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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, to sum:

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

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

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

Have YOU got aphasia?

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

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

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

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

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

The ARNI SLT Telerehab Service:

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

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

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

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

The Evidence:

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

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

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

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

Heading up the ARNI SLT Telerehab service are:

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

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

For more Info & How to Apply:

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

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

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

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

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

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

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

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

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

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

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

An invitation to YOU:

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

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

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

Thank you so much!

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

The Research team

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

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

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

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

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

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

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

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

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

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

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

Would YOU like to be involved?! 

To take part you must be:

18 years or older.

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

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

able to wear a FitBit for 6 days.

be able to use a smartphone.

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

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

The aims of this are to:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All survey responses are anonymous.

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

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

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

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

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

After stroke, you will probably experience problems with trying to recover your balance (your ability to control your body without movement against gravity) and stability (your ability to control your body during movement).

Your stroke will have weakened the messages your ears, eyes and muscles send to your brain. These messages are essential to initiating and maintaining balance, and they work together automatically and subconsciously so you’re usually unaware of them unless something goes wrong.

As your brain begins to repair itself, and therapists help you, you will hopefully see larger-scale improvements. However, long-lasting balance problems may occur after discharge, especially if the stroke has affected your vision or hearing.

After discharge, with a therapist or trainer guiding and guarding you to extend your capabilities, rehabilitation can take many forms and should be supervised by a therapist or a specialist trainer who will provide individually-tailored activities to progressively stimulate your recovery.

You may find that this includes challenging types of weight bearing and weight-shifting. You may be starting by holding onto a fixed bar such a rail or banister (making sure to involve your more-affected upper limb in the way that your therapist or trainer will show you).

Balance perturbation and lower body strength training (again with a therapist or trainer guiding and guarding you to extend your capabilities) are identified as successful further training regimens.

Multiple guided and guarded requirements for you to cope with gentle pushes, attempts to reach for objects away from your trunk can complement your balance control attempts.

It’s completely normal to feel worried or scared about carrying out any balance exercise. They are challenging and all retraining away from a seated position carries a risk of falling.

But it’s vital to continually extend your boundaries whilst minimising the risk to your safety. And it’s equally vital that you ask your therapist or specialist trainer how to do this.

When you start to take steps and are into the primary zone of controlling your gait again, there are so many ways you may find that a simple walking stick can improve your stability and confidence.

My caution would be to try not to rely fully a stick held in your less-affected hand so that it becomes habitual to weight-bear substantially though that side, thereby ‘negating the potential’ somewhat of your more-affected side. This can happen as a matter of course and can put back your recovery without you realising it.

TIP TO CONSIDER: try to reduce the use of a stick as much as possible when starting to move around the house again, in preparation for going outside with it. Then graduate towards leaving it at home or using it only when you’re out for longer stretches of time. Available for purchase is a handy stick which folds into three for this purpose. This can be carried and used if you’re tired.

To rehabilitate balance, a very simple rule seems to emerging from the sum of the latest evidence, which supersedes some of the historical accepted therapeutic advice for community rehab efforts: the more you attempt to move, the better your movement will get, not worse.

ANOTHER POINT TO CONSIDER: there are strong indications in the research that recovery of functional control after stroke occurs through strategic behavioural compensations plus what can be termed as ‘true recovery’ efforts rather than via processes of ‘true recovery’ efforts alone. Hence, an accumulation of some coping strategies that are most essential for your needs is a very good idea and can open a doorway to further levels of functional ability.

Passive or ‘correctional’ movement as a treatment option for most community survivors is being shown to be rather  inferior to the stroke survivor being guided to make repeated, active attempts to complete tasks for themselves, ramping up the repetitions of tasks as much as is possible/is appropriate and as much as concomitant problems such as fatigue allow for.

So, some physical coping strategies (such as a quick technique for getting to your feet from seated without help or a lying position on the floor without help) are much better to have learned quickly via training to enable you to progress, rather than to be stuck without applicable techniques to perform them easily.

Other examples you can explore in Had a Stroke? Now What? can last you a lifetime. By retraining each one and making it part of your ‘repertoire’, you may also start noticing that they help you manage your (current) limitations and help you perform task specifics.

And some coping strategies are absolutely fit for purpose therefore and can be retained as useful, but many can be minimised and ideally negated as you gain more control and strength. They can be regarded as ‘facilitators’ which can help you to self-manage.

You’ll most probably ‘souvenirs’ from your stroke, but nevertheless, you need to get yourself into the ‘success zone’ fast in order to try to counteract their effects.

For optimal recovery, you need helpful interim strategies which can minimise the chances of any damage (from balance loss, for instance) that can occur whilst pushing yourself forward to deal with situations you’ll find yourself in during daily life.

You can also find lots of these in the ARNI 7 stroke rehab training video set, available in DVD or online anytime viewing.

When people have strokes, loss of strength as a result can be extensive and a major contributor to prolonged recovery times. It’s estimated that the strength loss after the stroke is around 50% on the affected side of the body. The reasons for losing strength are related to factors such as weak neural activity after a brain injury and losing muscle mass (atrophy).

The evidence suggests that stroke survivors, at an appropriate time, should be guided to take part in some sort of regular resistance training that emphasises strengthening both affected and unaffected sides to prevent strength and muscle loss.

For example, one recent study, with 370 stroke survivors, showed that progressive resistance training had a large positive effect on strength regaining compared with no activity.

Structured resistance training can increase muscle mass (hypertrophy) and also has been shown to have  positive effects on reducing anxiety, improving quality of life and cognitive function. Resistance training is often pretty simple to do, but does need guidance. It could be dynamic (moving an object such as a dumbbell for a few repetitions) or isometric (producing maximum contractions against static resistance), or a mixture of both.

Showing stroke survivors how to do simple targeted strength-training is a good thing, not only for managing the weakness caused by muscle-loss, but also for targeting spasticity (with limitations). Improving motor neuron recruitment by using gravity against limbs, weight of objects used in tasks, external support and external resistance are evidence-based parameters which can be manipulated to increase strength.

Furthermore, A recent Cochrane Review revealed that strong correlations exist in the current stroke rehabilitation research between improvements in strength and improvements in function. This is significant, as researchers previously did not have enough data not so long ago to make this evidence available for therapists and trainers to incorporate into their work with survivors.

An invitation to you:

A group of researchers from Sheffield Hallam University, the University of Sussex and ARNI partnership are interested to know your thoughts on designing feasible home exercises for strengthening and mobilising the upper limbs after a stroke at a chronic stage (at least 6 months after stroke).

The research team recently secured a grant from UK Research and Innovation (UKRI) to investigate the methods to design smart and digital environments for stroke survivors at home (click the link below to the grant page to find out more).

Creating digital, interactive, smart home exercise environments for older adults with stroke – healthylongevitychallenge.org

What is this research about… and could it be of use to you to take part?

The research team are very interested in working with you, face to face, to find out your views about how best to create a digital programme to help improve muscle strength.

They would ask you to consider whether you would prefer to use forms of equipment such as weights, dumbbells, resistance bands and combinations of such items.

The research team would very much like to invite you to participate in a small group discussion (maximum 10 people) in a large boardroom at Lingfield Racecourse in Surrey, overlooking the race-track, with three researchers from Sheffield Hallam University and the University of Sussex, as well as Dr Tom Balchin and a number of the ARNI therapists to run the proceedings.

The object, as noted above, would be to share your opinions and experience in doing resistance training at home or in gyms. The session duration will be 2 hours with refreshments.

If you had a stroke at least in the last 6 months and you are ambulant (not a wheelchair user) and with experience in using fitness equipment (after or before your stroke), the team would be so grateful to to listen to your considered opinions…

Place, date and your travel fare paid.

The session is in person at Lingfield Park Marriott Hotel & Country Club (Lingfield, RH7 6PQ).

The date of this event in January 2023 is to be confirmed, but please enquire now.

You can choose to come either for 10.30-12.30 session or for the 13.30-15.30 session

The event is free and the Research budget will pay your travel fares up to £25.

Covid-19 Safety.

A message from the research team about Covid-19 safety: they will ask the participants and researchers to use a face mask and sit in a safe distance (2m). They will provide face masks and hand sanitisers and the windows in the room are open for ventilation. They will ask you to do not attend the session if you had any flu symptoms or you were with someone who was infected by COVID-19 in the last 10 days before the session.

Who to contact

If you like the sound of taking part in this study, please contact Dr Mohsen Shafizadeh (m.shafizadeh@shu.ac.uk) to register for this event or ask further questions. We will send you the Participant’s Information Sheet and other forms via email. You will sign a hard copy of the consent form in the session.

The Research team

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

Emotional responses to stroke are very varied indeed – and are influenced by a host of issues.

For example, by the severity of your difficulties and perceived losses, your individual coping style, your familial/social support network, your cultural beliefs about disability, and your previous mental-health.

Some of the emotional and personality changes you may face are caused not only by changes that have taken place in your brain, but because of the ongoing emotional burden caused by your stroke.

It’s important that your family, carers and friends understand the more common possible emotional changes, in order to appreciate the way you express your feelings and thoughts about your stroke. It can readily be seen that ideally, they should receive advice concerning how to help you cope and how to cope themselves.

The idea is to help you take as many active measures to (emotionally) manage situations as you can.

For example, it may be best to avoid crowds and stressful conditions, which may in turn make you feel overwhelmed. You can try learning relaxation techniques to help you combat any stress and fatigue you may experience after your stroke. There are lots of devices and apps to help you manage to bring emotions to an equilibrium over time.

A big tip from me, as a successful stroke survivor, is that consistent physical re-training yourself with the help of an instructor AND by yourself)can potentially bring an  increase in confidence and strength of mind, which can in time result in the feeling that you’re steadily ‘covering yourself with armour’ emotionally, with a potential result in the decline of ‘negative’ emotional changes. It certainly did for me, and I’ve seen it in many hundreds of people since.

It’s so important that you are helped to tackle emotional difficulties that you may be having – and it may take a specialist cognitive therapist to help you. This is because having difficulty coping with your emotions can impact you for years in many different aspects of your life. Linked to your emotional responses, the cascade of changes that have will have taken place in your brain during your stroke can alter your behaviour dramatically. For example, your character may have changed in some surprising ways.

You may now be experiencing new, impulsive tendencies and poor judgements of your own safety and that of others. You may also be experiencing emotional lability. This is a condition where you have rapid and emotional changes in mood.

You may cry easily or laugh uncontrollably or display feelings of hopelessness, frustration, anger, aggressiveness, impulsiveness and other symptoms.

Apathy is another possible problem (more information from ‘Stroke’, 2013). where you may experience diminished goal-directed behaviour and you may go through periods where it seems like you feel nothing or not feel like doing anything at all. Diminished motivation, lack of emotion, interest, concern or enthusiasm to take part in your own recovery may be noticed by yourself and/or others around you.

Apathy can have negative impact on your recovery of function, your ADLs, general health, and quality of life. It can stop you from enjoying your social connections and bothering to do things that you enjoy. If you develop apathy, it can also lead to a significant extra burden for your families, carers and friends… and worries them because it’s obvious how it will hold you back from potentially conquering/coping better w the situation you’re in.

Depression is also amazingly common. Around a third of stroke survivors experience it after stroke (roughly the same percentage as those who suffer aphasia). Stroke survivors with suspected depression can be referred to a clinical psychologist by their GP. It’s very important for you, your family, carers and friends to be aware of depressive symptoms so you can receive the help you need, if required. Depression is classified as more than just being sad. You may feel worthless, hopeless, have little motivation to keep living, experience intense anxiety and you may even sleep more to ‘escape’. If you experience any of these feelings, please consult your GP immediately.

The Potentially Good News

It can be easy to think that emotional changes will never improve, but research shows that you may well come to terms with the after-effects of your stroke, which may in turn help responses and mood to become more balanced.

Please see my point above about the further possible positive effects of successful functional retraining. Moreover, if appropriate medication is administered to help you self-manage, your emotional balance may well improve to the extent that you won’t need to struggle.

Mood problems can impact engagement in retraining, adjustments to difficulties, reintegration to the community and vocations, and can result in higher care needs and increased mortality, including risk of suicide. Physiological changes in the brain can lead to new and exaggerated expression of behaviour.

These are most likely to be experienced by those working with families and carers working with survivors with significant cognitive, communication and physical difficulties. Behaviours can range in severity and most usually have a function such as communicating a frustrated or unmet need. Families and carers have to come to understand these behaviours as best as they can.

Partners in particular, who are now cast in what I’ve always thought of as the terribly impersonal role of ‘carer’, must understand that now it may well be a case of ‘one stroke, two survivors’. Moreover, there is a higher depression rate recorded in studies of caregivers to those with stroke too, particularly when those whom they’re caring for are severely dependent.

So, successful surviving after stroke -and successful re-integration into a good quality of life with a return to work perhaps, and/or a good quality of life  – does require multifactorial on-going interventions – many of which need to be light-touch (and ‘get-able when required), but there nevertheless. 

Consistent and positive support, such as that offered by an excellent therapist/trainer (a qualified ARNI Instructor being just one example) is a great way to start this, as such a person will come in to the home, offering an encouraging example of health and strength for the survivor to hopefully be motivated by, and will know many innovative strategies to trial with the person to help them be creative with their own recoveries.

A survivor who starts to take ownership of their recovery as soon as they can is possibly more likely to start to take control of emotional issues which may be affecting them.

For example, a research study conducted back in 2011 to examine the effect of depression or apathy on functional recovery after stroke in 237 Japanese stroke patients found that:

‘an appropriate level of insistence on recovery may, in fact, be associated with reduced depression and apathy, resulting in enhanced recovery from stroke-related disabilities. Improvements in physical disabilities (trunk stability or activities of daily living, such as walking) also reduce depression and apathy. Therefore, the experience of post-stroke depression and apathy may be intertwined with various initial emotional responses and improvements in physical functioning. Effective treatment of post-stroke depression and apathy require a multidisciplinary approach, such that neuroanatomical/neurobiological, emotional, and physical (rehabilitation) domains are all addressed’..

Post-stroke motor recovery suggests the existence of a period of heightened plasticity in which the survivors seem to be more responsive to treatment. This is the so-called ‘critical time-window’ for recovery. In short, a systematic review in 2002 found that on average, recovery reaches a plateau at 15 weeks for patients with severe hemiparesis and at 6.5 weeks for patients with mild hemiparesis.

This is one of the reasons that you may well have already heard from a number of sources that 3 months to 6 months to recover function is your limit, and after that, improvement is probably going to range from very difficult to impossible. The field of neurorehabilitation has generally accepted this time-window in the past and the hypothesis has also justified the general cessation of physical therapy at chronic stages.

But you must also appreciate that a gradient of significant possible responsiveness to treatment (and also responsiveness to neglect of rehab/retraining) that extends after 12 months post-stroke has been uncovered, which is VERY relevant for the majority of stroke patients.

Pay attention to the way the red line shows the possibility of improvement  in body functions and activity after six months, as well as the possibility of decline.

The chart above, published in the Lancet in 2011 by experts in stroke (Professors Peter Langhorne in the UK, Julie Bernhardt in Australia and Gert Kwakkel in Holland), clearly shows this.

All research professionals in stroke want to locate optimal routes/combinations of interventions & therapies for you to improve. But as it stands right now, the optimal timing for rehabilitation and intensity of treatment remains unclear. Research scientists are currently trying to determine the best time after stroke for intensive motor training and others are investigating the effect of early and intensive therapy on upper extremity motor recovery.

The evidence is starting to show that physical therapy and self-training can have a significant impact on body structure and the function of the upper extremity at all periods post-stroke. So, if you can, please try to pay as little attention as you can to anyone making the point that your ‘time window’ has either fully closed or is about to fully close from now on and let’s crack straight on with working very hard (and with know-how of what to do/what not to do) at your recovery. Who knows what will happen? Make efforts – and locate someone to help. Even coaches need a coach. I do! I have a  strength training partner who works in the neurorehabilitation field, who acts in that way for me and has done for around 20 years now.

Even if you’re unlucky and can’t find a therapist or trainer who is able to assist you, it’s about using self-help guides (like Had a Stroke, How What, from which this article is taken) to steer your recovery through the stroke maze. This is the reality. You just need to start. Plasticity will be kicked into high gear when your brain perceives new information as particularly important and when your training is frequently repeated. After a significant period of honest effort of pure ‘rehabby’ efforts, you’ll be transformed both physically and mentally.

To help with task-training, strength training and developing physical coping (not compensation) strategies, there are also so many adjuncts to community stroke rehab retraining these days – low tech to high tech – from AFO’s that can phase you on from rigid plastic orthotics, to upper limb de-weighting devices, simple and cost-effective devices like the Neurogripper (shown right, and available from ARNI), dynamic orthoses, upper and lower limb robots, virtual reality, FES, EMG biofeedback, telerehab and apps etc and there a number of well-evidenced clinical interventions too to target limitations from stroke, from targeted intensive therapies like CIMT, to pharmacological and even to surgical.

But here’s the thing. The day will come when you’ve found a combination of external adjuncts and retraining elements that works for you. If you haven’t or can’t, PLEASE consult a physiotherapist. And ‘phone up ARNI – we can and we will help to guide you.

I make my view about stroke rehab very clear, which is that if it’s ‘by rote’ and too ‘samey’ and doesn’t challenge you to work on the edges of your ability during your days, then the best way forward, to accompany retraining efforts is to consciously accompany your active recovery efforts with a physio or trainer with an into an actual hobby that is enjoyable and very productive. Or a couple of hobbies with different emphases. If you need to work this through with a health professional or family member or friend, then that’s just great – do is as part of on-going goal-setting/accomplishing…

The best results I’ve seen are when people start to do new hobbies which creatively challenge their own functional limitations. Producing artwork, music making, swimming, cooking, indoor shooting, model railway or Airfix kit constructing and photography are all examples which can be made to be highly rehabilitative if used to directly/knowingly/progressively to tackle motor limitations.

Many more examples of these are revealed in ‘Had a Stroke? Now What?‘, including the combination of ‘hobbies’ that I used to support my very successful upper limb rehabilitation

So, it will be time to get out there and do all sorts of things that are open to you as you seek to create (and get healthy) in the 21^st century. And this will open up a whole new tranche of innovative new recovery possibilities. You’ll see. I can promise you that the ‘doing’ of a creative hobby or two which repetitively involves your more-affected limbs is the most efficient way to keep recovery and self-management efforts going over the long term. It’s the ‘no-rehab optimal rehab style’!

Permissions.

Hypothetical pattern of recovery after stroke with timing of intervention strategies (Figure 2). Reprinted from The Lancet, 377(9778):1693-1702, Langhorne P, Bernhardt J, Kwakkel G., Stroke Rehabilitation, 2011, with purchased permission from Elsevier.

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