Would a jet pack enable you to live better? Our next tweetchat June 16th at 5pm BST!

Since November last year, I’ve been working closely  with the charity Devices 4 Dignity to conceptualise, plan and deliver a unique patient-led event to better understand patients unmet needs, who are living with long term conditions and it got me thinking. Why don’t we have a #strokerecovery  tweetchat on how we can better help recovering stroke survivors, live more independently, in their day-to-day lives?  Let’s remove ‘dis’ in disability and see if we can help stroke survivors, their families, therapists, researchers or companies come up with ideas to enable people more.

When I think of basic living activities that we do everyday like bathing, washing, dressing and going to the toilet.  There are also instrumental activities such as preparing meals, housecleaning and managing finances. Finally, there are meaningful personal and leisure activities like mindfulness, socialisation, or walking the dog either on foot of with an affordable, suitable mobility scooter!

Over the years, I have delivered a few speeches on assistive technology  I think of some of the things we have been told over the years, which you too may have come across.

‘I wish my panic alarm was waterproof and it looked less medical’

or

‘I wish I could remove my underwear with one hand when I go to the loo.’

or

‘I wish I could switch off all my lights and switches with one go.’

or

‘My catheter is so fiddly to fit’

or

‘What would help me improve my speaking voice?’

or

‘My bathroom looks like a hospital WC!’

or

‘I struggle to open my medicine packets.’

or

‘I feel so invisible in my wheelchair.’

or

‘I am so low. How to I help myself meet other stroke survivors who understand.’

or

‘I am physically struggling with my toddlers, can anything help me?’

or

‘I’d like to clean my house myself.’ (Not something that remotely bothered Kate Allatt by the way!)

‘I can’t cope with the household bills.’

or

‘How can I take control of my physical recovery? Is there some sort of exercise plan for me I can follow so I can walk again on my own?’

These are just some comments we’ve come across in people pursuit of trying to take control, enablement back in their own lives. Why, for example, do we not have an ‘Amazon-type’ shopping service which allows patients to input their unmet need and it throws up a series of approved companies/products that could help.  Also, why do we not make some of the assistive technology more affordable with more finance and leasing options ?  For example, we buy sofas on higher purchase and most people rent, as opposed to owning, cars now?

We are absolutely delighted to welcome two new hosts to our tweetchat – @Sas_Freeman, stroke survivor, mentor and speaker; and @jo_Howe psychological researcher into chronic stroke rehabilitation at the University of Birmingham.

 

@KateAllatt

Stroke survivor

@FightingStrokes founder/CEO 

Internationally published author – Running Free

#Aphasia Tweetchat – what you said! #strokerecovery

After a rather shaky start, what some confusion over British Summer Time (some didn’t realise our clocks have already sprung forward!) we were finally able to have the aphasia tweetchat at 9pm UK time in the end. (We’re really sorry if you missed the group chat and wanted to participate!) I’m also sorry that aphasia sufferers themselves would find getting involved with a tweetchat on aphasia somewhat difficult.  I guess I had family, loved-ones, clinicians, companies, academics and researchers more in mind when devising this tweetchat to learn and contribute to our knowledge pot to better help patients. However, if we offended or prevented patients from contributing directly on this occasion, we sincerely apologise.

There are a few themes that came out from yesterdays chat which I’ve tried to summarise here but feel free to scan the transcript and analytics!

It is estimated by @TactusTherapy that there are around £2 million people with aphasia in the USA and The Stroke Association says there are around 367,000 sufferers in the UK.

Aphasia can last one day, one week or where there is a spontaneous recovery or it can be a chronic long term illness.

Aphasic people can use props, draw words or pictures on paper when trying to communicate, get people to speak slowly or stay calm when they are talking.  Additionally they can carry a card to let strangers know that you have aphasia and what aphasia means.

 

1. It appears there is considerable confusion over the medical labels to do with speech and communication issues eg, apraxia versus aphasia.

2.  Community support for aphasia sufferers and their loved-ones is very lacking.

3.  Evidence-based research into effective aphasia interventions is also lacking due to available funding streams and support priorities.  Maybe, we need to be better at demonstrating improvement after certain aphasia interventions? Perhaps, we can learn from the work from the Aphasia Centre Ottawa?

4.  Dr Steve Green provided some very practical tips for managing aphasia.

5.  We all agreed that we needed more relevant and engaging stroke messages on aphasia and #strokerecovery generally.

6.  We have to find better long term advocacy, traditional support with more immediate and accessible online support, especially with the overstretched resources.

7.  We must explore more digital interventions in the form of new Apps like the range supplied by Lingraphica that allow for better intensive therapy.

8.  Treatments for aphasia include: Constraint Induced Therapy, The therapy technique – Promoting Aphasic Communication Effectiveness, Telemedicine or Telehealth, new and improved Apps and structural and neuroimaging processes which provides knowledge into the neural process.  Above all to promote aphasia treatments  that are –  restorative, strengthening, compensating, facilitating and educational.

9.  Tactus Therapy seem to be a good resource to check out!

We had a very enjoyable and productive tweetchat. Thank you. The next one is to be hosted by @StrokeTattler on the subject of ‘assistive technology to help people with their long term daily living needs’.  Don’t forget our clocks have gone an hour forward!

 

Thanks

@KateAllatt

Stroke survivor

@FightingStrokes founder/CEO 

Internationally published author – Running Free

 

 

 

 

 

Next tweetchat on #aphasia recovery as part of our #strokerecovery series at 8pm BST 12th May!!! #hcsmca

(Time zone converter).

Aphasia refers to difficulties in the ability to understand or express oneself through speech.

Language allows us to express our thoughts, desires, intentions, motivations, to ask questions, to give commands, to understand what people say, to read, to write, to listen & to speak.

When aphasia strikes a persons ability to use ordinary language is often difficult, and someone may not be able to communicate their daily activities or may feel isolated or may not be able to interact socially.

Some aphasic people may have receptive aphasia ie comprehension problems such as not knowing people are speaking to them, or realising if someone is angry or merely asking a question or understanding complete thoughts and individual words.

Other people have expressive aphasia where some people have difficulty forming complete sentences or leave simple words like ‘the’ or ‘is’ out or often say things that don’t resemble a sentence.

Famously, the critically acclaimed film, The Possibilities are Endless about singer  Edwyn Collins‘ recovery from a stroke, which resulted in aphasia – a communication disability which not many people know about. The website for their campaign is here:http://www.thepossibilities.co.uk/campaign/about.html.

The film producers are reaching out with a series of FREE art therapy workshops, with the first one being this Saturday 18th April at Hampstead Heath’s ‘Hive’ venue.  

So, for some even less famous than Edwyn, this is a huge residual difficulty following a stroke and explains why it will be our next #strokerecovery tweetchat at 8pm BST on 12th May 2015.

Our questions will be:

T1.What percentage of stroke patients have understanding & expression issues? Is it more common with bleed or blockage? Why?

T2. What are the evidence-based treatments for aphasia recovery?  How long is aphasia recovery typically? 

T3. What evidence-based treatments are available for expressive or receptive aphasia?

T4. Do patients get sufficient community support and therapy once they leave hospital. If not, why?

T5. What are the future developments or technology in aphasia recovery?

I hope to see you soon!! Don’t forget May is official stroke month!

 

NEW EBOOK! 

 

I Am Still The Same -Self help stroke recovery toolInternationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes Kate’s story in 2 minutes

 

 

Really emotional after #stroke? 8 tips for #strokerecovery

 

So you are banned from seeing your daughter act in a serious drama performance at school in case you laugh loudly or cry, when actually pre-stroke you would have simply just smiled or looked sad. 

  

Or you laugh at funerals or have extreme emotional reactions in the cinema. (Which are also incredibly embarrassing for your kids) and not least deeply distressing and frustrating for you. 

Apparantly, I have an odd gurning-type-expression when I try to hold back the floods of tears at, for example, the French singing/talking dog on Britain’s Got Talent recently. 

 

Sound familiar after #stroke? 

Changes in your emotions or behaviour can be caused by the physical damage to your brain or from the effects of coping with the trauma and its aftermath. 

These tips may help you deal with the emotional aspects of your #strokerecovery:

• Don’t feel guilty!  It’s not your fault.

• Talk to someone. I personally find making light of the situation helps me to cope with my friends and family so they understand.

• Get support! This may be online or in traditional support groups.

• Know when to ask for help. 

• Exercise. I walk my fabulous cocker poo and go the the gym every day, like an extension to the routine of brushing your teeth.

• Find time to relax. I’m addicted to Spotify, the Podcasts app and Netflix – House of Cards, Breaking Bad, Damages…. 

• Give yourself credit.  I know I have very high standards but reflect on all your achievements since your life changed after your stroke. Mistakes are normal and perfectly ok, you generally learn from them. 

• Tell people how you’d like them to treat you if you become emotional.The more people tell me to stop laughing or crying in appropriately I get worse! I think, after months of explaining to my family, they finally get that and back off from me. 

Perhaps this us useful?

NEW EBOOK! 

I Am Still The Same -Self help stroke recovery toolInternationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes Kate’s story in 2 minutes

12 tips to prevent caregiver burnout!

It’s hard caring for a loved one and can be very rewarding, but it has considerable stress. 

Juggling life as a sole carer, with a job, the kids, perhaps even ailing parents or an illness yourself is very very demanding.  So is it any wonder that family carers are some of the people most prone to burnout?

Perhaps you feel..?

• You are gaining or losing a lot of weight
• You are losing interest in activities you used to enjoy
• Overwhelmed or constantly worried
• You are abusing alcohol or drugs, including prescription medications
• Easily irritated or angry
• Sleepy
• Tired most of the time
• Sad
• You are having frequent headaches, bodily pain or other physical problems.

To help manage your caregiver stress you could;:

• Accept help. Eg let other people cook for you.
• Set realistic goals. remember you can’t eat an elephant in one go! It’s all about bite sized chunks!
  
• Get connected online or join a traditional support group.  Eg get support from others eg request to join our open Facebook group – fighting strokes or our closed group fighting strokes -the loved ones.
• Focus on what you are able to provide.  Don’t try to be perfect as you can only try your best.!
• Seek social support. Go out for coffee or dog walk or eat lunch with a friend or ride a bike, (like my husband)
• Set personal health goals.  Try to eat healthily, drink water and exercise regularly.
• See your doctor.

• Share your expectations with others.
• Be more assertive.
• Focus on positive relationships.
• Share your feelings.
• Listen to others.

Often you loved-one carers are the reason why most of us #strokesurvivors improve so well. 

You are vital in the #strokerecovery process and must never ever be underestimated.

I hope that helps 😊

NEW EBOOK! 

I Am Still The Same -Self help stroke recovery toolInternationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes Kate’s story in 2 minutes

RT? Don’t talk about me without me. Patient engagement Tweetchat 14th April 16.00

  

So we have a new NHS buzz term ‘patient engagement.Well, The Kings Fund says,

 

‘The role of the patient is no longer as a passive recipient of care. Nowadays doctors are expected to engage patients in their own health, care and treatment. There are also a number of initiatives to encourage patient involvement in the design, planning and delivery of health services.’

 

So let’s see what my own experience was in 2010, albeit before the new hype started, around the phrase ‘patient engagement.’

 

Well, I was very much a passive recipient of life-saving care in ICU, although I was mistakenly conscious. Sporadically, ‘my nice nurses’, would often make me aware of the vast array of medical procedures I had no choice but to endure.

‘Engagement’ was nigh-on none-existent at a time when I was wrongly considered semi-conscious (for two weeks after my stroke), though in reality I was fully conscious the after week from emerging from my medically induced coma!

I put it down to that either I became conscious far sooner than my Glasgow Coma Scale results implied or the results were  interpreted inaccurately.  It is fair to say that many of my nurses – and all my many consultants – were not remotely proficient or confident or willing to use of my rudimentary letter board and life enhancing life line at the time.

I still remember the heart stopping moment (literally) when my body reacted badly (and in rare cases) to the dried blood being cleaned off my new PEG by an over-zealous ICU sister.

I experienced a painful out-of-body-experience, that rendered that ‘said’ sister a quivering, emotional wreck at the foot of my bed.  I remember her being consoled by the other staff, whilst I lay physically paralysed and traumatised in fear and incredibly vulnerable and lonely as my life literally flashed before my eyes.

(My husband, who was visiting at the time, thought the ‘crash team alarm’ was for another patient and assumed his ‘visiting time’ delay was because I’d soiled my ‘nappy’.)

Why also didn’t anyone engage with me as to why my beloved Earl Grey tea was on and then off limits? If they’d said,

‘Kate, if we give you tea and 35 mls goes down the wrong way into your lungs, you will drown, end of.’ 

But no, they used technical medical terminology to a lay person saying,

‘Kate, you can’t have your tea because you will silently aspirate.’

What?

Did you know what ‘silent aspiration’ was before stroke?

I wondered whether my traumatic (and post traumatic stress disorder) could have been reduced if someone had explained to me, or my family, that I was likely to suffer with extremely vivid and distressing hallucinations.

Hallucinations that were like awake-nightmares and which were not real, although convinced me of their reality. I still remember a recurring one, where after my loved-ones left for the evening, a particular nurse – I hated – would slowly start poisoning me with a fatal brown, graphite drip.  You see, I couldn’t do anything so the way I saw it in my blinkered terrified world was that why on earth would I be worth keeping alive?

Now, I know there is no such thing as a graphite drip and the brown fluid, flushed down my cannula, was to treat my severe constipation at the time.

Fast forward to rehabilitation, and my therapists became very goal-centred, well after a few months anyway.  Up until then, they had just been giving me passive or ‘no hope’ therapy.  My later improvements were down to pure unadulterated anger, self-belief and bloody hard work (with the help of my therapists) Proudly, my favourite nurse Oliver recently said, ‘that I actually drove my therapists far harder than they ever drove me!’

I was a former 70 mile a week fell runner after all and as a deeply committed full-on mother to 9, 8 and 6 year olds.  I was suffering from severe separation anxiety that no one bothered to ask about.  I mean let us see, are there really any mothers out there that can imagine not being able to comfort your distraught kids in a crisis (when they’ve seen you lifeless and grey wheeled from home and into an ambulance), or hugging them like it’s the last ever hug before you die or even being able to say, ‘it’ll be alright,’ or just saying ‘I love you?’

My whole recovery was based upon being home as a participatory mother to my kids, end of.  My running obsession, if they bothered to ask me, gave me the work ethic/work rate and the drive to achieve my ambitious goals.

Instead, the medics tried actively dampen or lower my goals constantly. My goals at the time they were to ‘return home as a proper full-on mum’ and to ‘run again’.  Perhaps, they thought I was in denial?  Well, yes, they were damn right, but that didn’t mean I didn’t have real ambitious goals to chase at the same time!

There were times when my opinions could have been canvased and views painstakingly gathered, so I could have been engaged with them about my continence training, or why my bowel movements on the PEG, were so embarrassingly explosive etc.

I couldn’t speak, yes, but I could have been given explanations of my treatment plans and communicated my basic demands. I never knew how and when my physio or swallow exercises would eventually lead to a certain level of independence for me. 

Instead during therapy, I would often be treated to the gossip from the therapists (or nurses) about their exciting though ‘normal’ things they did over the weekend, or hearing who was recently pregnant on the ward or which consultants they despised and why.

I often wondered if my therapists would pick up on my non-verbal clues about my distress over my excessive saliva production – and inadequate saliva management. If they had, then they may have been able to anticipate my anxieties and understand when I hand to gesture withy eyes ‘time-out’ from my precious rehab session?

So I wonder, was there insufficient GP, therapist and consultant training on them being able to assess patients real views, values, capacity or their willingness to share?

Indeed , do the length of consultations prevent proper patient engagement?

Does the referral system in the UK reduce a patients’ treatment options and discussions?  Are there enough administrative monitoring systems in the NHS for thorough patient engagement in practice? What, if any, are the barriers preventing therapists engaging properly with patients? Furthermore, how well do we evaluate improved (or not) patient outcomes after a patient engagement process?

I’m interested in your answers therefore, our next Tweetchat questions on 14^th April at 16.00 will be on:

T1. Do you think stroke patients, or their carers, want to be engaged in managing their own health?

 

T2. What may discourage patients or their carers, being engaged?

 

T3. What skills or resources do patients or their carers need to have to be engaged in their health? Are those resources accessible?

 

T4. What barriers prevent therapists engaging with patients?

 

T5. How do we evaluate how well outcomes improve after engagement?

 

 

I do feel very strongly that proper patient engagement can and should, improve patient outcomes, but I do fear this new NHS buzz term will be nothing more than a feel good exercise.

P.S I did return to my kids and I did run  again! 

  

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

‘Would you like a cheese sandwich?’ #strokerecovery

Now be honest, are you so busy with juggling the balls of your own life – work, kids, partner, home, family etc – to be able or willing to care about for the needy and vulnerable people on our society?

 

Truthfully, this was perhaps a bit more like me pre-2010 – although I did a few charitable fundraising challenges and donated my skills to a local charity, before my own D-Day!

 

It may be the case that you care but struggle cope with others vulnerabilities, fragilities or mental health issues, so you steer a course away from the ‘said’ damaged individual?

 

Perhaps, you are selfish narcissist and are solely focussed in pursuing your own personal fortune and agenda? Sadly, there are quite a lot of people like that in the world.

 

Maybe, a your friend or relative who actually kindly visits you, but then is only able to offer patronising ‘sympathy’ or asks, ‘would you like a cheese sandwich?’

 

If you are lucky, a friend or relative will offer true ’empathy’. You know when a caring friend says, ‘I have absolutely no idea how you must be feeling right now, but I’m here to listen and support you, if YOU want.’

 

But better still, is where someone offers you ‘altruism’.

So what is altruism you ask?

Well it was put perfectly by Matthieu Ricard in a recent TED talk. He said,

‘The wish for others to be happy and to help them find the cause of their happiness.’

 Helping others find a way to cope positively benefits not only the ‘recipient’ but will make the ‘giver’ equally as happy.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

When stroke recovery doesn’t happen.

I’ve long been associated with the notion that stroke recovery is always possible, whether those improvements are small or large positive changes.

However, I have to admit that since meeting Kati Van De Hoeven in beautiful Finland last weekend, I’ve met someone who sadly hasn’t made very much physical improvement in twenty years, after her brainstem stroke and locked in syndrome diagnosis. Whilst she eats, writes books and blogs, plans meals, enjoys retail therapy – if it involves boots and bags – moves her head and eyes very effectively, but she is unable to do much else.

Kati is now forty years old and yes, she suffered her illness at the shockingly young age of nineteen and a half, in her prime and as a successful model living in LA. It would be fair to say that she looked like a brunette version of Cindy Crawford! 



Her phenomenal blog can be read here. Kati has been my second heroine (my first being Ms Christine Waddell) since I came across her blog on Facebook early last year.  Her unique approach to life inspires me and quite frankly stops me immediately if I ever start to go down a self-pitying track about everything I’ve personally lost since 18.09 on 7th February 2010.  You really are either a glass half full or half empty kind of person and I’m definitely, and mostly, the former!

As I approached her wheelchair, I was stunned by her natural beauty, impeccable dress sense, sublime makeup, beautifully coiffed blond hair and not to mention her fabulous knee-length, tanned, suede boots! (A girl after my own heart in far more ways than one!)  I quickly realised that Kati shares not only my annoying emotional lability, but a smutty sense of humour, obsessive traits, scary determination, stubbornness and sense of informality. Yeah, I was the ugly sister who was perhaps separated at birth!

Her husband Henning, yes husband, who she met only 4 years ago cleverly and tenderly stands by to interpreted her eye movements, on what was an invisible e-tran board. You see, they have honed their communication system between them so well, that Henning doesn’t even need to use the physical transparent communication tool at all now.  Now that’s impressive! Kati shows in no uncertain terms that a long term Locked In Syndrome diagnosis does not necessarily equal a poor quality of life or none existent emotional well being.

I was there with a documentary film crew to ask her questions about her former, exciting life, her illness twenty years ago, how her and her parents each coped and perhaps learned to accept and let-go of their anger, her  relationships with friends, how she met her loving husband, her Christmassy wedding day, what her hopes for the future are and of course what the unique Finnish word – SISU – means to her.

If you are not familiar with the word SISU, all I can say is that Kati epitomises it perfectly!

According to Wikipedia SISU is:

‘Sisu is a Finnish word generally meaning stoic determination, bravery, resilience,^[1][2] perseverance and hardiness,^[3][4] expressing the historic self-identified Finnish national character. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management. The pertaining adjective is sisukas, “having the quality of Sisu“‘.

Kati is all these things and far more. She and Henning are quite simply incredible human-beings who deliberately choose a life of altruism and optimism because frankly, it feels better. That doesn’t mean they don’t have tough times now, because sadly there is seemingly no end to shit times for some unlucky people.

During our visit, I couldn’t get out of my mind, something that I found so incredibly moving, when I spoke to Kati’s dutiful and loving mum. She said,

‘Now, I can die.’

She said this after observing her daughter so happily married with her son-in-law, Henning, something, I’m sure, she could never have imagined, years earlier.  As a mother myself (and it was Mothers Day yesterday), I  found this thought deeply distressing.

You are probably thinking what they do together?  Well, they sum up true, basic happiness which I found both incredibly moving and humbling.

A happiness where you don’t need expensive objects, tablets or phones or ambitious aspirations, flamboyant holidays and houses, or that perfect job, just simple, old fashioned unconditional love.

They share a marital bed, they write their books and popular blogs during the bleak winter months, they share the joy of having their dog ‘Happy’, they listen to the radio, take romantic walks as Henning pushes her wheelchair during the milder spring and summer months, they take short breaks (they are shortly off to Latvia), they listen to Caribbean music and Henning often prepares and cooks Kati’s countless recipes! (She loves cooking.)

Our Finnish hosts were amazingly kind and generous and our young filmmakers certainly enjoyed their generous, home-cooked meal and dessert! Not something they are used to as recent Graduates!

As we prepared to leave their relaxing, welcoming home to take the two hour journey back to our hotel, I couldn’t help thinking that sadly beautiful Kati hadn’t made very much physical stroke progress in twenty years. Although I do wonder whether she would have made more physical progress in 2015 as opposed to 1995? Especially with advances in stroke rehabilitation therapy, research and treatment plans?

However, what is true is that her stroke recovery has not just been about her trying to overcome her enormous and catastrophic physical difficulties, but her only-to-be-expected psychological and emotional issues that followed.

We must never lose sight of the emotional (and cognitive) difficulties relating to stroke – from the apathy, the depression, the isolation, the post traumatic stress disorder, the withdrawal, the low-confidence and low self-esteem, etc.

Kati has journeyed through her loss cycle – from the denial, to anger, to depression and to acceptance – and unbelievably found her current happy, truly inspirational state just 3 years after her life changed beyond belief.  It would be some considerable years after that, when she would meet her soul mate, best friend and true love of her life, Henning.

As far as I’m concerned, that is actually an incredible stroke recovery!

We are looking for distributors for our ‘Locked-In Forever?’ documentary if you are interested, please email me.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

Technology & #strokerecovery tweetchat – your views!

What an amazing tweetchat! Our engagement with you doubled from last month, we all wrote 559 tweets, had 50 participants, received 726,202 impressions, with key influencers were @fightingstrokes, @stroketattler, @dailycaring & @sissstroke.  No wonder my fingers were on fire!  Thank you v much, it was fun and informative.  We were absolutely delighted to receive a tweet from the @natlstrokeassoc (see below)   So here’s what I gleaned from our #strokerecovery & technology tweetchat tonight but feel free to study the symplur #strokerecovery transcript if you like. We asked you:T1. What technology do you use/offer in #strokerecovery therapy? You said:

• Electrical stimulation albeit it was offered tom slowly in the community at 11 months
• Scheduling apps to coordinate family visits
• Apps to help with aphasia and alarms to take medication
• Wii gaming technology for rehabilitation which also involved your children, though it doesn’t work for everyone.
• Blogging in itself helped keep the brain active and was used in #strokerecovery
• @natlstrokeassoc – ‘Wii, Constraint Therapy, Bioness, WalkAid, Mobile apps for aphasia, Myopro, sling supported treadmills.

T2. Is there some technology that you would use? Is it just about cost?

• The IREX system ie, uses immersive video gesture control technology to place patients into virtual sport or gaming environmentshttp://www.gesturetekhealth.com/products-rehab-irex.php
• Transcranial electromagnetic stimulation for aphasia
• Electrical stimulation products
• We would use basic products which would be the basis for more complex based activities

T3. What the main barriers to treating stroke patients?

• A lack of knowledge of available products
• Costs/funding perhaps leasing arrangements is one solution?
• Lack of SALT therapist time.
• Mood, time, mood, depression, fatigue, therapy time, muscle tightening and available technology
• Insurance Companies not applying the ICF model. Ie, The ICF classification system focuses on human functioning and provides a unified, standard language and framework that captures how people with a health condition function in their daily life rather than focusing on their diagnosis or the presence or absence of disease.
• Huge lack of technology-based research for aphasia and cognition.
• Lack of evidence-based research for cognitive rehabilitation.
• We don’t share information enough with patients & families at home.
• Families are overworked with assisting with daily living activities. (Teasell)
• Families are crucial and there is again a lack of clinical evidence.
• Clinicians and academics must work better together. Things get lost in translation.
• Patient input is vital at every stage.

  T4. Can we overcome those technological intervention barriers? Is it not just cost?  

• Yes cost and funding are issues, need lease agreements and insurance company education?
• Computer-based or web-based therapies to help aphasic patients.
• Overcome fatigue with early diagnosis, pharma drugs, psychological counselling CBT talking therapy, physical exercise.

  I’m certainly going to find out more about the CogWatch product which helps with daily living activities. This is CogWatch is a European Commission funded research project whose aim is to enhance the rehabilitation of stroke patients, a third of whom will experience long term physiological and/or cognitive disabilities. A significant proportion of these patients can suffer from Apraxia or Action Disorganisation Syndrome (AADS) which, among other symptoms, is demonstrated by the impairment of cognitive abilities to carry out activities of daily living (ADL).   We failed on tweeting ideas based on finding out about evidence-based technology and I think we should share this in a tweetchat in the future.  I’m going to sign off and feed my hungry kids now but I’ll leave you with this poignant tweet I received that,   ‘People want to feel ‘normal’ & to do things for themselves.’

Climbing that wall – Stroke survivor CLARE! Never say NO!

I have to share with you the most amazing story of grit, determination and desire to feel ‘normal’ again. Hats off Clare. In fact I wrote this response to their blog (below) on Facebook.

”

This is THE MOST AMAZING ACHIEVEMENT!!! WELL IMPRESSED!

What fabulous support too!

 

You know what resonated with me was the line in the blog:

 

‘Real freedom to move. Freedom from the wheelchair.’

 

My best mate said to me one day, ‘if you could walk or talk in life, what would you choose?’

 

My answer: to walk. Whilst my wheelchair was o important and useful to me in hospital and beyond it represented something I despised.  Just my truth.

 

‘Christmas portions … a lavish triple helping of blog coming up, to catch up. Next entry will have the exciting (and chalky) start to 2015.

Mid-November’s climb at the Foundry is at the shapely dalmations. Hazel is up high when we arrive, climbing a non-dalmation (trickier) class of holds.

A quick news catch up … the 3 new wheelchair climbers have visited the Foundry twice, success!

And Lasse is doing OK after his bike stunts with Robin, though he’s had his broken collar bone operated on in Germany, and it turns out his shoulder blade is fractured too.

Nick hints at new equipment later, but Clare gets started with a climb on the holds.

She is stretching up really well. But she is leaning back a lot – tiring for her neck.

Harness adjustment for the 2nd climb, to help with the leaning back. Also a rope swap. I ask for help in matching up the various names for ropes. Ahh right! Got it sorted now: ‘safety rope’ means ‘belaying’, and ‘pulley rope’ is the one with the 2:1 gearing for extra assistance. Robin now takes pulley rope, while Hazel and a sandbag take safety rope for Nick, and Helen continues on safety rope for Clare.

Clare gets higher this time, with better body position … also some nice foot pushes, and more oomph from the ropes.

Now, says Nick, time for the new thing. He fetches The Foundry’s Karl who attaches a ‘bolt line’ at the bottom of the wall. Nick climbs up to run a static rope from top to bottom. The jumar attaches to the line with a nifty loop, whose name I struggle to remember.

It’s an eye-opener to see this much improvement since Clare last used a jumar. Climbing has developed arm lifting power and it seems gripping power has leapt forward too. I marvel at Clare’s knuckles showing white – she really is gripping! No more need for the the cycling gloves, evostik and velcro (but that technique is ‘in the bag’ for others to make use of).

Firm pulls from Robin & Helen. Clare looks ninja-like from the back.

It’s hard to see Clare’s face, and I can’t tell if she is still pulling hard. Nick is still talking to her though. Her arms stay raised and she keeps gripping the bar … focused on reaching the top …

She’s there! Yoooooo!!! “High five!”

Back down and we’re all smiling and saying how well Clare did. Clare herself needs encouragement to smile. But she says that it’s surprising how she has improved on the jumar. “And no vent too”, Nick adds.

(Gotta look back now, enjoy again the thrilling first time that Clare ‘Topped out!’)

Clare looks proud and strong in the team pic.

It’s going to be an afternoon in bed. But first coffees & cake. Clare is keen on this: “Which cake is the most chocolatey?” 🙂

A week later Clare climbs in the early evening. We’re in the Furnace – definitely not a hot Furnace, and Robin’s bare knees look decidedly dusky.

“How are you today?” Nicks asks Clare as we arrive. “Very well, how are you?” replies Clare, chirpily though quietly. She’s been very healthy recently, but yesterday’s inaccurately swallowed cake mixture might be why her voice is faint today.

Hazel is at Laserquest with friends, so I wear a harness and take the pulley rope. Robin climbs with Clare, and Nick & Helen are belaying. Carer Ade takes my iPhone and captures the ‘getting on wall’ start to the climb.
Placing hands very well.

Using feet too – left foot at any rate, supported by Robin’s foot.

It’s hard to stick to the wall here because of the slight overhang. Robin pulls both of them inwards as required. Clare floats out several times but looks perfectly happy about it. (Hoisting between bed & chair involves dangling and she’s never found this stressful, maybe due to Saturday morning trapeze back in 2011.)

Clare gets surprisingly high before she has had enough.

Abseil to chair. Clare looks happy and strong but end of trache is exposed – speaking valve has mysteriously disappeared. We manage to find it in Clare’s clothing.

Rest time chat: Clare and Robin have post-16 decisions to make. Robin is thinking King Edwards – best for outdoor activities 🙂 Clare isn’t sure, but will stick with Forge Valley, dependent on grades.

Now for climb two. Nick says we shouldn’t say anything to Clare about placing her hands and feet – up to her to plan her route. It’s really hard not to make suggestions, oops.

Clare sets off determinedly. The rest of us mostly manage to stick to “nice one!” and “yep!” though Nick and Robin blab once each, and get laughed at.

Robin uses momentum to keep Clare on the wall, and Clare finds herself holds. Looking good!

Great climb! But strangely the speaking valve has fallen off unnoticed again, and this time we can’t find it anywhere. Time for the Swedish Nose – handy to keep the trache covered, though not good for audibility.

For the 3rd climb, we’re going to use the static line and jumar again. Another chance to find out what that loop is called: apparently it’s a “maillon”, which is a French word and is pronounced “my on”.

Nick is thinking of something linked to the jumar to involve Clare’s legs. That’s for a future session maybe. Meantime Clare still manages to lift her feet quite a bit, even while pulling with her arms.

We’re laughing afterwards, Clare as well. Some of Clare’s hair has been pulled off in the ropes, the speaking valve is lost, and there’s a scratch on Clare’s forehead. Heh heh, good session!

And now, it’s right before Xmas. And even chillier. Robin and Nick are wearing hats. Robin isn’t 100% – he looks paler, has a cold/cough, and had a day off school in the week. He’s still doing his paper round and outdoor stuff though. Hazel has been off school too – for the first time ever.

Nick had thought Slab, but said it was even colder over there. A small electric bar heater way overhead is heating up the doorway end of the cavern, but not by much. Nick points at some nicely grabbable red holds. So are we going to give Clare hints or not? Who knows. Let’s see.

Nick is showing us an extra line joined onto the pulley rope with a steel karabiner. It was inspired by the other 3 wheelchair users (they’re still climbing weekly, hurray!) and its purpose is to remove a finger entrapment risk. Its use has been discussed and approved by Foundry manager, Neil: it adds one more complication to the gear, not usually a good thing, but it reduces stuff in front of the climber’s face. We try to think of a name for the new device, having already come up with “Whittaker” for a jumar with straps. Perhaps it’s a “Whittaker single strand”.

Clare sets off strongly.

She is pulling hard.

She’s finding footholds. It’s amazing: her leg lifts right up. She’s recently restarted lifting her knees up to her chin again – she always used to sit at the table to eat with her knees under her chin.

She is looking down to see where her feet can find holds, and working hard to get them there. Even managing to do it without help sometimes.

During the climb I’m saying “wow, look at that!”

At the end of the climb, Nick says “quantum leap”. It was a “step change”.

“Did you enjoy it?!” he asks Clare. “It was great”, says Clare, emphatically. “It was liberating.”

Real freedom to move. Freedom from the wheelchair.

Long chatty rest. Just before the Xmas break it’s the Mock GCSE season. Clare spent the whole of Tuesday (given extra time) on her English Mock, and both Clare & Robin have Geog Mocks next week. Nick is about to apply for Ultra Trail du Mont Blanc: there is a 1 in 5 chance of getting a place. He’s entered an ultra marathon race near Grenoble too.

Helen is off to Norfolk for the Christmas hols. She has completed 1 year at Hilltop School and has brought along cake to celebrate. “Lots of icing for Clare!” says Helen.

The Whittakers are off to Berlin for a few days, to stay with Lasse’s family. Nick reckons he might write an article for Summit during the journey – Clare is happy to get a mention. As for me, I’m going to promote the blog so other stroke recoverers can find it. (Eight followers is not very many, and apparently this number includes Nick’s mum (hello!) as well as Clare herself.)

The second climb isn’t so high, but still a great effort. Clare does some high leg lifts but it looks hard to get her arms raised and down below we’re asking if Clare is tired. She comes down. Phew!

Group photo “Ho, ho, ho!”

We’re all waiting to try Helen’s cake. Wow – white choc & orange, with the most fabulous icing I’ve ever tasted. It’s a sumptuous end to a year’s climbing. What a journey this year has been. Climbing has become part of Clare’s life and this makes her very happy.’ https://wanttoclimb.wordpress.com/

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