#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

 

 

 

 

 

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!

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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

So how do I get INVOLVED with the 2nd tweetchat @Fightingstrokes @Stroketattler ?

 

  1. Have a think about what #strokerecovery means to you.
  2. Then click on http://www.tweetchat.com
  3. Enter the hashtag #strokerecovery and click GO
  4. Click Authorise Tweetchat – after inputting your @Twitter handle & password
  5. Then start by saying ‘Hi at5pm GMT on 10th February & tweet if you are a #stroke patient, carer, clinician, doctor, charity or researcher. But REMEMBER to always include the all-important hashtag #strokerecovery on all tweets!
  6. We will try to respond to your questions or comments sequential especially if you write which tweet you are responding to eg T1, T2 or T3 etc, hopefully our #strokerecovery community can not only be better informed but crucially influence #strokerecovery for others.
  7. Towards the end of our hour long Tweetchat, we will call for your ideas on future #strokerecovery topics to discuss, share and influence.
  8. We will also ask for any recommendations of key guest bloggers to invite at the end of our 2nd Tweetchat on 10 th February 2015 at 5pm GMT.
  9. Finally, we will tell you when our next Tweetchat will be.
  10. Enjoy we are so excited @FightingStrokes & @StrokeTattler !! (You can always follow us in the meantime?)
  11. Thanks @kateallatt

     

    NEW EBOOK!

    I Am Still The Same -Self help stroke recovery tool

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