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stroke rehab ARNI Armeo 770x290 - Does your therapy end too quickly? - Stroke Exercise Training

Many years of research suggests that the mobility and functional dependence of stroke survivors worsen over time and that accessing later rehabilitation becomes increasingly difficult for stroke survivors. This raises the big question: when should your ‘supported care pathway’ end? The ideal answer is ‘when I am better’.

The problem is that stroke survivors rarely simply ‘get better’ or ‘get back to normal’. Clinical rehabilitation therefore always has to be a compromise, due to time and resources allocated to professionals and patients. Just ask any hard-working physio or OT! And there are also some specific factors (Approach-specific factors, for example) involved in this compromise which will probably never be fully explained to your satisfaction, even if you were to ask.

51es4IOg20L. SX389 BO1204203200  235x300 - Does your therapy end too quickly? - Stroke Exercise TrainingStroke survivors simply tend to know when therapy seems to have ended too soon. They can feel very neglected. Let’s quickly examine Professor Glen Gillen’s handbook ‘Stroke Rehabilitation: A Function-Based Approach’ (a must-get’ read).

In it is an inspirational account from his colleague, the late Professor Barbara Neuhaus (Director of Columbia University’s Programs in Occupational Therapy) who had a stroke in later life and wrote an inspirational description of her resilience and fighting back against her new limitations.

When she got back home from the hospital, different therapists came to her house and assessed her. All three independently signed off that she was too advanced to receive home therapy and so she lost eligibility for further therapy because she was too ‘well’.

Yet instead of feeling elated that these three professionals had all independently agreed she was well, she just felt abandoned and let-down and certainly felt that her rehab was very far indeed from complete.

I’m not sure this squares with US clinical practice guidelines concerning management of adult stroke rehabilitation care:

‘Patients who have sustained an acute stroke should receive rehabilitation services if their post-stroke functional status is below their pre-stroke status, and if there is a potential for improvement. If pre-and post-stroke functional status is equivalent, or if the prognosis is judged to be poor, rehabilitation services may not be appropriate for the patient at the present time’.

Is it that this community therapy failed to recognise the requirement for further rehabilitation, was there no money or time to help her further or was what they felt they could do for her in itself limited at the time? I don’t know. Interesting to speculate though.

Back here in the the UK, we know that many people, after discharge from community physio are clearly not ‘well-enough’ not to need further assistance. They may still be stuck in wheelchairs and/or using sticks and orthotics without much of an idea of how to proceed (ie, self-manage, self-rehab, diminish the use of functional aids over time etc) when the care pathway (from the hospital and community teams) has finished.

But really, it has to be said that the NHS has 99 times out of 100 (or so!) done their very best for them, with usually outstanding pathway – from critical life-saving care all the way to other leading-edge follow-up services such as Prof Nick Ward’s Upper Limb Clinic, which I hope will be used as a blueprint for similar services in hospitals around the UK.

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But here’s the thing. Community therapy obviously should phase into a much, much longer, joined-up and structured period of support. And I think all involved in stroke care would agree with me. But it can’t. The questions to be asked are then: who can help, and who will pay for it. Big questions.

A partial answer to the first may possibly be to activate a rung of professional therapists and exercise trainers to support the hospitals in the way that ARNI has done for years. The answer to the second is unclear and outside the remit of this blog!

Back to ‘what happens after therapy’. There is an interesting review of a workshop carried out by the Care Quality Commission (CQC) that I accessed way back in in 2009 that examines services for people who have had a stroke and their carers. The conclusions from the workshop echo the same stories we are told at ARNI every day. Some of the people involved were even our past patients and carers.

The report includes the comment which I get nearly every day on the phone from stroke survivors and carers as a way to precede asking for help. Quoting from the CQC document: “…often people have been given very negative prognoses. They write you off totally, giving you no hope.” It’s important to acknowledge that once YOU BELIEVE that someone who you view as representing the medical profession has told you this, there’s not much you can do to undo having been told it! It’s the way you respond to it that counts.

My view about this for many years is that often people won’t actually have been told ‘you’ll never move this limb again’, or similar, but it’s what they’ve come to understand as the sum result of the ‘it’s not ethical not give my patient false hope’ thing.

It’s actually the only way possible to proceed clinically, but the net result is people either simply giving up before they start, or go the opposite direction and going at their rehab with renewed vigour ‘to spite’ the consultant/physio or whoever they have labelled as the naysayer! I can’t tell you how many times I’ve heard this with stroke survivors who train with me. Personally, I’m not sure it’s helpful to give little hope to people – I hear this less and less now, thank goodness.

Back to a few more of the issues raised in this 2009 workshop. The people involved discussed how the physiotherapy they had received had been very good and said the physiotherapists had really cared for them. One participant mentioned how the physiotherapists had helped him get out of the house which was really important to his recovery (turning point) and commented that he still keeps in touch with them. The group discussed, however, that therapists are under a lot of pressure and some commented that their physiotherapy service had been cut-off after a certain period of time.

One stroke survivor felt that whilst in his experience the physiotherapy was very good in hospital, the physiotherapists never explained the purpose of the exercises they were given and how they would help. Another participant highlighted the importance of physiotherapists explaining the reason and importance of carrying out exercises. Some people talked about finding further help merely ‘by chance’, and said that they needed help navigating ‘the system’.

Another stroke survivor described how when he had a stroke he was declared medically unfit for work, ‘thrown out’; and had nowhere to turn. He went to the Citizens Advice Bureau but they did not have the expertise. On the medical side, he was simply sent home with no support or back up. He was told he would make a full recovery and had his benefits taken away. He said it was not until two years after his stroke that he was referred to the Stroke Association for informational help. Another stated that independent services are bewildering and it is very difficult to see what you might be able to get to fulfil your needs and help you live. He expressed the view that the voluntary sector is often better than state care services in this regard.

A carer said that the intensive physiotherapy received in hospital was not followed up after discharge, and that they had to wait several weeks after going home for home-based physiotherapy to start. She added that physio (once a week for 6 weeks) was not adequate and that, although instruction sheets were given for practising between sessions, there was no ongoing support after that time. As a result she paid for private therapy. 

But then maybe services in general have improved across the board in the 10 years since this CQC Report.

So, what do you think? Does community therapy end too quickly? And what can community services do better to support physical rehab? Also, what does usual clinical care tend not to concentrate on enough for individuals before discharge?

nick ward stroke rehab upper limb 770x330 - Upper limb after stroke: can we predict recovery? - Stroke Exercise Training

Upper limb impairment affects most patients at the time of the stroke, with persisting problems for between a half and three quarters of survivors. This can be partly explained by where the injury is in the cortex. But because regaining lost function in the upper extremities has been found to be more difficult to achieve than return of normal function in the lower extremities, only 14% of these will regain any useful function. Between 55% and 75% continue to experience upper extremity functional limitations.

Professor Nick Ward (who has kindly taught my ARNI instructor groups at UCL for around 10 years now) runs the UK’s first and to date only dedicated (and outstanding) Upper Limb Service at Queen Square. He states that upper limb recovery after stroke is unacceptably poor – and gives some stats:

  • 60% of patients with non-functional arms 1 week post-stroke didn’t recover

(Wade et al, 1983) 

  • 18 months post-stroke 55% of patients had limited or no dextrous function

(Welmer et al, 2008)

  • 4 years post-stroke only 50% had fair to good function 

(Broeks et al, 1999)

If you’re a stroke survivor, you know already that regaining upper body function is a very different task to rehabilitating the lower body. Nevertheless, the two ‘halves’ of the body are not so different after stroke. New evidence says that both the upper and lower limb are as weak as each other after-stroke, which suggests that the poorer recovery of the arm, so frequently seen in stroke patients, may not be an inevitable consequence of the stroke.

An excellent research paper by Professor Sarah Tyson and colleagues in 2006 called ‘Distribution of weakness in the upper and lower limbs post-stroke’ advises that the effectiveness and intensity of rehabilitation interventions should be considered. This may well be so: the majority of stroke survivors whom I’ve met, when describing their prior physiotherapy and any other rehabilitative efforts, will report that the focus of consistent therapy was usually on the lower limb and walking practice. A minority remembered consistently focusing on practising upper limb exercises.

This happens for a number of reasons, but primarily because it is critical to get stroke survivors walking, and also essential to keep spirits up with the recognition of progress, which probably is facilitated better by the thought of being able to walk again. So hospitals often do not have time to devote to extensive hand-function efforts, and by the time further treatment is sought, the task is all the more harder.

The evidence states clearly that initial degree of motor impairment is the best predictor of motor recovery following a stroke. So, functional recovery goals are appropriate for those patients who are expected to achieve a greater amount of motor recovery in the arm and hand. But the evidence also shows that compensatory treatment goals should be pursued if there is an expected outcome of poor motor recovery. We are even uncertain whether task-specific repetitive training improves upper extremity motor function.

It is vital that stroke survivors are shown, in clinic, ways to either train for progressive functionality or physical self-management techniques or/and both. Rather than leaving people to try and work it out for themselves once they reach the community.

Those with more potential can be shown how to radically ramp up the dose of repetitions performed with upper limb during the day, perhaps incorporating modified constraint induced movement therapy (a beneficial treatment approach which can be done at home, for those stroke patients with some active wrist and hand movement). Professor Nick Ward told me that Professor Gert Kwakkel and colleagues noted way back in 2003 that those showing some synergistic movement in the upper limb within 4 weeks after stroke have 90% chance of improving. 

We interviewed Professor Nick Ward to find out more about his views about what both therapists and stroke survivors can potentially do to improve upper limb outcomes after stroke:


IMG 2096 560x330 - 35 questions stroke survivors ask - Stroke Exercise Training

You may well be interested in reading just some of the questions asked of me by stroke survivors. You may be asking yourself some of these same questions right now. Or may have conquered many of these issues already. These are a sample of meaningful issues drawn from just two places. First, from the sum of a trawl though hundreds of emails to ARNI from stroke survivors from 2007 to 2011. Second, from the sum of a trawl though notes taken next to baseline assessments (Stroke Impact Scale) face to face with stroke survivors. For more information, see the Successful Stroke Survivor manual, published in 2011.

  • Will I be able to walk properly again?
  • Will I be able to coordinate my body movement better?
  • Will I be able to converse properly again?
  • Will I be able to understand people?
  • Will I have to compensate or will I recover actual movement?
  • How weak will I be (muscle loss etc) after discharge?
  • How much rehabilitation will I need?
  • Does my type and severity and site of my stroke impact on my recovery potential?
  • Will my visual problems recede?
  • Will I be able to write properly again?
  • Will I stop feeling overwhelmed and fatigued?
  • Will I be able to drive? Catch a train? Go on holiday?
  • Will I be able to dress myself properly?
  • Will my spasticity (in upper limb/lower limb) recede?
  • Will it be hard to get back to running/being aerobically fit again?
  • Will I get back my full movement?
  • What is the timing, intensity, or duration of such activities I need to do?
  • Will my confidence return?
  • Will I enjoy life as much again with the things that stroke has left me with?
  • Will this affect how long I have to live?
  • How much do I need to rely on being motivated?
  • Will I have to drive this recovery myself?
  • At what point will my movement start to come back in my hand/foot?
  • Will I be able to wear high heels again?
  • Will I be able to do everyday manual tasks (using a knife and fork, opening jars)?
  • Will I be able to regain my strength, flexibility, balance & endurance?
  • Will depression due to loss of ability and abrupt change in life be a factor?
  • Is it true that there is a cut off point for functional recovery?
  • Will my sex life be affected?
  • How long will I need to rehabilitate for?
  • Will I be able to get back to my job/studying?
  • Will I be able to regain a high degree of independence?
  • Will I be able to become progressively more self-sufficient?
  • What current technology for stroke rehab is worth investing in?
  • Might I suffer a further stroke?                                                                            

20140303 145458 300x169 - 35 questions stroke survivors ask - Stroke Exercise TrainingNo consultant, therapist or expert in stroke research would attempt to answer the majority of these without preceding and qualifying the answer with an ‘if’. You are different from anyone else; from injury to the brain and plastic potential to occupational difficulties, demographic details to rate of recovery and lifestyles, making your presentation unique.

So although there are general principles of stroke recovery, and there are some common problems suffered by a majority of stroke survivors, no two stroke survivors ever shares exactly the same experience.

I will tackle all these issues in future posts – sign up now to receive the posts straight after posting.

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The stroke rehabilitation literature suggests that the first three to six months are typically when most spontaneous functional motor recovery will occur. This first recovery mechanism is essentially a resolution of harmful local factors, which generally account for early spontaneous improvement after stroke. These processes include resolution of local edema, resorption of local toxins, improvement of local circulation, and recovery of partially damaged ischemic neurons.

After this time, please don’t let ANYONE tell you ‘that’s it’, because you then have the potential to restore significant function at whatever point from injury you happen to be, whether it is a month or 10 years.  You can take advantage of the second major recovery mechanism: neuroplasticity, which can take place early or late. This is the ability of the nervous system to modify its structural and functional organisation. The two most plausible forms of plasticity are collateral sprouting of new synaptic connections and the unmasking of neural pathways and synapses that are not normally used, but that can be called upon when the dominant system fails.

CIMT (constraint-induced movement therapy – check it out if you don’t know) is a magnificent example of intensive, ultra-focused repetitive work to drive plasticity. This simple but powerful ‘forced-use paradigm’ can be modified for use in your home rather than a clinic, This is the topic for one of my next posts.

So, mu advice is that it is useful to wave goodbye to the naysayers. Forget about any 1-year rule. Forget a 3-year rule. In fact, time to forget ‘the rules’, ok? Very limiting things, rules… because we tend to follow them blindly without asking why they are there or who made them up. Recovery can continue over a long period of time if you have partial return of voluntary movement, especially in the upper limb.  A systematic review of 58 studies confirms the most important predictive factor for upper limb recovery following stroke is the initial severity of motor impairment or function.

Furthermore, who says that you cannot be the exception to the ‘rule’? Potential is a difficult word. I personally have the potential to be astronaut. Probably won’t happen! But recovery potential? Don’t let anyone tell you that you aren’t going to make as good a recovery as possible. The reason is that there is ALWAYS something you can do to try to improve your lot. If all else fails, you’ll at least be keeping the ‘plastic template’ open and available for applications of current or future cutting-edge innovations. That’s why every repetition you do counts. More on this in a later post. For now, I can tell you for certain that time-rules and the ‘nay-sayers’ can be ignored.

IMG 2685 8 300x225 - Does a cut-off point for stroke rehabilitation exist? - Stroke Exercise TrainingThe current UK National Stroke Strategy emphasises the need for long-term, therapy-based rehabilitation for stroke patients. Yet at the same time, there is insufficient evidence to support the development of more therapy-based rehabilitation, which is currently such an accepted part of stroke management.

Wider afield, in Florida, internationally respected stroke therapy expert Professor Pamela Duncan suggested that there is an urgent need to make additional strides in stroke rehabilitation research for such reasons, arguing that we still know little about how the characteristics (timing, intensity, or duration) of traditional therapies really work in comparison to others.

She was, and is still, right! This lack of data is also down to the fact that it has been felt over the years to be unethical not to ‘treat’ a large cohort of patients as part of a control group to test dominant therapies. Whilst the experts figure it out and continue to add to the growing body of high quality studies for the evidence base, I suggest that YOU (when you’re ready), start incrementally to make the rules for yourself, as I did.

To help you on your journey, you can use the complete system shown in the Successful Stroke Survivor manual  and there IS a lot of other help around – you just need to know where and how to look. You can be much more informed than I ever was 2o years ago at the time of my own stroke. You have absolutely nothing to lose. Who knows what you can achieve if you have no set boundaries? There’s absolutely no reason why you can’t ‘Do It Yourself’ to a large extent, after you reach some significant functional milestones, avoiding spending thousands of expensive clinical neurophysiotherapy in the process.

Importantly, you can significantly increase your ability to perform activities of daily life from ANY point in time after your injury. I’ll show you how. Not only that, but I can show you what you have to do to keep, and add to, your gains year on year. Make sure to tune in to further posts!

article 2414475 1BA32051000005DC 219 634x485 634x330 - Time to get going - exercise rewires your brain - Stroke Exercise Training

“If we could put exercise into a drug, it would be one of the most effective medications to  prevent vascular disease and treat patients with cardiovascular and cerebrovascular diseases including stroke.” Yep. And this statement is reinforced by the finding that exercise interventions are significantly more effective than drug treatments in both rehabilitation and reducing the odds of mortality among stroke survivors.

Chronic inactivity related to stroke basically has a whole load of physiological consequences that result in cardiovascular deconditioning, increased cardiovascular risk and increased mortality and morbidity risk.

The majority of survivors are cardiovascularly unfit. It has been found that due to the effects of stroke, you can even be rendered half as cardiovascularly fit compared to someone who has not had a stroke.

This can be worsened by a pre-existing cardiovascular condition, such as hypertension, congestive heart failure, peripheral vascular disease, or pulmonary and metabolic diseases. This is the bad news. The good news is that the evidence now also suggests that your exercise train-ability may be comparable, in many ways, to that of your age-matched healthy counterparts.

Despite the fact that the energy expenditure required for you to perform routine walking varies with the degree of weakness, spasticity, training, and AFO usage.. and is elevated by one and a half to two times that of non-stroke subjects…you can increase your cardiovascular fitness by a magnitude that is similar to that of healthy adults who engage in endurance training programmes. Improving aerobic fitness may allow you to carry out everyday activities with less effort and for longer periods.

So you’ve got to be active, right? There’s another crucial factor you need to know. There is growing evidence that exercise promotes brain neuroplasticity. Neuroplasticity mediates cognition and the relearning of motor skills and other skills after stroke. Brains learn what they do. Remember, the brain loves repetition. Cardiovascular exercise is repetition.

And for such adaptation to happen optimally, you must be prepared to do some focused work with whatever movement you possess (with some caveats, to be explained shortly), even if you believe you have none at all. Over and over again, with as much attention to detail as you can muster.

We’ll have a look at programming for cardiovascular fitness in further posts (watch out for my tips and hints coming shortly!).

But the take-home from this post is that I want you now to think of yourself as a CREATIVE stroke survivor. Take walking. Repetitions are required but ALSO you need to set goals and targets (actually, like me, you’ll find these are fast-moving targets): to get away from supports like wheelchairs, frames and sticks as soon as possible, to go further, to go for set distances, to feel less tired each time, to ramp up the quality of your walking by focusing on how you walk, to walk over different surfaces, to walk with an AFO and without, to tackle stairs, etc. etc.

Time to make a move! Get professional help if you need or ‘go-it-alone’. If you are setting up to ‘retrain’ by yourself, when attempting walking practice, dependent on your presentation, at least collar a young and strong family member or friend to help you. No-one will mind, especially when they see you making a darned good effort. The world is yours.

IMG 6034 770x330 - 6 targets you need to have as goals after stroke - Stroke Exercise Training

Even you have hired the help of a trainer or a therapist to get you started (advised), you must have input towards your own rehabilitation and the way you want to go. Knowledge is power. My aim is to show you exactly how to achieve 6 things:

  1. Correct balance, co-ordination and posture over time
  2. Increase muscular, tendon and ligament strength and fitness over time
  3. Decrease spasticity and increase specific functional movement return over time
  4. Increase confidence and remove fear of the consequences of exercising
  5. Become progressively more self-sufficient
  6. Become productive in an occupation and be happy with life

Can you take up the challenge? These can all be achieved by you to a certain degree, however old you are, if you want them badly enough and are prepared to sacrifice some time and effort. Can a generic programme be created? For example, is there one ‘programme’ that will fit everyone? It would be much easier that way, right?

The simple answer is ‘no’. But there are many things that all stroke survivors must do, and many things that most will need to do. You will start with basic tasks that you need to master in order that you can work towards more complex tasks. Everything you do will rewire your brain: by doing more, you will develop more motor control and gain strength. You will ‘get nothing by doing nothing’.

Please understand that the degree to which brain repair, neural rewiring and neurogenesis happens can be influenced very significantly long after the short therapeutic window after stroke may close.

stroke survivor1 300x116 - 6 targets you need to have as goals after stroke - Stroke Exercise TrainingSo, I hope to emphasise to you with this post that the regain of functional movement with control, strength, flexibility, stability and essential physical coping strategies are highly individual, relying as they do on your own genetics, status of accompanying medical problems, attitude (drive, persistence, desire and motivation) and so very many other factors.

The longer you’re a stroke survivor, the more you’ll notice that you can ‘win’ or control (manage) many of these but others will have to be accepted. And, I have to tell you, that re-training efforts can never stop, throughout the rest of your life. Sounds like bad news?! Not so… I’ll show why, in a forthcoming post.

Long term stroke survivors reading this will be nodding to themselves. New stroke survivors will get to understand what I mean (just read my next posts. The good news? ‘Retraining’ can very soon phase into an enjoyable and social physical activity wherein you are actively rehabilitating. So encouragingly, it seems that ‘formal training’ is finite… but it must be done right so you can phase into a maintaining status quo in some areas and regularly improve in others (usually micro-improvements).

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Stroke is the commonest cause of physical disability in the world and although there are many excellent services to help stroke survivors, there is no doubt that the continuation of practice and exercise programmes is invaluable in enhancing recovery.

This is important because neuroimaging studies tell us that the brain is a plastic organ. In other words the brain’s structure, the way it is organised, and the way it functions can be influenced by practice and learning. This is the basis for at least some of the recovery that occurs after stroke. A major problem often encountered is that stroke survivors are not sure what exercises they can usefully or safely perform.

The secret is that ‘re-training’ rather than ‘therapy’ is the zone you need to think about now.

Did you know that what we call ‘task-oriented’ exercise programmes are the most promising? If not, you’ll get to love the effects of task-related training IF YOU CAN PROVIDE ENOUGH DOSAGE. By this I mean ‘time on task’… targeted repetition… drives plastic change by strengthening connections. Each rep you do counts.

Enhancing upper limb function is often an essential component of rehabilitation. Weakness in upper-limb musculature could impair stabilisation of proximal arm segments, limit reaching ability, confine hand usage, and affect upper-limb control and coordination. These factors have a direct effect on the use of the paretic (weaker) upper limb in daily activities, supporting the importance of paretic upper-limb strength.

constraint induced movement therapy tsf - The 3 most powerful ways to recover after stroke - Stroke Exercise TrainingLow grip strength in the stroke population can and should be corrected via strength training since grip strength is also a predictor of disability and mortality in older adults. This is why ARNI has, since inception 17 years ago, concentrated on task-training, strength training and the appropriate development of physical coping skills. We’ve done the same thing ever since.

The evidence base right now supports these THREE components that form of backbone of ARNI type training over all others – principles which training can be based around. In a post further on down the line I’ll show you what kinds of ‘interventions’ (those that operate concurrently with an effective dialled-in training programme) hold the most promise too, and that you should explore. It’s the best time in history to be a stroke survivor!