Dear wonderful Stroke-Proof members, A key part of the Stroke-Proof community and the future book will be sharing stroke survivors stories. I hope these stories will provide hope to other stroke survivors. Especially those who have recently had a stroke and might be wondering what the future holds in store for them. I also hope it will be a useful opportunity for you to reflect on your journey. If you want to do so please use this thread to share your story, but remember there is no pressure to do so. If you could please also confirm whether you are happy for your story to be shared in the book and in other materials for Stroke survivors and if we do so whether you would prefer to remain anonymised. If you woud like to share your story in here but to remain anonymous you can do so by direct messaging me and I will then copy and paste what you send me into the chat. I would highly recommend writing whatever you want to say in a word document and then copy and pasteing it into here as I know some people have lost entries in here that didn't save properly. I hope you have a happy Friday!

Good afternoon, everyone. I'm hoping some of you might be willing to help me with something that's very close to my heart. I'm looking for volunteers who would be happy to spend around 30 minutes chatting with me, either on Teams or over the phone, about your experiences following a stroke. *Why am I asking? Having worked in stroke medicine for many years, I know how much of a difference good care and support can make. But I also know that, despite the dedication of so many NHS staff, stroke services don't always provide everything that survivors and their families need. Sometimes that's because of limited resources. Sometimes it's because we, as healthcare professionals, haven't spent enough time really listening to people who've experienced a stroke and understanding what matters most to them. I want to help change that. But first, I need to listen. I've already had the chance to chat with one or two of you in detail and several fo you have replied to my prior post asking about what you needed after a stroke. This time I want to use the time for the conversation to go a little deeper. I'd love to understand more about your experiences, including: - How did you and your family feel in the days, weeks and months following your stroke? - What were your biggest worries, questions or frustrations? - What information or support did you need but struggle to find? - Where did you turn for answers? - Looking back, what could have made your journey a little easier? There's no right or wrong answer, and I'm not looking for anyone to share anything they feel uncomfortable discussing. Your experiences, whatever they may be, are what matter. *What am I hoping to achieve? My ambition is to make life after stroke a little less frightening, confusing and overwhelming. I want future stroke survivors and their families to be able to find clear, trustworthy information, practical advice and meaningful support without having to spend hours searching or feeling that they're facing everything alone.

Hi, I am curious to know how other people's experience has been who were not treated on the stroke ward for whatever reason. I feel, from my experience that there is a huge difference in the stroke specific support you receive and when this happens early on, it negatively impacts your recovery. For example, I was on a vascular ward for 4 weeks (my stroke occurred during surgery), I saw the Stroke team once, I didn't see any of the stroke therapy team and therefore was not given the physio etc I needed until I reached a neuro rehab ward, but which time i had additional problems such as a frozen shoulder. I have had eye problems since the stroke and the consultant I saw today was shocked I hadn't been referred to a specialist Stroke Optometrist when I was still in hospital. I was not given any contact at the Stroke Association until I joined the Stroke group in Aintree (who informed me this was normally done before you left hospital)). My stroke was last July and I feel it's become more and more apparent that if you are not treated on a stroke ward, you do not get the same level of stroke care or follow up. I can't be the only one. How many of us slip through the net? I feel it is an area that needs attention to make sure everyonehas the same care/experience. I understand staffing issues, I am a nurse, in the same trust. The focus is very much on the acute care a the time of the stroke, which of course is important. But if you are just left after that and only then get help if you are lucky enough to join a group, or see the right eye doctor, or ask the right questions (if you can) that surely is not ok?

Why staying connected is crucial Stroke prevention isn"t just about the medical stuff — blood pressure, cholesterol, glucose. One of the biggest protective factors is something far more human: 🤝 Staying socially connected. Strong social ties reduce stroke risk through several powerful pathways: Lower cortisol & allostatic load — loneliness is biologically stressful. Regular connection buffers stress hormones and supports vascular health. Better habits — people with strong social networks move more, drink less, and make healthier choices. Early warning — friends and family notice subtle changes in your speech, balance, or cognition that you might miss. Sharper brain, longer life — social interaction protects against cognitive decline and dementia, which often overlap with the same risk factors for stroke. The evidence? 2 Large population studies have shown that loneliness and social isolation increase stroke risk by 25–30%, and raise all-cause mortality by a similar amount. Connection isn’t “nice to have.” It’s a real physiological need. --- How to build your stroke-proof social routine Pick ONE of the following this week: Call or meet a friend you haven’t seen in a while. Plan a weekly ritual — Sunday walk, Friday coffee, mid-week gym session with someone. Join a group (local club, sports team, community group, or our Stroke-Proof monthly check-in). Strengthen the micro-moments — ask how someone’s day is going, send a voice note, share an encouraging message. Small, consistent contact creates benefits. Share below what you’re doing, and let’s keep each other stroke-proof. 💬🧠 Here's the links for the 2 research studies: https://pubmed.ncbi.nlm.nih.gov/27091846/ https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-19835-6?utm_source=chatgpt.com

Looking for a simple habit that supports heart health, lowers blood pressure, lifts mood, reduces stress, helps manage weight, and builds community? Parkrun is your answer. 📜 A Little Parkrun History Parkrun began in 2004 in Bushy Park, London, when founder Paul Sinton-Hewitt invited just 13 runners to a simple, timed 5k. No fees, no medals, no pressure — just community and movement. From that tiny gathering, parkrun grew into a global movement with millions of walkers, joggers, runners, and volunteers. ✅ Why Parkrun Works ✨ Free, friendly, and for all ages — walkers, runners ✨ No barriers — no cost, no special gear, no “I’m not a runner” stigma ✨ Community connection — encouragement and belonging keep you coming back ✨ Health boost — improves fitness, mood, confidence, and long-term motivation 🧠 Stroke Prevention Power = movement + nature + social connection Parkrun supports: • Cardiovascular health & blood pressure • Mental wellbeing & mood • Weight management • Confidence & self-esteem • Skills & purpose through volunteering • Management of long-term conditions 🌍 Healthcare Approved Endorsed by the Royal College of GPs as a social-prescribing option. 💬 Ready to Start? Sign up online (free forever): parkrun.org.uk Print your barcode Turn up to any event Walk, jog, or run Enjoy the community & post-run glow! Your first Parkrun could be the start of a healthier, happier you. Why not give it a try this Saturday?