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

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

     

Doctors are not God! 10 tips for doctors.

So how do I know?

My husband was told in the first few days after my own catastrophic brainstem stroke:

‘She’d be better off dead.’

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Andrew Mars wife was told:

‘He will survive but he’ll be a vegetable for the rest of his life.’

Andrew Woodgates’ wife was told:

‘If he survives this you’ll wish he hadn’t.’

Far too often, I think doctors are overly negative/pessimistic and far to soon after any kind of stroke (or serious illness for that matter).

I feel strongly that doctors remain honest but hopeful and must not dash all hope. I founded my charity – Fighting Strokes – (You can probably figure out why I called it that from the name!)

After all, no traumatised loved-one is wants any false promises, just balanced information – research & anecdotal – that there may be real possibilities.

Doctors are NOT GOD! No one has a crystal ball.  Can we really factor in the love and commitment of proactive loved-ones coupled with the spirit, will, self-belief, motivation of particular patients.

I accept that the NHS has less and less money and resources to work with so there are enormous pressures on doctors and ICU units, but come on?

So here is my little list of things doctors must read in cases of serious stroke.

1. “All strokes are different. Fact. “You never lose a VOLUNTARY pathway if it returns!

PLEASE TELL THE PEOPLE AFFECTED BY STROKE & THE PATIENT!

2. “On a graph, we just don’t know where your loved-one will be. They could be like Kate Allatt, Richard Ford, Mark Ellis, who appear quite ‘normal’ considering after their period of locked-in syndrome.  However, there are people like Tony Nicklinson who represented a very severe case indeed, with every single permutations in-between. We just don’t know the long-term prognosis in the early weeks or months of diagnosis.”

3. “Intensive and good therapy immediately after the coma and be patient-centered – psychological, emotional, neuro physiotherapy, Speech & language therapy (S.A.L.T), Electric Stimulation, PRACTICE..It’s about Repetition, Frequency & Intensity, as opposed to doing task related activities like getting dressed or making a bed.”

4. In brainstem strokes with locked in syndrome, “you must have an ‘end of word’ box on the colour-coded communication board in ICU & Rehab and a TV & radio, which gets switched on/off.”

5. “The word ‘plateau’ is GARBAGE!  It is a term used by medics to describe the way progress will slow to almost nothing, but that is really due to NHS funding and ignorance, rather than the patients’ own desire or ability to improve.”

6. “Slow or fast, large or small, the patient will ALWAYS make progress improvements, following a stroke. If the patient must really want to work hard in therapy and alone. Please note, that progress does NOT come easily. I remind you of Christine Waddell, 17 years with locked in syndrome and actually making phenomenal progress. Fact. (Ill blog next time about her.)

Loved-ones must not try to do too much for the patient. It frustrates the patient and you. This also impacts on patient progress. This is deeply irritating, even though your intentions are not often borne out of irritation, but a genuine desire to help.”

7. The patient will feel, shock, pain, grief, boredom, sleeplessness, denial,  anger, isolation, depression and acceptance. That’s the loss cycle. In time the patient MUST really want to improve. You can lead a horse to water, but you cannot make them drink it! I’ve learnt that. Be patient and be tolerant.

8. As Loved-Ones you MUST stand your ground with the medics and patient, be diplomatic, but forceful use video evidence, keep a diary. Don’t allow medics to accuse you of wanting your Loved-One back so much that you actually mis-see their small flicker or progress. Small flickers lead to big things! Proactive loved-ones are a key in the patients level of recovery. Video changes and keep a diary.

9. Read: The Brain That Changes Itself, by Norman Doidge.  Research neuroplasticity and how the brain makes new pathways.

10. The patient MUST really WANT THIS & we must stop pretending to be patient-centred in hospital and start applying the theory!

This is worth bearing in mind:

Optimism and hope are related to better outcomes and depression to premature death and worse functional recovery.