My husband said he was told ‘she’d probably be better off dead,’ by medics back in ICU in February 2010.
Eddie Pleban wrote this relation to what the medics said to his loved-ones when he had his stroke…
‘Only 48 hrs to live, he may never walk, talk, swallow again, he may have his trach In for life, he may have his PEG for life, he will never climb a mountain again. I now live a nearly normal life with out any of the above and I’ve climbed a peak in Deryshire. Three years post stroke.’
Heidi Davies wrote this…
‘My husband was told ‘you have a difficult decision to make’ i.e. Switch me off, baring in mind it was only a couple of hours after my stroke, then a couple of days later he was told ‘you’ll need to do everything for her’, it will be 5 years in June, I’m still here and like everyone else proved them wrong. Shame they have to look at the negative.’
Andrew Woodgate posted on Twitter:
‘He might not wake up & if he does you may wish he hadn’t.’
Jennifer said this on my tips Brainstem stroke locked in syndrome page:
”Better off dead’ – ya. It’s the whole LIS thing. If you can’t lift your arm, move your leg, etc., on command, docs assume you’re vegetative – not that you understand, but just can’t make muscles move..’
Our loved-ones stood by us
Sally summed this up ‘perfectly’ today:
‘Why do doctors have to be so negative? I understand that they don’t want to give false hope, but why dash all hope? Why not give a little something to strive for? As the people in this article have proved, and I am sure many thousands of others around the world, the doctors are often completely wrong in their doom and gloom predictions! With a lot of love, support and determination the seemingly impossible definitely can be achieved! Thank you for being such wonderful inspiration!’
Andrew Marr on the Johnathan Ross Show:
‘Medics told his loved-ones were told twice – he’s gone. The third time they said he will survive but he will be a vegetable for the rest of his life.’
However is it similar to what your loved-ones were told?
Medics should say to stricken loved-ones:
‘I am not God, on the recovery scale he/she could be like Tony Nicklinson or Kate Allatt and EVERYWHERE in between. We just don’t know, but I do know that patients’ own motivation levels, the level of support from loved-ones and the quality of the early rehabilitation is ESSENTIAL!’
Kicking Ass with locked in syndrome for you & ALWAYS, (just like I did for me in 2010!!!!) 😉
