Rhiannon's Story

Rhiannon Parker-Nicholls is 19 and she had a stroke in June. We just had to share the post she shared earlier this week.

"This weekend has been a huge breakthrough for me.

After collapsing while skating in June from a thrombotic stroke and then suffering two mini strokes in July, It’s been a chaotic few months and not easy for everyone involved.

I want to thank Different Strokes for everything they’ve done. You literally have enabled me to start to rebuild my life again.

My biggest thank you goes to Alex Murphy who both got me to come down to London to your fundraiser, talked me into joining in with the abseil (yes, I abseiled down the ArcelorMittal Orbit!) and got me talking to so many other stroke survivors including the phenomenal Megan Giglia and Bailey Holland . It shows me just how lucky I am, but also that there is a way forward and I’m not alone in all of this. A stroke can happen to anyone at any age and for many different reasons. It doesn't matter if you're fit, unfit, healthy, young, old, black white or anything, it can happen and you've just got to recover from it.

Not only did Alex talk me into doing the abseil, but the wonderful lady asked me to bring my skates and took me to Queens. Because she herself suffered a stroke at 24, I knew she understood what it felt like and the complete lack of confidence I had, especially because my stroke and TIAs where while skating.

Thank you Alex for getting me back on the ice, you’ve no idea how much it means to me, and thank you to every person at the charity for helping me.

Today I got told my stroke is definitely linked to me being ill for the last five years and hopefully, with a few more tests, patience and the right specialists, I will get a diagnosis and be able to function like a normal human being for the first time since 2013. (imagine being able to skate and not be dizzy or have blurred vision! DREAM!) Thank you to everyone involved, including my beyond amazing parents who’ve done everything they can, including helping me relearn how to read and write again. Thank you for helping me start to reclaim my life back. One day at a time and little by little we’re getting there." ❤💪

Jo's Story

For me it all started with ear ache or I should say pain in my neck around my ear and sinus pain along with nausea and high blood pressure.  For several weeks I visited my GP surgery. Many doctors missed the signs.  I was diagnosed with an ear infection even though they said they couldn’t see infection but there was some swelling.  Symptomatically I had pain in my neck, sinus pain where if I coughed or sneezed it shot pain like I’ve never had, high blood pressure and I lost my balance in the doctor’s room.

At work over the next few weeks I found it took me longer to listen and process to understand things.  My employer was not understanding and just carried on repeating faster and louder.  They also missed signs something was very wrong and simply put more excessive pressure on me (but when you work for an employer that actively bullies staff I’m not surprised).

The last visit to the GP was an early evening appointment, where my ear was checked and I was told my ear was fine and I expressed my pain and the doctor pushed hard behind my ear.  I screamed and was crying and was sent away with more pain killers.  I got home and went to bed crying in pain.  In the middle of the night I woke and the pain was beyond anything I can describe.  I saw my phone next to my bed but didn’t know how to use it to get help.  I was confused. I was distressed and screaming but couldn’t talk.

I could see my mobile phone but couldn’t work out what I needed to do with it to get help. My family heard my screams.  All I could say was “pain” and they phoned 111 (I should say here my family only phoned 111 and not 999 because of weeks of diagnosis of ear infection. Had that not been done they would have called 999 with the situation).  At the ‘out-of-hours’ doctors I saw a lovely doctor who I couldn’t even see as my sight had gone.  I couldn’t open one eye the open eye was just total mist!  My mum and sister held me up, practically carrying me.  The doctor was talking but I couldn’t understand but he was very kind.  He knew in his gut something wasn’t right and he trusted that and thank God he did.  He phoned through to the hospital and came out and did more tests.

I was rushed by ambulance to the John Radcliffe in Oxford to the ENT unit!!!!!  Having rude treatment by paramedics in the ambulance I kept saying the word “pain” and had tears as I couldn’t communicate.  The paramedic told me ear infections can be painful and was dismissive, seating me in normal seat of the ambulance unable to hold my body up and the seatbelt was tight around my neck.   I began vomiting and was slumped. I couldn’t hold myself up the seat belt was only thing holding my head up!  I kept saying “pain” and I was made to try and walk out of the ambulance and I couldn’t see or figure out what I had to do to walk or stand.  My mum was holding me up.

They rudely complained and got a wheelchair.  I was slumped in it and kept saying “something’s wrong” but couldn’t explain as I couldn’t get my words out.  My mouth just wouldn’t work normally.  It felt twisted.  My left eye wouldn’t open.  It was heavy and light was horrendous and painful for both my eyes.  I was taken to a side room and examined.  Again, everyone was quite dismissive with me.  I understand it was the middle of the night and I am a younger person so stroke wasn’t on their radar but it should have been!  I was very distressed as I knew something was wrong.  Why was no one listening?  The pain was unbearable.  Then they tried to lay me down flat and I screamed and they suddenly realised something was wrong and I was in a CT scanner in what felt like minutes.  I was sat in the wheelchair waiting for a porter to take me back and he was called into the radiology office.  He came out and said to me he had to take me back slowly as it had been raining and the floor was wet…yeah i thought what the hell are you talking about.  I soon found out. I got back to ENT and was put in a private bedroom in bed and the doctor came and said.  You have three blood clots in your brain called CVST.  I just looked at my mum waiting for her to say something and for her reassuring smile as if I had misheard or to tell me all will be ok.  She then had tears rolling down her face and was just staring at the doctor.  She didn’t move.  It hit me that I had heard correctly.  The doctor said it was bad and they had been told not to give me anything as they would do this on the Stroke ward.  I was immediately transferred to the Acute Stroke Ward and wasn’t given the thrombolysis drug to disperse the clots.  This was the start of my stroke journey.  On arriving at the stroke unit, I had lots of doctors for 2 days.  48 hours flew past.  I was in agony from the swelling in my ear I mentioned earlier….it wasn’t ear infection it was swelling in my brain!  Because it was diagnosed as just CVST here the doctors openly said they didn’t know how to treat it. Nor had they seen it before as it was so rare.  There was no mention of stroke still.  My experiences from this point are varied.  But I want to make it clear – you trust doctors but sometimes you have to listen to your own body and insist things are checked.  For me a simple blood test, weeks prior would have said I had blood clots and may have prevented the extra damage.  If you see a friend or family member, or anyone unwell and just not themselves with changes to their comprehension, understanding, or nausea or pain…. these are all symptoms of stroke.  Get help!  We only talk about the F.A.S.T symptoms and think strokes only happen in old people. THEY DON’T.

It wasn’t until August 2017 (following a long wait from my GP referral to a rehab unit which was the chased by a lovely female haematologist as urgent) where the word “stroke” was mentioned.  Here I had more scans and found out that as well as the 3 CVST there was another small clot in occipital lobe which explained my vision problems.

I spent 2 months as an inpatient at an amazing facility the OCE to help me and then moved to outpatient rehab which I am currently in.  I learned art therapy and set up a web page “Stroke of a Brush” to print my artwork and raise awareness and money for younger stroke survivors.  I have speech therapy provided through the Stroke Association which has been simply amazing.  I owe a lot to them and to my therapist Harriet who understands it’s not about a simple this is what you do to read write speak and spell again.  She tailors it to you and your life and what you would normally do and doesn’t try to create a new you but helps me be me.  Harriet really gets how hard it is for younger stroke survivors and really tries to champion this.

The systems of support are not geared up well for younger or working age stroke survivors. The benefits and support systems are there but it’s very difficult to get them.  I need care, which my mum and family provide and yet because of my age and that we live in the same house my mum cannot get carers allowance, yet if I lived off the system in a house they paid for she would.  The world has changed and the systems of support need to realise strokes happen at any age. If I were married a spouse would get support but because I’m single and living with family we get no support for care.

This world needs to accept the fact that strokes are happening younger and the symptoms should not be dismissed just because a person is younger.  If I had been older and had high blood pressure, balance issues, sight issues hearing and processing issues and one-sided weakness a stroke would have been considered.

Recently in the news they discussed strokes happening in younger people.  “Great” I thought, but then the majority of people interviewed were older and talking of elderly relatives.  It all needs awareness but this angered me because the message of strokes happening more and more to younger people just didn’t come across.

Stroke has many faces and I am trying to champion that.  We may not look disabled or injured but we can be.  It doesn’t mean we are stupid or need people to explain louder or repeat themselves over, we just need more time and support networks geared up for that.  Doctors need to be educated that stroke symptoms are stroke symptoms regardless of age.

I try and see the positives, and many people give up after stroke, but I won’t.  I accept what has happened and believe me I wish it never had, but in a weird way it’s made me a better person.  I’ve learnt to paint and see there are always positives, like art helped me get the use back in my arm.  I don’t have feeling in my leg and was told this is unlikely to change but never say never!  I’m not giving up and I will keep fighting because as much as is known about stroke, there is so much not known about the brain and its recovery or why people are having strokes younger and younger.  The only way more will be known is if we raise awareness and disperse the taboos of being unhealthy, overweight etc., which is why I was happy to share my story when Different Strokes asked for my help.

Rob's Story

In December 2017 I stopped at the post office on the way home from work and as I went to get out of the car I suddenly found myself feeling very dizzy.  I had double vision and also became very hot and felt increasingly sick.  This feeling lasted for around 5 minutes and I somehow managed to call my fiancée using Siri on my mobile phone.  I have honestly never felt that bad in my life – apart from at the end of a very large drinking session!  After seeking medical advice via 111, I went home for the evening, taking ibuprofen as the clinician over the phone assumed I had pulled my neck turning to get out of the car.

The headache I was feeling was excruciating.  It made me feel very sick and I struggled to sleep that night.  I awoke the next morning and as I drove to work I automatically found myself trying harder to concentrate and perceive everything, rather than the usual ‘auto-pilot’ mode which I would normally be in as I drive to work.  As a teacher, it was the last day of school before the Christmas break and I didn’t want to bail on my students – I have a lovely bunch of 10-year olds who were all very excited.

I found the morning difficult, despite not teaching the usual English and Maths, managing the classroom was overshadowed by a large headache.  I was struggling to comprehend the brightness of my screen or even stand up!  At lunchtime I made the decision to go and see a doctor.  On this day, all of the doctors were closed for training so I visited the Walk-In Centre.  As I waited for an appointment I became very warm and I could feel again the awful pain dwelling in my head.  Within a fifteen minute appointment the GP had written an admission form for ambulatory care and sent me up to the local hospital.

Within an hour of being in hospital I had been put on an IV line for the pain and had had a CT scan.  The results weren’t revealed to me, although I was put through to another ward with more specialist doctors on.  Some time later, my fiancée heard my name as doctors were milling through a report.  She heard them mention the ‘stroke unit’, but she didn’t reveal this to me.

A stroke doctor came and explained that I had experienced a large stroke in the cerebellum region of the brain.  Within the scan a large area of material had been starved of oxygen, but they believe the stroke passed quickly, therefore no other area was affected.  It was only after I had been submitted to the stroke unit for approximately 24hours that the impact of the stroke became clear to me.

The feelings of sickness, loss of balance, some co-ordinational motions and fatigue were now plaguing my life.  I felt appreciative to have my own side room at the stroke unit, as this allowed my fiancée and I the time to really take in what had happened.  At the age of 24 I honestly feel that one of the main words I can use to describe this experience is unfortunate.  An ASD repair as a child is thought to be the cause of the stroke, with other causes being ruled out within investigation.

Since being discharged from hospital, I have been working incredibly hard to build up cognitive tasks such as video-games, reading, writing and typing to prepare me to go back to work.  I have also been working hard on various pieces of equipment to improve my balance as well as vestibular processes.

I feel that the Stroke Association, Different Strokes and Facebook have been such a help for me, as they have allowed me to process this event further.  In the future I am looking to raise money for various stroke-related projects and charities, as well as working with young stroke survivors to re-assure them at the beginning and during their journey to recovery.

Ashley's Story

"“My name is Ashley, I’m 24 years old and seven years ago whilst on a driving lesson I had a stroke. I had just turned 17 and was excited to get started with driving, but at the same time I remember getting extremely nervous and stressed before each lesson. When it happened I was actually driving the car and I can remember my whole left side and particularly my left arm and hand going cold and numb all of a sudden. Straight away I leant over to turn off the air con in the car as I thought this was the problem, but by then I had lost the whole left side of my body and my hand just flopped off the steering wheel, feeling very heavy and extremely strange. After the instructor stopped the car we both knew something wasn’t right so he instantly dropped me back home.

When I got back home, the first thing I said to my mum was “I’m having a stroke!”, I then proceeded to drink a glass of water, all of which fell out the side of my mouth. We then rushed to the local Walk In Centre, where they somehow diagnosed that I was having a migraine. Luckily when leaving I was violently sick everywhere, so we went straight to Leicester Royal Infirmary, and then later taken to Nottingham QMC Stroke Ward.

I spent around two weeks in hospital and whilst there I saw the devastating effect stroke can have, not just with the individual but also the family and friends associated. After spending time in hospital I went for Stereotatic Radiosurgery I was told to completely cure me and set me on the path to recovery.

Since leaving hospital to start my recovery, it has been a long hard journey, but I have been so determined and motivated to never give up and not feel sorry for myself and try to get back as well as I can to normality. Luckily I was so young when my stroke happened, it allowed me to recover a lot better than many older individuals. I continued in my recovery to do plenty of ‘physio’ exercises such as picking up things from the floor and using my affected side as much as possible. In fact I was pretty much forced to by my family, and I couldn’t have got to where I am now without them. So, slowly and little by little I regained function in the years post stroke, to the point I am at now where I only have slight weakness/numbness in my left fingertips and an ache/pain in my left side, and I am so happy and grateful to get off so lightly compared to others.

I have been so dedicated since recovering from my stroke to give back, and use my able bodied-ness to help others in a worse position than me. I’ve done a few fundraising events to raise money and also been to help others at my local different strokes group. Also a few big moments for me since recovering have been that I have been to university and completed a degree in a course that I love, and also (one of the biggest moments in my life) I revisited driving lessons after having a psychological fear of it for nearly six years. I passed both the theory and practical tests first time and have now been driving for over a year. Now in the next few months I have planned to do the Stroke Resolution Run, Tough Mudder and a Triathlon.

This experience has made me a stronger and better person, and the whole time I have wanted to show that stroke can be beaten and to never give up and not feel sorry for yourself, because you can achieve anything you want if you put your mind to it. I hope my story can show others that you can get through it if you really want to. We are all in this together. NEVER GIVE UP!”

Bailey's Story

“My name is Bailey and I am 15 years old; when I was three years old I had a stroke. Let’s jump back to 2005, I was just three and my Mum and Dad had just got married. Two weeks after they got married we went on their honemoon which doubled as a family holiday, we went to Spain.

One day whilst on my Mum and Dads honeymoon, I started to feel tired and unable to walk. Suddenly, the right side of my face started to drop, I had lost all movement and then I passed out.

After a few torturous days, I was flown over to Great Ormand Street hospital, where my family finally found out that I had, had a stroke. I hardly remember anything from this horrible time. However,  I look back on photos and hear stories and I have flash backs to certain thing.

I am now 15 years old, and I have had my personal struggles (don’t get me wrong!) But I will never let this disability define me. Growing up, I did not fully understand what had happened to me. In school, I was clueless to why I could not run as fast as everyone else, or why I had to wear an arm and leg lycra sock. Due to this confusion, I beat myself up everyday because of the stroke. I hated myself and envied all the children who I would rather be.

When I got into secondary school, I had developed some anxiety and found it difficult to interact and find new friends. I isolated myself, I did not realise that there are people who understand. That’s when I turned to my school pastoral team and to Different Strokes.

Once I knew that I was not alone, I came out of my shell, and became my own person. And would no let anything get in my way. Now I am accepting myself and the stroke, and I try to think positive about the whole situation. And yes, I did have a stroke, but why be sad about it when I should be working towards helping other children, who are going through the same thing as me, to accept themselves and to let them know they are not alone.”

Abbie's Story

“I’m Abbie, I’m 28, and while I was recovering in hospital I decided to write my story so that I could look back and know I got through it.  I always read other people’s experiences hoping to find someone’s just like mine.  So, I hope now this can help someone else get through another day knowing there is a light at the end of that tunnel.  If I did it, they can too!

Nine months ago… I had a stroke at 28 and here’s what happened.

I am sat on my hospital bed in a ward room that had 3 other ladies as patients.  They were all in their late 80s early 90s.

Visitors walk past whispering, peering and wondering “Why is she in here?  Surely she hasn’t had a stroke?  Why is she on this ward with my mother?”

I feel as though I am in a different room sometimes; that the curtains are magical with sound-proofed doors.

I am embarrassed; embarrassed that they think I had an un-heathy lifestyle that landed me in here, when in fact I was just ‘normal’ with a bit of bad luck. I went to work, came home, I went for dinners with friends…..so my life was never an exciting tale but whose really is?

It all began during Easter bank holiday 2017 when I was out for dinner with the girls.  I had just tucked into my dessert and realised that I had a slight ache at the back of my neck, on the left.  I went dizzy and collapsed off the chair to my left.  Then the sickness started, over and over…luckily I was positioned right next to an ice-bucket…..What a life saver!

I put my head between my legs to stop the spinning, but nothing helped.  My throat felt as though it was closing in on me and panic began.  We were all convinced that it was food poisoning and one of my friends booked me an emergency evening appointment with a GP.

We stumbled to the car but once I got in I felt OK.  Then began the migraine symptoms that I’m so used to.

I have suffered from aura migraines from before I can even remember – tingly arm, numb tongue and face, loss of vision and speech are dangerous signs, but I guess I had just became so used to them.

When we met the GP I was diagnosed with a migraine and a tummy bug and prescribed some tablets to get me through, although when it came to swallow them my throat was in bits and I couldn’t get any liquid down.  It seemed obvious to put this down to the constant sickness.

Home we went.

Finally, I was in bed and sleep would be the healer.  A dark room and a cold flannel would make tomorrow a new day and I would feel fine again.

Sleeping was easy… but then the morning came.

I tried toast and ice lollies to fill my empty stomach but I couldn’t get anything down my throat.  Why was it still so sore and why was it all such a struggle? Then the headache began.  I couldn’t say it was the worst pain I had ever experienced, but it was a pain I will never forget and in a very specific area, just on the left side.  It was as though a spark was shooting from my neck to forehead, over and over.

My fiancé Richard booked me another emergency appointment with my local GP knowing this didn’t match my usual migraine symptoms.  Then began the longest 10 minutes of my life. We live in a three-storey house and I was on the top floor.  The car seemed like a world away.  I couldn’t tilt my head without being sick and I would collapse whenever I tried to stand. How was I going to get down these stairs? On my bum!  I shuffled my way down the floors, constantly thinking “don’t be sick, you’re nearly there, don’t be sick you’re nearly there!”

Finally, I got to the front door where I was then carried to the car.  I still remember the relief when the door closed.  I was in.

Next challenge!….Getting out!

We pulled up to the doctors and I flung my arm around Richard’s neck.  All I wanted to do was fall to the floor and crawl my way there.  I shut my eyes, partly for embarrassment of who I would see while in my choice of mismatched PJs, but also because it was easier to have them closed than to try to take in and make sense of all my surroundings.

I was told to go to hospital.  My eyes were not responding and I couldn’t place one foot in front of the other. In my head I did think that they would see me back out the door when we arrived.  It’s surely just a migraine.  What else could it be? When we arrived I remember asking “Do you think I could go in a wheelchair?” before thinking that it was a stupid comment as someone else would need one more than me.  I’m only 28, but I just couldn’t walk!

Once in the assessment unit I was on the bed and wondering how long it would be until they sent me home. I was given anti sickness drugs (best thing in the world – I could move my head again!) and sent for a CT scan. The doctor mentioned that I would probably be in for the night.  I even laughed to myself, thinking, “well that’s very dramatic!”  But after the CT results I didn’t.  There had been some changes to the left side of my brain.  I was getting transferred to a different hospital who specializes in strokes. Huh?

That night I arrived on the stroke ward and everyone was buzzing around me and everything was checked.  I hadn’t had fluids in a long time as I still couldn’t swallow.  That’s when I was told I was suffering from Dysphagia; which I’d describe as a stroke symptom where your throat muscles are paralysed. A feeding tube was inserted through my nose to finally fill me up. But I can tell you it certainly wasn’t the flapjack that I’d craved for so long.

My left eye wouldn’t open.  On one hand I thought It was just me being lazy and it was easier not to open it.  On the other hand when it was open the double vision was unbearable! My speech was there but it was slurred and more for the fact I couldn’t swallow my own saliva….Who knew we produced so much?

After my MRI it was confirmed I’d had a spontaneous left vertebral artery dissection.  The doctors couldn’t tell me the cause.  I might have been born with it or I may have had a trauma but I may never know as I was perfectly fit.

At first I was unable to walk at all.  I couldn’t read or watch anything.  I wore an eye patch to make my eye work.  I slept for the majority of my days.  I was unable to even sip water and looking after my own daily needs were impossible.

It really was as though my brain had turned itself ‘off’ to my body and I had no control.

I remember one day swirling orange squash around my mouth for some flavour (I had to spit that out though) and it was the best feeling in the world.  I was beaming from ear to ear!

15 Days after the stroke…

I’m now on my 15th day….and today I walked outside without a stick, up some stairs and I have been told I can start eating actual food.

While I’m sat on my bed I’m watching three other ladies go through their own recoveries.  I can forgive their loved ones’ stares and whispers, when one is about to leave to go to a care home for her foreseeable future, one is fast asleep to the world and another is trying to remember who she and her husband are while he looks on at her longingly…

….9 months on 

I can’t quite believe this was me. I now have a wonderful husband. I’m back at work. I’m driving. I have started a new college course. I am going to Miami and I am soon to become and aunt!

My advice to any stroke survivor would be to take it slow. Everyday you will see some sort of success. It could be as simple as opening the curtains! That is still a huge achievement that you were unable to do yesterday. 

People’s reactions never really change when they find out what happened. They just don’t know what to say other than…”but you are so young!?” I have learnt this is ok. Until it happened to me I would never have known just how many strokes occur in younger people. It is now my turn to educate.

Let people help, live for now and know you are stronger than you think!”

Lauren's Story

I had my stroke in September 2012 when I was just 20 and due to be returning to university a few weeks later.  It started very slowly and all I remember was having a horrendous one-sided headache and was occasionally sick when I stood up.  My mum is a nurse and was concerned but over the course of 5 days I was sent home from A&E twice, being told it was just a migraine and it would get better with rest.  On my third visit to the hospital (6 days after the onset of headache) a junior doctor noticed a very slight left-sided weakness so they eventually decided to do a CT scan.  The first scan highlighted a bleed on my brain and I was admitted for observation.

The following day I woke up in the afternoon to have ongoing and regular neuro observations and I was terrified to realise that I was completely unable to feel or move my left side from my neck down.!  The next few hours were a bit of a blur, but I was rushed for more scans and was blue lighted from my local hospital to St Georges in London and the on call consultant was asked to come and review me.  It was here where it was found that I had a cerebral venous sinus thrombosis, a clot in my jugular vein and a large associated haemorrhage.  It was suddenly a lot more serious than was first thought and my mum had to make the awful decision of what treatment I was to have. 

Along with the doctors it was decided to thin my blood to try and disperse the clots but there was a risk that it could make the bleed worse, which could have been potentially fatal.  Over the next few days I started to realise more of what was going on but still was completely paralysed down that one side.   I was told to expect the fact that I probably wouldn’t walk again and would have to undergo a very intense rehabilitation.

Recovery was one of the hardest things I have ever done both physically and mentally.  I kept a diary of my progress which allowed me to look back to where I started if I was feeling down or had a bad day with no improvements.  I was transferred back to my local hospital and subsequently to a neuro rehabilitation centre where the hard work was to begin.  I had physiotherapy at least once a day and other sessions included occupational therapy and psychology, which boosted my motivation and determination. The hardest part was seeing all my friends go back to university and carry on with their lives when I wasn’t able to do much for myself at all and was relying on other people constantly.

However, despite being told my progress was likely to be minimal I left the rehabilitation unit walking just 4 months after my stroke.  Recovery continued over the months but as soon as I started walking I signed myself up to do a 10km run just 9 months after my stroke.  At the time I didn’t care whether I would walk the whole thing or even crawl over the finish line, but it gave me the determination and drive that I needed.  They haven’t come to an exact conclusion of my stroke but a few months after I was diagnosed with Behcets disease which is a very rare autoimmune disease which causes inflammation of blood vessels.  This is what they think caused my stroke. Behcets has left me dealing with daily pain, fatigue and joint inflammation but now that I am on more medication it is stable….for now.  When it flares up it exacerbates my left sided weakness and there are times when I have to still use a wheelchair or crutches.

Different strokes helped me a lot during my stroke and recovery and I started following through Facebook.  I got to speak to other people who had gone through similar experiences and it was amazing to not know that we are alone.  About a year after my stroke I was contacted by someone who asked me if I would come and visit her daughter who was in hospital having had a stroke.  I was uncertain how I would feel if I went but I am so glad that I did.  It was giving back what Different Strokes had given me only a year before and I was able to give that person some hope that recovery, despite being tough, is possible.

Now, 5 years on, my life couldn’t be any more different.  I started back at university in September 2017 and am a student paramedic.  I worked as an ambulance technician for a few years before and feel that my experiences will make me a better paramedic as I know what it feels like to be a patient and not having any idea what is happening.  I am hoping to graduate in 2020 but know that with my health I may have to take slightly longer.  It is challenging every single day with my health and fatigue, but this only makes me more determined as being a paramedic is my dream.  I know that realistically I won’t be able to work frontline for the rest of my life but even if I can only do it for a few years then I hope that in that time I can help and inspire as many people as I can.

The one piece of advice I would give to someone is not to give up and to use the support of anyone who is offering it to you.  It is easy to look back and see what you used to have or be able to do but unfortunately you can’t change the past.  Having a stroke at any age is horrendous but through it you will become a stronger and more resilient person.

Sue's Story

I’m Sue and my story begins in 2005 on a cold November Friday morning.  Everything was as normal except I woke up with a slight ear ache which I put down to an impending cold.  Working in the offices at a secondary school there are always colds and viruses knocking around.  I left the house to pick my colleague up.at 7am. It was very dark, snow had been forecast and as I stopped outside my colleague’s house I looked over to my left to see if she was coming and as I looked back forward it happened.  It felt like my eyes had been pulled from behind, like stretching an elastic band and then letting it go. They went out of focus as if I had gone cross eyed!  I knew instinctively that it was something quite unusual so I went to get out of the car.  I swayed to the left and as I tried to walk my vision was blinded and my left side felt numb.  It was at this point my colleague was suddenly there and she saw me leave the car and stagger so took me into her house.  I didn’t want an ambulance as my husband was at home in bed.  At the time he was an off-duty policeman. He arrived and took me straight to the local hospital.  By this time I had a severe headache, felt sick, I was numb down the left side and after monitoring me for 45 mins the nursing staff decided it was a severe migraine and rang my GP to be seen straight away by my doctor.  My GP said I was having a severe cluster migraine and gave me a strong tablet and I was told to go home to bed.

I suffered most of my life on and off with migraines but this one was very different!  The vision loss I usually experience with migraines lasts about 1 hour before the piercing headache kicks in, but this time and hours later my headache was unbearable.  My vision was very badly affected and my right eye was drooping.  I felt sick and intermittently had pins and needles in both arms.  My husband rang the GP again that evening who still said it was a cluster migraine!  The next morning I seemed worse so my husband took me to the local hospital again.   doctor on duty sent me straight to the main hospital in Cornwall due to my lack of sight and the right eye which was now very droopy.  He rang the eye outpatients to see me.

At the hospital I was diagnosed with a Horners Syndrome and admitted.  Whilst waiting to be admitted my mouth drooped on the left side.  It lasted a couple of minutes.

After days of tests and still unable to see, feeling constantly sick with a horrendous headache so I was given a MRI scan.

This revealed that I had torn my right internal carotid artery.  The tear had clotted and it was small clots breaking off that was causing the TIA’s.  The main worry now was that this could lead to a full blown stroke!

After 10 days in hospital I was allowed home and spent the next 6 weeks in a wheelchair and complete rest.  I returned to work on a very part time basis after 5 months and returned to full time after 9 months.  Life had changed.  The vision very slowly got better but even today I still have a blind spot which is more prominent when I’m tired.

Once back at work I struggled with tiredness, stiffness, lack of enthusiasm and so in 2009 went part time.  I had many hospital appointments for the joint stiffness and fatigue and was told it was ME.  I was on lots of tablets and felt my life had ended!

A friend who was a homeopath asked if she could help.  Gradually over the past 5 years my health began to improve until I was tablet taking free and feeling so much better.  I am 60 now and feel life is as it should be.  I have no lingering problems and I do tire but not as quickly as I did a few years ago.  I swim, walk, travel. sing and my new found love is Yoga!

I can only say to those who have recently had a stroke or TIA that although your recovery may be a struggle that you should never give up.  it might be slow but remain positive.  You can do it – and you will.

Connor's Story

“When I was 14 when I had my first stroke.  After playing rugby league, I tore an artery in my neck, which caused a Basiler artery stroke.  A week later I had a second stroke, this time on my cerebellum.

I woke in the night feeling dizzy and sick.  I thought I would be ok, so I went back to bed but when I woke again my arm and leg felt tingly and strange.  I managed to get to the bathroom, where I collapsed.  I was unable to move one side and unable to talk – it was terrifying!  I didn’t know what was happening to me and I couldn’t even tell my family I loved them.

I’ve never been so scared in my life.  Luckily my Aunt got help for me and I was rushed to hospital.  At the hospital they said if they did not operate then i would die.  Those words will stay with me forever.

Initially I made a good recovery and spent 6 weeks in hospital in Leeds, away from my family and friends.  However, I was well supported, and I regained all function in my arms and legs and within two weeks I was walking again.  I have been left with absences in memory, tics and Tourette’s, Neuro fatigue and learning difficulties – to name just a few!  But I feel very lucky and although I still have the partial clot on my brain and suffer with dizziness and headaches daily, I am coping well and nowadays I just take it day by day.

I’ve just gone back to education full-time, which is a struggle, but I have great support in place.  I can’t play rugby, but I now run my own charity and help raise awareness of brain injury and strokes in children.  I just brought a state of the art sensory station to Hull to help children and adults with vision, reaction times, concentration and much more – it’s an amazing bit of kit!  I now accept that I can’t do what I did before my strokes but if I can help others then I’m happy and if my story helps give hope to others than it’s worth me sharing.

I follow Different Strokes on Facebook and often read the inspirational stories and the great advice on their website.

It is memories like those about Christmas I now treasure as life can change so much and in an instant!  This Christmas I took selection boxes and colouring books to Hull Royal and Leeds General Children’s neuro wards to make the children in hospital smile at Christmas.

My aims for the future are all about helping others.  I would live to work in stroke services or as a neurologist and make a difference to other people’s lives.

My advice for anyone who has recently has a stroke is take things slow, don’t rush recovery and celebrate each step that you take as it’s a step closer to where you want to be and away from where you were yesterday.  Stay strong and smile!  You can do this.”

Clark's Story

"After four years of trying to have a baby, in 2015 we found out that we were finally pregnant – with twins no less!

We welcomed Clark and Dudley into the world in March 2016. We noticed at 5 months old that Clark wasn’t opening or using his right hand. Our doctors vaguely mentioned “developmental delay”, but to just “wait and see”. However, I had read that a baby with such an obvious hand preference was a red flag – we knew something wasn’t right and pushed for an MRI.

The MRI scan (at 8 months old) revealed a rare 4cm porencephalic cyst (cavity) in his brain, confirming a diagnosis of hemiplegia cerebral palsy.

What we now know is that he suffered a grade IV brain haemorrhage (one of the most severe types of stroke) around the time of birth; apparently just “bad luck”. We were again told to go home and wait and see. We were told to stop asking questions about why it happened and possible treatments; that nothing would change things. We were told to be thankful that he wasn’t in a vegetative state considering the extent of his brain injury. We were told he would “probably” walk but that they couldn’t say how well. We were told his right hand would be nothing more than a “helper” hand at best. It was an emotional time.

What we weren’t told about was all the therapies and support groups that are out there. We refused to just “wait and see”- and we believe that early intervention can, and already has, helped Clark. We were particularly excited about Constraint-Induced Movement Therapy (CIMT) and felt it was Clark’s best shot at gaining any level of function of his right side. It’s relatively new and not available on the NHS. There is a centre in the UK, but it would cost £9k. We searched further afield and learnt about a clinical trial that is currently happening in Virginia, USA. The physios there are experts and include people who have worked on it since the foundation of the therapy. The idea is to constrain the unaffected side to encourage use of the weak side. It’s already proven in adult stroke patients, but this was the first study on infants – the results so far show great things, given the ‘neuroplasticity’ of young brains and the ability to rewire. He also attends a wonderful conductive education charity called Small Steps, every week.

The trial is free as it is for medical research. We crowdfunded just before the twins’ first birthday in March 2016 to raise money for the flights. We got accepted onto the trial (the only people from the UK!), and we flew out in September. We spent 5 weeks learning from the truly wonderful people at Virginia Tech Carilion in neurorehabilitation research.

Our therapist, Dory, came to our room every morning at 8am and worked daily with Clark and solidly for three hours at a time. We achieved his first steps; his first attempt at pincer grasp and isolating his pointer finger, and so many other firsts. He increased his ability to reach, to turn his hand, to assist with dressing, and generally increased awareness and ability of his right side to the point where it blew our expectations out of the water! Before we went, he would rarely attempt to use his hand and only when we constantly prompted him to. Now we find him not only spontaneously trying to pick up toys with it, but succeeding.

When we look back to a year ago, it was hard to get past all the “whys” and recognise that strength was needed instead of tears. It may have felt like we were falling apart, but it has made us very tight as a family, and that includes extended family and friends. We’ve learnt so much. You never know what other people are going through I would obsessively look at other babies’ hands; to see if they looked the same as Clark’s; to see if they were going through what we were going through. But I realised they might have been going through something completely different and just as difficult for them. Also, I’ve learnt that you can ask for help. Your real friends will surprise you with their understanding, generosity, and love.

Looking at how he’s progressing, his abilities do not reflect what we can see on the images of his brain. He is working so hard and he amazes us every day and it’s all about hard work and neuroplasticity whilst he’s an infant. The highs outweigh the lows nowadays. We have rough days sure. Sometimes Clark gets so frustrated with himself it’s upsetting to see, and we worry about his future, but then he’ll do something amazing to remind us he’ll be okay. I can say with confidence that “use right too” is the most-used phrase in our house! Of course, he also has his twin brother Dudley, who is simply an amazing brother. We know he’ll be the best support for Clark in the future, and keep encouraging him to use his right side.

It’s already beginning to look a lot like Christmas for us, with walking starting to become Clark’s preferred method of getting around. We don’t know what the future holds for Clark, but we do know that there are so many possibilities! There are so many exciting therapies to investigate further and so much room for change.

So, we will be doing more intensive therapy with Clark whist he’s young. We are aiming to go back to America in May. We set up “ClarkFest” last month, which was a charity gig and raffle and raised an incredible amount of money. ”

Bradley & Jenny Murray- Proud parents to Clark and Dudley

Debby's Story

I was 37 years old when I had my stroke. It was totally unexpected. On Monday 20th May 2013 I had walked my son to school and when I got home I fell asleep. We’d had a busy weekend. I took my son on Sunday to bowling along with his friends because it was his 6th birthday. My daughter was getting ready for her GCSEs and went to school on the Monday for exams.

I didn’t go to bed on the Sunday night because I was doing my coursework for university (Social Work degree), which had to be in on the Friday. When I woke up I tried to go to the toilet, but I could not get there. I tried to call my oldest son who was downstairs, but he didn’t hear me. I crawled onto the landing and shouted him. Finally, he saw me I thought I made sense, but I didn’t when I shouted him. He phoned for an ambulance and went to my neighbours. I went unconscious then I remember my next door neighbour being there. I also remember my dad being there. It was totally weird!!! I kept on going in and out of unconsciousness.

My mum was waiting for the ambulance to get to the hospital. I don’t know what happened then. I was in hospital for 7 weeks and the hospital didn’t want me to go yet but I was bored. I couldn’t speak, write or read. I was in a wheelchair. My right hand was not working. It still doesn’t. I have learned to walk again. My reading is OK and I have learned to write with my other hand.

I passed my driving test again and got an automatic car. Soon after I started the attending the local Stroke club. I am so grateful that I have a great family. My husband said that he was scared when I came home because I couldn’t do anything. Now I go to the gym, I go to acupuncture, oxygen with my parents and I used to go to a speech woman and a physio. This year for Christmas we are going to a hotel for our dinner which is paid for by our kids. I would tell anyone who is in this predicament not to give up!! Yes, I have days that I don’t want to get up, but I do. In the future I want to get back to Hull University to do Social Work degree (I think I want to work helping other stroke survivors) but I’ll wait and see and take it one day at a time.”

Ryley's Story

"Ryley was a fit and healthy 14-year-old lad. He loved sport and ran competitively for a local athletics club, played football for a local team and was in the school athletics, football, and rugby teams. He was also a very clever lad attending our local grammar school in the top sets hoping to study law at university after his A levels.

During the winter of 2015 Ryley trained hard in hope to get into the county team for sprinting and started the season well in May 2016, winning the county championships at 100m with a personal best and was looking forward to the track season ahead.

Unfortunately the following week our lives changed. It was a Friday evening Ryley returned home from school got changed and raced off to our local village park to play football with his friends. Later that evening Ryley took a shower and it was then he shouted out he had a headache. Within minutes he collapsed was unconscious and vomiting violently. The rest is very much a blur to us now.

He was rushed to our local hospital where we were told he had a massive bleed on his brain and needed emergency surgery. We could not understand why or how. We were told he needed to be transferred to Addenbrookes although they said he may not make the journey, but they wanted to give him that chance. That journey was the longest of my life, being in the front of the ambulance not knowing if my son was still alive in the back.
On arrival, Ryley was taken away and I was not permitted to follow. I remember the doctor that had travelled with him sitting beside me crying and I thought if she’s crying too then there’s not much hope. Scans revealed a massive cerebral haemorrhage with an underlying AVM and left septal haematoma. He had neuro surgery to evacuate the haematoma and a craniotomy. Ryley was put into an induced coma to allow his brain to recover. After a week or so they gradually reduced his medication, but he did not wake up and it was then a tracheostomy was fitted. You hear many stories of people awaking from comas and talking, smiling responding to sounds but this was not the case with Ryley. It was a very gradual stage of awareness I liken it to having a new born.

He spent 4 weeks in PICU before moving to a ward, he was still unresponsive I had no idea if my gorgeous boy was still in there. In July Ryley had his tracheostomy removed and a gastrostomy inserted. One evening in July we had a massive breakthrough I saw him raise his eyebrows I quickly homed in on this and explained to him he could use this communicate raise up for yes scowl for no. He picked up on this quickly and after asking him questions I discovered he was in there he knew who he was, where he lived what school he attended, and the list goes on. I cannot believe the sense of relief I felt nothing else mattered from then on.

The neurologist explained to us that scans showed permanent damage to his brain due to a prolonged period of oxygen starvation. This was in the area of the brain that affected his movement and mobility, so it was likely he would be a long-term wheelchair user and we would have to think about making adaptations to our house. I could cope with this although my response was that we’d just have to train for the Paralympics now.

We spent 3 months in hospital, before moving to a lovely ‘home from home’ nurse led care home for a further three months, whilst waiting for a place at The Children’s Trust in Surrey for intensive rehabilitation. It was here Ryley began to use a spell board to communicate and began to learn how to eat solids again. His voice also improved slightly, and he could say the odd word. Physios, speech therapists and OTs visited daily and Ryley worked so hard. It also became evident that he had not lost his wicked sense of humour!

In October 2016 we returned to Addenbrookes for surgery to remove the AVM and fit a titanium plate to his skull. Ryley was quite excited to become ‘Ironman’. In November we moved down to The Children’s Trust in Tadworth for a 4-month intense rehab programme. Again, Ryley worked hard and although he was plagued with chronic fatigue, much of it brought on by the medications being taken to reduce his severe upper body dystonia, it was here that he was given an electronic communication system. Once he learnt how to use this there was no stopping him! He often had the staff in fits of laughter with his jokes and ‘banter’. Everyone who worked with embraced this and were astonished by his acceptance of his injury.

Finally, in March 2017 after 10 months away we returned home. He was so happy to be home and it has been since his return he has made the biggest progress. I don’t want to dwell on any negatives here and yes there have been many battles and still many ongoing ( education/house adaptations/ equipment etc) but I want people to read this story and draw strength and hope from Ryley’s journey.

We have been blessed by our friends and local community who supported Ryley by fundraising to enable him to continue with specialist neuro Physio, which was not funded by our Local Authority. We travel an hour each way every week to take him and he also attends a local gym weekly to build his core strength. He hopes to achieve his goal of walking unaided. He has joined a Boccia club and enjoys the social side of meeting others with disabilities. In July his gastrostomy was removed and he came off all medication this has helped immensely to reduce his chronic fatigue.

Ryley now has a powered wheelchair, which has given him a bit of independence back. He continues to use an electronic communication system although mainly for when he tires and is plagued by the frustrating dystonia, but he never complains or moans if he feels sad then we find something to laugh about.

He has lost so much but we concentrate on what he CAN do not what he can’t. We focus on the positives as Ryley still has a long way to go and so much more to give. Ryley’s goal for next year is to give running competitively in races a try, so he can get back on the track and run like the wind again.

Christmas this year is about being home around the ones we love most and eating lots of yummy food now that he can.”

Mel- Ryley’s Mum

Rebecca's Story

“My name is Rebecca Merritt and I am 34 years old. On the 13th June 2017 I suffered a stroke. I had been to work as normal and was at home for a quick shower and thinking about cutting the grass and making tea.

My mum called round and as she was leaving (which i now believe was a complete twist of fate) she turned and asked me one more thing. I went to answer but couldn’t speak! It felt like something had locked in my face and jaw. I lost all thought and within seconds I had collapsed as my right-side leg and arm had gone weak.

I remember being on the floor, still trying to speak. When I got up onto a chair I knew something wasn’t right. I needed to look in a mirror as my face didn’t feel right. My face on the right side had drooped. I am a mother to two children who were due home from school. I told them I had been a bit dizzy and went with my mum to my doctor’s surgery. The doctor saw me straight away and insisted immediately on an ambulance to hospital. My blood pressure was hypertensive (189/135). I don’t remember too much from my time in hospital, but I had a CT scan which didn’t show anything. Then I had an MRI scan which showed part of my brain left side was permanently damaged. The consultant came to tell me which left me completely in shock as I was told by the ambulance paramedics that it was “probably a bit of anxiety at your age”, and told by staff in hospital that it may have been a TIA (mini stroke).

I could go home with medication to take for the rest of my life & heart investigation tests were booked. I went on to be admitted twice more to hospital when my blood pressure was too high but also dropping dangerously low. Again, as I was in severe pain (suspected blood clot on my lung) due to spasticity, a condition after having a stroke where your muscles contract and don’t stop. I had nearly three months off work and now nearly six months on I am back and on full duties. I underwent all heart tests and nothing was found apart from a very small hole in my heart. My consultant did not think this caused my stroke. He said it was caused by the combined oral contraceptive pill. I had taken this medication for just one week prior to my stroke and unaware to me it had thickened my blood that much that it had caused a clot which had travelled to my brain.

I really struggled with letting anybody see me when I’d had the stroke because I almost felt like a fraud. I was walking about, talking, eating and as far as anybody could see I was fine. Doctors asked me over and over if I had been having headaches but I hadn’t.

The frustrating thing I’ve learnt is about having a stroke is that it isn’t like a broken arm that you can see. There isn’t a bandage to see on the part of your brain that has died and if, like me, you make an almost full recovery, people might probably never know. I will be honest in my story and say I sat in the hospital and Googled “a stroke”. My consultant told me that since I didn’t smoke or wasn’t overweight my body had being able to massively compensate for what the right side went through. I was left weak and I still attend physio now to build my strength up as my job is physical. My balance and speech are almost back to normal.

It took me three weeks from coming out of hospital to be able to comfortably watch the TV or listen to the radio, as I felt like it was talking at me and was too much to process. All this put massive stress on my relationships with family and friends, but I am a very determined & strong woman, so if I could get up and do, then that’s what I did. I could have easily on some days just sat and cried and felt sorry for myself, but I felt so lucky to be alive that I could not be beaten. I live in fear everyday of having another stroke and not being so lucky.

I hope my story can raise awareness that every stroke and each person’s recovery can be different. Warning signs are not always there. You will never be the same person, as you were before your stroke, but if you have any strength and fight in you, I believe you must use that to try move forward and be grateful for the life you still have. I would like in the future to also raise awareness of the dangers in taking the combined pill and I am now on the mini-pill which does not have the same risks.”

John's Story

"I had a stroke at age 47, 3 years ago. Having worked in Architectural and Surveying practice from the age of 20, I had been self-employed for around 18 years running my own Architecture and Surveying consultancy dealing with
multi-million-pound projects, as well as being Managing Director of a Property Company for over 10 years. Coming from a Yorkshire working-class background, I had taken my opportunities and life had been good to me. I’d been happily married to my wife Jools for 24 years and our two children, Grace and Alistair, were growing up and finding their own feet in life. With a lot of good fortune and the love and support of my family and friends, I could not have asked for any more from life.

I woke at about 6am on the morning of 12th October 2014, got out of bed and fell on the floor. I have a vague recollection of trying to pull myself up on the furniture and my wife, Jools, calling an ambulance as she thought that I had suffered a stroke. To cut a long story short, it turned out that she was right; and that call saved my life! Within half an hour, I was in casualty at York Hospital where a team of specialists were awaiting my arrival. If Jools had waited 30 minutes, it is a stark fact that I would probably have been dead.

I had suffered from a thrombotic stroke caused by a clot forming in my carotid artery, causing severe damage to the right side of my brain, and leaving me completely paralysed on my left side, drooling, and having difficulty speaking, and somewhat ‘dazed and confused’. Following a few complications, and not very pleasant 40 mile ‘blue light’ ambulance ride to and from a neurosurgical unit in Hull, I spent the following 6 weeks in a stroke rehab ward back ‘home’ in York.

After returning home I was put in the care of a great community stroke team where I received a home visit from a physio or OT every other day for about 10 weeks. I thought that after 6 months I would have largely recovered. However, 3 years down the line, I now realise that it is a very long and hard road. I have probably tried every therapy you can think of and found that a lot of hard physio work is necessary, but patience and time are probably the greatest healers.

Having no driving license for three years I now cycle an adapted trike around York, to the shops, barbers, pub, doctor etc. and sometimes on trips further afield. Two and a half years after the stroke I was able to walk a mile, with excruciating pain and determination, and my walking continues to improve. Sadly, there is still no movement in my left hand and little movement in my arm, but I am working on it!

Whilst I was ‘incapacitated’, a small number of people took advantage of my circumstances and my consultancy went under. Thankfully, the cognitive effects of the stroke were not too bad. My speech recovered quickly and 18 months later I was able to adapt the way I work to start a new business. It is going well and it would be better but for my continuing fatigue.

What is still frustrating is that the doctors have been able to give me no reason for my stroke, other than ‘A bit of bad luck’. I had low cholesterol, normal blood pressure and was otherwise fit and healthy, so why me?

In the early-days, I became very depressed and angry, even contemplating and planning suicide at my lowest point. However, I am now looking at my life positively, planning and looking forward to new and exciting adventures to come.

Stroke has obviously slowed me down a bit, but I have not allowed it to change my life significantly. I have simply adapted to my new circumstances. I do not drive (yet), I work differently, and am enjoying living life in the ‘slow lane’. I now appreciate how lucky I have been in the past, and the importance of my family and friends.

This summer, despite not being able to walk to the end of my street, I achieved one of my lifetime ambitions, cycling from York to Lucca in Italy( 1350 miles). It is something I had wanted to do for many years and if I hadn’t had a stroke I would probably never have got round to it.

I had never heard of Different Strokes until I met a fellow ‘survivor’ Eddie Pleban on an outdoor activity week at Calvert Trust in Kielder. Eddie and I both have a passion for the great outdoors (and wine) and we hit it off straight away. Eddie told me about his ‘DS’ group in Norwich, so I hoped to find one in York. Unfortunately, the York group had been disbanded. So, I set about getting one going! Over a year the group has grown steadily with around 20 of us meeting weekly for a brew, chat, and exercise, but more importantly, a few laughs. Setting up the group and helping others has been cathartic and has been a massive part of my recovery process, both mentally and physically. Having to get off my backside and get there every week and seeing the progress in others is more rewarding than I could ever have imagined.

The best thing about having a stroke in your 40s is that people tell you that you are ‘young’! I laughed at first, but have come to realise that there is still a lot of life left to live so I have accepted my limitations and intend to live it to the full.

For what it is worth and with the benefit of hindsight, here are my top ten tips:

1. Talk to those around you and don’t bottle up your emotions.

2. It is embarrassing to ask for psychological help, but worse if you don’t

3. Listen to the professionals. You may think you know better, but they have the training

4. Be positive and those around you will respond – you will get much more out of any therapy

5. You survived this – you can survive anything and get over any setback.

6. Your life will not be exactly the same, but you and those around you can adapt

7. Drink lots of water

8. Work hard, and work ‘smart’

9. Take lots of rest breaks and don’t be afraid to take time out when you need it

10. Be patient. We will all get there!

(If any of my therapists ever get to read this, they will have a good laugh at number 3!)"

Isabel Story

“As I write this my daughter Isabel will be turning 7 tomorrow. I can only describe her today as like a bottle of pop – just ready to pop (with the excitement of it all). In three weeks’ time, it’ll the her sixth “stroke anniversary” as she was just a year and three weeks old when it happened. My husband and I didn’t appreciate children had strokes and thought it was something that just happened to “old” people or to the middle aged if you were unlucky! How naïve we were!

Isabel had been suffering with a virus for 8 days prior to her stroke and we’d seen a doctor most days – on one of those I went twice in the same day as she seemed so very poorly They just kept telling me that it was viral and to give it time for her to recover. On the day of her stroke we’d had her at the doctors at 4.30pm and I asked whether it was time to admit her to hospital, as I couldn’t get her temperature down under 100 degrees (with Calpol) but I was fobbed off with antibiotics and a promise that a nurse would call later.

At just after 8pm that night I heard her cry out and said to my husband that I didn’t like the sound of that and went to investigate but found her asleep (or was she unconscious?) so left her. When she woke in the night I offered her a bottle of milk and it came out of the left side of her mouth. The doctor had said she had a sore throat so just thought it must be really sore and she couldn’t swallow. The next morning a nurse called, and my husband told her that he didn’t think Isabel’s eyes were focussing properly. She got her car keys out and tried to get Isabel to follow the keys – she told us that she may have problems focussing if she was having a temperature spike. She left us with a promise to call later in the day and Isabel grizzled most of the day and we noticed her not sucking her thumb which she’d done up until the day before. My husband noticed that her left side wasn’t “right” and brought this to the attention of the nurse when she called later. She then gave her the once over and got us an appointment with a GP.

The GP thought she needed to be admitted to hospital so wrote a letter and we had to wait for two hours to be seen on our local children’s ward. In that two hours I could really see her going downhill rapidly and was somewhat frantic, to put it mildly! Eventually they found us a bed and once the registrar had seen her, she got the Consultant and things finally started to happen. They did a CAT scan which confirmed a stroke and she was transferred from Portsmouth to the Paediatric Intensive Care Unit at Southampton General hospital, who discovered that the left side of her brain was also about to have a stroke. They managed to stop this happening and saved her life. However, having lost 70% of the right-hand side of the brain, she has been left with life-long disabilities.

We spent six weeks in Southampton having intense rehabilitation and then we came home. It was like coming home with a new born baby again. She couldn’t sit up! we weren’t really sure how much she could see, and she screamed every time I left the room. She didn’t sleep much either!

My husband and I struggled to cope – we had visited PICU before having had a daughter born with CHD five years earlier. She’d passed away unexpectedly at 5 weeks old and ten days after bringing her home. I was petrified the same thing would happen again with Isabel. Re-visiting PICU brought back too many memories and we both suffered with depression over the next year.

Although 2012 was a very tough year for all of us as a family, and particularly hard on my five-year son who very much had to take second place with Isabel’s care and constant stream of appointments, but we did get through it and I’m very pleased to say that my darkest fears weren’t realised. As days turned into months and months into the year we got back into more of a routine, and we got to know the team of health professionals who would be supporting us. By the end of the year Isabel was walking! A major milestone was achieved on that one.

It’s fair to say that her recovery has been much better than expected but she has been left with left-sided Hemiplegia and is partially sighted. She’s never really regained the use in her left hand although does use the arm up to the elbow – essential for the carrying of dollies!!

She is now in a mainstream school with support in place and doing well academically. We could have been writing a very different story here and I count my blessings that she is still with us and doing so well.

If you met Isabel, you wouldn’t realise in many respects that this girl has lost a third of the brain. She is very feisty and determined and it is these qualities that have brought her to where she is today. She tries her very best to be independent and do things for herself. I just hope that she retains her self-confidence, self-belief, and that despite the obstacles she has to overcome that she can and will do it. She’s just joined Brownies, is learning to swim and loves to cycle on her trike.

If your child has had a stroke recently and you’re reading this I can’t promise that dark times don’t lie ahead because it is such a stressful, awful time to go through and you will get fed up of the appointments and the having to fight for adequate provision for your child. But their achievements when they must overcome adversity will be even more special. Join the parent support groups that are available and as parents we need to support each other and sometimes you just need to have a rant!