#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.

 

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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

 

 

 

 

 

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 14th 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




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.

th68N3ZQ1V  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.’Banksy-What-Next

The Brazilian World Cup inspired our next #strokerecovery & technology Tweetchat! Spread the word & RT!

If you cast your mind back to the Brazillian World Cup, what would be your abiding memory?

 

The now infamous (and vicious) Suarez bite, the best player of the tournament – Thomas Muller (perhaps?), the winning team (Germany-  if you’ve forgotten)- or the off-the-pitch news stories of widespread brothels (or zonas), the cheap and seemingly widespread child prostitution, the spotlight on the world’s biggest crack market, the new (but un-shocking) FIFA corruption allegations, the carnival atmosphere, or other?

 

For me, it was actually none of the above.

Instead, it was the powerful image of a paraplegic walking in a brain controlled exoskeleton during the opening ceremony!

This huge advancement in technology also reminds me of the paralysed man who was able to walk again after pioneering therapy that involved transplanting cells from his nasal cavity into his spinal cord. His name is Darek Fidyka. You can remind yourself by watching his video here.

These developments offer massive REAL hope for paraplegic, locked in syndrome and other stroke survivors to actually walk again. If only Christopher Reeve had seen his visionary dream become a reality. I guess it would almost be like, Robocop meeting Superman!

th3X93NG3Pth7L7V71WB

 

To walk again and be able to give a fellow human eye to eye contact, to be treated as an equal, is a fundamental need. As are these hugely important (and dignity enhancing) daily living activities – communication, eating, washing, continence and toileting, dressing, grooming and having decisions made about you with you. Technology in #strokerecovery helps us to communicate, eat, drink, dress, wash, go to the toilet, shop, manage our medications, improve, improve our cognition, psychological issues and allows us to easily share and support other stroke survivors, amongst other things.

 

There are so many technological advances combining gaming (a great way to engage with younger children incidentally) and virtual reality technologies to be used as part of our individualised, self-management stroke recovery programme.

 

It’s worth bearing in mind that the word ‘technology’ can arouse thoughts of high-tech (and expensive) technological gizmos, but according to Wikipedia:

 

‘Technology  is making, modification, usage, and knowledge of tools, machines, techniques, crafts, systems, and methods of organization, to solve a problem, improve an existing solution to a problem, achieve a goal, or perform a specific function.

 

Technology affects our ability to control and adapt to our natural environment.’

 

Therefore, our next Tweetchat blog will be about #strokerecovery and technology at 5pm GMT on 10the March 2015.

 

If you want to prepare your responses our proposed Tweetchat questions will be.

 

T1. What technology do you use/offer in #strokerecovery therapy?

 

T2. Is there some technology you would use but don’t? Is it just about cost? #strokerecovery

 

T3. What are the main barriers to treating #strokerecovery survivors with technology?

 

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

 

T5. How do you find out about evidence-based #strokerecovery technology?

 

 

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

#Strokerecovery self-management tweetchat – what you said! #stroke

This month our co-hosts @Stroketattler coordinated our second  successful, interactive (and fun) Tweetchat event on self-management.

We warmly thank our global supporters, posters and ‘lurkers’ (who we hope may get involved by interacting next time!)

I thought it might be helpful if you had a short summary of the key themes that seemed to emerge from our conversation according to our Symplur transcript?

So we asked …

T1. What do you think of self-management after stroke?

And you said,

‘As a wife we need to look at stroke self-management ecologically. Onus cannot be only on the survivor.’

‘SM (self management) huge priority but we need a culture change towards enablement and flexibility to support implantation in practice.’

‘It is equally important for both health professions and survivors to understand the importance of self-management in recovery.’

‘Self management is relevant. Likely why some survivors do very well/others deteriorate after discharge.’

‘Those with SM skills do well, those without social networks, SES, Education have difficulty self managing.’

‘Is this to do with widespread and early clinical pessimism after stroke & use of word ‘plateau’?

‘The word plateau is a self-fulfilling prophecy isn’t it?’

 

T2. How relevant is self-management after stroke? Do you think stroke survivors can manage stroke by themselves?  T3. What preparation and support do stroke survivors need?

‘I think engagement with FRIENDS not just family, who may know patient better.’

‘We can all learn and share from each other.’

‘We need motivated family and friends and the programme individualised.’

‘It is equally important for both health professionals and survivors to understand the importance of self-management.’

‘I like the phrase #guideddiscovery to describe the power of #peersupport amd #selfmanagement and #strokerecovery.’

‘We need a strengths-based approach to stroke recovery.’

‘We need strenths-based approach, mentoring and teaching stroke survivors and partners to mentor.’

 

T4. What are the barriers to self –management after stroke?

‘…The knowledge of health and community systems – navigation #strokerecovery.’

‘…Another barrier is lack of confidence or self-esteem.’

‘We need to do a psychological, cognitive and emotional assessment before developing self-management programme.’

‘Current problem is silos between Health and community (social care UK)’

‘ Lack of awareness, physical symptoms, transportation issues, and cost, lack of insurance benefits.’

‘Early discharge from hospital – less opportunity to mobilize and get SM knowledge.’

‘Emotional – anxiety/depression, relationship, environmental, ethnicity barriers.’

‘Time required for acceptance and adjusting to new life circumstances as well as #strokerecovery.’

‘Our challenge is sharing our learning and having collective voice – but we can overcome this.’

 

I very informative hour was spent by all.  We hope the larger stroke charities will learn and join in on future Tweetchats and our views start to INFLUENCE #strokerecovery.

 

POWER TO US!

 

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

Help for non-profits – A real social media strategy

We’ve been very active on social media with our registered charity, Fighting Strokes – Fighting Strokes, @Fightingstrokes, Youtube and Instagram – which has resulted in raising awareness, engagement, followers and #strokerecovery interaction online.  So being the sharing type, I thought I’d  impart my knowledge of a health care social media ‘charity’ marketing.

1. Identified our audience:

Fighting Strokes is attempting to inspire, empower and influence all types of stroke survivors, their friends and family, clinicians, researchers and therapists. We have an interest in promoting stroke recovery issues which affect younger #strokesurvivors and acute brainstem stroke with locked in syndrome survivors. With so many voices banging the drum about #stroke prevention and our experience,  we instead choose to try to practically speak up about issues in stroke recovery.

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2.  Identifies and set up the social media platforms

These included: Fighting Strokes, @Fightingstrokes, Youtube and Instagram

 

3. Then, we decided what we wanted to achieve in social media!

We wanted to raise awareness of the #stroke treatment and stroke self-management options and to grow our Twitter followers & Facebook likes by 15 per week.

 4. We agreed our budget

£0,000’s!

5. We decided how much TIME to commit to SM

We tried scheduling our tweets to reach more followers, to drive traffic to our blogs – Stroke Recovery Tips & Arockystrokerecovery – to reach new followers and make more efficient use of our time, but we couldn’t get on with Buffer (other ones include Tweroid, SocialOomph, Hootesuite, Tweetdeck).

6. Informative, informal content – are us!?

We decided that dynamic, informative and interactive content would distinguish us from other stroke charities. There would be a place for humour if appropriate also.

7. We look at what key opinion leaders in healthcare are doing

We look at other organisations we respect to see what they are doing well, not doing well and how they interact with their followers and established a hashtag on symplur.

8. Set up a Symplur Hastag

We established the #strokerecovery hashtag and use monthly tweetchats to grow our audience with @StrokeTattler. We plan to establish webinars later this year too.

9. Monitoring social media  

We use Tweetchat and symplur although Sumall is another type of monitoring app.

9. Google Analytics measures our activity

There are many ways to measure activity but we found Google Analytics as the best free software to use. Some measuring apps track the number of follower you attract, retain and what people are saying about our charity too. Other free sites include addictmatic, google alerts, hootsuite and howsociable

10. Mobile phone friendly

We plan to create a mobile friendly website and build an ‘opt-in’ subscriber list.

11. Headline: ‘What did Churchill and Thatcher have in common?’

We know people prefer to look at impactful pictures and short videos so we try to incorporate into our posts with links. We also try to use engaging headlines. eg

Clinical patient dignity is not equal to real patient dignity, trust me!

12. Shorten links

We try to shorten our links to make it easier to refer to on Instagram and to write more on Twitter. We use bitly.com.

13. Cross link with Instagram, linkedin and Facebook

It makes a lot of sense to use the same posts across different platforms using software like Hootsuite, Tweetdeck and Seesmic.

14. SM profiles

We try to maximise our word count in our profiles with specific description, hashtags, links and pictures. We always try to play with our profiles and update pictures reasonably regularly.

15. Real time posts

We only post in real time and have started trying to ‘pin’ tweets. Twitter  allows you to pin one tweet at the top of your timeline. You can use this to make sure your important messages are seen or if you want a specific tweet to get more retweets.

 

So, I hope my social media strategy summary is useful and helps you to drive followers, traffic, engagement and interaction to your non-profit organisation too!

 

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

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Self management and #strokerecovery tweetchat 10th Feb 5pm GMT

This months’ tweetchat should be very interactive judging by the global interest so far!

We are discussing these 4 central themes with our hashtag #strokerecovery

T1: What do you think about self-management after stroke?

T2: How relevant is self-management after stroke? Do you think that stroke survivors can manage stroke by themselves?

T3: What preparation and support do survivors need if they are to self-manage stroke?

T4: What are the barriers to self-management after stroke?

See you there! 5pm GMT 10.2.15!

#strokerecovery tweetchats 4pm London Time 13th January 2015 – Here’s why……..

Stroke is global healthcare problem. In developed countries, it is the third or fourth most common cause of death.  However as 80% or more people now survive the initial stroke, the largest effect of stroke is through the long-term residual difficulties, daily living activity limitations and reduced social participation/interactivity.  Stroke is the main cause of adult disability.  Physical and emotional  impairments from stroke affect the whole family, not just the person with stroke.

Most stroke survivors and their families want get on with the rest of their lives after stroke —in other words their goal is #strokerecovery. This doesn’t not mean the stroke survivor or family will fully recover like they were pre-stroke. Rather, our #strokerecovery tweetchat aims to practically advise, help and inspire people to make progress in the daily living activities, socially and professionally.   This includes motor, communicative, cognitive and emotional recovery. In other words, it is possible for  stroke survivors and their families can live satisfying lives with impairments.

What is #strokerecovery ?

#strokerecovery is a vibrant community of people interested in exploring stroke recovery in for themselves and in stroke recovery. Sharing, learning & improving from each other.

Our first chat is held on 13th January 2015 at 4pm London time.

Why #strokerecovery ?

Fighting Strokes is a global patient advocate charity which was founded primarily to help inspire and support anyone affected by stroke. We try to help people make progress improvement both physically and emotionally. We also have a special interest in inspiring families and patients affected by brainstem stroke and diagnosed with locked in syndrome to improve.  See here Fighting Strokes.

Who takes part in #strokerecovery ?

Anyone and everyone delivering and receiving health care who is interested in open conversation to help improve quality, access, value and effectiveness of stroke recovery. This includes: patients, caregivers, patient advocates, healthcare professionals, not-for-profit health organisations, educators, heath content providers, health institutions, health administrators, health systems and networks, government and health policy makers.

Join us.

How to take part in #strokerecovery tweet chats.

  1. Get a Twitter account!!
  2. Go to twubs.com or tweetchat.com.
  3. Enter the #strokerecovery in the box that says “Enter a hashtag” and press Enter.
  4. Sign in to participate in the chat. (note the hashtag #strokerecovery will automatically be added to your tweets.
  5. Review this week’s topics.
  6. Be online at 4 pm London time on the 13th of each month.
  7. Chat!

Our next tweet chat will discuss:

T2: What the strengths are in our current #strokerecovery systems?

T3: What are the weaknesses in the current #strokerecovery systems?

T4: What should we concentrate on in the initial Tweetchats? 

Tweet Chat Etiquette

  1. At the beginning of the Tweetchat or when you join, briefly introduce yourself.
  2. Please use #strokerecovery in your tweet.
  3. The Tweetchat will be for active for 1 hour, but you can add to the Tweetchat transcript by including #strokerecovery in your posts between chats.
  4. The moderator will introduce the questions. Please respond to the current questions.
  5. You can respond and add to others posts by replying or favouring.
  6. Be kind to others and have fun.
  7. Suggest future tweet chats if you like ?

We are including several academic papers for your information. They include evidence based reviews on motor, communication, and cognitive recovery and Aura Kagan and colleagues (2008) framework for “Counting what Counts” in #strokerecovery.

Motor recovery

Peter Langhorne, Fiona Coupar, and  Alex Pollock (2009)  separated motor recovery into three areas:

  1. Upper-limb movement and function/arm and hand function;
  2. Lower-limb movement and function /Walking ability
  3. Balance
  4. Mobility (which combines upper-limb function, lower-limb function, and balance to enable normal movements) also been defined as
    1. ‘activity of moving from place to place, generally by walking or using a wheelchair’ (Busman & Stam, 1998)’
    2. ‘an individual’s ability to move about effectively in his surroundings’ (The WHO International Classification of Functioning, Disability and Health, 2001); or
    3. ‘Stroke- mobility’ –‘Out-of bed physical activity, which may include transferring on or off the toilet, sitting out of bed, standing and walking’ (Bernardt et al., 2009).

Communication recovery

Koenig-Bruhin and colleagues (2013) note that this is mainly referred to as aphasia recovery (language), but includes many different functions, such as verbal communication and activities involving daily life and self-organisation.

The vast majority of aphasia patients have the potential to recover, if they do not suffer from dementia. In the acute phase, different types of therapy have their merits, including group therapies or treatment involving families, but they:

  • must be adapted to the type of aphasia;
  • must be adapted to the patient; and
  • often require a minimum of intensity (between three sessions per week and once a day during the acute phase) and of duration (at least three months).

Focused interventions in the chronic phase have also demonstrated their effectiveness.

Cognitive recovery

Many survivors of stroke complain about cognitive impairments, such as attentional impairments, diminished concentration, memory loss, and mental slowness (brain fog) yet Loetscher & Lincoln’s (2013) review of cognitive rehabilitation concluded that effectiveness of cognitive rehabilitation remains unconfirmed.

Emotional recovery

‘If the part of your brain that normally controls your emotions becomes damaged by a stroke, the result can be a change in how you think, feel or behave. Don’t be surprised if you feel anxious, depressed, frustrated, angry or bewildered. Emotions tend be depression, anxiety, emotionalism, personality changes and anger.’ The Stroke Association. We can try to help our emotional #strokerecovery by:

  • Letting go of rejection
  • Avoid ruminating
  • Turn failure into something positive
  • Avoid letting guilt linger
  • Using positive affirmations to counter low self esteem *

Counting what Counts

Focus groups with a range of stakeholders including health professionals, stroke survivors, and their families highlighted the need to focus on real-life outcomes. They indicated that existing classifications and models were not necessarily accessible and/or user friendly for clinicians, researchers, policy makers, funders, and those living with aphasia.

Tweet Chat Timezones:

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Location Local time Time zone UTC offset
Edmonton (Canada – Alberta) Tuesday, January 13, 2015 at 9 :00:00 AM MST UTC-7 hours
London (United Kingdom – England) Tuesday, January 13, 2015 at 4 :00:00 PM GMT UTC
Perth (Australia – Western Australia) Tuesday, January 13, 2015 at 12 :00:00 am AWST UTC+8 hours
Corresponding UTC (GMT) Tuesday, January 13, 2015 at 16:00:00

Check World Clock for the corresponding times for your location: http://www.timeanddate.com/worldclock/

By @kateallatt

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

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

References

Bussmann JB, Stam HJ. Techniques for measurement and assessment of mobility in rehabilitation: a theoretical approach. Clin Rehabil 1998;12:455–64.

Bernhardt J, Thuy MNT, Collier JM, Legg LA. Very early versus delayed mobilisation after stroke. Cochrane Db Syst Rev 2009, Issue 1. Art. No.: CD006187. DOI: 10.1002/14651858.CD006187.pub2

Kagan, A.Simmons-Mackie, N.Rowland, A., (…),Threats, T.Sharp, S. Counting what counts: A framework for capturing real-life outcomes of aphasia intervention  Aphasiology 2008; 22(3): 244-53

Koenig-Bruhin, M.  Kolonko, B.At, A.Annoni, J.-M.Hunziker, E.   Aphasia following a stroke: Recovery and recommendations for rehabilitation  (Review) Schweizer Archiv fur Neurologie und Psychiatrie 2013; 164(8):292-298

Loetscher, T.Lincoln, N.B.   Cognitive rehabilitation for attention deficits following stroke.  (Review) The Cochrane database of systematic reviews 2013; 5: CD002842

* http://articles.mercola.com/sites/articles/archive/2013/08/15/emotional-pain-recovery-tips.aspx – As the featured article reported, Guy Winch, author of Emotional First Aid: Practical Strategies for Treating Failure, Rejection, Guilt and Other Everyday Psychological Injuries, recently shared five tips for healing your emotional pain.