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!

Emma

“I’m Emma and I had my stroke in May 2017 (aged 27). I had started university in March to follow my dream career of becoming a Paediatric Nurse and on the Wednesday (the day of my stroke) I had successfully completed a presentation assignment. As we had completed the assignment some of my friends and I decided to go out for a few drinks to celebrate. I woke up the next morning and couldn’t work out why I couldn’t see anything out of my left eye. I called out to my friend and she came rushing in. We went to A&E where an eye doctor saw me. He explained that he thought I had an eye infection and to go home to rest.

After two days spent in bed convinced I had a migraine associated with the eye infection, my friend from home came to visit me. He quickly realised that something was not right. By this time my speech was not making any sense, I was very sensitive to light and I had severe cramp down my left leg. He took me straight back to A&E where they thought I was having a bad migraine but, just to be sure they sent me to have a CT scan.

The next thing I knew a doctor came into the room and told me that they had seen something on the scan and that I would need to stay in for more tests. At this point I had no idea what they had seen; and I was terrified. It wasn’t until I was taken for another scan and moved to the stroke unit that I realised what had happened. All I could think was… I am too young to be on this ward – the people on this ward are so much more ill than me etc. It still hadn’t sunk in.

It was found that I had a dissection of my carotid artery – which meant I had two clots; one to my brain and one to my eye. After a month in hospital undergoing various tests and therapy I was allowed home, supported by the early supported discharge service. The early supported discharge service was great! The very next day after discharge from hospital they visited me at home and put together a therapy plan including a specialist support worker nurse, physio and speech and language and occupational therapies. I can’t thank them enough.

Now after 6 months off and a lot of hard work and determination I am back at university and again pursuing my dreams. It’s not easy some days. Sometimes I struggle with the loss of vision in my left eye, the fatigue, and my speech. I would say to other younger survivors to never give up and be positive. I truly believe positivity and determination got me back to where I am today! I am so thankful to all my family, friends, doctors, nurses, Different Strokes and everyone else who have supported me and got me this far.”

Tracy Emerson-Smith

"My name is Tracy Emerson-Smith and I am 50 and single, living in Birmingham. I had my thalamic stroke six weeks after my 50th birthday in April this year

I guess on reflection the warning signs were there… I have worked in the homeless sector for the last 25 years and it has been more than a job. I manage a group of managers- who manage homeless services for vulnerable adults. It is a tough but an absolutely rewarding job. I am the eldest daughter of two and have a beautiful 28-year-old son. I would confidently say after the death of my mum when I was just 9 years old, that I was head of my family. This responsibility then increased when my Dad was diagnosed aged 66 with early onset dementia

Following years of working way too hard I had developed some awful lifestyle habits: I smoked, loved my bourbon, ate terrible food, and developed type 2 diabetes. I was literally burning the candle at both ends- working, caring for my Dad, and partying and at time of stroke I had started dating. I was so excited in midst of the madness that was my life – I was going to be a grandma for first time.

The scene is set and here I was a week before my 50th Birthday and I received the call, a call which I think was catalyst for increased stress. The stress alongside all the other factors which led to my stroke. My son called me on to tell me his partner had gone into premature labour; their son, my first Grandson had been stillborn

Six weeks later following a busy bank holiday, I was home alone. I felt like I was shaking inside, like something had snapped. I Googled my symptoms and I believed I was having a hypo – I made myself a sandwich and I fell asleep on sofa. The next morning, I tried to get up and my left leg felt like an elastic band and I couldn’t raise my arm. I phoned my best friend and whilst slurring my words joked that if I didn’t know better I would think that I had had a stroke. I was taken by ambulance and admitted to stroke ward – my MRI confirmed I had a bleed on right side of my brain

Six months later I haven’t returned to work, I no longer smoke and drink very rarely. I have lost 12 kg so far and I have finally learnt to ask for and accept help. I am about to start community rehab program at Moor Green Brain Injury Clinic. The main impact has been my balance on my left side (wonky 😊), the chronic fatigue which is an ongoing battle and an overwhelming feeling of loss of the person I was pre-stroke

I could have remained lost in my own self-pity had I not have discovered the Different Strokes family. The Facebook group has been my best friend, my confidante, my champion, my reality check, my Saturday night out, my personal advisor and my second family. My sister who has been my absolute rock has also gained insight and support from the group in helping her to support and understand my journey.

I do plan to return to work but not sure what that looks like yet. I also hope to re-do my 50th year celebrations with those who travelled this journey alongside me, but it will be as the person I am now- I do not want to return to the life that lead me here."

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.”

Michelle’s Story

“I had my first stroke in 2009 aged 29 I had been poorly for a while but nobody knew why. At the time, I was working as a drug dispenser in a well-known high-street pharmacy. I had a lot of time off and was undergoing lots of tests. I was struggling to breath, but all my results were coming back as normal. I was eventually sent for an echo and found out I had a hole in the heart, I was told I should be fine.

On April 11th, 2009, I was feeling unwell so a friend came around to my house to keep me company, Luckily, my daughter was at my mums. I felt so ill it was like I was paralyzed; my friend rang an ambulance. My friend was a little tipsy so when the paramedics arrived they asked if I was drunk, I explained that I hadn’t touched any alcohol as I had felt unwell- they didn’t believe me, but, with my friend’s insistence they eventually took me to Hospital.

From there it was pretty much a blur, I remember having tests and then eventually I was told that I had a stroke. They thought this was caused by a clot that had travelled from my leg through the hole in my heart and into my brain. I felt lost to be honest, I was a single mum my daughter was not even 2 and I didn’t know what the future would hold.

I was in hospital for a couple of months while waiting for a space in rehab, in those two months I had a lot of tests and they found I had lots of holes in my heart, which resulted in me having open heart surgery in the September of the same year. My experience of rehab was probably the worst experience of my life; the physio and Occupational Therapist were fabulous however the nursing staff (especially in the evening) were awful. This led me to discharge myself, I left on crutches and recovered myself. I still had some mobility issues but my real problem was my memory. During those months, I found out who my friends and family really were. I was heartbroken as my daughter had forgotten me; my mum couldn’t bring her to visit.

After my first stroke, I entered into a civil partnership with my partner Hayley and we had son. My story doesn’t end there, it was in May 2013 my son was 8 weeks old and I started to feel unwell. I was upset as one of our ducks had gone missing and I didn’t want to tell our daughter, suddenly, I had the worst pain in my head and I couldn’t put my chin to my chest, I knew it couldn’t be a good thing.

I got my partner Hayley to call an ambulance, she said I was probably just stressed; but she called an ambulance anyway.

In hospital, they started pumping me with antibiotics; they suspected I had meningitis. I had a lumbar puncture and I was scared but felt I was in the safest place. I had the lumbar puncture and didn’t hear anything for a while, so I assumed I was ok. I was later told they had picked up a bleed on my brain and that I would be transferred to Oxford. I was in shock, I called Hayley to say what was going on and to tell the kids that I loved them, I honestly thought I was going to die. I spent a week in oxford and during that week it was my little girls 6th birthday- she chose to save some presents and brought them to the hospital to open with me.

Recovery was painful as the blood evaporated through my spine. Thankfully, none of my mobility issues were made worse from the bleed. This time round it gave me a new lease of life, I wanted to do something to make my kids proud.  I started a photography business doing mobile photography and in April 2014 I opened my own studio, which had been going from strength to strength.

Unfortunately, in March this year I had another stroke; this time caused by high cholesterol (hereditary not bad diet) so after another week in hospital I came home with my left side impeded. This time around I feel let down by the system I am extremely depressed as I am stuck in the house most of the time, I can’t do things I used to be able to do with the kids. My moods are so up and down and I push people away at times.

We moved into this house 3 months before the stroke with the hope of doing the garden up but since the stroke I have had to give up my studio so I have no income or passion. All our outdoor equipment is indoors as we can’t afford a shed so the house is so cluttered making it hard for me to get around, I am also sleeping on the sofa due to not being able to get up the stairs. I feel a shadow of my former self and I can’t see a way out of it. I used to take my camera everywhere and take pictures, but now I can’t, I feel i am not good enough.

I was told about Different Strokes through the Stroke Association as I emailed them explaining I couldn’t get to groups and they suggest I join their online support group. people have been helpful, but I still feel alone. I wish to share my story as I feel it may help me, life is difficult at the moment and I just want to be able to do more; even it’s just getting out in the garden with the kids.”

Michelle Mason-Walker

Susan's Story

"I am Susan, I am 58 years old and I was a housewife before my stroke which happened in May 2016 it happened on a Saturday night when I was talking to my neighbors in my garden. It felt like an electric shock going down my left arm. At first, I thought I might be having a heart attack. I continued speak to my neighbors, I then turned to go back into my kitchen and couldn’t feel my legs, they gave way.

My neighbor climbed over the fence and carried me to my living room, by this time I could feel my face drooping on my left-hand side and my speech was completely gone. My son saw me and called for an ambulance, I was taken to resus and then to the stroke ward, where I remained for 4 months. A CT scan showed I had suffered a clot and a bleed.

In the beginning, I couldn’t talk eat or swallow or see out of my left side, I couldn’t even sit up by myself. I fought hard to get to where I am today and I have had to relearn everything. My life now has been forever changed. It has been hell at times, the worst nightmare you can imagine and I don’t know which has been the most challenging, the emotional or physical side of things. I do know that I have shed many tears throughout the past year.

I came across Different Strokes by searching on the internet for stroke support groups. The online group has been the only source of help and support I have, it has been a lifeline to me. My aims for the future is to be as independent as possible and to walk unaided."

Diane’s Story

I was 48 and working in a bakery as a sandwich maker I would start work at 6am and finish at 2pm and believe it or not, it was a stressful job. I have three sons’ and at that time they were 27, 25 and 15 and my husband worked (still does) with the Police in Scotland at a station just 5 minutes away from my work.

Christmas Eve 2014, I went to work as usual, I let myself in and started prepping my ingredients. I was on my own for the first half hour till the manager came in. Around 6.30am I started to feel a bit odd, nothing I could put my finger on but I had a feeling that something bad was going to happen. I was trying to cut some sandwiches and I couldn’t hold the knife properly, I had no grip. I was beginning to feel generally unwell. Then I couldn’t hold the knife at all and was having real trouble standing up.

I went to the manager and said I felt ill. I was basically told too bad, as it was only the two of us in I would have to get on with it. I waited another 5 minutes and by this time my brain was telling me I was having a stroke, but I was telling myself don’t be daft. I went downstairs to where the office and staff room were, I don’t remember anything else.

I woke up in Resus at Edinburgh Royal Infirmary. My husband tells me I phoned his mobile as he was on his way to start a day shift. He couldn’t understand a word I was saying, I was speaking complete gobbledegook. He knew straight away what was wrong. He came straight to my work and put me in the car and drove to the hospital about 6 miles away.

I remember being told I had had a stroke and we needed to decide if I was to have thrombolysis. It was explained there was a 1 in 4 chance it could make things worse or even fatal, we decided to go for it. I was admitted to the Acute Stroke Unit where I stayed for a week, I remember very little of that week. I had CT scans and was told I had most likely had a clot in my neck that caused the stroke. I couldn’t speak, I couldn’t use my left arm or leg, I seemed to be forever wetting the bed and the staff having to change it. The frustration of being sat in a chair with the call button that is just out of reach!

Later, I was moved to the Young Persons Stroke Rehabilitation Unit at Astley Ainsley Hospital. I was the youngest by about 30 years, no joke!! I spent a couple of months there. Having intensive physio, OT, speech, and language therapy. I was sent home able to speak, able to walk using a rollator inside and a wheelchair outside.

At home, I continued to have physio as an outpatient for 12 weeks then it stopped. My bedroom is upstairs so I have a commode for toilet purposes.  During this time, I had to attend numerous meetings for work, eventually I was paid off after 13 months.

Today my speech is generally okay. I still forget what things are called from time to time and I slur my words when tired. I can’t walk unaided and I use 2 sticks inside and either the rollator or my wheelchair outside, depending on how far I must go. My left side is still weak and I need some assistance washing and dressing. I can do most things like making tea and toast etc, it just takes a bit longer than before. I spend a lot of time on my own as my husband works shifts with the Police, they have been excellent with him allowing him time off for my various appointments.

At first, I wasn’t happy in my own company at all. I’m now quite ok with it. I have learnt to crochet by watching YouTube videos. I even sell my crocheted baby things now. I still go on holiday to my beloved Pefkos on Rhodes It takes a lot of organising but I feel safe there and know it inside out.

I’m not too fussed about trying to get back into any kind of work. I don’t know what I would be able to do anyway and I’m much more relaxed about money matters. Before, I would worry and was always doing overtime. Now, we are doing fine with my husband’s wage and my PIP and ESA.

Paul

Paul's Story

“Three years ago, life was beginning to look hopeful, my 14 year old son was nearing the end of 8 months chemo for bone cancer.

It started with a headache, I had set off to collect the car to take my family home from the hospital. To get to our car I had to go up lots of stairs, by the time that I had completed the stairs and got to the car my head felt like it was exploding. I got into the car and drove round to the front of the children’s hospital, which is only about half a mile away.

I managed to reverse the car into a parking space, get out of the car and then I found myself going down on my hands and knees, I started to be sick. Luckily someone found me and then my wife, who took me into A&E. When we got there the vessels in the back of my head burst and I collapsed.

After a couple of days hallucinations and absolute nightmares. I came around, I was on the stroke ward. I was then transferred to another hospital due to catchment area and physio started, we worked on sit to stand and bike and then one day they got me to walk a few steps, I wept a river, couldn’t stop myself.

They let me home early as the depression and being on the ward was becoming too much, I got 5 weeks of physio and then was left to fend for myself. Different Strokes was recommended to me by a physio, she actually badgered me into it.

To any stroke survivors in those early days, I would say stop fighting your demons and give in.

You have to do this to be able to get strong again I am walking and driving again now and the hand and arm are progressing well. But, I am here and life isn’t so bad."

Ms Isabel Ham

Isabel’s Story

“I had a very bad stroke at 48 and I have never recovered but I have upgraded myself although that took about five years. I had a very dense right hemiplegia and sensory deficit on the right side. Also I had expressive dysphasia and was dependent for all activities of my daily living. My speech was gone but I could hear it all in my head though I couldn’t speak it! After a week the odd word came back although very faintly but that continued to date so I can know speak about 75%. My reading age was about 11 years old but I brought that up to date in the five years.

I was in rehabilitation for 4½ months having all sorts of help.

I lost most of my computer skills but I was determined to get them back. I started College for a couple hours a week for the first year, then more the second year until full time the last three and I even took the HND in computers. I was so proud. The College provided me with someone to take notes and push me around. Did I say I was right handed! It took a year but I can now write with my left hand although I can write much better on the computer than with a pen!!! And it is easier to write things down rather than try and speak them.

After three years I found the courage to start driving again so I found a disabled learner driver who gave me lessons. I had to have an automatic car with adaptions for my hand and foot pedal. Although difficult at first it soon became easier and then I was off!

I am 65 years old now so I have had the stroke for 16½ years and I still become frustrated because I can’t do many of the things that I liked doing although I have found a way of doing many of them another way but some of them I will never do. Still, look on the bright side. I help many people with their Ancestry and I do various things on my computer as a volunteer for several groups. The things I used to like to do I can’t so I make the most of what I can do. C’est la vie!