A stroke survivor who says his life has been turned upside down is backing a campaign to raise awareness of the impact of having a stroke at a young age.
Marwar Uddin, 41, of Tower Hamlets, London, had a haemorrhagic stroke aged just 40 in August 2022. The dad-of-three now receives carer support four times a day to help him with everything from showering to dressing.
Marwar’s stroke has snatched away precious milestone moments of raising a young family which many parents can take for granted, such as building a snowman with his five-year-old daughter.
By sharing his story, Marwar wants to help people understand that stroke can happen at any age – and can put life on hold.
Marwar said: “Stroke is one of the worst things because it’s the long-term impact it has on you as a person. I need help to go to the toilet. I can’t even dress myself. There is so much I can’t do anymore. My voice is different now, like I’m a different person. I cry myself to sleep most days. It’s difficult for me.
“I have always been a real family man. I’m Tower Hamlets, born and bred. I’d take my wife and kids out to loads to things like swimming, cinema and after school clubs. I provided for my family. I was just like any happy-go-lucky family man in his 40s. I’ve always been a guy on the move, always busy.
“Life was so good. No problems, and I loved my job. I really enjoyed my life a lot. Life can change in an instant.”
Marwar, who has worked for his local council for over 20 years and is currently a Principal Environmental Services Officer, had his stroke while he was at work.
Marwar said: “I remember that day really well. It was the school holidays and my wife and children had gone to stay at her mum’s house for a couple of days so I was home alone with the cat.
“Our cat was quite new at the time, and it was the first time I’d been home alone with her. She wouldn’t stop meowing, so I headed into the office early as I had quite flexible working hours.
“I got to work and one of my colleagues was already there. He made us a cup of tea. I went into my office, closed the door, and I had a Teams call. As the call ended, I felt something in my head. It was like a hosepipe going off. I touched my head, wondering what it was, and my vision started to black out. Everything was a blur.
“I tried calling someone on Teams, but they didn’t pick up. I tried picking up my phone, but everything was going dark in front of me.
“I knew something was wrong but I didn’t know what was happening. I was feeling quite hot. I managed to call my colleague who was in the office next door. I don’t have a clue how I managed to call him.
“Later, my colleague told me that I was just slurring my words. With one last ounce of breath, I managed to say, ‘Can you come here?’
“He came to my office and straightaway he knew something was wrong. He called an ambulance and shouted to get more people to come and help. At this point I was quite confused, and only know what happened from what people have told me afterwards.
“One of the other guys realised straight away that I was having a stroke. There was going to be around a 40-minute wait for the ambulance, but one of the guys said I needed to get to hospital now and that they have to act fast.
“We were based in Whitechapel and five minutes from the Royal London Hospital”.
Marwar’s colleagues rushed him to the hospital within 20 minutes. He received immediate attention there.
Marwar said: “At hospital they put me to sleep. I don’t remember six days of my time in hospital. At one point, I feel like I recall my wife kissing me on my head and telling me I needed to stay strong, but she can’t remember so I’m not sure if I even remember that. So many people came to visit me in hospital.
“Around a week later, I started to come round and realised what had happened. I couldn’t move my arm and leg on my right side and my face was drooping.
“I was told I had quite a nasty bleed on my brain. I couldn’t talk – people couldn’t understand me.
“Three days later I had a relapse, and they were worried I might have another stroke. It was inside my brain, so they didn’t want to operate. They told my wife that if it was another stroke then there was nothing they would be able to do, and for her to prepare herself.”
Marwar did not have another stroke. He spent two months in hospital, during which he struggled hugely with being separated from his youngest daughter.
Heartbreakingly, when he was finally able to see her again, she did not recognise him.
Marwar said: “My youngest daughter, she’s only five, came in to see me after about six weeks. When she walked in the room, she saw me and said, ‘That’s not my dad.’
“I had saliva running down my face and my face was drooping. She didn’t want to come near me. She didn’t recognise me properly. Eventually, after about 15 minutes, she started coming a bit closer and was a bit nervous.
“This is my daughter who would come running into my arms when I picked her up from school and give me kisses. It was really hard for me.”
With Marwar unable to walk and experiencing challenges with his speech, communication and memory following the stroke, his then-17-year-old son had to take on responsibilities to help take care of their family.
When Marwar returned home, lifted up the stairs in a wheelchair by the ambulance crew, he says faced his “darkest times”.
He says he lost a lot of everyday moments of being a dad to young children – an important milestone in life for any parent. The stroke’s impact on his mental health was devastating.
Marwar, whose children are now 18, 14 and five, said: “My youngest daughter wanted me to read to her, but I couldn’t get the words out properly.
“One of the darkest times I remember, was when we had snow in December 2022 and my girls wanted to go out and build a snowman, but they couldn’t because my wife was busy that day and I couldn’t go out with them to do it. That really hurt me.
“At home, I had my chair in the living room and I just used to sit there all day. I never used to watch the TV because I couldn’t hack it – the talking was too much for me to process. I could only deal with two-way conversation.
“I used to just watch the world go by, waiting for my carers and physiotherapist to come.”
Struggling with depression, Marwar was referred for counselling by his GP.
Marwar said: “The stroke was a mental trauma. I had depression and I was at such a low point.
“I used to do so much for my family. It’s been really hard for my daughters. It’s been a lot for them to adjust to. I have lost a lot. It’s been really hard on my wife. We have been together for 20 years and she’s been there for me all the way, holding my hand.”
Over a year after his stroke, Marwar’s world is still unrecognisable from the busy, sociable lifestyle he led before.
Marwar said: “Before all this I had no idea what happens to you when you have a stroke.
“When I was discharged from hospital, I was given carers through the local council who came to the house to help me four times a day.
“They still come four times a day now to help me with my everyday needs, from dressing and washing to eating and taking my medication. I can’t go to the toilet on my own. I take various medications and I have no appetite now.
“Twice a week, carers also come to take me out of the house. I have an NHS speech and language therapist, who has taught me many techniques and strategies for my speech. She is still working with me.
“I have pins and needles on the right-hand side of my body 24 hours a day. If I go for a hair cut then it’s agony for me at the moment.
“I have a lot of tremors which mean my arms shake. I wouldn’t wish stroke on anybody.”
But determined to get his life back, Marwar has been fighting to do all he can to reclaim his independence. He has recently taken a huge step towards this after being cleared to drive again in an adapted car.
He has been making huge progress with physiotherapy and speech and language therapy – he now walks with a walking stick and has strategies to help him cope with his aphasia and apraxia.
Marwar said: “Now, I try to do things differently. I am making really good progress. I am even driving again in a car that is fully adapted and I can control like a computer with my fingers.
“My licence was reissued after my neurologist supported me in the process for me to show I am fit enough to drive. It’s really nice to be able to get out with my wife again and just do normal things like the shopping. It helps with my rehabilitation.
“I keep a document of things I’ve achieved. I designed a PowerPoint presentation with support from my speech and language therapist to talk to people about my stroke. I delivered the presentation to a large group of NHS professionals.
“I started my own Tik-Tok, making videos to raise awareness of stroke and share my rehabilitation journey.
“I’ve been able to speak to my daughter’s teacher face to face at school again about her progress, and I’ve even managed a meal out with my girls.”
He is also set to start a phased return to work later this year.
“Marwar said: “I love my job and the people I work with. I can’t wait to get back and they are working on putting everything I need in place to help me get back.”
Marwar praises the support he has received from local services and the Stroke Association.
Marwar said: “After my stroke, I was contacted by several organisations. The Stroke Association was there right from the beginning and has been with me throughout my whole journey.
“I have nothing but praise for the Stroke Association. They’ve been so supportive. I had somebody I used to speak to on the phone each week as a buddy, and my Stroke Support Coordinator calls me regularly to see how I’m doing. She has sent me so much information, she’s pointed me in the right direction for things like obtaining a disability lanyard, helping me to get my blue badge and things like that.
“I realised I couldn’t use a computer mouse now, so I contacted the Stroke Association on email to ask what I should do. They got back to me with a few suggestions of things to try.
“The Stroke Association is my go-to for everything and anything to do with my stroke.
“I also started a Tik Tok channel during my rehabilitation. I never used to do social media, but I wanted to try and raise awareness about strokes. I’ve got quite a large following now.
“Without life after stroke services, my life would be massively different. I have had so much encouragement from the Stroke Association and the community stroke teams. They have made me determined to get myself better. If I didn’t have any of this support, I think I would still be in that chair in my living room watching the world go by. When I was in that chair, it felt worse than a jail sentence. I don’t know what I would have done. It would have been bad for me.
“Everyone who has been part of my stroke journey has been nothing short of remarkable. I’d like to thank everyone who has supported from, from the NHS, the local services and my carers to the Stroke Association.
“I’m a massive Arsenal fan, and I was also buzzing when I received a letter of support signed by Mikael Arteta telling me to stay strong. I cried when I received that message.”
Marwar learned that he had been at risk of stroke due to high blood pressure. He wants the general public to have more understanding of the fact stroke can happen at any age and it is not something that only affects older people.
Marwar said: “I went to work one morning, and my whole life changed completely. Stroke changes everything.
“They say the quicker you get treatment, the less chance of more severe damage. Who knows – if we had waited for the ambulance to get to us when I was having my stroke, I could have been in a wheelchair for the rest of my life.
“It feels like the jigsaw puzzle pieces of my life are slowly taking shape again. I’m now registered disabled. I’m not the same person, and I probably never will be the same person again. But I’m determined to make things work.”