#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

 

 

 

 

 

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