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

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.