Pauline's Story - Stroke aged 28

"Two years ago, when I was 28, I had a stroke. I was on maternity leave from the rapidly expanding cleaning company I had set up in 2013. My three children were aged 10, 8 and 4 months.

It was the 25th October 2015 and I was a passenger in the back of my then partner’s car. He had just taken the driving seat over from me when I heard a strange high-pitched ringing sound – which at the time I thought was radio disturbance, I asked him to turn it down. He told me the radio wasn’t even on and then my vision suddenly went white, I felt a pain I can only describe as like being hit over the head with a heavy object. At first, I thought maybe I was just having a dizzy spell. I quickly realised my eye sight had not adjusted back again and I was having difficulty focusing, I felt violently sick.

When we got to A&E I had completely lost my balance and was walking into cars and people. I had lost the use of my right arm which just felt like lead. When we got to the reception desk they asked what my name was, I couldn’t remember. I couldn’t even remember my baby daughters name. It was then it occurred to me that I had possibly had a stroke.

Unfortunately, because of my age the doctors were reluctant to diagnose or even check for a stroke and I was sent home diagnosed with a migraine. After sleeping for 72 hours I still could not see properly. All the other symptoms had subsided but I had lost a significant amount of my peripheral vision and had a very apparent visual disturbance in my line of sight. I went to see my GP and on explaining my symptoms I was sent for an urgent CT scan which showed I had suffered from an Ischaemic Stroke. I was left with permanent sight loss.

My recovery has been frustrating. I was discharged from hospital to care for my 3 children, with no care plan. The support offered to me was not suitable. I had lost my ability to drive, and with that my independence. My partner did not understand my sense of loss and mood swings. He became physically and psychologically abusive towards me. He acted as if I had somehow brought it upon myself and that I was now a burden, our relationship ended. I became very low. Friends and family could not see the hidden effects of my stroke. When faced with becoming a ‘carer’ people’s demeanour can change. That was a very hard side of stroke for me, believing I was a burden to those closest to me, as though it was somehow my fault. Professionals implied as I was young I would adapt quickly but I felt so very alone.

On one of my desperate days (and there were many) I typed stroke support into my search engine. I came across Different Strokes, who appeared more tailored towards my situation. I joined their Facebook page and could interact immediately with younger stroke survivors like myself. It brought me so much comfort to talk to people who were living through the same nightmare I was, and to share stories and ask questions I felt I couldn’t ask those closest to me. It gave me hope.

It has since been found through various tests, that my stroke was most likely down to a small and apparently common hole in the heart called a PFO. Funding for PFO closure has been withdrawn in my local NHS trust, whilst it is decided if it is beneficial to reduce the risk of further strokes. I am therefore left in constant fear that I will experience another stroke.

A year ago, after meeting a wonderful partner, we quickly found out we were expecting a baby. The pregnancy was worrying and stressful, but again Different Strokes came to my rescue and through their page I could contact other women who had gone on to have children after their stroke. I was able share my fears and in turn be provided with stories and answers that diminished my worries. Our daughter is now 12 weeks old and we are both happy and healthy. My partner is amazing and helps with all the children as I am now unable to work, drive or read without an aid.

Looking forward to the future, and now that I have adapted to my permanent sight loss, I hope to continue to raise awareness of strokes in younger people and of course, raise money for Different Strokes. I would love to coordinate a face to face support group so that others like myself have a safe place to share their experiences and worries.

To anyone that has had a stroke I would say never give up. Whether that be looking for answers, asking for help or fulfilling your dreams. Don’t let stroke define you. You’re not alone, if only you look in the right places."

Lydia’s Story – 1 Year On…

“I wanted to update you as survivor stories are the only thing that has got me through the last year , reading them and being inspired to keep going helps me out. So as I approach a my 1st year stroke birthday next month I wanted to share again .

As I approach November the 27th I feel sadness and happiness in the same second …. it’s the day our lives changed forever , I woke that day like any other enjoyed Sunday lunch at the pub and walked our dogs in the countryside around 8.30pm everything changed in a second .

I was unaware what was happening to me but will be eternally grateful my partner Phil realised pretty quick , my face drooped , my speech was slurred & incoherent and I couldn’t move my left side , I was totally paralysed . He rang an ambulance and the speed at which Hereford county hospital reacted is the reason I am not more disabled or dead . I had a large hyperdense blood clot in my middle cerebral artery , the clot was dispersed in hospital and I was admitted to the stroke ward .

Monday morning I opened my eyes and my whole world had changed , noises were loud terrifying and strange , colours were different brighter more intense and painful on the eyes . My left arm was numb and my hand refused to move no matter how hard I tried to move it . Facial expressions meant nothing to me and simple conversation was confusing and tiring. A fire alarm went off whilst in hospital and I screamed and cried like a baby, a lovely nurse cradled me in her arms- reassuring me all was ok this was a noise I’d remember eventually .

My blood clot formed in my heart not a DVT or for any reason they can find other than the cardio team found a hole in my heart . Funding for this heart surgery has been cut so I have to live knowing this could happen again but that’s a whole other story .

Medical teams put me on blood thinners , statins all which made me feel so ill but reduce the risk of a recurrent stroke something you just have to deal with , side affects can be brutal from these meds .

My life changed in a day , I didn’t recognise my children couldn’t remember which one was which , remember their births or their childhood . Things have come back over time but it’s still hazy.

Lights now hurt my head and the last 12 months have seen me go onto to have seizures , hemiplecic migraines are terrifying they cause facial paralysis and I have no warning when they are coming.

I had the Hereford community stroke team come in for 8 months but I’m deemed as plateaued in recovery aka I may stay as I am .

No one tells you about the how insanity of fatigue is life changing , being to tired to lift your arms or crying all day for no reason . Being physically unable to process thoughts or conversations . I’ve never been a crying kind of person but since the stroke my emotions are all over the place . Some days manic repetitive thoughts , fast speech and inability to sit still , other days crying on the couch all day not wanting to be here .

My stroke has taught me I’m stronger than I ever imagined because of my partners support he’s my lifeline my soulmate and the one who’s bore the brunt of this tragedy , my children are my life and they’ve also had to witness the brutality of brain injury , stuttering getting words wrong , learning how to walk again and use my left side , confusing things, the noise 2 lads bring to our home at times has been unbearable and my sons spend more time with their dad now, something I’ve just had to accept as I recover- it won’t be forever, but it’s helping me get better quickly .

Seizures were terrifying but my brains way of trying to heal itself – something to just accept as my new life now . I have changed and I’m finally beginning to be ok with that .

I’m scared of the outside world and now only feel safe with my partner around. I’m scared of noises , lights and people , I struggle to recognise facial expressions and the way I communicate has changed , I’ve gone from a chatty outgoing lady to a quiet thinker who survives via social media and quiet dog walks . I like quiet now , no noise, just peace .

Our lives have changed forever but I am alive , I am getting better every day. I need more surgery very soon and the fear of stroke will plague our lives. One day I may sadly pass away due to it and we deal with that it’s the unspoken conversation we both know is there , an mca stroke doesn’t have great prognosis long term.

Time is the biggest healer there is , for anyone who has suffered the cruel twist of fate and suffered a brain injury they will know that time is such a precious commodity , this last year has been an insane learning curve . I’ve learnt to walk again at 35 , I’ve learnt to plan my time and gather my thoughts , it’s hard going but it’s possible .

Stay strong stay positive , ride the rollercoaster of emotions you will feel on a daily basis it will get easier .
Fatigue needs management and it’s an ongoing process for us to learn how different activities affect me .

The Different Strokes group has been my lifeline , they are a charity and their Facebook page is full of stroke survivors supporting and encouraging each other on a daily basis , I’ve made friends , use these sites and groups and use social media . It stops me being lonely and it helps pass the time as I get better !!

Here’s to the next 5 years … ”

Jude's Story

"From the age of 22 I lived and ran pubs, so I used to drink and smoke a lot. I also looked after horses and used to go to feed them every day. On March 4th, 2003, I didn’t turn up to feed the horses and my friend who owned the stables became worried and phoned my dad, they found me in bed and knew instantly that I had a stroke, I was 34.

I was taken to Warsgrave in Coventry and they operated, it took 7 hours. I was in Hospital for 3 months then went to Leamington rehab, after 3 weeks in rehab I returned home but I had to continue going back every day for 2 years where they taught me to talk again and do everyday things, like cooking. My right side was affected by my stroke, my face my arm and my leg were affected and my Surgeon said that I’ll always be tired which is so true. My leg still aches.

Now, 14 years on I work behind a bar for 20 hours a week, I am restricted because of my health and I now don’t drink behind the bar. There were many times when I was ill that I felt I was rock bottom and thought about just ending my life. I still struggle and get depressed but I’m a survivor. I would love to talk to people who have had the same thing as me, sometimes that helps. I have been on Different Strokes Facebook for years and I love listening to other people’s stories.

I do not have any ambitions or goals but just to be here every day is a bonus. I love my family and my grandkids and love my life most of the time."

Solange’s Story – Caring for Michael

“A great professor said to me the other week, ‘the word stroke is a small word but it has such a devastating effect” How true.

This is a little insight of a very clever man and the life changing stroke he had, together with the effect on me, his partner and now carer. I hope that this true account will help others in a similar situation, and to acknowledge the hard work and anguish suffered every day by carer’s.  The forgotten individuals who go without a thank you and unheard so much by so many.

Michael always had one fear above all: “The one thing I do not want to lose is my mind” Solange what will I do if that went?”  What will you do with me when I have taught you everything I know?”

Monday May 30^th 2016 at 07.19am was when our life changed forever.  In literally a split second our life went from love, laughter, making plans for our future.  The places we were going to visit, getting married, living in Portugal and where we going to move to the next, it all changed.

We had just returned from a fantastic trip to Italy, taking in all the sites.  Florence was spectacular and we had the most amazing time there together.  We really did get to know each other more than ever and both decided that we were never going to be apart, Michael said that the “only way he would ever leave me was if he died”. I truly believed that, Michael is an honest, honourable, decent man.  Boy, if only I knew what was going to happen less than 48 hours after our return from Italy?

Do I blame myself for not truly recognising the signs of a stroke?  It may sound daft, but my Pug dog had had a stroke years earlier that left him with seizures and a terrible hunger. Was it my fault, should I have insisted that Michael go to the doctors and have his blood pressure checked or go to A&E to check out the pins and needles he had in his left arm? We put this down to either all the tolls barriers we had to go through, or the fact that we had just moved home again and all the lifting and shifting.  Life works in mysterious ways, and I can’t turn the clock back.  I can only deal with the now and part of the future.

That’s the problem, the future is so uncertain, for all of us, let alone someone who has had such a massive stroke that stunned and shocked all the doctors we saw in Portugal, with the words “It is a miracle he is alive, this kind of stroke would normally kill a person”.   That’s where I have to give myself credit and recognition on the fact that I acted so quickly when it happened, seeing Michael go from a strong lean athletic individual to a quivering wreck, whose left arm lay limp and whose leg could not move and the urine was just dripping everywhere over the bed and floor!

Nothing prepares one for this, you don’t know whether to cry or scream. I had to keep calm and instinct kicks in as well as adrenalin.  Quickly I phoned the local private hospital but as I thought they suggested phoning the emergency services.  Now what you must bear in mind we are in Portugal, I am not fluent in the language I had taught myself the basic phrases, alas not medical ones.  I spoke fluent French and some Arabic, but mastering the Portuguese language really is difficult. We did not have any family or close friends nearby so it really was just down to me. After what felt like an eternity, it was about 20 minutes, the emergency services arrived.  Thankfully one of the Bombeiros (the Portuguese Fire Brigade) spoke English, it was not looking good.  Michael had no movement in his left arm or left leg. We tried desperately to dress him in trousers but it just was no good.  Michael didn’t have jogging bottoms or pyjamas; we just had to do our best and cover him up and put him in a wheelchair.  Little did I realise on that Monday morning at 08.10 May 30^th that Michael would never walk again or be of the same mind ever again.

I cannot remember another time, apart when I was about to give birth to my son 28 years earlier that I got dressed as fast.  I managed to quickly gather important ID documents, which thankfully, were always in the same safe place and together.  Michael had no Medical Insurance and I had no knowledge of public hospitals in Lisbon.  I really did feel alone and so apprehensive, scared really is too strong a word, despite the situation I was in. Anyone who has been through a similar experience may have an idea of where I am coming from.  Having no family or friends I just had to get on with it. By God that is exactly what I did.

When we reached St Francisco Xavier Hospital in the centre of Lisbon Michael was still very coherent and understood everything I said and was lucid, that is what I find the most difficult to comprehend. Now, speech is almost gone!  He spoke coherently to the triage Doctor and even admitted what we were doing at the time of the stroke, it was like something out of a movie or a novel, it was the classic, “Well Doctor we were having sex at the time that the stroke occurred”  Really? It could only happen to me! Dear reader you will realise that despite everything, I refused to lose my sense of humour.  The other thing I refused to lose and still refuse to lose, is HOPE, where there is life there is hope. By 11am on Monday May30th 2026, Michael was no longer the lucid, funny, extremely intelligent man I had met. He really was a shadow of his former self.  This was when all the tears started and the shakes began, I felt so sick and alone and I have to now say scared.  Scared for Michael more than me, what was the future going to hold for him, and selfishly for me too!

Michael rapidly deteriorated something I could not get to grips with. Infection after infection would not eat or drink.  He got sepsis and I really thought this was it; I cannot begin to express how I felt. Once again, I felt so alone and in a strange country. What the heck was I going to do?    But, where there is life there is hope.  I would not give up and took his favourite music on the iPod, podcasts on his phone, I read his New Scientist to him, and talked to him if there was nothing wrong.   I am convinced that all of this, together with the constant care, drinks, melon and more melon, custard, yoghurts, anything that I could get down him, worked to bring him round.

After 2 weeks in a specialist unit he was sent to different hospital, things alas, did not get better, and then Michael was sent to a Rehabilitation unit for 6 weeks. In between he was sent home to me, which was really difficult, I had to source a special bed, and all sorts of specialist equipment, remember it was a strange country and no help.  Not easy at all. But I am not a quitter and I did not give up.  I did manage to enlist the help of a really good English speaking carer.

To help me through it all I began to write a diary which I still keep up with to today.  Michael has deteriorated; he now cannot even wipe his own nose.  It is not easy, no friends or family to help, all assistance has to be paid for, I cannot go out when I want to, everything has to be planned, so no spontaneity.  Physiologically and physically this is hard. I have found that exercise does help me escape, in house of course.

To put in words and share with you what I went through, what I am still going through, would take far too long.  What I can say is, that my heart goes out to all the carers, it is so hard and no one understands unless they have experienced the same.

I have found that friends that sent all their good wishes, cards and offers of support when it happened, have all disappeared.  Only 2 regularly keep in touch and ask how we are. Few actually ask how I am. How strange. But not surprising.

When I take Michael out in his wheelchair, people look at me with pity, I do not want pity I want recognition.  The pavements, shops, restaurants, cafes, transport system, in Portugal is not geared toward disabled people.  This makes it even harder to socialise. The cost of care is ridiculous and I get not financial support for being his carer.  I have had to learn very quickly how to change catheters, check blood pressure, oxygen levels, temperatures, when an infection is about to take hold, deal with the numerous convulsions that Michael has.  A complete night sleep for me is rare.  I have also had to become a dispensing chemist, or it feels like it.  It can take 30 minutes to prepare all the weeks medications. We have had to move a near to the Medical Centre because of the frequent visits and the chemist and I are on first name terms.  Sourcing an adapted car has been a real challenge.

Yes life is difficult and it has changed beyond belief, my time is no longer my own, and it is a daily rollercoaster.  I look at a man who had such an active life and a fantastic brain, the shell is there but there is a sad emptiness. For me, it has made me grateful for every day of life and having the strength to carry on.

I know my story is not unique and that there are people out there who are in a worse situation than Michael and me. My heart really does go out to all of you, all I can say, is courage and strength to all of us.

What does the future hold?  Who knows, plans are being made to adapt our home in the UK to go back.  That will be a difficult journey as it will have to be overland and a ferry crossing, enlisting a nurse to help me.

Don’t give up.”