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Do you really know if someone is conscious? @kateallatt

As I emerged from my medically induced coma in February 2010, I had periods (in amongst my severe hallucinations) where I slowly became aware that I was on a life support machine in hospital, following a stroke. But I was completely unable to physically communicate that fact to anyone – for two weeks.

I was experiencing what people describe as ‘locked in’ syndrome.

It was terrifying. My response to seeing someone who loved me coming to visit me was to cry tears. But there was no noise, just tears rolling down my face. People assumed they were involuntary movements – but it was genuine emotion. My friends, family and doctors assumed I was in a vegetative state – but I was there the whole time.

I could see and hear, and feel anybody touching me and yet my brain couldn’t instruct any part of my body to move.

I couldn’t develop any communication signal, which is the key thing with anybody locked in – either an eye gaze or a blink. But I couldn’t do that. There was no outward sign that I could understand anything.

It was like being buried alive. There was no TV turned on for me – all I had was a clock on the wall and patients screaming around me. I had three kids who were six, nine and ten at the time who hadn’t been to see me so the separation anxiety was beyond belief. I was so bored, fearful, upset, angry, in denial, scared and hot – I couldn’t regulate my temperature.

I was in constant fear that the conversations my loved ones were having were that I wasn’t worth being saved.

Above all it was frustrating because the doctors made no attempt to try to formerly establish any communication signal at that point, something I’m still struggling to understand. Instead, it took my proactive friends to try to find a way to communicate with me using a rudimentary communication board, because they wanted to unlock the person they believed to be still inside.

In two weeks my consciousness improved and my friends were able to get me to blink to answer questions (blinking to spell out letters, which was a long process). I was still locked- in but I was able to blink to communicate.

My experience has taught me that we should always assume that a patient is conscious until we have absolutely proven otherwise. Beyond that, we must be truly compassionate in our care for patients who are in a vegetative or minimally conscious or locked-in state.

Patients need to be kept alive and I am personally so very grateful for the skills of my medical and nursing teams in giving me my second chance of life, but treat the human being too, it’s not just about patient SATs and vital signs.

Is the Glasgow Coma Scale (GCS) score, which is used to assess consciousness, always reliable and interpreted accurately? Indeed, is it performed on a patient every hour?

For anyone ITU is a very scary place. People die. Inappropriate conversations are overheard. Patients are often in pain and scared for their own survival. ITU is boring, so patients tend to over think and stress about what may happen to them. It’s also incredibly lonely.

All brain injuries are different, but we must start being truly patient-centred in our care of such patients and start treating the whole person – that’s both physically and emotionally.

Health professionals need to start treating people like they themselves would want to be treated.

My determined self-belief and hope against all the odds was ultimately what got me through and why my charity strap line is ‘no promises, just possibilities.’

Lets make stroke sexy!

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A stroke is anything but sexy, let me be clear so I don’t offend anyone from the outset!

However, why have we still not made the subject of stroke with politicians, TV and newspaper editors SEXY enough to write about?

How often do you see more than just a few column inches or online pages dedicated to stroke recovery?

Cancer charities have successfully given cancer messages an even higher impact when they talk about giving the illness the ‘V-sign’ on TV.

Yet our national stroke messages seem so utterly boring and not newsworthy, well unless you are a well-known celebrity. (Andrew Marr, Lauren Bacall, ChrisTarrant, Hilary Devey, Jessie J, Sharon Stone,…..) give me strength. Normal people have strokes. In fact anything with a brain can have a stroke, so that includes unborn children in the womb!

While I’m ranting, why are other cancer charities and governments so preoccupied with stroke prevention?

Sure, prevention is very important, but what about those poor people who didn’t actually manage to prevent their stroke happening in the first place? What messages are out there to help us self-manage our own recoveries and possibly contribute to society?

Change the record please and start ‘ass kicking stroke’ and redress your stroke marketing messages to help people try to aspire to recovering more.

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Stroke & mental ill-health – we are failing survivors

As most now know Robin Williams committed suicide. I think the immediate comments on Twitter summed up the widespread ignorance of the impact of severe depression and anxiety in our society when one wrote, ‘So What has Robin Williams got to be depressed about?’

Within 24 hours attitudes changed and the fantastic Mrs Doubtfire initiative went viral and is positively helping raise awareness of mental health issues globally.

 

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But when someone has a stroke, individuals suffer residual physical disabilities but the long term emotional impact is often extreme. One woman even blogged on a closed group in Facebook, ‘I was always very independent. Now walking from one room to another wears me out. My friends & sisters turned their backs on me. I hate living. I wish my stroke had killed me.’

Because of these often widespread and desperate views, I feel very passionately that we must raise awareness of stroke and severe depression. Furthermore, we must not make stroke campaigning always about stroke PREVENTION an F.A.S.T.

‘It amazes to see how selfish some people can be. They can try to justify it by saying it’s just too hard, or that the stroke patient isn’t the same, but that’s just life. Life gets hard and things happen that flat out stink. That in no way should affect your commitment to a loved one. My husband’s family rarely come to see him (maybe one person will come once every 3-4 months and stay for maybe an hour) and they only live about 30 minutes away. I know it bothers him that they don’t come, so I continuously invite them, but they always say they’re just too busy. I understand being busy, but if you can’t make time once a month or so to come and check on a nearby brother or son that needs you, then you need to look at your priorities.’

‘We have similar problems and I look at in that they have the problem! What bothers me is when they come and try to tell me and Paul how we should be doing things! That’s none of their concern they should simply come and visit your relative, and show support in that way. But nothing stranger than folk! Xxx’

‘I can’t count the number of times I was told, ‘Don’t ask me to go back it’s was just too hard,’ like it happened to them. I had to release my demons & digest my trauma, I was felt muzzled.’

‘…people need to get over themselves and think of how the stroke survivor feels. You don’t like hospitals? Neither does the stroke survivor. Visit them anyway. It’s hard on you to see a loved one in this condition? It’s hard on the stroke survivor to be in this condition. Be there for them anyway. To show true love is to put down your own feelings and hang-ups and be 100% there for the one you love.’

‘People are just selfish though how do they think we feel looking at our Loved Ones in their new post stroke conditions? It makes me mad I would rather they just said I can’t be arsed, at least you would know where you stood. People just can’t be honest, scared of hurting our feelings, well compared to what we have been through their opinions are nothing!’

‘Sometimes I feel as though it’s me and the boys up against the world. All I can say is thank god we’ve got amazing friends! Family gave good support at first but now we rarely see them, the majority haven’t visited for over 6 months which shows no support to my husband or our kids. People seem to think that sporadic text messages and emails are sufficient to keep in touch with my husband whilst my uncle who’s in his 70s and has just had heart surgery comes to see my husband from his home 20 miles away every couple of weeks. I think I’m better without the support and quite frankly the irregularity of it totally pisses me off. I hold grudges, a bad trait I know but that’s just how it is!’

 

Charities and government please LISTEN to these views from  anonymous patients and people above affected by stroke.

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Locked in syndrome diagnosis – think again about the prognosis!

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

 

Want to help Crowdfund our stroke recovery documentary film?

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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Is stroke recovery sexy? Strokerecovery tips.wordpress.com

@KateAllatt:

Stroke recovery CAN be SEXY! @fightingstrokes http://t.co/4qqz02VWQJ

Blog moved to ‘stroke recovery tips’ see you there?😉

I can & WILL. Shame about England in the World Cup.

Land Rover say about their new ‘can and will’ ad campaign, it’s about the:

‘Celebration of the spirit of defiance. The Spirit of the bold, brave & audacious’

http://t.co/vc6gx4StDT

However alas, Land Rover’s ad campaign is great but it hasn’t helped inspire England, who have yet again exited the group stages of the world cup in 2014.

I came across a new word this week. How utterly amazing? Sisu.

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Did you know that Gandhi’s quote still inspires me and hopefully you too.

Just see this blog as a shot of inspiration and positivity.

Good things will come, it’s all in the brain!

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‘I wish my stroke had KILLED me.’

Follow my personal commentary on Twitter @kateallatt?

This is shocking…

Do you identify with this after stroke?

Stroke campaigning is NOT all about PREVENTION.

‘I was always very independent. Now walking from one room to another wears me out.

My friends & sisters turned their backs on me.

I hate living.

I wish my stroke had killed me.’

We are failing actually stroke survivors in our constant quest to PREVENT stroke.

Charities and government please LISTEN to these views from  anonymous patients and people affected by stroke:

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‘It amazes to see how selfish some people can be. They can try to justify it by saying it’s just too hard, or that the stroke patient isn’t the same, but that’s just life. Life gets hard and things happen that flat out stink. That in no way should affect your commitment to a loved one. My husband’s family rarely come to see him (maybe one person will come once every 3-4 months and stay for maybe an hour) and they only live about 30 minutes away. I know it bothers him that they don’t come, so I continuously invite them, but they always say they’re just too busy. I understand being busy, but if you can’t make time once a month or so to come and check on a nearby brother or son that needs you, then you need to look at your priorities.’

‘We have similar problems and I look at in that they have the problem! What bothers me is when they come and try to tell me and Paul how we should be doing things! That’s none of their concern they should simply come and visit your relative, and show support in that way. But nothing stranger than folk! Xxx’

‘I can’t count the number of times I was told, ‘Don’t ask me to go back it’s was just too hard,’ like it happened to them. I had to release my demons & digest my trauma, I was felt muzzled.’

‘…people need to get over themselves and think of how the stroke survivor feels. You don’t like hospitals? Neither does the stroke survivor. Visit them anyway. It’s hard on you to see a loved one in this condition? It’s hard on the stroke survivor to be in this condition. Be there for them anyway. To show true love is to put down your own feelings and hang-ups and be 100% there for the one you love.’

‘People are just selfish though how do they think we feel looking at our Loved Ones in their new post stroke conditions? It makes me mad I would rather they just said I can’t be arsed, at least you would know where you stood. People just can’t be honest, scared of hurting our feelings, well compared to what we have been through their opinions are nothing!’

‘Sometimes I feel as though its me and the boys up against the world. All I can say is thank god we’ve got amazing friends! Family gave good support at first but now we rarely see them, the majority haven’t visited for over 6 months which shows no support to my husband or our kids. People seem to think that sporadic text messages and emails are sufficient to keep in touch with my husband whilst my uncle who’s in his 70s and has just had heart surgery comes to see my husband from his home 20 miles away every couple of weeks. I think I’m better without the support and quite frankly the irregularity of it totally pisses me off. I hold grudges, a bad trait I know but that’s just how it is!’

Honouring my passion with a right royal day out! @kateallatt

This is a great article from Peter Kay at the Sheffield Telegraph, of my life over the last 4.5 years.

‘Kate Allatt (right) and Alison French won’t forget Kate’s 44th birthday on 3rd June this year.

She has been invited to a Buckingham Palace garden party on June 3 in recognition of her founding the charity, Fighting Strokes.

It’s the latest accolade for Kate, who made a remarkable recovery from locked-in syndrome and is now giving people around the world the belief to fight back against strokes.

Winning an Extraordinary Woman of the Year award in 2011, she has developed a career as a writer and a speaker, recently a guest speaker of Cunard’s Queen Victoria on a Mediterranean cruise.

Kate, who lives in Dore with husband Mark and children India, 15, Harvey, 13, and Woody, ten, said: “My 40th birthday was not scaling Kilimanjaro, but lying in a hospital bed in the Northern General.

“If anyone had said to me in four years time, you will have written three books, Running Free being internationally published, developed a stroke support app and established a world respected internet-based advocacy charity and launched an international speaking career, I would have thought ‘no way, you’re having a laugh’. But I have.”

Kate will go to the Palace with best friend Alison French, also of Dore, who has been with her “every step of the way” since she survived a huge brainstem stroke with locked-in syndrome at 39.

She describes the effect as like “being buried alive, where you feel and think normally, but you can move nothing”.

Now Kate visits families and uses social media to encourage others with the message ‘No promises, just possibilities.’ She liaises with researchers and clinicians.’

We did have a fab day out!

The hotel was rather basic though it only rained for 10 minutes so I got full use out of my Audrey Hepburn-esque birthday present umbrella!! It also happened to match The Queens umbrella!

We did break the rules by snapping away most of the day, though I’m not publishing the real corker I took.

We got a fabulous view of the whole Royal party and came away feeling that we’d experienced something very special.

Buckingham Palace has wonderful grounds and a fabulous lake which seems very odd in the very centre of urban London!

The organisation and food was very slick for all those guests too!

We met some very interesting individuals and learnt the secret of how to make the best scon(e), as opposed to scone Alison!

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After the garden party we hit South Ken’s fabulous wine bars in our fastenators on a Tuesday night, which caused quite a stir amongst the cosmopolitan Londoners, who were incredibly friendly.

The night was rounded off with two Long Island Iced Tea cocktails – perhaps not my best decision in retrospect. Still always look on the bright side for my long suffering friend, Al.

I actually didn’t speak all the way home to Sheffield on the train yesterday! So she was able to rest her ears!.

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