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Home › Talkstroke › About Stroke
What is a stroke, who is at risk and recognising symptoms
It is Matthew, the Stroke Association's Website Manager here.
We are about to conduct some user research in to the TalkStroke forum, alongside other elements of the stroke.org.uk website, in order to improve everyone's user experience of the whole site.
And I would really love it if some TalkStroke users were able to get involved and contribute some feedback in person.
We are hoping to run a couple of research sessions next week - one in Bristol and one in London.
If there is anyone who is interested to help and would like to find out more about how to get involved in next week's sessions in Bristol or London, then please do get in touch.
I would love to hear from you.
You can contact me via email at firstname.lastname@example.org
Finally for now, I would just like to say that we will be conducting user testing throughout 2014 so there will be plenty of other opportunities to contribute to these exciting developments.
Many thanks for your time and continued use of TalkStroke.
Geetings to you all.
I don't suppose this will be any help but maybe someone will identify with it.
I had a stroke 7 years ago and am suffering with quite a few residual effects such as useless left arm/hand, bad balance, non-functioning left leg ( though I can walk with a stick ), paralysed left vocal chord ( so my speech is terrible ) etc. etc.
But the thing that is harder to express is the change in my personality.
I have become a philistine.
Whereas before I would be inspired by music ( I used to play ), art, literature etc. now it's all meaningless. One of my favourite artists was Van Gough.
I've been to see his work in many galleries. Recently to the National to see the two sunflowers. However, where before, seeing such paintings would send shivers down my spine and hairs standing on edge, now I feel nothing. The same goes for music, which I previously loved.
I feel I am still the same person and don't have any deterioration in memory or reasoning but this subtle difference is very depressing and mostly misunderstood by the medical profession ( I have had cognitive based therapy and counselling - both no use )
Anyone else feel a lack of inspiration or less enthusiasm for things that previously lifted your spirit?
Kevparr, please do not give up insisting that they help you with this if it persists-they do make mistakes! I was told I probably had a virus and was treated for that but had actually had a cerebellar stroke and now walk with a stick at 47 years old. I am not saying that it is anything bad but if you are not happy-shout! Take care, Debbie
I am a 53 year old male with a history of type 2 diabetes, high blood pressure, dejenerate heart disease and other conditions. 5 days ago i went to hospital with stroke like symptoms i.e slurred speach drooping face on the left side inabillity to walk due to left leg weakness and servere intermitten head aches.i had blood tests and a C.T scan and also a M.R.I scan but the scans showed no sign of stroke and was sent home with a zimmer frame. today is the 6th day and i am still unable to walk due to weakness on left side still have regullar servere intermitten head aches however now my right leg to the hip is completely numb i called the doctor out and he believes i have had a T.I.A. everyone i have spoken to tells us a T.I.A wont last more the 24 hours can anyone advise??
Hi Sarah just seen your comments. Thank you so much-it is nice to know there is light at the end of the tunnel. I had some physio this week and was issued with a walking stick which is helping a great deal. I wish you continued recovery and thanks for taking the time to comment.
My dad (just turned 53 in December), had a severe stroke on March 29, 2013 .. He had a hemmoraghe on the pons of his brainstem. Doctors and nurses were suprised to see him alive when he was rushed into the E.R. with his blood pressure reading 200>/100> ... They called him a miracle because he was alive and conscious. This March on the the 29th will be a year since his stroke. Fortunately, my dad is not paralyzed, but is completely disabled. He can move both arms and legs with limited ability and he also has dysphagia and cannot walk. We lift him with am ambulation belt and so on as you can imagine. My father stayed in ICU for a month with the beginning stages of therapy. After the hospital he went to a rehab center that did not do much for him. After one month in rehab he was sent home and has been home ever since. My dad has two daughters. I am 20 and my other sister is 19.. I take care of my father Monday through Friday all day till about 6 in the evening by myself. He has home health and we are currently trying to get therapy back. My mom works full time and my little sister is in her senior year. I have just now got back to school myself. I was a full time college student until my dad had a stroke. I also have a older half sister that just recently moved back home due to certain circumstances, but thank the Lord above my sister wacthes my dad for about 2 hours so I can atleast being school part time. Some days are better than others, but I can honestly say it has been a learning process for our whole family in so many ways. To this day I still struggle with the emotional, physical, and mental stress of taking care of my dad at such an young age. I am a BIG daddys girl and that is what makes it even worse for me. My family and I are currently searching for programs that will come in and help us with some daily care and also for my education. My father is not qualifying for Medicaid at this point and it has become very frustrating. My dad is also 3 medications for blood pressure that he takes twice daily, and we try to the best of our ability to keep a low-sodium diet, but we still have trouble managing his blood pressure. One day its normal, the next thing ya know its high, and then one day its low. For instance last before he went to bed his pressure was 115/94 which is not to bad, but this morning he pressure read 197/106 with a pulse of 89 .... SCARY! We are coming up on our year mark...Just like an below comment was mentioned; Seems like you can get one step ahead and then what do you know, your two steps back AGAIN! My family is so busy with not only their personal life, but also giving my dad the best care. To sum it all up, I can understand and relate to these previous comments and just looking for some advice/encouragement.
I appreciate any advice or just general comments.
Wow you have done and are doing such a great job,
I do not know if am right or not, are you form the UK or the US?
This would be important to know before I try to answer your points that you have put in writing, I say this because in the UK you should be getting Social services to help you and your Dad! if you are not in the UK then it is going to be hard to give advice on services that you should be getting.
I am a stroke survivor my self, as can see for my story in the comments that I have made. Although I had to fight for the help that I got in the end, that I have to say at this point or be specific in the answers that I give here.
I would say ask the Stroke Association for help and advice on getting the services that you should be getting for your Dad if you are in the UK or a similar agency if you are not in the UK like the U.S.A.
A stroke is very hard on the survivors family! let alone the survivor them selves, I consider myself very lucky although I have had a CVA stroke, and I do not know if this helps you at all, but given time things do get better, I live by taking one day at a time, if you look on Utube and look for a video called
( Beyond Borders - Stroke One Day at a Time) it is a great video that may help you. Be brave for you Dad and your family, be strong! and do not be afraid to ask for help! through you local Doctor and the Stroke Association.
Keep strong you will come through a winner for you Dad.
Hello to all,
I am a stroke survivor, I had a CVA stroke in July last year 2013. I live in south Wales, I was told that I have had a CVA stroke by the stroke unit at my local hospital, I was asked to walk up the corridor to see if I was steady on my feet, obviously I was not as I had lost the left side of my body and my speech and as with a CVA stroke I also had drop foot syndrome, so walking with out an aid just was not going to happen. So I was given a CT scan and a leg brace and a walking stick some medication and then sent home!! I never had physiotherapy for 8 weeks I was not even given medication to prevent another stroke, like anti clotting drugs, I got them after seeing the same Dr some 8 weeks later, she had forgotten to give them to me!!
I had no occupational therapy at all and I still have not! I had to look on Utube to find out how I was going to dress my self.
I was so angry and frustrated it was unbelievable, but I was not going to let this situation beat me, so I started to shout at my GP (as best as I could)
to get something done, I have been told that I should not even be walking, yet I am! I have regained my speech it is not perfect and I forget things a lot, and I still do not have the use of my left arm, my left leg is still the same.
And yet the NHS say they are doing things right for Stroke!! where do they get that from!! they need to ask stroke survivors what is really going on.
sorry for the rant, I just needed to share this with you, Thanks
good luck to all, do not let it beat you or get you down, we are all winners.
Just logged in and read your post. I'm a stroke association support coordinator in South Wales that works out and about in the community. Have you checked this out? http://www.stroke.org.uk/about-us/wales/services
Just type in your postcode and see who is available to help you out, if needed. There are inevitably shortfalls in stroke car all over the place. Even though it's improved over the last few years there still so much to do. You can also contact our national helpline on 0303 3033 100 to have a chat with someone who can make a referral to your local services.
Sounds like your quite resourceful but some pointing in the right direction could prove useful in your recovery.
Hope this helps.
It may be that you have had or are having a TIA? as you may well know they pass by after a while yet if not treated they can lead to a CVA Stroke
I do not know if that helps I hope so.
Thankyou Paula, it's nice to hear from you. I know it's going to be very hard, I'm struggling to understand a lot of things my husband says but we're working on it! I drew him some pictures of basic things he may need the nurses for as he says they don't understand him! he thought my pictures were funny, I'm no artist! we had good news from the MRI today, no further bleeding despite being on heparin then clexane, warfarin next! the next plan is for community hospital and lots of rehab. He thinks he can come home now but that's a scary though for me, I'm just not ready until his mobility comes back a little. he's so bored as he's a 'doer' the frustration is going to be the hardest thing to deal with, I'm sure we're going to gave a few battles.
Thanks again x
Your creativity is brilliant, I really believe that this is the key to finding work-arounds while waiting for recovery. But if your drawings are a bit dodgy, check out the Speakability website, they have aids and information that you might find useful - a laminated picture chart for one!
I'm not great with the medical side of things but it sounds positive that he's ready for rehab - I read in your other post that you're encouraging him, which is great. We had a tick sheet at one point to make sure we were covering all the different exercises - that made my hubby want to do even more so he could tick them all off!
In your other post you mentioned phone calls and text messages - it's so strange the things we identify as missing, I was the same, we weren't married when my hubby had his stroke and I really missed his goodnight/good morning texts! He still hasn't gone back to his phone so I'm not getting any new messages now. I was heartbroken when I put my old phone in the washing machine and lost all the pre-stroke messages, back up your phone now if you can!
So many things about stroke are heartbreaking, I'm surprised there's any bits left that are big enough to break still!
You mention the thought of your hubby coming home quite scary - make sure the hospital know this. I used to go onto the ward on a Sunday in time to help mine get washed and dressed, then we sneakily spent all day together doing exercises, having a cuddle and even going to the hospital canteen for a lunch date together. I'm sure this was all strictly against the rules, but you never know, they might let you do it too!
I'm glad things seem to be going in the right direction for you!
My mum, 78, had a severe stroke on 7 Feb 14 and now is at home unable to move her left side. She didn't get much physio at the hospital and it's a struggle to get her to sit in a wheelchair (she fell out twice in hospital) for too long. She just wants to be in bed most of the day. Now her arm is getting really stiff. Does anyone have any tips? My brothers have been trying to massage it. She is very depressed too and talks about wanting to die all the time. She also has mental health problems and is a very simple person. I know she was a handful at the hospital and I feel that they couldn't ship off her home quick enough. I live so far away and everyday I feel despair for her. So once the arm starts going stiff is there any return?
Poor Mum, and poor you and your brothers, it's really tough. I can't tell you if there's any going back for a stiff arm - my husband's has done very little in 2+ years - just a bit of upper arm 'swinging'. We (I) do stretching, just very gentle stretches, held as far out as I can ease it, hoping for further as the minutes go past, hubby lies flat on his back and I try to get the arm into a natural position next to him. I find it's easiest to start with upper arm, then forearm then wrist and fingers, but I guess everyone's different. My hubby has Botox once every 3 months in the tight muscles to relax them - I think it paralyses them but as they're useless functionally the botox just seems to relax the arm and eases some of the pain. We were referred by physio but you could speak to GP.
It's hard when you live so far away, my hubby talks to people using Skype or Facetime but not everyone has the technology to do that, especially the elder generation.
I hope things improve for you family
Hi, my husband had a haemoragic stroke 3 weeks ago on the left side of his brain leaving him 'numb' on the right side and with dysphasia. It seems to be 1 step forward and 2 back! I thought he was doing well and was transferred to a community hospital fiord rehab then he took a turn for the worse, high blood pressure, got taken to A & E and it was discovered he had swelling on the brain. he was put on steroids then it was discovered he has clots in the lungs which he's been put on blood thinners for with the risk of bleeding again! I really don't know how this is going to end up, he's only 49, he seems to be a little better although I can't understand much of what he tries to say. Our two children are being very brave but I just wondered if anyone else has been through similar and had a good outcome. He was running his own business so I don't know if he can ever do this again, I'm thinking not because of communication problems.
If anyone has any advice I would welcome it, Thankyou x
I'll start by just repeating what your other response said, it's really really early days and we can't really guess what progress might be made, whilst I believe that hard work can make a real difference it seems that luck plays a big part in it too.
It sounds like you're all being really brave, not just the children - you've obviously managed to get your head round things somewhat to have found this site and be posting so coherently, but this is a massive thing for you to deal with too, it's scary and it's really, really sad - I know, my hubby was 54 when he had his stroke 2+ years ago and I am still coming to terms with things.
But, I think we have quite a positive story, he has gone from not being able to sit up at all to trying to walk without his walking stick (which gets a bit messy if he's trying to carry something!) which would be so liberating as the right hand still does nothing and it would mean I would be less of a 'gofer' - good for everyone! Straight after his stroke he couldn't communicate, I only knew whether I was guessing the right 'basic needs' by the expression on his face - which I don't think he was controlling - after a few weeks we got 'yes' and then a few weeks later 'no' and we have progressed to some basic conversation and the ability to write some fairly comprehensive sentences, given time and a clever iPad app. After being discharged from Speech Therapy in about month 10 I panicked and found City University London, they have a lovely team who do lots of aphasia research and we have enjoyed taking part in a few projects.
I was always very involved in my husbands therapy, I am not embarrassed to say that I am pushy, I will ask repeatedly for anything which might help (Botox/FES) and I will ring up and chase appointments that are slow coming through. Mostly, therapists are very good about my pushiness, I think they know that this means I am determined and therefore between their sessions with my hubby he will do his exercises - lots. Exercises can be tiring, boring and seem pointless but I reckon if the therapists suggest them, then they must work for some people, but mostly I wanted to do everything we could to get the best possible recovery - I didn't want to think 'what if we'd done more' - I know that we could have done no more, we are still trying now. I was lucky that while he was in hospital the therapists tried to do John's session during visiting, so I could watch and learn - this experience was invaluable I think. We also had a notebook so that therapists could write me notes, as he couldn't tell me anything, it wasn't always filled in but might be worth trying in your husbands case.
My hubby has 4 children and one stepson, all teenagers at the time of his stroke. Of the five of them, three have faced things and adapted quite well, helping with exercises - even creating their own around shared interests, simple things like 'who's going to win the football?' - and finding new ways to spend time with their Dad. The other two, we barely see, maybe this is a natural drifting of kids but I think they just find it too difficult to see their Dad in this way, they didn't live with when he had his stroke and so they could chose whether or not to see him, as a result they chose not to and have never had to face things. Obviously, it's hard to comment on someone else's parenting techniques, but I believe that sheltering kids too much makes them weaker and less capable, the kids that have been with us are better informed as we have been able to talk to them about Dad's stroke, they are more comfortable with him through time and the opportunity to see that deep down he's still Dad. One of the kids said he even feels closer to his Dad since the stroke, they spend so much more time together now.
So, where your children are concerned, I would encourage them to be as involved as possible. Make sure they understand how the stroke has happened, one of ours was very worried that it would happen to them, so we needed to reassure with lots of medical knowledge about her Dad's freak stroke. Perhaps make sure they know that they can still have their friends round. Encourage them to use their internet skills to find family days out that Dad can manage and all can enjoy - I am convinced that our involved kids are happier than the distant ones.
Kids are lucky in some ways that they will go off to school for 6 hours a day, it's something of an escape, whereas you and your hubby will live with this 24/7 - there is no escape. It took me a really long time to accept my hubby's stroke, it was about 9 months before we started to talk about retirement, we spent a long time convinced that he would make a full recovery, it was shocking when we realised he wasn't going to. Then we started a very long and ongoing search for ways to fill our days now that we weren't busy, working people. So the research at the university is lovely, through that we've got involved in teaching medical students about aphasia - just a few times a year but that's ok, it's quite hard work! We've just signed up with the Stroke Association to support other couples embarking on a similar journey to our own. Finances are tricky now as we've gone from two salaries and a mortgage to match to one pension and the same mortgage but we have found Groupon and get some good deals from there, we also have a CEA card so get two for one at the cinema every time - even the senior screening which is only £3.50 to start with!
I'm not saying that life is good, but it's not so bad, it's just a really big adjustment for people of working age - we get old in the blink of an eye, most people do it gradually over decades.
I don't know if I've been any help, I wanted to be realistic, the devastation of stroke is underestimated in general I think. You're going to need to be very strong, for a long time, you might need to eat lots of cake! But I am not a patient, giving person - I am a tantrum throwing diva and we have managed, we have a slow, quiet and peaceful life but it's not completely unfulfilling or uneventful, it's not so bad. There is hope!
Keep your chin up, look after yourself and let people help you, for them if not for yourself.
Hi. I'm sorry for what's happened to your husband. My mother had a haemorrhagic stroke almost 2 years ago on the left side of her brain, and she has expressive dysphasia so I understand your anxiety completely. She had a craniotomy to halt the bleeding and stop the brain from swelling, and her situation looked very bleak then - we were told that she would never speak again, and that it was unlikely she would be able to walk again. We were also told that she would need 24 hour care and were advised that a residential nursing home was probably the best option for her. Despite all of this, she still made a steady initial recovery, and I think this was partly because she was treated at a specialist neuro intensive care unit.
She was then transferred for rehabilitation and spent 3 months in a community hospital, and while she did improve it wasn't fast enough by their standards, so they put pressure on us to decide whether we were going to care for her at home or in a nursing home, and taking everything into consideration we opted for a nursing home where she has been for the last 18 months.
This isn't the end of her story. We had to pursue physiotherapy privately because the community rehab team felt that walking was an unrealistic goal - she can now walk 15 metres with a walking frame. Her speech and language therapist referred her to the charity Speakability and provided her with a conversation partner once a week for 3 months which was very helpful. While her speech will always be difficult to understand it is much improved from the early days, and she can make her needs known by gesture, facial expression and pointing when she struggles. Her short-term memory is not great but it could be a lot worse, and medium and long term memory is pretty decent, and her incontinence is manageable now. We are also in the process of planning her return home
However, it's not plain sailing and she is afflicted by extreme tearfulness, emotional difficulties, headaches and fatigue. She's also lost her ability to read and write.
It's a long and painful road to recovery with a steep learning curve and no two people with stroke are the same. Medics will always give you the worst possible scenario in order to prepare you to accept what has happened but even they can't predict how stroke sufferers. It's very early days for your husband and if he can get past these respiratory issues, then there's every chance that he can recover, plus he has age on his side which can help. Do your research, ask questions, always push for the best treatment and talk to other people who have been through the same thing - you know your husband better than anyone!
Stay positive and persevere - all the best!
thank you, your support and positive words mean a lot. the medics said the clots would break down over time but that there was a risk of bleeding again in the brain from the blood thinners however the MRI has just shown no further bleeding. big sigh of relief! now to start more rehab and hope for a fairly good recovery. he's normally very determined but now has to be pushed to do physio, I'm being very pushy though! it's very hard when I want to ring him or text him knowing that I can't because he doesn't know what to do with his phone and his words are not clear although to him in his head I think they are. here the struggle begins!
Hiya all I'm new to TalkStroke. My name is Kay (Thomson) and am a stroke survivor. I'm 44 years old married with two girls (15 & 13). I had a TIA in summer 2005 when I was 35, then stroke 28/04/06 when was 36 (due to hole in heart - PFO) followed by massive stroke 06/02/07 when was 37 (likely due to narrowing of my left carotid artery). I've been left with oral dyspraxia (problems with speech, writing, reading and understanding). I had over 2 years of speech therapy weekly lessons, have good days bad days. Nice to meet you all.
I had my stroke in 2007 so I know what it's like to live with long term consequences. It sounds like you have done really well with bringing up two girls. I hope they have an inkiling of what you are going through ( although I imagine you play it all down so as not to worry them too much ) - I find that it's hard to tell healthy people of the experience. Still, why would they want to know? It's no fun.
Anyway Kay, keep on keeping on. Nice to meet you too.
Yup smiling face on for my girls so Graeme gets the moan one lol. But hey onwards and upwards, were are worse at war/sea!
Thank you for posting, it must be difficult when you have dyspraxia/aphasia - but I wouldn't have known when reading your post - it's perfect! Lovely to see what achievement can be made with time and perseverance, my hubby's stroke was 2+ years ago and talking and writing is still so very difficult.
Awww thanks for that, means alot. Think I'm lucky because when I worked one of my duties was proof reading brochures etc. so this has help with my recovery. My dyspraxia part is the tongue so sometimes it doesn't go where it's meant do. Still loads of words I can't say, and never will, but I get there. Pad and pen, spelling out, around the way eg. brother's son is my NEPHEW. I can sort of read a few paragraphs/sentences etc. but then lost the plot and if words are long/medical etc. I'm for it lol. This is why I've not been able to comment of alot of TalkStroke posts because they are too long for me to understand.
Can I ask if your hubby goes to speech therapy lessons?
Everyone's experiences are so different, the more people I meet/write to/speak with who had a stroke, the more challenges I learn about - no two people are the same!
My hubby was discharged from speech therapy after about 9 or 10 months. But we have been involved since then with the Aphasia research team at City University London who are AMAZING! It's a long way from Lincoln, but the journey's good for our confidence building I believe the projects we've been involved in have helped in so many ways.
I guess my waffly posts aren't the easiest to read so I'm keeping this one short!
Hi, I keep googling for info and figured it might be easier to ask. My mother, an alcoholic in denial and heavy smoker is 69. She had a suspected stroke about 5 months ago and is in hospital now with a mild stroke she suffered on Monday. She's apparently recovered well and will be discharged Friday. Doesn't seem to be any lasting damage. She was in Inensive care 2 years ago with pneumonia and recovered from that but kept on the drink and cigarettes and is a shadow of her former self from that.
I'm not sure what info I'm looking for. I read that mild strokes can happen with out being diagnosed and if she's a heavy drinker, I suspect this may not be the first or 2nd one, could this have happened before and been out down to the drink?
She's 69, looks much frailer and I don't think she will change now, I think she's given up on life and did so years ago and finds solace in the drink.
I feel slightly helpless and think this is her future. I guess I'm thinking the prognosis isn't good is it? My family is their usual 'it's all okay', unemotional self - years of denial about her drinking has effected the family and my dad.
I guess I just need people to talk to :(
Hiya I feel your pain. My mum also was a alcoholic, smoker with a terrible diet (if and when she did eat!). Unfortunetely at 6 stones after 3 strokes she passed away 18 years ago at 52 years old. My dad was also a drinker at that time so I really understand the 'denial' "we're not alkies" talk but as your dad is not in 'her place' please ask him to help her, if not you. Good luck.
Reading your post, felt like reading about myself in so many ways. My mum - also 69 and an alcoholic in denial - suffered a severe stroke 5 weeks ago. Her right side has completely gone, she can't swallow or talk. I feel like I have lost my mum, even though she hasn't actually passed away. Medically she is stable but doctors have said that she is 'unco-operative' in terms of rehab and physio etc. There has been hardly any progress at all and she just lies in a hospital bed, unable to tell anyone her thoughts, feelings or needs. It is heart breaking.
I am so used to the stubborn, difficult alcoholic that she has been for over 10 years though, that I wonder how much of this 'not co-operating' is the effects of the stroke and how much is just behaviour that has become ingrained, if that makes sense?
I have no advice I am afraid (I knew nothing whatsoever about strokes at all until my mum's) but just wanted you to know you are not alone. I also wonder if my mum has given up on life, hence not responding to the physio etc. As much as I hated the life she was living beforehand, drinking so much, I can't bear the thought of her living the remainder of her days in a care home, relying on other people for everything. Behind the alcoholic, was a kind, caring, gifted woman who I adore with all my heart. Finding this all very hard to deal with - not helped by the fact that I am 8 months pregnant myself. This was meant to be such a happy time and I hate the feeling of helplessness that you describe.
Just wanted you to know you are not alone.x x
I am looking for help new too this not sure where to post.
I was wondering if anyone can help me. My mother- inlaw had a stroke nearlly two years ago.
She is paralysed down her right hand side. She was in hospital for about 8 months.
While she was in hospital her speech was effected too it was hard to understand her but we used to keep getting her to repeat what she was trying to say then we would get it then her speech got a little better.
Also she was having physio but as she has a low pain barrier she was saying stop after a while in to the session, then she started refusing the physio. The hospital said if she said no to the physio then they would not make her do it.
Also when in hospital she was made to use her left hand to use to feed herself and pick the cup up to have a drink, sometime the nurses would do it when she was not able to do it. Also father- inlaw would always feed her a drink and not let her do it as he said it takes too long her doing it.
She was sleeping alot all the time at the beginning and we was told that is normal. Then she was being awake alot more.
Then she was sent home she is bed bound. Her speech still you could understand her by making her re say the words. Again sleeping alot off and on. when we would go over we would wake her up and she would be awake while you was visiting and trying to talk to you.
Now she is sleeping all the time and is not talking to you.
When we go over and try wake her to say hello she opens her eyes and looks at you and closes her eyes again.
I was wondering if their is anything we can do to help or get to try stimulate her like a bubble lamp etc.
Many thanks for reading
my mum had a stroke two months ago today. she is 70 and had a very severe haemorragic stroke. she has lost the use of her left side, is incontinent, her vision is very affected, depressed, gets bit confused and is extremely tired. She is not the same mum and seems to be detached from things. I am very worried as my sister visited her today in hospital and she said that she was extremelly confused and sleepy today, much more than usual. i would expect my mum to gradually improve not go down! can you reassure me that it is normal
Hello, my name is Samantha and I'm 24 years old. I had a stroke just over 1 year ago mine was a blood clot, I've lost the use of my left side and have a short term concentration and memory problem. I apologise if this doesn't make much sense but I often know what I cant to say and cant find the right words. After my stroke I had many seizures some would last for hours even with sedation, I was put onto ITU/HDU because of these. Mine are no epileptic they are stress related its my bodies way of coping with stress and the results of the stroke. I showed similar signs as your mum is doing and it was due to the seizures, I believed the doctors and nurses were out to get me and were drugging me to shut me up. I have no recollection of this due to the sedation but my boyfriend has explained what happened to me. Once I settled being on new medication and the seizures become less frequent, my moods started to settle.
Being in hospital is generally confusing, everyday is the same except different people visit so its hard to define one day from another.
One thing I saw quite a few people doing was an activity blanket, its the only way I can think to describe it. They were home made with lots of pictures of the family on. People had attached different things onto them from laces to tie up, buttons and lots of different textures. The doctors seemed to recommend these as they help stimulate the mind and keep you busy, but the pictures were a reminder of the family. A lot of the ladies especially seemed to enjoy these.
The lady in the bed next to me could hardly communicate and I kept a bit of an eye on her as she would just point to what she wanted. I could press my call bell for her, she had one of those blanket things and she loved it. It brought her and her family a bit closer as when someone in the picture come to see her she would point to the picture and smile. Its worth a try I'm not promising it will work.
I know it can be difficult but keep trying, sometimes when people come to see me I wouldn't talk. I had nothing to say everyday was the same and no one could understand me but having someone there meant everything, I cant begin to imagine what your going through but don't bottle it all up. You need to talk to someone whether its family, friends, someone on here or from the stroke association.
Hope something in this helps
thank you so much for your lovely message full of insight and good ideas. i am sorry it is a month after my message was posted that i noted your message... i have actually been too down to look at the message board. My mum's mood is terrible, she is angry, down and she is so so angry with me. I am almost scared to go and see her. it makes me so sad. i don't know what to do anymore. i need to protect myself as it is killing me. I will try the blanket. thanks again for all your support. that definitely helps
Sorry to hear about your mom. My father also at age 70 suffered a stroke June 2013. Like yourself I was concerned about the amount of aleeping he was doing. Neurology Dr assurred me this is normal as the brain needs time to heal. Basically, they said the brain has taken a big hit and needs time to recover. If your mom was active prior to all this, get her started on an antidepressant (low dose) we did that for my dad.
It is very hard to watch them go through this. I truly understand. BOTH of my parents have had strokes.
Some additional advice - place her in a neuro rehab as soon as you can. Not a generalized rehab but specifically neuro as they are trained to handle brain injury patients.
My siblings live out of state so my dad gets on skype (it's free) and that way he can see all the grandkids. Puts a great big smile on his face. He was very outdoors so we have become creative with chores for him to do. We were told to get him back to his normal routine as soon as possible. He has difficulty talking and does not like to be around people. We play games board games constantly and he helped me make a photo book of the family and we go through it daily that way he can say the names and help build his memory back up. We joined a support group as it's important for him to be around other people who are similar to him now.
Stay strong. Stroke recovery is a very long process
similarly to the other messages, i am only noting now your message and i am so grateful for it. i am off to see my mum in her rehab centre with my son. i will be there for 3 weeks and i am dreading it. having things to do with her might be a really good idea if she is in the mood. the last time i visited she was so so so down and angry that she would have thrown the photoalbum at me i imagine... i am scared! i don't know what to do as my mum was the nicest mum in the world and she has turned into a very angry,negative, sad, depressed, and hard character who is so hurtful to me. i will bring boardgames too as another member has suggested and hopefully being busy will help
I was hoping that someone with something more relevant would reply to you, but they haven't and so I will try!
My hubby still gets very tired, 2+ years after his stroke and he definitely has good days/hours and bad ones. Sometimes we can identify why he suddenly can't find any words - like we've overdone things - but sometimes there seems to be no reason.
After reading posts on here for over a year I think this is definitely normal. Even people who seem to have made a complete physical recovery can still have extreme tiredness.
I also think that hospitals don't help with confusion and enthusiasm, although there is no other option so perhaps this can't be changed but remember that your Mum's days will follow the same pattern day in and day out, there's nothing to put down as a marker to help remember what day of the week it is (like if Bingo is Tuesday today must be Thursday) or even what time of day as the meals must all roll into one. She's probably not doing much so there's probably little to tell you or enthuse about.
I think it's nicer for everyone if visiting times can be pressure free, there's such a lot of pressure on both patient and visitor to sit there for two hours and make conversation, we used to encourage my husbands kids to bring photos or games (connect 4 or snap worked) when they visited so there was a focus other than conversation. Maybe your Mum would be interested in some old photos - it's worth a try.
Hopefully last night or this afternoons visiting will have gone much better, fingers crossed for you and your Mum.
dear paula. thank you so much for your response. it really helped me and put my worries in perspective. i am so scared for my mum. what a good idea about bringing games. it is true that it is very hard to chat for hours and sometimes i don't know what more to talk about. my mum would often say that we have said everything there is to say... will tell my sister to do so as well as she can visit more than me. yesterday not only was she confused but she was also tearful. she said taht some nurses talk to her as if she was crazy and it is true i have seen it, they talk to her not very respectfully. my mum was a highly intelligent and educated person and she is spoken to as if she was a child. oh it is so awful to be living so far away from her and i have a 3 year old to look after. thank you so much paula for your good advice
Oh bless you, I'm sending a hug.
Everything you're feeling is so normal, but being far away must be so hard as you can't see for yourself what's going on.
Tearful, while upsetting for you and your sister is fine, if your Mum wasn't upset and scared then that would be wrong - this is a sign that she's understanding what it means. Having a stroke is really scary, there's no knowing what the future will hold, we grieve for our old lives and everything we've lost - it's all so normal.
I can't imagine being a nurse, I am completely the wrong temperament so it's hard to judge, but I know that sometimes I've heard them with a strange tone of voice, even if the words are ok. My hubby couldn't say much in hospital but he did make it perfectly clear that he didn't like some of the nurses. We didn't mention it while he was in hospital as I didn't want to make anything worse, then we came home and it wasn't fresh in our minds anymore. We should really have said something but it's really hard without specifics and my hubby still can't really tell us those.
As you are far away from Mum and your sister, does that mean you moved away? Are you close to anyone there who you can offload to? Just to get it all off your chest, I found talking about it really helped. Actually, I talked to my husbands colleagues a lot, just talking about how wonderful he is, how strong and determined. That really helped keep my focus on him as the man I fell in love with instead of the one I was spoon feeding slop to. Maybe you could have some support from your Mum's friends - it's ok to cry on people and tell them you're sad/scared/angry.
I also think my stroke association lady is worth her weight in gold and if you were here in Lincoln, she would help you even if Mum's not in her area. So, you could try your local one, for advice, support and tissues.
I'm also wondering if your Mum could manage a mobile? So you could talk to her everyday? The man next door to my hubby in his first ward had one, just a cheap pay as you go in case it got lost but he chatted quite a bit to his relatives.
I'm waffling again - I'm trying to get a whole mornings tea and cake conversation into one message and it doesn't work!
I think your three year old will be a real help when Mum comes home from hospital, play is a brilliant way of relaxing and trying to do things in a pressure free way and grandkids are great at getting their Granny to play - we have teenage kids so it's not quite the same but some of them are quite creative!
Keep your chin up and let us know how you're doing
what can i say!!! you are so kind and supportive and i can say you are a lifeline to many people on these boards. thank you so much. i haven't been on these boards for a good few days as i was in bed with the flu and here is your lovely message,that is just so right and supportive. in the meantime the situation with my mum has gone from bad to worst and i am feeling totally at a loss. i have left my job as well as i didn't think i could manage it with my mind being so preoccupied. it is really really tough but hearing your words of wisdom is really helpful. My problem with talking to other people is taht they all have positive stories of other people who have gone on to make so much progress and have improved a lot. It is not my mum's case at all so i find myself even more lonely in my despair. My mum has now being diagnosed as having epilespy. Indeed, since i visited a couple of weeks ago, she started being extremely confused,agitated and paranoid. we didn't know what caused all this and after an ECG, they said it was epilepsy. My mum now say that they (nurses) are against her, they don't like her and they want to attack her! until now it was a saving grace that she was not unhappy there as she recognized how well they were looking after her. She is now convinced that they are all against her. I know what you say about the phone, but all my conversations with her are extremely frustrating as she forgets what she needs to do over the phone and half of the time, doesn't want to speak to me. To be fair I get also very nervous as i don't know what to say to her. We used to speak every day on the phone and speak for England but now it is just so stressful. I wish i could access the support that you mention in Lincoln. I am in London and i don't think they could give me support my mum being in France. thank you again. i like your "waffling" (quote from you) a lot, it does help to feel less lonely in that terrible journey! kind regards pc
You say some very kind things, I just hear so many sad stories and want to help, although there is frustratingly little that I can do. But if I have something relevant to say and it may help someone then it costs me nothing to say it - I have lots of spare time nowadays - the joys of retirement??!
Obviously, I can just give ideas based on what I saw and felt but if enough ideas are thrown into the pot then surely one would work!
I'm sorry you've been poorly too - that's all you need. You were perhaps wise to stop working so you might avoid becoming run down. I think something like stroke can put things into perspective and make you realise that things that were previously important are no longer. My mortgage will no longer be paid by the time I am sixty (or perhaps ever!) but I am spending all my time with my husband making sure we are living a life after stroke. I didn't have these things in the right order before his stroke.
Now, your Mum. If the epilepsy is causing confusion, agitation and paranoia, perhaps treating the epilepsy will ease these feelings. That is a very definite question for a doctor. If these feelings are removed she may go back to enjoying being cared for.
This is all very stressful for you, I can't imagine how all consuming it must be.
It sounds very much like speaking on the phone is not enjoyable for either of you, so it completely defeats the object. I wonder if your Mum would enjoy it if you made video clips of you and your little one playing or just living life, you could perhaps send them to your sister to show her. You could send her messages and she wouldn't need to respond or have to concentrate for long.
I don't know what the Stroke Association's policies are for who they support, but it would perhaps be worth asking. Or even finding a local stroke group as there would be many people there who know what you're going through. Or, there is the Samaritans, I know it sounds drastic, but they support people with all kinds of problems, I spoke to them once years ago, before I even met my hubby and was at the end of my tether with one thing and another and I found them very calming, supportive and empowering - is that the right word? They made me feel more able, more capable. Sometimes just getting it all off your chest and hearing someone else say, poor you, that's crap can make you feel better, justified, reasonable.
I completely agree with you about the stories of recovery that seem to be all we hear about. It's lovely that these people have made these miraculous recoveries but the truth is that many, many people don't make as much/any recovery and have to live with terrible disabilities and hidden difficulties. I would like to hear as often about people who haven't recovered but are actually living some kind of fulfilling life.
I'm glad you don't find my lengthy posts off putting or too waffly (what a team, pancakes and waffles!), I am not a concise person really, I'm not into using one huge word when I can use fifteen little ones and I do have a habit of writing exactly as I talk. Teachers hated me! But these 'journeys' we go on are so intense that we learn bucketfuls in such a short time, you're experiencing decades of changes and emotions in a few weeks, and so, there is a lot to be said.
I do log on most days, have had a couple of days off as yesterday we were down your neck of the woods doing research at City University London and then out to dinner for my birthday, then today's my hubby's birthday so we've had a lovely round of visiting, skype and facetime calls. Tomorrow I think we need a rest! But you keep posting and I'll keep suggesting and maybe one day, someone else will join us too - there are hundreds of us out there!
Hi just joined as I had a stroke in my cerebellum . I had a visit from stroke association lady today(very nice) She gave me lots of leaflets and I thought I would join the forum. Hope to talk to other people who have been in same position as me (WALKING ROUND LIKE A DRUNK-PEOPLE STARING ALL THE TIME).
I had a cerebellum stroke last June too and initially couldn't walk but then did like a drunk person!!!! I now walk normally and you would never know I had been ill, it just took a lot of physio and time. I still stagger a bit when I'm tired but nothing which affects me getting on with day to day life.
All I can is don't loose hope and I know I got a lot better!!!
I had a Brain Stem mini stroke 10yrs ago at 46 and it was basically misdiagnosed by hospital and i was told to go home as just a migraine!
Long long story,..... but i saw a Neuro privately 3wks after the event (could barely walk as dreadful balance probs)...he told me verbally that i had had a mini stroke in the brain stem after i have him a history of symptoms. He did an MRI which was 4 wks after the event now and it came back clear? He told me this happens but i prevented as a stroke patient so had lots of other tests. I told him I was going down the road of negligence by the hospital and not long afterwards he wrote to my GP but told him my MRI was clear so I therefore hadnt had a stroke? (you couldnt make it up eh!)
I was sent to Stroke Rehab interestingly and the Physiotherapist wrote a report to my GP stating i definitely presented as having a stroke and she treated me as such. I showed the Neuro this report and he just laughed and poo-pooed it.
A couple of years after this event, my palpitations i had been having for years, were confirmed and I was diagnosed with Atrial Fibrillation, a major cause of stroke!!!
I have never been able to work since as i never recovered from this due to lack of acknowledgement from health professionals.
I have had three further episodes in the last few years, of sudden onset of severe vertigo with right sided weakness... very similar to original symptoms but not quite as severe...both times i have been to the hospital A&E who have just said they weren't sure but gave me stemetil to stop the vertigo/nausea. No MRI or CT carried out?
5 months ago, i had a further scare and was sent to a different Neuro who was quite frankly, the rudest consultant i have ever met! He went through my 10yr history and said, 'there is no medical reason to suggest you ever had a stroke'??? Your MRI was clear so you couldnt have had one?.....I was too gobsmacked to reply and when i get upset or stressed, i lose the ability to speak and am unable to express my thoughts (since 1st stroke). He labelled me as having a neurological condition and just wrote down the details of a website he wanted me to visit and dismissed me! This website horrified me when i read it and it was for people who have had a psychological trauma sometime in their life??? That causes the brain to malfunction?
What i would like to know is (before i file a complaint ) has anyone else had a clear MRI and/or just been diagnosed with stroke on symptoms alone?
Sorry about this being long.
My case is the same. I lost my hearing, I have everyday pain. I can't even in a place where there is mush noise. It will be good to get answers.
Is there anyone who can help us.
I hope you get help....
AS I have stated in an other post, It may be that you have had or are having
a TIA that could lead to a CVA stroke if not treated
I hope that helps
Hi I am 52 I had a stroke 7 years ago I was left with a weak left side 'drag leg' but not all the time I assume it comes back when I get tired does anyone else have that problem ? Four months ago I had another episode they think its another stroke waiting for MRI results again drag leg but worse but some days not doesn't notice as much as others , also fatigue is much worse :( does everyone have symptoms that are worse one day and better the next ???
7 years - me too. It gets boring after a while. Still staggering around but sort of used to it. Trouble is, I've also got cancer now so sometimes feel a bit depressed. Doctors no help but they do their best. Although I have many 'residual effects' I suppose I should be grateful that I'm still alive.
I still enjoy a glass or two of wine and am lucky enough to have a caring wife.
What can we do?
Hi Boo, I am 61 and I had a major stroke nearly 10 months ago. Although I have recovered well from the initial total paralysis of my right arm and leg, fatigue is now the main remaining issue for me. Some days are fine, others I just have to go to bed and sleep.
From comments by the medics treating me (and browsing this site and others), it seems this is not unusual. So yes, for me, symptoms can be worse one day and better the next. I call them good and bad days. I think my family and friends are getting used to the idea!
In September I had a PE, treatment with Warfarin and Heparin resulted in a stroke. I am now on Warfarin for life. In December I felt light headed, went to A & E and my INR had dropped to 1.8. I was given an injection and my warfarin dose was updated for a couple of days. I felt better. A couple of weeks ago I had the same feelings, went to hospital and although warfarin level had dropped a little no real change was made to dose. I was admitted and had a range of tests done with no problems identified. I have been discharged without any real answers. Do other stroke sufferers have these feelings of ligh headedness when INR levels drop?
Hello, i have been researching about stroke but i am still trying to find out why my uncle that had a stroke last for months does not want to sit on the chair that long. His therapist wanted him to sit at least 3hrs in the morning and 3in the evening. I put him on the wheelchair not even 30mins he starts crying. He tried all different type of excuses to make me put him on the bed. He wants to be in bed 24/7 but i don't accept that. If i try to do some exercise on his right side he starts screaming. I don't know what to do i am about to give up and take him to a nursing home. Please help...Oh he has aphasia and right side paralyse.
Could it be that his wheelchair is uncomfortable? We had to get my Dad a good one as the rental from the hospital was falling apart.