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Hairdressers back washes cause some STROKES! 4 X TIPS!

I am increasingly worried about the relatively innocuous hairdresser back-wash. I think they must contribute to a significant number of strokes around the world.

Then I read about this in the stroke e-bulletin recently.

I then read there is there is a vertebral artery stenting trial VIST going on now.

They say,

‘Narrowing (stenosis) of the vertebral arteries in the neck, which supply blood to the back of the brain, is an important cause of stroke.’

Here is a diagram of a stenosis.

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They team behind VIST also say,

“This causes posterior circulation stroke which accounts for 20% of ischaemic strokes.’

The moral of this blog:

1. Have a dry cut.
2. Stand up at sink
3. Use a forward facing sink
4. Become a hippy

😉

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#Stroke alone…have you felt alone? Are stroke charities doing enough?

No one should have to go through stroke alone. It made me think of my own emotionally turbulent 2.5 years after the bomb exploded in my own brain in 2010.

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Claire wrote:

‘I don’t feel alone with family, but with regards to friends, yes I feel alone.’

Me:

‘Me too/ It’s why I needed social media so much x.’

Adrian:

‘I tend to keep my daily struggle to myself quite often since my seizure in November. Before that in the 18 months post stroke I was more open.’

Simon:

‘I feel alone with my wife. I have tried talking to her but she doesn’t want to know. Friends and siblings also don’t seem as interested but my daughter is like a rock. She is only 8 years old. Our relationship is strong and it is unbreakable now.’

Claire:

‘I’m quite open and will talk about it all if people want but I used to have people before my stroke would ask me all the time if I want to go out. They would also ask me to talk by text or phone, but now I don’t get the time of day. I like to meet up with new or old people.’

Eddie:

My family are great but they take the Mick out of me for the amount of Facebooking I do. I tell everyone that I have worldwide friendships with other survivor, who listen, support, encourage, rant without going in a huff, talk politics etc. I don’t have the pleasure of meeting old friends/colleagues for a chat to put the world to rights, as they have all disappeared. Life is good.’

Claire:

‘I do like chatting to other stroke survivors but there is nothing like a good face – to – face chat with someone. I went through post natal depression and the depression from stroke was so hard and family were supportive but most of my friends were none existent.’

Iain:

‘I’m alone.’

 

Amelia:

‘Sometimes yes, Im alone.’

Karen:

‘Some times I do as well that people who’ve not had a stroke do not understand.’

Michelle:

‘Sometimes yes, only had a few friends and some were very two-faced about me after my stroke.’

Me:

‘Eddie my face to face friends take the Micky out of me too. Do I care?’

Me:

‘Iain, sending you a virtual hug.’

Michelle:

‘Not many people seem to bother with me or ask how I’m doing or invite me to theirs or take my out. They don’t seem to like the responsibility of my wheelchair.’

Michelle:

‘I’ve lost a few but I’ve gained a few.’

Me:

‘Ditto.’

Michelle:

‘You find out who your real friends and family are.’

Kay:

‘Nope, not alone.’

Theresa:

‘Feel alone especially when I’m with my family. I feel like I’m on the outside looking in.’

Me:

‘Yes I get that. I also feel that because I look like the old me, people assume I am the old me. It irritates me. But I think they are often very selfish and wrapped up in things that just aren’t important in life.’

Theresa:

‘Oh Kate you have described it exactly.’

Anna:

‘Very alone at times, my son had his stroke at just 1 day old.’

Sharon:

‘24/7 no family, just me and my 13 year old special needs son.’

Kate:

‘… Yes I am alone… I still go out with old friends – particularly difficult when they are discussing how stressed out their lives are and moaning about how difficult it is to lose weight etc etc. They should try doing stroke rehab! Moan over!’

Lisa:

‘I feel alone my family don’t understand. They think, ‘You’re better now, get over it, it was so last millennium type of attitude…’

Jacki:

‘Only someone who has felt the agony of stroke and the terror you now live with can really understand what life is like now. Stroke leaves you alone in your mind and body.’

Lesley:

‘Yes even close friends tend to chat less to you and make you feel isolated..’

 

We seem to be focussing on stroke prevention.  What about helping stroke survivors to adapt, flourish and improve?

WE NEED TO DO MORE FOR STROKE SURVIVORS!

P.S Keep an eye out for my 3rd book in November 2014 – I Am Still The Same. A self-help stroke guide on ebook initially.    20140306-195415.jpg

 

#Neuroplasticity: The Remarkable Ability of Our Brain to Adapt

Source: http://www.topcounselingschools.org/neuroplasticity/

The part of this blog I’m personally most interested in is:

‘Neuroplasticity allows our brain to adapt throughout life under normal conditions, but is particularly important after brain injury from stroke, accidents and other causes.

3 — the number of stages at which Neuroplasticity occurs.
Stage 1: Fetal phase through until adulthood, when the brain grows and organizes.

Stage 2: Through adulthood, for memory and learning.

Stage 3: After brain injury, to regain lost functionality or leverage what is left.

Plasticity allows for specific body or brain functionality as represented in the brain to move to a different region of the brain, if and when necessary.
For example, after a stroke, body functions such as limb use can be recovered from paralysis through new new connections formed between intact neurons. This process requires stimulation through physical activity.
New neurons can be formed; they do not stop being created at a particular age, despite previous beliefs.
Neurons can form new inter-connections.

Synapse structure can change.
The areas of the brain that represent expertise in some skill or knowledge will grow, usually in thickness.

According a 2006 study, the hippocampus of London taxi drivers was, on average, larger than that of London bus drivers. This is due to the hippocampus being the part of the brain dealing with complex spatial information for navigation — something taxi drivers are more likely to require, whereas bus drivers have predetermined routes.

Similarly, a 2004 study showed that bilingual people have a larger left inferior parietal cortex than monolingual people.

Musicians who practice at least one hour per day, according to a 2003 study, have higher gray matter (cortex) than amateur musicians, who in turn have more gray matter than non-musicians.

Music skills are represented by multiple areas of the brain: motor regions, anterior superior parietal areas, inferior temporal areas.
German medical students researched in a 2006 study showed in learning-induced changes in two parts of their brains (parietal cortex, posterior hippocampus) 3 months after studying for exams — compared to students not studying for exams.’

I say this all means,

‘Not promises, just possibilities.’

#MothersDay 4 years on…. A mothers love & tribute to I, H & W.

Who’d have thought it?

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4 years ago – coma, life support, then Trachi, PEG, catheter with the real prospect of life in a nursing home and crucially away from my kids?

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The separation anxiety from them and the realisation of perhaps being parted indefinitely from our kids then aged 6, 9 & 10 was completely UNBEARABLE and left me with a longing, few have EVER understood.

That was quite possibly, and hopefully will always be, my worst ever Mothers Day, in ICU back in 2010.

Make no mistake about it.

* Forget the obsessive running.

* Forget the importance of social media in my own recovery.

* Forget about my passionate need to provide ‘no promises, just possibilities’ for others now, who suffer like I did.

(Plus try to change the world about all the myths surrounding locked in syndrome progression.)

My basic MOTHERS NEED to be back with MY KIDS, after WEEKS & MONTHS of separation, ACTUALLY SAVED MY LIFE IN HOSPITAL & drove my relentless spirit and self belief.

Fact!!

However, fast forward my amazing last 4 years!

We have all bounced back and seem to be finally thriving in every way.

I’ve learnt:

1. Our kids are more resilient than you think.

2. I have accepted and cope better with all my own emotional baggage, as do they.

3. There have been huge family tantrums and tiaras, all round. Then combine that with adolescent hormones!!! EXPLOSIVE!

4. There have been MASSIVE ups & GIGANTIC downs, but we have a bond, which is totally unbreakable, close and solid. My mothers love is truly unconditional.

I shall look forward to hopefully getting any sort of random act of kindness today, with some sort of home made card!??

THANK YOU INDIA, HARVEY & WOODY for giving me the fire in my belly! 😘😘😘

.

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Unlocking the myths of locked in syndrome

There are a plethora of books available to read on the subject of locked in syndrome.

The most famous was ‘The Diving Bell & Butterfly’ which was an award winning book and film.

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However,  I have to say, the content did absolutely NOTHING to inspire me in hospital. (Sorry) But there have been many antitheses to this remarkable piece of non-fiction, though uninspiring piece of writing.

From my own ‘Running Free’ (Amazon 2011)

 

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to Pete Coghlan’s book ‘In The Blink Of An Eye,’ to Richard Marsh’s book to Kate Adamson’s book ‘Paralysis to Power.’ to ne a few.

Latterly, all our locked in syndrome books have been incredibly practical, insightful and candid and have blown apart the supposed ‘death sentence’ notion, that is locked in syndrome. (LIS) An early locked in syndrome diagnosis doesn’t have to always mean possibly dying of pneumonia or an existence in a nursing home, with 24hour care.

These books are yet more anecdotal evidence that a LIS diagnosis doesn’t always have to mean ‘ existing’ in a physical shell.

I also know of some very happy LIS people, not least our very own 17 year survivor (and my heroine) Ms Christine Waddell.

Sadly, some people won’t make the same sort of progress as me, Pete, Rich or Alison, because we are all individual, just as every stroke is different.

Our motivations, drive, work ethic, access to quality (and timely rehabilitation) varies enormously. As does the level of our loved-ones support.

“There are ‘no promises in life, but the possibilities could be endless!’” Kate Allatt March 2014

 

Top 15 things I’ve done since my #stroke

Since January 2011 I have been:

• Invited to Buckingham Palace Garden Party by the Lord Lieutenant for South Yorkshire on 3rd June 2014, for my Fighting Strokes charity work over the last 3 years.

• The spokesperson in national and global media for Locked in syndrome & stroke rehabilitation see my BBC Newsnight appearance

• Developing the first survivor to develop a stroke app.

• Instigating a research bid with Nottingham & Keele universities on the link between the use of early intensive, frequent and repetitive Electric Stimulation on upper limbs to reduce on pain and spasticity, and improve stroke recovery through the neuroplasticity effect.

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• An advocate for other stroke survivors not least Christine Waddell (like so many others) has new focus after her totally unique and INCREDIBLE improvement after 17 years locked in following her brainstem stroke. Let’s not forget she has done all the hard work herself and tirelessly. Over the last two years, but she was first inspired to try to fight for her own progress, after our communication over Skype in 2012. She is my hero. However, she now eats (after 17 years of nil by mouth), she dispensed with her head rest after 16 years. She operates a hand cycle machine, she stands and reaches on a plinth without being held by her physios. Incidentally, I initially persuaded her physios – Neural Pathways – who had discharged her for therapeutic therapy some 15 years earlier, to reinstate it her therapy. She, like me, even made it to Wikipedia as one of the most notable cases of locked in syndrome.

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• Helping other people in my own charity Fighting Strokes - inspires worldwide over the internet and through patient visits. We ‘don’t give promises, just possibilities.’

• writing a blog with my Arockystrokerecovery blog now gets 45,000 hits!

• Winner of the ‘Extraordinary Woman 2011′
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• “Kate Allatt is a huge inspiration.” Lord Coe Chairman London 2012 Olympic Committee

• A VIP Guest at the Olympic Opening Ceremony in London 2012 and invited by the Deputy Prime Minister.

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• Internationally Published Author ‘Running Free’ (Amazon 73 reviews so far)

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• Self published ‘Gonna Fly Now!’ (Amazon) 20140306-195200.jpg

amp; I Am Still The Same due in 2014

• Self-published (3rd book in 3 years!) – I Am Still The Same – a self-help stroke recovery guide which is designed to give practical ‘lay’ advice to all stroke survivors globally. If its not practical, I’ve failed.

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• Fighting Strokes became a coalition member of the highly influential national UK Stroke Forum in 2013

• PR expert with notable worldwide successes & International medical, schools and inspirational speaker – see also my Kate Allatt speaker site

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All #strokes ARE DIFFERENT – see for yourself!

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The bomb exploded in your brain!

These are just some of the strokes I’ve come across.

Mine was a right vertebral artery dissection and occlusion on 7/2/10 with an acute infarction of the pons. (Formally diagnosed with ‪locked in syndrome).

My MRI that was taken 2 years after my stroke.

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But some of my fellow stroke survivors wrote:

I had a Lacunar. Originates in the deep small vessels in the brain. Caused by BP excessively high & small clot forms.

Right cad have left sided. Weakness xx

Never formally received one – loads of tests – consultant said “sometimes it just happens….”

I had the same Kate, caused by a clot fro the heart. ( infraction of the Pons)

Bilateral thalamic infarcts due to embolism to artery of the Percheron

Left medullary infarct secondary to traumatic vertebral artery dissection. (minor head bump I add!)

Massive basal ganglia hemorrahage supposedly in a position shouldnt survive but hey I am here, reason never find but probably weak blood vessel which might have gone at any time with slight pressure

Blocked Carotid Arteries leading to high BP also cold and stress I wouldn’t mind it being caused by the cold but I LIVE in the highest market town in England (Buxton) at 1000ft above sea level and the year mine happened 2010 was the coldest year on record… we had -20 degrees!!!

Multiple embolic strokes secondary to right carotid artery dissection. Artery still completely occluded 28 mths later,and still suffer regular TIA’s due to misery perfusion (under perfusion of the right hemisphere,not helped by an incomplete circle of willis,whereby i am missing the posterior comunicating artery on the same (right) side).

Bleed due to hypetension

 

Right carotid artery dissection spontaneous 13/8/11 possibly due to stress& exercise exertion bike ride although was very fit& had done that route many times before

TIA no diagnosis, PFO, CVA (likely narrowing of carotid artery)

Post partum stroke 25 days after the birth of my second child. Clot in the occipital lobe. Did get diagnosed with bells palsy when pregnant with first child but I guess that could’ve been a tia, will never know now.

Bleed in the white matter

VAD caused by unknown trauma leading to a massive brain stem stroke 4 years ago…still cannot walk and right side affected…this was at the age of 44…worryingly I had visited a chiropractor the day before who had performed neck manipulation.

Never formally received one although I heard a senior physio talk about a cerebellum stroke. I’ve put it down to stress caused by losing a major contract two weeks earlier (I’m a self-employed writer/journalist).

Never had one, just one of those things!

Was a clot though apparantly

Brain stem bleed, 7 years ago when i was 30 was locked in for 2 months, but all good now just a few minor things well I see them as minor

Torn artery in neck, blood clot…stroke…

Joanna Mulaku bacterial Meningitis And septicemia caused Swelling of my brain. And lead to a cerebal right infarct

Sticky blood,clot to right parietal lobe, I think haven’t looked for ages. possible hole in the heart as have had one stroke either side

Right sided cerebral artery dissection. Very rare and no cause found! Jo x

Affected down left side, bad infection in heart valve which i had replaced,9 months after developed epilepsy, due to stroke and scarring on the brain.

Left sided haemorragic stroke , brain swelled on 3rd day and caused loss of use of arm and leg.

Left vertebral artery damaged led to brain stem infarct

I have a left-tailed paralysis. My left arm is spastic and part of my leg. Mentally i have nothing. All comes by endocarditis.

6/5/2012 atrial fibrillation with p waves leading to dissected carotid artery left sided weakness #fighting stroke hard

AV in cerebellum – left me without sight, speech , balance, co-ordination all affected but most partially recovered!

Fibro muscular dysphasia ( narrowing of arteries) discovered after strokes, one caused by clot in right carotid and has left me with paralysis on left side. other stroke on right side base of brain, which has left me with permanent dizziness. The FMD means I have angiograms each year to keep an eye on it’s progress.

Brain stem stroke at 48,was fit and healthy. Total occlusion of Basilar artery. No real reason found. Very small PFO found but they aren’t convinced it was that. It could have been a CAD as I was visiting a chiropractor a few weeks before. It didn’t show on the CT but apparently sometimes it doesn’t.

Brain tumour, subarachnoid haemorrhage. Couldn’t walk, talk, now have epilepsy, brain damage, memory loss, balance problems, emotional lability

Left side Lacuna stroke caused by high blood pressure, which in turn was caused by Takayasu’s Arteritis – which I’ve had 35 years.

Brain Stem/Pons Bleed probably due to weak vessel and high bp although I have a theory that radiotherapy on lymph glands in my early 20′s may have weakened vessels…..who knows. Few problems now but have learnt to live with them.

All so varied isn’t it? No wonder there are no hard & fast rules for stroke & we all recover at different rates. But it isn’t just about the injury.

Patients’ own motivation (and their spirit), their work rate, their access to early/quality intensive therapy and the attitudes of the loved-ones, are all vital factors in my experience too.

Lets focus on what we can now do and help ourselves change. Set goals (and be ambitious!!)

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It’s just 3 W’s, but here’s 10 reasons why the web SAVED MY LIFE & now its giving others POSSIBILITIES! #stroke

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I am a HUGE supporter an advocate of #stroke rehabilitation which Chris Tarrant (presenter for Who Wants To Be A Millionaire) may now need after his mini-stroke today. Sadly, his stroke wasn’t a one in the million occurrence, but actually happens to 1 in 6 of us, according to the World Stroke Organisation.

But I’m also a very strong advocate of the world wide web, which is 25 years old today!

Here are my top 10 reasons why.

1. Reach – I was in a hospital bubble of Osborne 4 at the Northern General hospital in Sheffield. With no communication with anyone outside my hospital bubble of visitors and nurses, this was ESSENTIAL.  (Alright it wasn’t such a good idea to Google locked in syndrome from the nurses station computer back then!)

2. Anonymity – I looked a freak with my grey hair, droopy face and inability to mange my own saliva. (Hooch-the-dog  from Turner & Hooch, springs to mind!) Seriously, because people couldn’t see me, they didn’t avoid, patronise or feel sorry for me.  My humour shone through over the web.

3. Competition – As you will know I’m a competitive bugger.  If I posted publicly I would ‘sit on a plinth unaided for 3 minutes in physio the following day’, I would bloody-well  do it. I’ve never failed in my challenges and I wouldn’t now. (Actually I’d do it for 5 minutes just to show off, then for 15 minutes the following day!)

4. Real-life-soap-opera! – Alright this is not strictly a benefit of the world wide web, however our regular ‘matrimonials’ over my Facebook Wall, were hugely entertaining to my ‘page-Likees’, whilst I was in hospital.   I didn’t realise my ‘Beating locked in syndrome’ page was an ‘open’ page for anyone to see at that stage.

5. At night – When all my patient and loyal visitors went home for the evening and I started to distract myself with ‘crap TV’ my mind always played over time. ‘Would I die?’ ‘Will I ever walk again?’ ‘Why hasn’t my former boss been to see me?’ ‘Are my kids in turmoil.’ ‘Will I ever be able to eat again?’ ‘How can my marriage survive this?’ However, Twitter and Facebook gave me company and support when all my support had gone home for the night.  It helped me keep all my ruminations at bay, which could have so easily gone out of control.

6. Support groups – Since I left hospital, I have found solace during my many, many ‘downs’ with people who have had strokes or affected by stroke, themselves.  You can use the web and specifically social media, to seek refuge, information on helping you progress more or recover from sites like – Parenting After Stroke, to self-help groups and other open & closed groups.

7. Telehealth – My previous blog explains this. In summary, telehealth will improve stroke patient outcomes AND reduce stroke treatment costs, I believe.

8. Stroke Apps – I am developing an App (Feel free to email me about – kate@fightingstrokes.org) for stroke recovery, not just prevention, of which there are many.

9. Global reach - My Fighting Strokes internet-based charity allows me to reach the global stroke community through our Fighting Strokes website and presence on Facebook & Twitter.

10. Research & film? – A typically cheeky tweet was what was responsible for me working on a stroke research project which was submitted with Nottingham & Keele Universities, in January 2014.  What’s more I may have just a screen writer for Running Free (Amazon) which I found the same way!

So the web is phenomenally powerful and literally saved my life, although I distinctly remember getting ‘repetitive-usage-injuries’ on my forearm from overuse the first time I had access to the nurses station computer, with my arm  supported on a board!

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#Telehealth – 7 reasons why it will improve #StrokeRecovery & reduce medical treatment costs.

According to Wikipedia:

‘Telehealth is the delivery of health-related services and information via telecommunications technologies.

Telehealth could be as simple as two health professionals discussing a case over the telephone or as sophisticated as doing robotic surgery between facilities at different ends of the globe.’

Telehealth:

1. Could be Preventative – with strokes affect 1 in 6 people every year this is already v important, not least from a well being & economic cost point of view.

2. Could be Promotive – could promote patient progress improvement otherwise known as stroke recovery

3. Could be Curative – this is vital from a patient point if view with so many having strokes so young! I was 39, and old by some standards, but I have a career now and an earnings ability ahead of me. That means, I’ll be contributing to the economy!

4. Is widely accepted, that we have long known that we must take a MDT (multi disciplinary team) approach stroke recovery.

So in every day speak, we need the Occupational Therapist,
Neurophsioterapist therapist,
Speech therapist &
Neuropsycologist to work better (with the patient and loved-ones) and each other & Telehealth would help them to do just that.

How?
They would all be able to chat more so that they can improve patient functionality, (without the need to physically meet), thereby improve the well-being (or quality of life) of the stroke survivor, including locked in syndrome sufferers.

Clinicians would be able to take patient a far more joined up approach to stroke rehabilitation in the acute and community settings.

5. Telehealth would mean the MDT work is far more timely after the initial stroke, and we all know early intervention is key!

6. Telehealth could be used to motivate patients to do more rehabilitation exercises at home.

We know it’s all about repetitive, frequent & intensive exercises post stroke now. As I did with my obsessive ‘willing’ of my 1st book (non-clinical talk)

This is in stark contrast to the ‘task related’ actions like getting dressed, making a cup of tea or making a bed, from previous stroke recovery practise.

6. Telehealth can be used to chart the progress improvement a patient makes, which itself can be motivating for the patient. Therefore, treatment can be more goal-centred.

7. Telehealth can be linked to social media. Essentially online support groups like my own Fighting Strokes page on Facebook – closed or open – which can be accessed after a stroke, to help with the devastating ‘hidden sides’ of stroke. My only caveat to this is that telehealth must not entirely replace patient to therapist or patient to patient face to face contact.

We need to be able to proactively invite struggling patients into physical meetings to help them with their hidden sides of stroke.

Please feel free to comment or feel free to book me to speak about what I’ve said on this – Kate’s speaker site as I’ve worked this all out all by myself!!! 😉

Notes:

Kate Allatt founded her internet-based charity Fighting Strokes Facebook page and is the author of the internationally published Running Free and Gonna Fly Now! Amazon/kindle/Nook

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Exactly 4 years on… A #stroke survivor in Dubai – the highlights!

A dash to see my old Uni chum in Dubai and then crashing with Mark’s sister in Abu Dhabi, it was 6 days without work, our kids or dog who were in 4 different countries!

Yippee!!

My old chum Chezza brunch with this incredible view at the Berj Al Arab

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Ahh the lovely Lia and Joely

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Walking I’m the beach in Dubai

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The Dubai Mall makes The Trafford Centre look like a corner shop with enormous fish tank and ice skating rink!

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The worlds tallest building astonishing. Berj Khalifa with Phil too! (And the dancing water!)

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One of our highlights was ‘naming-that-tune’ from my own Spotify playlist, with a bottle of wine and gin ‘n tonic with Cheryl and Phil.

Meeting Jo with Phil at the Mugg and Bean in Abu Dhabi

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A day trip with the kids to the Corniche. If I’m not ‘walked-like-a-dog’ each day, I’m not happy.

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Jo’s kids who have been so resilient but missing Henry from this pic!
His comedy-drama performance at his school was incredible. So confident with great comedy timing!

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Went to the Meat Co. in Abu Dhabi with the most succulent fillet steak I’d ever eaten.

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Staying with Jo aka Twinners! In their fabulous pad.

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A quick presentation to a secondary school in AbuDhabi with my old family friend Maria Day. Will they be the next generation of Middle Eastern medics? So much fun.

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Not every thing we do is successful. A trip to the Grand Mosque was a bit of a damp squib. In fact I actually spat my dummy out! I couldn’t get a robe because I had no ID. Gutted. It looked beautiful from the outside… Next time!

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Walking the Formula 1 Grand Prix Marina Circuit while the boys cycled.

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Finally, a one night stop off in Sheffield before catching a flight to Ireland to deliver a keynote speech at the Cork Stroke Support conference 2014, with over 300 people!

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