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.

disABIlity

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?’

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‘My bathroom looks like a hospital WC!’

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‘I struggle to open my medicine packets.’

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‘I feel so invisible in my wheelchair.’

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‘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!)

housework

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

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‘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.

assistive tech

 

@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.

 

a

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