Do we know the locked in syndrome prognosis in the 1st weeks weeks after the illness?

The brain stem controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. So after a brainstem stroke some patients will be formerly diagnosed with Locked In Syndrome. This doesn’t necessarily mean a death sentence for the individual which results in the fatal pneumonia, like the poor chap in depicted the film – The Diving Bell & Butterfly.

Over time, these symptoms could result in being mild to moderate and short to long term. I believe it is possible to positively influence the future patient outcome and prognosis, especially if therapeutic therapy is offered early in ITU (as opposed to only passive therapy), the health professionals remain open-minded about the improvement possibilities early on, the loved-ones are proactive and informed, but most importantly the patient is physically able to try to concentrate cognitively to work hard on improving.

If you don’t believe me why don’t you read this…

‘Hi Kate!

I’m approaching you on behalf of my boyfriend, or husband to be actually. Hope you have time to read my message!

My name is Rikki, I’m 29 and from Finland. Last summer, 5th July to be exact, my boyfriend Tommi suffered a massive brain stem stroke. Only symptoms he had were a headache day before and nausea. When we went to ER doctors suggested Tommi might be suffering from vertigo. CT scan revealed that it was not the case. Tommi basilar artery was completely clogged. Doctors tried to dissolve it but failed, and after that they inserted a microscope netlike tube structure inside the vein to keep it open. For a moment it seemed to help, but Tommi did not wake up after the operation and new CT scan showed that the vein had clogged again.

He was rushed to a new operation and doctor told me that he had to think very hard what he would do, or was there anything left to do. After some painful hours doctor managed to dissolve the clog a bit so that Tommi survived. When he eventually woke up however he was in complete locked-in state.

I saw that ‘Tommi’ was present when I looked in his eyes. ‘Tommi’ has two boys, X 12 and Y 10 who are really close to me, from previous relationship, it was Alex who asked Tommi to blink twice if he hears us and means yes, and blink once if he means no. After couple of weeks the alphabetic board was introduced. I became quite fast speller, but then again nobody else, including nurses and doctors did not know how to use it. First weeks were really hard, ‘Tommi’ had sepsis and pneumonia but survived. When he’s condition was stable he went to a rehabilitation center in Helsinki. It has a good reputation they treat people with spinal cord injuries, brain damages and also stroke survivors.

Rehabilitation lasted 6 months and I was with ‘Tommi’ the whole time, every day, trying to help him as much I could.

‘Tommi’ is very determined and stubborn person. He says he is going to walk by next autumn. This is of course not what doctors or therapist told him. When we went to rehab ‘Tommi’ had regained some movement to his head. Rehabilitation concentrated in the beginning to improving communication. All sorts of buttons and switches were introduced to Tommi so that he could use Computer, communicator and also electric wheel chair with them. Tommi wrote to me that they could all be thrown into trash can because he is going to speak and move around in a wheelchair using his own hands. I was in a minority believing that.

Today Tommi speaks and uses his hands to move around in a wheelchair. His tracheostomy was removed in January. He is going to get electric aids to his wheelchair that help him when his arm muscles tire. His speech is still sometimes blurred by phlegm that was a real issue in the beginning, but that is a small problem. He has activity in his muscles all around the body, they are weak of course but still there’s action. Therapies still go on and were living in a temporary apartment at the moment. Our own home is being renovated so that Tommi can move around there in the chair. We are planning to get married next autumn.

I would like to thanks you for telling your story. (Running Free Amazon http://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome-ebook/dp/B008G5LRZS/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=) I found your web page – http://www.fightingstrokes.org/ – when I tried to look for information about locked in syndrome. When you google locked in syndrome and recovery there is not a lot that comes up. But your story was there and it gave us hope! I told to Tommi that it is possible to recover, and he is proving me right. I did not talk to him about all the other horrible stuff I found while googling. And I did not think about it myself, instead I thought about your story. So thank you, on my and Tommi behalf! You are very strong and inspirational person! I wish you all the best and hopefully spring is as sunny there as it is here there too!

Yours, Rikki

Ps. If you have time, it would nice if you could write something to Tommi as a sort of surprise.. I almost forgot where could I safely buy your books? They are not sold in Finland!

The moral of the story is that there is always…

hope

Stroke recovery documentary – wanna help crowd fund it?

We are looking to supplement the grant we’ve been awarded with crowdfunding, if you fancy getting involved?

Get involved why not help Crowd Fund the Georgia’s documentary film?

This is not just a documentary film about the world hearing the other side of the ‘LockedIn Unlocked’ stroke recovery story.

My story will join other remarkable stories where individuals haven’t ended up like the poor chap in the award winning film – The Diving Bell & Butterfly. Yes, sadly some individuals pretty much remain in a desperate state similar to his, but others simply don’t. My charity offers ‘no promises, just possibilities’

Indeed, this will hopefully raise awareness of some of the myths surrounding potential to improve after having suffered a brainstem stroke with or without locked in syndrome.

Quite a lot of people recover significantly and far more than the often very premature health professionals would formally suggest especially in the early stages of the illness.

I hope we kick ass with awareness, attitudes & treatment, but also explore the ways we can optimise the well-being of those who don’t enjoy significant improvement gains.

I hope Georgia’s film will give people, like I once was, an important VOICE!

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Less nurses & more doctors assistants = more stroke deaths in hospital! #shock

I’m totally flabbergasted.

What is the Rt. Hon Jeremy Hunt thinking of?

I read this article in The Huffington Post recently:

Stroke Death Rates Higher In Hospital Wards With Fewer Nurses

Is anyone surprised?

Then on Sunday 22nd August I read that there are going to be an ‘expansion of doctors assistants in the NHS’ presumably to cut costs yet further?

These two developments are madness, false economy and thoroughly dangerous and reckless!

Jeremy don’t you know more people will suffer from more misdiagnoses and poor care, not just stroke, which will end up costing the NHS, social and Welfare State more.

Was it a question of Jeremy throwing up his balls up to see which one lands upright, so as to determine which health cost saving strategy to pursue?

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Have you been to ‘Hell’s gates?’ #InvictusGames #strokesurvivor

Watching the truly remarkable Invictus Games Prince Harry has so brilliantly pioneered, made me think, ‘bloody hell those ex-servicemen and women have also been to Hell’s gates and back, big time.’

Everyone has tough times but when you hear of the physical and emotional traumas these people have suffered, you can only imagine (in your worst nightmare), if we really understand what a tough life really is? Should we put ourselves more out for others?

Do we moan unnecessarily in life? Should we be more grateful for what we have each day?

This is ABSOLUTELY not to say people can’t OR shouldn’t suffer mental illness for lesser experiences at all, as we all have different coping thresholds, but we must celebrate the inspirational way these people choose to cope with their massive set-backs.

In fact to prove that, I am now so passionate about mental health that I took part in my own Mrs Doubtfire challenge recently.

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I can’t imagine the fear, the loss, the physical pain, the post traumatic stress, the loneliness, the isolation, the grief, the loss of all the dreams you once had, the pain of rehabilitation, the redefining yourself, the loss of friends, etc.

Writing this list I realise that these feelings are quite normal for stroke survivors to have too. We really need to do more to help everyone deal with their setbacks and learn lessons from these inspirational athletes.

When I hear how a man only narrowly escaped being zipped up dead in a body-bag in Afghanistan after one final pulse check from a diligent doctor, or I hear of the only ever man to survive being shot through both sides of his brain, it makes me feel grateful and blessed to be alive.

I salute you Prince Harry and your organising team! Very, very well done! Long may the games continue!

Will power, self-belief and having an ‘I Can’ attitude, will help all us wounded individuals.

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What have you done for the 1st time since your #stroke? @fightingstrokes

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Since your stroke what was the first time you:

* Ate a meal with both a knife and fork?

* Wiped your own ass?

* Got into a car?

* Brushed your hair or teeth yourself?

* Tied you shoelaces?

* Tied your hair in a ponytail?

* Had sex?

* Walked unaided?

* Applied mascara or plucked your eyebrows yourself?

* Slept throughout the night?

* Really appreciated the love, support and care of your proactive loved-ones?

* Really understood what actually happened to you?

* Really understood the meaning of true friendship?

* Drove a car again?

* Felt in control again as a parent?

* Returned to paid employment?

* Accepted the stroke happened to you?

* Found ways to cope with the ignorance of most non-stroke survivors?

So what would you add to this list?

Stroke affects so many things.

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