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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’

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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!.

Is your relatives’ Care Home acting illegally? 10 TIPS #ContinuousHealthcare. @kateallatt

I have recently been embroiled in a case which has concerned me so much that I write this blog in the hope it helps others.

In trying to tackle the care home management team, this information may be useful to you. With to the recent and distressing BBC Panorama under cover report of care in ‘care’ homes, this is actually quite topical.

In trying to tackle the often reluctant care home management team, this information may be useful to you too.

  • Firstly, clarify if the registered nursing home funds the bed with a combination of health & social care? If it’s not a care home with nursing care for the resident, it may only be a residential placement care home.
  • Establish if the patient meets the eligibility criteria for a NHS Continuous healthcare package, which is care arranged and funded solely by the NHS.
  • It is important to be aware of the difference between a ‘healthcare need’ as defined;

    ‘As those who people require some degree of nursing or twenty four hour nursing’, yet many relatives are told their loved-one merely has social care needs.

    Why you ask?

    Because it relinquishes the NHS from any responsibility for funding the persons care. The person will instead be means tested and told to pay for their care.

    We all thought healthcare and nursing care was free didn’t we?  To be clear in the NHS Continuing Healthcare guidelines it says,

    ‘A healthcare need is a need to the treatment, control or prevention of a disease, illness injury or disability and the care or aftercare of a person…’

    Whereas,

    ‘A social care need is focused on providing assistance with activities of daily living, maintaining independence, social interaction, enabling the individual to play a fuller part in society…. Eg. Social work services, advice, support, practical assistance, adaptations, assistance with equipment.’

    IT IS ILLEGAL TO TAKE ON RESPONSIBILITY FOR PROVIDING CARE TO SOMEONE WHO SHOULD BE RECEIVING CARE FROM THE NHS.

    3. Who is the visiting GP? He should visit and make referrals twice a week on behalf of the patient.

    4. Who is the qualified physiotherapist and must be Health and Care Professions Council (HPCP) registered in the UK? If the physiotherapist is not HCPC qualified in the care home, is the patient referred to a specialist stroke physiotherapist?

    5. Have you reviewed the Care Home’s last Quality Care Commission report? If they are failing to meet the guidelines the home can be closed down.

    6. Have referrals been made for all the patients’ unmet needs? Eg has a wheelchair, cushions, mattresses, mouth care, emotional needs etc been met? What about speech and communication needs? Is the patient currently in bed 24/7 without a wheelchair?

    7. Take video evidence of the care home on your phone or otherwise. Always, keep a diary, including dates, times, people, conversations, photographs etc.

    8. Please use Crowd funding sites or sites like GoFundMe and friends to help you fundraise for assistive communication and mobility technology. E.g eye gaze or eye tracking equipment.

    9. Go to the local papers and become a whistleblower, if your concerns are not being met.

    10. If all else fails approach your local MP.

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    Assisted dying? .. The Big Question #NickyCampbell @kateallatt

    Wow just been asked to appear with Nicky Campbell’s on The Big Question this Sunday morning!

    Whilst I take a very positive view on life with the charity I founded – Fighting Strokes – I have strong views on ‘assisted dying,’ big time. (No surprise there then!)

    We are all individuals. Although, society should not be kinder to dogs than to human-beings.

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    If the ‘will’ to carry on in life goes, but someone is fully cognitive (like I was)  we should have a amendment to the law. You can’t make a horse drink, if they don’t want to.

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    For someone to be so physically ‘unable’ that they can’t help themselves end their perceived suffering / minimal quality of life, then they should have the right to die legally, after intensive psychological assessment. eg. Can we apply lessons from Oscar Pistorius’s with his month-long assessment for ‘General Anxiety Disorder’.

    I’d be interested in your views?

    The appearance was a bit of a bruising for me as it happens.

    The debate was uncontrolled and went completely off tangent. I also was personally attacked and my children brought into the debate.

    The debate was supposed to be about whether a doctor should be legally able to end someone’s life who was terminally ill. However, the debate was hijacked by others arguing about Belgium and the rights of disabled people.

    As I said at the top of the programme I stress:

    I believe in individual choice for all.

    I think there should be an amendment to current law only for those people:

    1. Who are out of hospital and
    2. Fully cognitive and
    3. After thorough psychiatric testing to protect vulnerable individuals and
    4. To have a witness

    Then,

    Those physically unable but cognitive individuals, should have the same rights as physically able people.

    Next time please leave my kids out of it!

     

    #Stroke loss cycle – where are you? #depression #closure

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    Back in 2010 I was very much in the well-known denial phase of my illness.

    My no-word-of-a-lie thought, when I was told by my husband that I’d had a stroke in ICU was,

    ‘Don’t be bloody ridiculous, strokes happen to old people, not uber fit 39 year olds!’

    Wrong. I was clearly very deluded.

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    Then, I morphed into Mrs Angry at the point I started to co-write my first, internationally published book -Running Free (Amazon). You see I had my life all mapped-out (being a control freak) and this certainly wasn’t in my plan!

    The injustices I suffered were acutely hurtful and I lashed out and often. My mantra. ‘How dare you all do that to me? ‘ ‘Do I mean so little to you all?’
    Yet again I do acknowledge all the support for me/us in hospital during 2010 by some loved-ones. It was totally amazing.

    However, I became appalled by some of the behaviour of so called loved-ones/friends that I only later discovered, occurred far away from me in hospital.

    These dreadful events made me question just how popular I/we really were in our community after all.

    I knew, and openly and happily acknowledged their help, in all my media appearances about all about all the good things, eg. how the village rallied, and cooked meals for my family, visited me etc, but not the shameful lowness, selfishness and self-centredness of some people at the time.

    We were an utterly broken family and some people quite simply shocked and disappointed me beyond belief.

    (Although none of the issues we faced were particularly unusual for most stroke survivors to have to deal with.)

    During this period I did became a crazed, impassioned stroke bore to friends and acted more impulsively than ever. Apparently most of these (excluding the ‘crazed’ bit) were actually very normal patterns of behaviour for brain injured people.

    Did I seem to overly love all the new found attention I received from the media and actively pursue national professional media opportunities during that period? Absolutely, though that action just wasn’t perceived as very British by my more reserved acquaintances.

    I got over that quite quickly really, although I will always enjoy using my interviews with Rony!

    Were people actually jealous of my sudden notoriety? Perhaps.

     

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    Then came my bargaining phase.
    I’d ruminate alone constantly about,

    ‘what if I’d gone to the hospital sooner with my headache?’ ‘What if I’d been more assertive with that ignorant, junior doctor?’ ‘What if I’d been running over the remote hills at the time of my stroke on my own?’ ‘What if I have another stroke?’ ‘Is that headache another stroke warning sign?’ etc.
     

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    After all that bargaining (and at the point I ran in the Percy Pud race in December 2011), I hit an emotional brick wall.

    I hit the acute depression stage.

    I was in emotional free-fall, with no one to help me or cushion my desperate fall, regularly unable to leave the house for personal activities.

    I was so lonely.

    (Hence, my irritation and anger in my second book, Gonna Fly Now!)

    I wanted to end my life alone with ‘Rocky’ and a brick wall.

    I lost all confidence, personal self-esteem, became isolated and was left out from my former social circles.

    Perhaps, my behaviour confused, perplexed and pushed old friends/acquaintances away? Did they not get my illness and my non people-pleasing’ behaviour?

    They witnessed an emotional breakdown in all it’s glory on Facebook, my only support.

    I’m sure my personal imperfectness made me unapproachable locally.

    Bizarrely, my professional persona flourished, as I grew with more and more confident in my stroke passion, knowledge, advocacy, national media appearances and family support.

    Perhaps non-stroke folk didn’t attribute my odd behaviour as mental health related and just thought they didn’t like the new post-stroke, media-popular Kate?

    Did they see me as full-of-myself, when actually I was promoting my charity stroke brand using all the free PR globally?

    I felt judged unfairly, as I actually had severe mental health issues.

    Was I also pretty paranoid and irritable a great deal?

    Yes, for sure, but that’s often typical for brain injured survivors and chronically depressed individuals.

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    In late 2013, I finally hit my acceptance stage. Phew!

    Actually, that was pretty damn quick in the scheme of things, but then again, isn’t that me all over?

    I AM IMPERFECT. Most of my new imperfections were not my fault.

    I am not normal, who is?

    I am also a far nicer, selfless person who has both natural compassion and empathy, with a better perspective on life.

    I like my own space and especially have empathy for people who have suffered severely.

    I love to exercise to keep me on an even keel.

    I have honed my paid speaking skills. Also I am better organised with both my paid and voluntary work commitments which I adore.

    My speaking career is growing every week, which gives me a real buzz.

    My relationship with my wider family and some friends has improved. But I also know who my real friends are. I have never realised the difference between a friend and an acquaintance or someone who just knew me. But now I do.

    My old school mates have been AMAZING!

    I firmly believe that those friends and family who were there for me at my worst, deserve to be there with me, at at my best.

    I was once told ‘to let it go’. Indeed I knew that was the theory, but in reality you can only do it when time heals you.

    I haven’t talked ‘stroke’ unless I’m specifically asked a direct stroke question by non-stroke folk since 2012.

    2012 was my annus horribilis Take Two! (The first being the whole of 2010).

    Life will have it’s ups and downs, that’s only natural, but I’m better equipped to deal with life’s hiccups now! (And what can sometimes be challenging teenagers ! 😉😉😉)

    I also believe what goes around, comes around. For example, I’m so glad my bessie-mate came with me join me on the fancy Cunard cruise recently!

    Since I spelt out to her in rehab ‘stand by me,’ she pretty much has over the last 4.5 years. A tough act to follow given her own family/work/health responsibilities.

    I’ve learnt to minimise both my exposure to social situations/interactions and to people who always seem to make me feel so dreadfully stroke-low. I don’t need a relapse!

    So my strategy is working well.

    I am the ultimate come back kid and Marmite girl – love me or hate me?

    I like me now and if you don’t, frankly I don’t care, it’s your problem. I am happier now.

    You could say that I’ve got the t-shirt with this whole loss-cycle thing, but I emerge far, far stronger than before. This blog gives me final closure now.

    But my real priority here, is that my reasoned and total honesty (as opposed to me over-thinking my loss cycle) will inspire you to make sense of how you are feeling right now and that you take support/comfort and HOPE from my stroke blog.

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    Life after a Locked in Syndrome diagnosis. No promises, just possibilities. @kateallatt

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    HOPE IS REAL

    YOUR FIGHTING SPIRIT WILL HELP CARRY YOU THROUGH

    INSPIRATION BREEDS MOTIVATION!

    ‘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 ‘R’, I’m 29 and from Finland. Last summer, fifth of july to be exact, my boyfriend ‘T’ suffered a massive brain stem stroke. Only symptoms he had were a headache day before and nausea. When we went to er doctors suggested ‘T’ might be suffering from vertigo. CT scan revealed that it was not the case. ‘T’ basilaris 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 ‘T’ did not wake up after the operation and new CT scan showed that the vein had clogged again. ‘T’ 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 painfull hours doctor managed to dissolve the clogg a bit so that ‘T’ survived. When he eventually woke up however he was in complete locked-in state.

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    I saw that ‘T’ was present when I looked in his eyes. ‘T’ has two boys, X 12 and Y 10 who are really close to me, from previous relationship, and it was Alex who asked ‘T’ 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 introdued. 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, ‘T’ 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 and brain damages and also stroke victims.

    Rehabilitation lasted 6 months and I was with ‘T’ the whole time, every day, trying to help him as much I could.

    ‘T’ 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 ‘T’ had regained some movement to his head. Rehabilitation consentrated in the beginning to communication. All sorts of buttons and switches were introduced to ‘at’ so that he could use Computer, communicator and also electric wheel chair with them. ‘T’ 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 ‘T’ speaks and uses his hands to move around in a wheelchair. His traceostomy 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 theres action. Therapies still go on and were living in a temporay apartment at the moment. Our own home is being renovated so that ‘T’ can move around there in the chair. We are plannig to get married next autumn.

    I would like to thanks you for telling your story. I found your web page when I tried to look for information about locked in syndrome. When you google locked in syndrome and recovery there is not alot that comes up. But your story was there and it gave us hope! I told to ‘T’ 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 on and ‘T’ 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, ‘R’

    Ps. If you have time, it would nice if you could write something to ‘T’ as a sort of suprise.. His email address is And, almost forgot, where could I safely By your books? They are not sold in Finland!

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    ‘Thelma & Louise’ return for a very special boat trip!! @kateAllatt #cunard

    I was only invited to speak on the Cunard’s Queen Victoria ship!

    Please pinch me, did this really happen?!

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    In a year when I’ve been invited to meet the Queen at Buckingham Palace on my 44th birthday in June, I really can’t believe I got an invite to give a talk on the salubrious Queen Victoria ship too..

    Exactly 4 years ago for my 40th birthday, I was marking my big milestone with a balloon on the end of my hospital bed. Depressing.

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    However, fast forward four years (and my annus horribilis of 2012), with my obsessive personality and having to do something worthwhile, in what I’ve realised first hand, could be a short life.

    Deep breath….

    I founded a global internet-based charity (Fighting Strokes) in 2011; written three books in 3 years (my 1st internationally published book Running Free Amazon); launched an international speaking careerinspired people the world over to improve their post-stroke lives; won Extraordinary Woman of the Year 2011; was invited as a VIP to attend the London 2012 Olympic Opening Ceremony, by the Deputy PM; and writing a unique stroke support app.

    FS logo final hi-res 2014

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    The Queen Vic booking only came four weeks ago and out of the blue from Room 54. However, I quickly realised that I would need to buy a whole new wardrobe, given I spend most of my days in gym Lycra or jeans!

    I was so busy impulse shopping fancy-formal-wear and cooking endless meals for my family, for the following week, that I forgot to write my Queen Vic speech!!

    Mark had to do the childcare sadly, so I had to ask my Bessie-mate Alison, to accompany me.

    We were so excited as we embarked on our very own Thelma & Louise-esque Boat trip!

    (We seem to have a thing with boat trips, if you’ve ever read my 1st two books!!!)

    We were flown to Tenerife and shown to our Princess Grill Suite. OMG!

    In return for their hosting I would give one 45 minute speech and one Q & A session. We were given top-notch service:

    • 24 hour Concierge service
    • Full bathroom with bath and shower
    • Exclusive access to The Grills Lounge, The Courtyard and private deck area
    • Single-seating dining in the Princess Grill restaurant. A la Carte!
    • In-suite dining from the Princess Grill menu
    • Priority embarkation
    • Bon Voyage bottle of wine and fresh strawberries
    • Pillow concierge menu (a selection of pillows and duvets to suit your preference)
    • Soft Terry Robes & slippers
    • Nightly turndown service with pillow chocolate
    • Satellite TV with multi language film and music channels
    • Direct-Dial telephone
    • Refrigerator, safe and hair dryer
    • Daily shipboard newspaper
    • 220V 3-pin and 110V 2-pin Sockets
    • Personalised stationery and atlas
    • Daily fresh fruit

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    We were accused of being the ship dancers on two separate occasions in the lift – not bad for someone in my forties and who walks like Keyser Soze off the Usual Suspects! We were also at risk of being considered drunk and disorderly, although we were actually just high on our new found freedom and special environment.  I will always remember Al chundering on about the supposed rough sees over the Bay of Biscay (which was actually a mill pond).  I will always remember Al describing the ship ‘lurching’ on more than one occasion. We had such a laugh and I couldn’t think of a better ‘runner -up’ person to take with me.

    I thoroughly loved giving my talk and book signing and look forward to getting more Cunard bookings!! (I’ll take my husband next!) The audience were very interested in the subject matter and gave me some fabulous feedback.

    Although the best comment I got on my return was from my 10 year old son, Woody. He said, after looking at our snaps,

    ‘Mummy, you look just like you did before your stroke.’

    And do you know, finally, I mostly feel like I did too.

    There were no shootings and fatalities but Thelma & Louise eat your heart out!

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    Spoilt wasn’t the word!

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