environments that appear and feel similar to real-world objects and events (augmented reality).

Would you like to apply (or forward this email to a colleague/friend to consider applying) to come on 15th December 2023 to the VSimulators at Exeter Science Park:

• to get involved with testing cutting-edge VR?
• to take advantage of follow-on exercise of the University lending you prototype VR kit for use at home for 6 weeks?
• to meet Professor Helen Dawes, Dr Tom Balchin & research colleagues & to take part in various workshops?

If so, please read below!

After stroke, survivors who wish to try such augments can find numerous task-training systems on the market that involve a variety of activity-based games that test and (purport hopefully to improve facets of) strength, speed, endurance, range of motion, coordination, timing and cognition.

VR interventions can be expensive but most are usually created to be affordable. A set-up often features just a keyboard, a mouse, a specialised multi-modal device such as a console or gloves with built-in movement sensors. Haptic devices are a good example of this. VR devices often provide feedback on movement execution and goal attainment. Many will help you to repetitively practice large and small movement-based tasks through the use of fun and motivating activities that can be completed while sitting, standing or lying.

Upper-limb VR kit is popular at the moment because many users report positive changes in fine manual dexterity, grip force, and motor control of their more-affected upper limbs. You may therefore find that it integrates with your current rehabilitation if you can find a suitable device. 

A meta-analysis conducted in 2020 reports a comprehensive search investigate the efficacy of virtual reality (VR) and gaming-based interventions for improving upper extremity function post-stroke, and to examine demographic and treatment-related factors that may moderate treatment response, conducted within the PubMed, CINAHL/EBSCO, SCOPUS, Ovid MEDLINE and EMBASE databases for articles published between 2005 and 2019. This analysis revealed that on average, VR or gaming interventions produced an improvement of 28.5% of the maximal possible improvement.

Of particular significance: dose and severity of motor impairment did not significantly influence rehabilitation outcomes. Treatment gains were significantly larger overall (10.8%) when the computerized training involved a gaming component vs just visual feedback. VR or gaming interventions showed a significant treatment advantage (10.4%) over active control treatments. 

ARNI Stroke Rehab and Exeter University invite you to test examples of upper-limb VR kit on 15th December 2023 (10:00 – 17:00) in the world-class VSimulators building at Exeter Science Park, plus a follow-on exercise of lending you VR kit to for use at home for 6 weeks.

Would you personally like/are you able to apply get involved?  Please apply now if appropriate, to come along and get involved in this super opportunity…

Research Session 1: you will take part in a study that give you the chance to try five game-based exercise platforms that can detect your movements using laptop and webcam. Each game consists of several activities designed to train your upper limb and trunk control from a sitting or standing position, according to your abilities.

In this session, you would do some exercises for your upper limbs from seated or standing positions to determine how well you can do the exercises and if these games will be helpful as home-based exercise for people who have had a stroke.

The research team will also ask you about your expectations (before the testing), your experience, and how you found the exercises (after each game).

Research Session 2: you will be invited to try a home-based, immersive reality rehabilitation system, which is designed to detect ‘compensatory’ movement patterns and help you correct them.

Often after stroke people develop compensatory movement patterns in their upper limbs. This system uses an in-built camera to project the user onto their television screen so they can see themselves as an ‘avatar’ as they complete games and exercises. This system is able to track your movement patterns and alert you when you compensate during an activity.

After the Sessions: After the session, you may be able to continue with the study from you own home. Researchers from University of Exeter would help get the RehabKit set up in your home and provide you with personalised upper limb rehabilitation exercises for 6+ weeks.

To register: please get ticket at:

https://www.eventbrite.co.uk/e/758796359337?aff=oddtdtcreator

Or email: movewell@exeter.ac.uk and Exeter University will book you on your behalf.

Email tom@arni.uk.com for inclusion too, plus any questions.

Did you know that your flu jab may also be viewed as a preventive intervention for stroke? 

It’s recommended to book in to have your flu vaccination in the autumn, toward early winter – before flu rates increase – so, around now. Getting the flu vaccine has been indicated in a number of large-scale meta-analyses to date (three described below) to lower the risk of stroke by over 12% in all adult populations.

The vaccine has a low usage rate overall, especially in younger adults (those under 50). Many people think… ‘oh, it’s just the flu, it’s fine’. But the flu can be a devastating disease. Once people understand that having flu raises the risk for heart problems (which is why it’s strongly recommended for people with heart disease) and stroke (and the flu vaccine significantly decreases the risk of both), this may change their view so that they are more willing to get a routine flu vaccine.

It’s long been known that respiratory infections increase the risk of stroke in the days following infection. Acute systemic inflammation may drive the relationship between flu and stroke (possibly through endothelial dysfunction, atherosclerotic plaque instability, and a procoagulant state).

So, can getting the jab really can be a case of ‘two for the price of one’? Greater protection from flu and stroke at the same time? 

In meta-analyses of observational studies, individuals who received the influenza vaccine have been found to be less likely to have a stroke, and it’s important to note that a caveat is that unavoidably, studies have been heterogenous, relatively small, and potentially limited by biases. Hence no global recommendations may yet be made; research is still being collected on whether getting the flu vaccine can definitely help protect against a stroke.

But to be able to reduce your risk of stroke by taking such a simple action is very compelling. Let’s look further…

A large scale study reported in the Lancet (November 2022) the statistics of over 4 million adults (over 18) in Alberta, Canada (4,141 209 adult individuals with a total observation time of 29,687 899 person-years) revealed that the risk of stroke is reduced among people who had recently been vaccinated against influenza compared with those who had not. Further, that this association extended to the entire adult population and was not limited to individuals with a baseline high risk of stroke. Vaccination was associated with a reduced risk of stroke in both men and women, but the magnitude of benefit was larger in men than women, perhaps because unvaccinated men had a significantly higher baseline hazard of stroke than did unvaccinated women.

Based on an analysis of comprehensive data from the entire population of a province of Canada, the analysis showed a clear and clinically relevant association between recent vaccination against influenza and a reduction in the hazard of stroke compared with no recent vaccination. This association was present across all stroke types, and extended to the entire adult population and was not limited to people at high risk of stroke.

Another analysis reported in Neurology (September 2022) indicated a similar finding: statistics (14,322 people who had a stroke and 71,610 people who did not have a stroke) from a primary care database in Spain from 2001–2015 showed that those who had the flu jab were 12% less likely to have a stroke than those who did not (adjusted for the following factors). The reason isn’t fully clear, although the authors of the study suspect vaccinations may have an anti-inflammatory effect.

The researchers looked at whether people had received the influenza vaccine at least 14 days before the stroke or before that same date for those who did not have a stroke. A total of 41.4% of those who had a stroke had received the flu shot, compared to 40.5% of those who did not have a stroke. But the people who got the shot were more likely to be older and to have other conditions such as high blood pressure and high cholesterol that would make them more likely to have a stroke.  

Since the study was observational, it does not prove that getting the flu shot reduces the risk of stroke. It only shows an association. There could be other factors that were not measured that could affect the risk of stroke. For example, there may be unmeasured or unknown factors such as those related patient healthy habits (e.g., diet, exercise, better adherence to treatments) that can be associated with vaccination and, at the same time, may lower the risk of having a stroke.

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