My name is Carole. Had stroke when I was 28. Am now 54. Was given 2 days to live initially, ended up spending a year in hospital. Overcame total paralysis, and had to re-learn everything. Also endured major heart operation (to remove the tumour which was breaking up, piece of which hit my brainstem and caused the stroke. Nobody knew it was there until my stroke happened). Was in a wheelchair for 14 years, and now use a walker. Had benign brain tumour and recently broke my hip! Been a massive struggle, both physically and mentally. Still have problems swallowing. Amazing I am still sane, after much counselling haha! Good to know I'm not alone, thought for years that I was.......oh and have now read a few of the heartbreaking stories on here. Jeez, I feel so fortunate compared to some of you poor souls. Please believe me, it has not been easy and has taken me years. I often felt like giving up and ending it all. Then I reminded myself that I had been through so much, and was lucky to be alive. Being on here proves that and bless you all - thanks x
what an incredible story
thank you so much for sharing. what amazing resilience. you have great courage and that is an encouragement to all of us survivors.
may you go from strength to strength
Tony
Thank you for sharing your story and cheering many of us up.
You are indeed amazing.
Colin
Hi SpaceCadet - You are one incredibly brave and amazing person! Reading stories like yours of how people overcome their personal challenges is truly inspiring and gives hope to all of us. Thanks for sharing it with us. Take care x
Dear SpaceCadet,
I am not a stroke surviver, but the wife of one. My husband had a stroke almost 5 months ago, paralysed on the left side, swallowing problems, he is being fed by a tube through his stomach, and his speech was afected, although it is improving now.
I wish to thank you so much for giving me hope that my husband can recover with your own story. Unfortunately, my experience with the NHS has not been great. We are coming up to the discharging time, and the senior physiotherapist stated my husband will never walk again, which was quite distressing, because he heard it. Apart from the six extra weeks of physiotherapy, they will not provide funding for any more.
When I next visit my husband, I will tell him your incredible and inspiring story, so he knows that he can indeed recover, even many years later. Thank you so very much for giving us hope.
Tony, I really appreciate your very kind words. Wow! Am deeply humbled. Truly hope I do inspire people, and likewise you guys have all given me hope for the future.
Tinkerbell - I want to tell you, I too was once fed through a tube into my tummy. Am sorry your own experience of the NHS has not been good. Additionally, I was told whilst in hospital that I would never get out of my wheelchair. I was also gutted to hear that. However, it also eventually gave me the determination to prove them wrong! They also told me that I would never be able to live alone. Ha! I am, so stick my tongue out to them now heehee! It all really affects you taking a stroke, but your love and support will help, bless you. Make sure that you take care of yourself too, and have friends over or have lunch with mates and have a good natter. My husband left me whilst I was in hospital. Was crushed emotionally, but have brilliant friends. Don't want to give you false hope, but please tell your husband to work hard (like I did). IF I CAN, MAYBE OTHERS CAN??? You never know....
Am still trying to figure out this forum OnwardsandUpwards haha! THANK YOU so much for saying such nice things about me. Truly hope that I've inspired others, as well as given hope. Bless and be well x
Thank you Colin for saying that I am amazing! Truly hope I've cheered folk up, as you have all cheered me up! Bless you and be well.
Hi Carole, just want to add my thanks to you for sharing your amazingly brave survivors story with us all. An inspiration which will give hope to the many new stroke survivors which join our group at their most vunerable time. My stroke was almost two years ago and things are still improving. Keep going. Wendy
Thank you so much Wendy. Much appreciated. I honestly wish I can give hope to my fellow stroke survivors. Likewise, keep going too ! Not so long ago, NONE of us would have survived, so medical technology has been a brilliant help, as well as a positive mindset.
Dear Carol,
First of all, I want to thank you once again for giving us so much hope and for your inspirational personal story.
I want to tell you, well done for fighting the hospital who gave you such a negative prognosis, there should be an award for stroke survivers, for the battle you fight both with your brain, to make it recover as great as possible, and against the negativity of the medical teams, and their so-called NHS guidelines and medical evidence, so many times completely wrong.
I am deeply sorry your husband left you at such a vulnerable time in your life, he was not the right person for you, I am sure you can find love once again, you are too young yet, and there will be someone in your destiny, who gives you the love you rightly deserve.
I would like to ask you a few questions, if I may please, about a way forward for my husband. At the moment, besides the six weeks community physiotherapy, after discharge, my husband will have nothing else, because the medical team determined he is not progressing in his recovery, despite me telling them about the amazing brain film with Richard Lloyd Davies, and studies by professor Nik Ward from UCL in London, who say, even 18 months after a stroke, you can still recover. None of this mattered. May I ask, did you have a private physiotherapist, speech therapist and so on? I really don't know how to go forwards, because even my GP denied my husband a referal to another neurologist for a second opinion.
If I may ask, about your tube feeding, did someone carry out tests to see how you were swallowing to see if you could eat solid food again? Or did you feel you were ready to do it?
I am so very sorry for the long post and for the endless questions, but, at the moment, I feel so lost. My husband will have to go to a temporary care home, because our house can not be adapted to a wheelchair. We have steps outside stairs, and they would have to build a wet shower. There are so many unknown questions, that the hospital or social worker have not answered yet.
I will certainly tell my husband your incredible story. Just yesterday, he said to me, «one day, I will walk again», it was the best thing I could have heard him say.
Tinkerbell, thank you so much for responding. I will help you in any way I can. Doctors etc. are not always right, please believe that.
There WAS someone when I moved back to Scotland. My childhood sweetheart, Billy, we met up and were reunited, but he sadly passed in 2013. Once again, I was devastated. I still miss him loads. He was delighted that I survived so much, and we were really happy. Not sure if I will find someone again, hope so? 'What will be, will be', as they say............my beloved Dad who was also a great help, had already passed in 2011, so I have been gutted many times. At times, I have felt cursed!
I never had private physio etc., but perhaps that would help your husband? Similarly, could telephoning someone who runs My Stroke Guide help advise or point you in the right direction? Regarding my feeding tube, it was merely a natural reaction over the months. I recall my first 'real' food was chocolate mousse (as it is easy to digest). After another month or two, I was onto proper solid food and used plateguards, and special cutlery for a few months as well. Honestly, it has all transpired over time very organically.
It's a pity that your husband will have to move into a home for a time. A wet room or walk-in shower (with a shower chair) would be a fantastic help to your husband, as would clear entry to your house. Please shout louder to the hospital or social worker! You need, and deserve, more help! Both of you. That's brilliant your husband says he will walk again. You know, he just might and will have a good try! Good on him. And you. Luck and peace Carole
Dear Carole,
Thank you once again for replying, it means a lot to me, I really do appreciate it.
I am sure you will find someone, you are certainly not cursed. You have just changed so many people's lives by sharing your story of inspiration and hope.
All the people that have sadly passed away in your life, are looking after you, giving you inner strength and watching over you.
I will certainly insist that social services adapt our house, my husband worked so much for it, we are still paying the mortgage, but besides that, I don't want him to suffer any more, by being away from the house and me for so long, unless he really needs to be cared for temporarily in a care home.
Chocolate mousse sounds great. I am hoping that, as my husband's speech improves, so will his swallowing too.
One day, very soon, all stroke survivers will, by the advancement of medicine, have a complete cure of their strokes. Nothing like one day after another to renew all our hope.
Tinkerbell thank you soooo much for your kind words again. I have lots of good friends, male and female. All love and respect me, as I do them, but am really not sure about a new love. I hit menopause around the time Billy passed, and I have no libido at all now. Love that I have changed people's lives by sharing my story! Wow! I also adore the fact that Dad and Billy are watching over me, and remain proud. I love them both loads, always will.
Absolutely agree with you and your husband deserving more help. Totally understand why you don't want him to suffer any more. That's beautiful. I also worked really hard before my stroke. I was a legal assistant and dealt with intellectual property. Have done many courses and/or voluntary jobs since my disability. Am currently a shareholder of my landlords, and we have an AGM next week. What do/did you and your husband do/did? The care home sounds the best place for your husband as a stop-gap while your house is slightly adapted. A few handrails (like at the toilet or shower) and a shower chair, or wheeled table (as I have) make ALL the difference. Improve your independence tenfold too!
My speech is about 99% back and, alas, my swallowing makes me cough sometimes. Mostly, I am OK and can happily eat in a cafe or restaurant. Lost my confidence after breaking my hip recently, though am getting better. Life is improving at long last! To your husband too, bless! Carole
Dear Carole,
Thank you for replying once again, and for your kindness and help, it means a lot to us. I can't begin to tell you how much help all stroke survivers gave me so far, since I joined this forum. If it was not for all of you telling me my husband can recover, and were we to believe the medical team, I wouldn't even push for physiotherapy, because in their opinion, progress has stopped, and will not resume to a level of independency for my husband.
I think, the medical team fail to realise how many lives they crush by saying such a thing both to a stroke surviver who will ve overwellmed by the stroke and what is happening to him or herself, and to their loved ones, who are trying to hold on to every inch of hope they can, to encourage you to go forwards. So I can never begin to thank all stroke survivers that, with their experience of recovery, have shown me that medical evidence is not always right.
It is understandable you lost a little confidence with your recent accident, but it will come back in time, god willing.
Yes, I told you I feel your relatives and your childhood sweetheart are watching over you, because I feel that god, I am not sure if you are a religious person, so I am telling you from my perspective only, allows the souls of those whom we love who departed, to look after us. Sometimes god can put an idea in your mind as to how to go forwards, or someone will come into your life, for a short or long period of time to help you over a stumbling block, or it could be a stranger in the street who, for a moment does something kind to you, and restores your faith in humanity again. But I feel, god always sends you a solution somehow.
My husband worked in a factory making shop display stands, tables, and everything made with metal, but the factory closed down, 4 years before the stroke, and because my husband was 54 at the time, he could not find other gainful employment.
I am an english into european portuguese translator, but, because most of my work is freelance, it is very insecure, so I am always trying to look for other jobs. However, my love is translation, there is nothing like making an author from a country known to the readership of another through translation, besides the fact that you are always learning something new.
It fills me with joy to know my husband will be able to eat again. It breaks my heart when, in the hospital he listens to people choosing their weekly menu, and he asks me when will I eat normally again?
Do forgive my long post, that is the worst thing about being an aries.
Hiya Tinkerbell! Good for you! Take note of what we are all saying, and fight for your beloved husband! It will all be worth it in the long run, I promise you. Indeed, us stroke survivors KNOW much more than professionals, no matter how experienced they are. With the greatest of respect, how could they possibly know what it feels like??
Yes, I can feel my confidence returning daily. I know my loved ones would be so proud of me now, and my independence. I am not a religious person at all, but respect anyone's faith, within reason. I hate people trying to change my point of view, and trying to convert me, so thank you for not doing so! I love to think maybe someone will come into my life, but if they don't, I'm fine about being alone now.
Interesting about your respective jobs. I know what you mean about finding work these days. It's a different world now, isn't it? Just enjoy our respective lives whilst we have them, I guess?? I am also a lifelong poet, by the way. I began writing when I was only 9. Have been published a few times, and written for friends' weddings or birthdays. Have a songwriting partner, who uses my lyrics as the basis of songs. Eric and I have made, or been involved with, 6 CDs!! I'll write a poem of mine below. Wrote it when I was 17. Creepy when you think what later happened to me! My favourite is my latest one. I'll send it next time, if you like?
I, too, look forward to you letting me know that your husband is back to eating solids. Yay! Best of luck to him. I am a Libran - the scales of justice - ironic I worked within the law!! Aries is a ram, so ram into those social services and state your case! Good luck to you. Peace Carole :)
'The Fountain of Heaven'
My spirit leaves my body
I walk through a golden mist
You stand by a dancing fountain
And I wonder if I exist.
I've travelled a very long distance
To meet you again
If death ever keeps us apart
Then please tell me..........when?
You look at me with tearful eyes
The fountain dances on
And it's then I know
That I can't stay for long.
The mist clouds over again
Doctors and nurses surround my bed
They tell me with a worried look
That I was forty seconds dead.
But we will meet again
Come what may
We will meet again, my love
Some happy day.
1981
Hi Carole, thanks for sharing your story. It's a good example of how we should always keep fighting
Hi OnwardsandUpwards! Just wondered how you were today? I went to Morrisons for a few things, and had breakfast. Mum and sister, Linda, were here later. It's a bit colder here today. You? Best wishes:)
Just wondered how you were today Colin? Got something arranged for every day this week. and have a meeting next week. Colder today here. You? Best wishes :)