Forget retirement Parky? (Oh and Levenson please, please, please extend controls to ALL media on Thursday!)

I don’t know, about you but for one am I’m frankly PISSED OFF with the incessant celebrity plugs, for books, DVDs and films that seem to dominate all our radio and TV interviews, and its NOT just because Christmas is looming.

Whether its Peter Andre schmoozing with the Loose Women team to sell his latest tour, his fatherhood qualities, his six pack or his 4th autobiography. (Boy, how well has he done since appearing on I’m a Celebrity Get Me Out Of Here with his future wife, then divorcee, Katie Price?)

Or the latest Gino cookbook or Davina fitness video or the Jeremy Vine memoirs or Keith Lemon’s latest TV show etc…

Is it just really efficient celebrity publicists, their free PR or something else, much more cynical or OUR FAULT as viewers?

Every year, the Daily Mirror  Pride Of Britain Awards celebrates the exceptional achievements of ‘normal’ heroes with the obligatory and very tearful ‘celebrities’. Other than that, our media would just be full of shallow interviews with average pop stars, soap stars, ‘Made in Chelsea’ or ‘TOWIE’ types?

Some remarkable individuals, who are often patronised by ‘normal folk’, (just at the time the camera pans to someone like, Emma Bunton), as she wipes her genuine,  but lucrative ‘TV station audience/advertising’ tears.

These remarkable individuals save lives, are selfless, are unsung, brave, caring, often change worldwide attitudes, make a difference, passionate and raise awareness, so tell me why it is just once a year they get to have their ‘moment to shine’ or even be interviwed, albeit for briefly?

Just see for yourself. Why not watch or listen to; This Morning, Loose Women, Chatty Man or the One Show, Jeremy Vine, etc…

Is it really damn good publicists or the TV and radio editors, looking to max out on viewer figures or advertising?

I mean Iceland must be making a killing with the latest ‘I’m a celebrity’ viewing figures?

Do we really get much insight from the celebrity interview, apart from the product plug, latest fad, or how to achieve youthful looks at 90!? For goodness sake, does the often celebrity educate, inform, make a difference, raise awareness, offer hope or actually really entertain us? The celebrity appearsto have to fulfil the interview for contractual reasons?

I’m an 80’s kid who grew up on Parky, Wogan and Russell Harty. We have really ‘dumbed down’ in my opinion. I love documentaries, period dramas, new dramas and insightful interviews, like those from Piers Morgan Life Stories. (I mean Wossy spends most of his show talking about himself and asking very weak questions of his guests.)

So does the appearance of the celebrity guarantee a certain level of viewing figure for the TV show? (Which in turn guarantees the life of the TV station or a certain level of advertising revenue or listener/viewers?)

I know the scope of the Levenson Inquiry doesnt extend to this, but I’m not happy.

What about the real life inspiring stories, the developments, the progress of non celebrities and perhaps educating the UK and world, on Burma, The Killing Fields, The Congo, The Sudanese, Famine, etc or a matter close to my heart the soon to be 2nd biggest illness in the world, STROKES?

Did you know?

(Source: www.worldstrokecampaign.org/2012)

• Stroke can be prevented.
• Stroke can be treated.
• Stroke can be managed in the long-term.
• 1 in 6 people will have a stroke in their lifetime.
• Every 6 seconds stroke kills someone.
• Every other second stroke attacks a person, regardless of age or gender.
• 15 million people experience a stroke each year, 6 million of them do not survive.
• About 30 million people have had a stroke – most have residual disabilities

(Source: The Stroke Association UK)

• 150,000 suffer stroke per year.
• 53,000 people die from  the disease.
• Over 1,000,000 people in the UK are living with the effects of stroke.
• Finally, the £20 billion NHS cuts have hit short, medium and long term stroke care and rehabilitation MASSIVELY, so we need to fight for you!

(Source: Fighting Strokes Facebook & Twitter)

• Early intensive therapy & no FINAL PROGNOSIS should be given by medics to the loved ones (and or patient) until atleast 1 year by medics, (ideally 2 years) & CERTAINLY NOT 2 weeks after the patients’ stroke.
• Bite sized and ultimate goals are essential.
• The often used word ‘PLATEAU’ doesnt exist, it’s just a medical term to conveniently explain that the money runs out to help the patient progress further after their stroke or brain injury.
• There is a ‘Hidden Emotional Side of Stroke and Brain Injury.
• Marraiges are often destroyed by brain injury and stroke.
• Sleep issues with stroke and brain injury are very COMMON.
• Medium & long term rehabilitation should be more available for everyone who wants to put the effort required into improving, and be far more concentrated, and for far longer in the community. NO PAIN NO GAIN!
• There are no published STATS on locked in syndrome, range and levels of progress, incidences of brainstem stroke, case studies etc..

Why is it that Fighting Strokes, and charities like mine, generally get one chance (if they are lucky) at plugging their vital issues and causes? Yet ‘D list’ celebrities have an open door, to appear as often as they like on the sofa, just to do a plug with a bit of light chat?

When will all media convey the important messages of the day, rather than appearing to be a free PR tool for celebrity publicists?

Ah well, social media is the way forward. Speak direct (an unedited) and share, with your audience.

Sorry, if I sound like a grumpy old woman, rant over, its just whats in my head!!!

Maybe, you think I’m wrong??

Nicki Minaj has a lot to answer for!

It all started 6 weeks ago when The Pink Ladies were just finishing an epic road cycle in The Peak District after 30 miles!!

At the end of our cycle, I toppled over INTO the busy road near my house, because I couldn’t quickly move my foot fast enough off the flat pedal. My ‘stroke of luck’ was that it was only a slow, driving motorist who was about to run me over, as opposed to an unstoppable, huge lorry!

The result:

My flat (as opposed to dropped) handle bars jabbed right into my right rib cage which gave me the worst winding I’d ever had. I sat on the curb, with my pal, as I struggled to breathe in any air, for what felt like 2 minutes! Needless to say my ribs were VERY painful, as I assumed they’d been badly bruised. Well I am ‘doctor Kate’ afterall!!!!

Fast forward 4 WEEKS of trying not to sneeze!

My daughter and I went to see Nicki Minaj sing in Sheffield at the Arena. I did refuse to wear the wig and eyelashes, but I did wear my black, heeled ankle boots and felt quite excited about seeing a live concert!

Can you believe some of the hardened fans slept in chilly, industrial Brightside, just to try to be at the front of the ‘mosh pit’?

Well the concert was full of her obligatory swearing (I didn’t know that previously) and preaching about how the mainly, copious teenagers should reserve their ‘cookies’ for the right man!!! She was pointing to her own groin at this point. (I think us mums were in the tiny minority that night.) I couldn’t help but notice the range of high heels around that night, as the teenage wannabes tottered, like me, in heels which were only 1/3 as high as theirs.

By the time we left, it was cold and late and bed beckoned for both of us. I negotiated an upward sloping, muddy curb, but I fell in the darkness with my right arm outstretched upwards. You see my brain doesn’t tell my hand, (or my cycling foot) fast enough to move, so that I can help break my falls. The result, was that I landed very heavily and subsequently cried like a baby!

The next morning my shoulder was very, very tender. I mean I couldn’t even dress or straighten my hair! (Cue the appearance of the fourth member of the 80’s Hair Bear Bunch!) But I carried on in true British Bulldog (a nod to 007) style for a week.

However, ‘doctor Kate’ succumbed to seeking professional medical advice 6 days later. (Something I had resisted, because of my embarrassment and dislike of hospitals. especially A & E, where I’ve been more times than I care to remember in the last 2 years! (In fact, they even have my special chair with my own name on!)

I answered the obligatory ‘name, date of birth…, questions’ with the lovely male nurse, who then asked,

“Any medical history?” to which I looked him straight in the eye and truly said,

“How long have you got….?

“Seriously, I had a brainstem stroke with locked in syndrome on 7th Feb 2010 and was in the Northern General hospital for 8 months.”

bizarrely, his own wife ‘Debbie,’ who I remembered, nursed me in ICU!!! (Small world, still, I sold two more books- www.gonnaflynowbook.com).

Well, the long story is that I not only I had fractured my right shoulder, but the x-rays revealed I’d fractured my ribs cycling, 4 weeks earlier too!

Yesterday, Mark and I went to see Calendar Girls at Buxton Opera House. I was sure I’d booked for the evening performance in the Dress Circle no less. however, and rather fortunately, we spotted that our tickets were only valid for the dress circle, ‘silver surfer’ MATINEE performance!!!

Suffices to say it was brilliant.

However, I was reminded, once again, that I wasn’t ‘normal’.

I tottered into the bar in my black, low ankle boots, (rather resembling a transvestite who needs more practise walking in heels), as the bar manager commented:

“You look like you’ve already had a few?”

He must have thought I looked totally inebriated, (I mean we were with the silver surfer brigade and it was two in the afternoon) when I ordered my SMALL glass of red wine.

Other morals of my life:

1. Don’t make judgements about people!

2. Keep practising walking in heels!

Inspirational Xmas book ideas for Christmas! ;) Kate Allatt

Stroke Blog by Arockystrokerecovery

I need to shift some stock and what better way?
(Remember both if my books are on all ebook formats too kindle/nook/kobo…)

Here is a potted take on both my books from the woman who wrote them. See them on Www.gonnaflynowbook.com for availabilities.

Running Free

I ‘stroke’ swear alot!

It’s raw, honest, candid, there is a lot of non-self pitying humour, which will snap you out of moments of real sadness.

It reveals the pressure my stroke had on my own relationship and very graphically.

It reveals how wonderfully supportive friendships and my family were, to both me (and my family) during my 8 month stay in hospital.

It’s inspirational, though some people wouldn’t want to be married to me, which I get. But that spirit got me here.
It’s positive.

My true story had a great ending, even then.

It’s become a worldwide manual for health professionals and anyone…

View original post 943 more words

“You have just saved my husbands life!”

The fireworks are metaphorically going off tonight, well it is bonfire night!

The wife who said this blog title to me last week, was only ringing me at Fighting Strokes to find out how to claim long term benefits for her newly, very dependent husband in hospital.

She had ALREADY been convinced by the whole medical team, that her husband was a lost cause, after just 3 WEEKS of his brainstem stroke with locked in syndrome. Disgusting!

I gave her a few home truths not least:

• the appalling GENERAL views of the medical profession worldwide to locked in syndrome progress potential,
• the science of NEUROPLASTICITY – Norman Doidge ‘The brain that changes itself’
• LOCKED IN SYNDROME, in terms of progress rates from desperate to almost full, with everything in-between on the progress scale),
• to the rubbish the medical profession spout that a ‘PATIENT WILL PLATEAU’ (I’ve said before, that in my opinion, the patient never stops progressing after any kind of stroke, though at different rates and levels, but the money that pays for that progress stops too soon, so the patient’s progress simply ends! In any case I’ve been plateauing since July 2010 and we all know that was rubbish!)

By the end of our conversation I had re-lit her fire and reignited her fight for and with her husband!!!

YET again the medics often write off patients too early and prematurely. This is shocking and it keeps happening everywhere. All patients should receive two years intensive therapy, (but at the minimum one year) before predictions are given to loved ones and patients about how much better (or not) the patient will get.

Sure, the medical staff should explain that the individual MIGHT well not progress very much, BUT they just might too. They should site many diverse examples of people like Allison O’Reilly, Pete Coghlan, Mark Ellis, Andy Davies, Christine Waddell, Gary Parkinson, Shane Booth, John Lindberg, Judith Ford’s husband, me Kate Allatt (www.gonnaflynowbook.com), Steph King, Mia Austin, Michelle Wheatley, Bram, Tony Nicklinson, etc. Just see this page on my Fighting Strokes website http://www.fightingstrokes.org/stroke-fighter-stories-to-inspire-you/

I’m sickened, time and time again because medics seem

a) so concerned about being sued, and

b) that they don’t want to be seen to give families false hope, so they extinguish ALL hope for the patient and their loved ones. They seem to convince loved-ones that the patient is a lost cause, so they better re-build their lives around the sufferers new utterly debilitating disabilities and 24 hour nursing care.

The result – a lot of families give up on brainstem and locked in syndrome patients. Fact. It is ALSO very important to say that alot of families are strong enough to ignore the medics opinions too, for example Deborah Parkinson, Steph Cousins dad, Amy Ellis and mum Barbara Davies.

Medics will also say,

“Well Kate Allatt was a medical blip, or she can’t have had proper locked in syndrome.” What rubbish!

Would you believe that the loved one described above, was written-off after just 3 weeks after his brainstem stroke with locked in syndrome?

I also got this off Facebook from Barbara Davies – a mum of a locked in sufferer:

“O Kate this is unbelievable! We had the same experience one year ago- I really thought after the high profile LIS in particular has had in the media and the personal testimony of so many and especially yourself medics would be able to give people some hope. Don’t these medics hear what goes on in the real world?”

They also gave up on Judith Ford’s husband after just 1 week in ICU!

It makes me so angry, but I will continue to fight misconceptions for people who can’t.

It is annoying. I do think that you have to have so much resolve as a patient, most people just can’t fight it without their loved ones keeping their spirits and drive up, along with the intensive therapy, and patient focus, where the loved-ones remain positive for the patient.

However, in the interests of balanced fairness, I have to say that some patients die or don’t enjoy as much progress as others, as someone pointed out on my Beating locked in syndrome site recently:

“…But sometimes they are wrong the other way too and believe me, seeing your loved one reduced to nothing more than an existence and living with that for over 2 years isn’t easy either. 😦“

My response was;

“I accept that Karen. I think medics just have to give the best case and worse case scenarios every time. Then the family is informed and can make a balanced judgement. No one knows ofcourse I agree,  but medics are in a position of implied trust with worried loved ones who are very vulnerable at that time. X“

Someone else wrote:

“Locked in is such a heart breaking thing to go through for all the family as well as the sufferer isnt it, i would never of even tried to communicate with my mum if i hadnt just read kates book as id never even heard of it before, this was before my mum became ill, in some ways i think if my mum had passed away earlier it would of been kinder for her, as we had only lost my dad 12 weeks before her stroke and we already new how low she was, i think she hated  her therapies but she tried her best for us i believe although she often asked us to let her go, but we did have some laughs and even got her drunk on her birthday with vodka laced fruit pastilles, but when i read some stories i have so many mixed emotions from the fantastic stories of courage to the devastating hopelesness felt by some families and sufferers, i thank kate and her book for giving us the chance to help her fight , youll never know how much it meant xx”

Medics must stop crushing all hope, all of the time.

I believe Locked In Syndrome patients cannot be represented on a downward sloping graph (like I was) but rather the patient’s progress graph should look like this:

1) initially drop severely (as they can physically and instantly do nothing, though the time in this dire state does vary from patient to patient), after which the graph,

2) steps upwards quickly OR slowly over time, depending on the level of brain re-mapping,brain activity, patient motivation, support, therapy will improve to some degree.

They may have ‘Dr’ initials and wear white coats but they are often wrong and fail to really build on the impact of the patient’s’ (& families ) drive to get better, which will help them make progress to fight this illness (and other illnesses for that matter). The medics fear being sued, and are often ignorant of this condition, which is the real reason why medics URR on caution ALL of the time, and VERY PREMATURELY, in my personal opinion. One lady on my Beating Locked In Syndrome page on Facebook wrote:

“This is a fantastic post and this shows that although the medics do not give us much hope sometimes that there is hope to be had, I was convinced I’d lost my mum two weeks after her brain stem stroke we were told her death was imminent, only for her to improve enough that we were able to figure out that she could eye blink communicate although proving it to the doctors was difficult as my stubborn mum often refused to do it when docs were there haha , after a while we were able to get physio and therapies in place which helped immensely, although my mum 6 months later my mum passed away due to stroke related illnesses we thankfully had that time with her and time to say our gentle goodbyes, she would of been left to die if feeding tubes hadn’t been inserted at the time we discovered we could communicate x”

Doctors always assume loved-ones are in DENIAL because they are just so desperate to believe their loved-ones will improve. The consequence, doctors often dismiss the anecdotal evidence of loved ones.

Another person wrote:

“I have seen this so many times when the “Drs” have been wrong… I am right with you on this one.”

I’m actually leaving you with Allison O’Reilly’s story and Youtube video from Medstar if you still really don’t believe my evidence:

http://www.nrhrehab.org/about+nrh/25th+anniversary+celebration/allison+oreilly/default.aspx

Allison O’Reilly

Against All Odds – 2010

Until October 2010, Allison O’Reilly seemed to have it all: good health, a loving husband, and amazing friends. Little did she know that her life was about to change. After a stressful day of tending to her mother and stepfather, she noticed a severe pain in her left arm, and later felt nauseous and dizzy. She called her neighbors and they rushed her to the hospital. However, she was discharged that night with only a diagnosis of dehydration and vertigo. But the next morning she did in fact suffer a stroke.After the stroke, O’Reilly was unable to speak or move. The doctors suggested that she be moved to a nursing home, bur her friends and husband deemed that “not acceptable,” a phrase that they drew inspiration from. She was then advised to be transferred to NRH, where her true progression began.O’Reilly was cared for in every respect; she had someone to bathe her, change her contact lenses, and not to mention, great doctors and therapists. She was on a rigorous schedule on her road to recovery, with intense speech and physical therapy sessions each day. Although hard at times, O’Reilly stayed determined to beat the odds.And that’s exactly what she did.She left doctors astonished with her recovery, learning how to speak again and developing movement in her arms. With time, she was able to dress herself again, speak and eat on her own. This was truly a liberating feeling for her, as she was no longer completely dependent on others for her daily routine. She attributes this second chance to NRH, and their dedication to her. However, it was her will power and motivation that allowed her to overcome all odds and beat the nasty effects of her stroke. O’Reilly explains, “Things can change in a minute, so my message is simple: enjoy your life each and every day to the fullest. I thank all at NRH; they are gifts to me.”

Best of all, NRHREHAB (Medstar) have a big international program for rehabilitation if you’re interested in learning more about it I can get some info and someone to speak about it. So what are you waiting for, stand your ground and lets inform the medics and change stuff!!!

“A love letter to a future child or spirit.” Flower song by Kylie Minogue

“You don’t have to be DEFINED by what has happened to you, it’s what you do AFTERWARDS that counts.” Katie Piper October 2012.

Well Half Term is nearly over with my little cherubs, so my house is back to it’s ‘pre-Halloween’ state and my blog ideas just keep oozing!

It’s been an interesting week, what with The Daily Mirror, Pride of Britain Awards 2012  most notably, contributor  Katie Piper. She suffered enormously with her facial acid attack, from a former boyfriend, and has since undergone over 100 progress improvement  operations since, but she is one in a million.

People have often said to me that,

“You don’t’ want your illness to define you.. do you?”

To which I have always got enormously ‘stroke’ irritated. Why not, I think? If I died tomorrow, and my tombstone said (unlike the creep Saville)

‘I helped change outcomes and attitudes to locked in patients worldwide’,

Then, I would have turned my massive negative into a huge positive, and achieved something worthwhile with my short life.

I would made a real difference to the world and truly learnt, taught and lived. I’d have had chance to iron out some of my personality failings and re-adjust our kids to OUR massive trauma. I’d also think, ‘so what if my name conjures up my association with locked in syndrome and strokes and disability?’ I’m proud of that. I have, and will always be, passionate about helping others, affected like I was and they are.

So absolutely feel free to judge me by what I have achieved in less than 3 years from my actual major brainstem stroke with locked in syndrome, I frankly don’t care.

How poignant that Katie also said, “Having a scar means never having a day off.” Well I also agree with that. Although, my emotional scar is not visibly obvious to anyone else.(Thanks fellow ‘strokee’ Sue Sandars for reminding me of this on Facebook. Incidentally, Sue and I both also agree that all disabled people should be in the future referred to as ‘Less-able’ individuals.)

Then on a separate occasion to the Pride Of Britain Awards, I was totally floored by comments made from the iconic Kylie Minogue singer on the BBC Breakfast just today. Our very wonderful Kylie was talking about her new album, ‘Kylie, The Abbey Lane Sessions’

It’s a remash with her old back catalogue with just one new track – Flower.

This is a track is described by her as a,

“Love letter to a future child or spirit.” Her song was  inspired by her need to leave some comforting words of herself, and her attitude, as a woman who is currently not a mum. I guess that she too brushed death after her own dreadful cancer scare and treatment. However, how lovely she put her thoughts and it’s well worth a listen on Youtube.  Here are the lyrics.

Wrapped in a blanket of hope
Asleep in the of dreams
My step into eternity was not what it might have been
Or not at all
For who knows which way the wind is gonna blow
I’m waiting for your gentle whisper

Distant child, my flower
Are you blowing in the breeze?
Can you feel me?
As I breathe life into you
In a while my flower
Somewhere in a desert haze
I know one day you’ll amaze me

An act of balancing, imagining the moment I can be
Looking deep into your eyes
For now a mystery
Or not at all
For who knows which way the wind is gonna blow
I’m waiting for your gentle whisper
[From: http://www.elyrics.net/read/k/kylie-minogue-lyrics/flower-lyrics.html%5D

Distant child, my flower
Are you blowing in the breeze?
Can you feel me?
As I breathe life into you
In a while my flower
Somewhere in a desert haze
I know one day you’ll amaze me

2 hearts in the hands of time
Your love bleeds into mine
I’ll be with you forever
And give you everything I am
Want you to understand
It’s you and I together

Distant child, my flower
Are you blowing in the breeze?
Can you feel me?
As I breathe life into you
In a while my flower
Somewhere in a desert haze
I know one day you’ll amaze me

It got me thinking, that most people may not realise that I finished ‘Running Free’ (www.gonnaflynowbook.com), 6 months after leaving hospital (available on Amazon/Nook) because I HAD to leave my kids a lasting legacy.

I knew I could have easily died on 7^th February 2010 and that I’d danced with death many times over my 8 months in hospital, so I was utterly desperate to leave a lasting testament, in my way words, as I saw things, in case I was to die young.

Quickly after starting my first book (only 11 months after my initial stroke), I realised how powerfully inspiring my experience would be for others around the world, who are were fighting their strokes, so I founded and established my Fighting Strokes charity. That was only January 2011.

But don’t ever forget that my initial inspiration and drive to write, was my three cherubs who were very young  (only 6, 9 & 10) at the time. Their obvious huge emotional loss and feelings they would harbour, in the future, as adults or parents themselves. I was obsessive that I finished my first (and second) book quickly. You see I was utterly convinced that I die of pneumonia and that my life at home was only a dream of wishful thinking, as I was actually in a bed with 24 hour care in a care home. (I was suffering post traumatic stress for months after leaving hospital and convinced until a doctor told me the risk was now reduced, since I wasnt lying in a bed all day.)

My children would now have to have something tangible to hold on to, when their motherly memories  faded, in the future.

But Kylie had some more pearls of wisdom this morning:

She said,

“What is normal? I’ll never be the same, you have to think it is your ‘new’ normal, you have to come to terms with it.” Oooh, that was very interesting, especially coming from her.

She also talked about how she got really ‘angry’ (Kylie doesn’t really do angry), when her people would give her endless “options”.

She didn’t want options, she just wanted the cancer to go away. I was always in denial and never accepted my stroke or disabilities (unless I was trying to pull a fast one with my Blue badge!) I guess there were never options in my mind,  I was just ALWAYS gonna beat the after affects of this and fight relentlessly back to ‘normal’.

Then she said, “to cope with cancer, you need to become a bit selfish. But that’s not in my nature, so I wrote kept working hard.”

Well, I admit I was selfish and I’m sorry. (Unlike Kylie)

My desire to get better at all costs. To leave a lasting legacy for my MY loved-ones, but I also to cope by giving back to others, with my books and charity. I know I’m getting emotionally better now, though I’m sure I will fall off the wagon at times, but I fully respect Katie and Kylie (and what’s more, it’s not cost a me a penny in Shrinks!!!)

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Todays news on Steve Wright:

Facebook is not the cause of low self-esteem — it could simply mean that people with low self-esteem are more likely to friend strangers than those with happy and healthy offline lives…. interesting.