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What is a stroke, who is at risk and recognising symptoms
My stroke,12 months ago,has left me with constant,overwhelming, exhaustion.
My GP, together with my stroke consultant, have prescribed Mirtazapine and Amantadine with no success. They are considering Modafinil.
Does anyone have experience of using this drug and, if so did it help ?
Any information about help in overcoming this continuing tiredness would be appreciated.
My late father was a stroke sufferer who sadly has now passed.
I am trying to sell his car which has a 9 way lodgesons adaptation suitable for anyone with a single arm disability.
I would really like it to be made use of - rather than selling it to someone who wont use the adaptation.
I know how much it meant to my Dad when he got the car adapted - it gave him back his freedom and cheered him up greatly.
does anybody know of anywhere I can advertise the car where it would be visible to people with similar mobility issues.
I didn't want to post it on here as an advert as I thought that would be wrong.
I'd really appreciate any advice or pointers .
I would like some information regarding social activities around Bingley and Bradford for my Husband who had a stroke last October.
Can anyone help please?
Hi, I'm new here I have been living with the aftermath of a huge stroke for 20 years. I was only 4 when I had it. It was caused by a bloodclot on the left hand side of my brain so my right side of my body is affected I was wondering if there are any other people who have had a stroke very young on here
I wanted to post a reply to "new to stroke" but I cant find the original post. I too had a stroke on 3 May 2014 and fall into the otherwise-healthy, youthful 61 year old category. I consider myself lucky in that my speech, though slow ,is now understandable and I can walk slowly- sometimes with a stick, I can climb stairs, and I live independently.
However, fast though my improvement has been, this has meant that the community support (OT, physio, speech therapist) have all 'left me to my own devices' because I have been progressing so well. I am not driving and I live in a remote hamlet. I put on a brave face and everyone thinks I am doing marvellously and so, 10 weeks on, it is assumed that determination will see me through... but I am not doing my hand exercises; my only exercise is walking round the house or vacuuming (rarely), and I am concerned that I have reached a point where I don't really believe that I can improve further, but I wouldn't dream of appearing to others as anything other than positive and motivated. I also worry about my daughter, who has been amazing, but she's also juggling a job and a young family. I seem to be surrounded by sympathetic folks but what support is there for her, other than me pretending I am fine ? Neither of us wants sympathy, we just want me back to 100% and I think she feels guilty that she 'leaves me to get on with it'... but I'm stubbornly independent. Should I ask for more community support instead of a visit once every 2 weeks which has now ended? I worry that I haven't got the motivation which everyone thinks I have.
Motivation and brave faces seem to me to be things that come and go, sometimes I find it easy to be motivated and positive and other times the thought of another 40 years of life as it is makes me want to take a very long walk off a very short cliff. I guess we're normal in this and I'm sure if analysed there would be reasons for our ups and downs. It sometimes takes me a while but I can usually identify the reason for my 'downs' - they are often outside of (but semi linked to) my husbands stroke. I am not naive enough to think that if it wasn't for my husbands stroke all would be rosey and I'd never get down, but the stroke does seem to have created many problems!
NHS therapy does seem to vary across the country, I'm not sure there's a theme but in Lincolnshire it seems to be that they discharge you when they think there's no more progress they can make with you. In the case of Speech Therapy my husband has proven them wrong - I would love to take him back to see them! But, except for going private (or getting involved in research) we have to make the best when therapy finishes, continuing with exercises, trying new things, even asking for referrals if things change.
Living rurally and not driving must be really tough. In Lincolnshire we have a service called CallConnect which is a semi regular bus service that you book to pick you up from your house when it's in the area. You could investigate if there's one local to you. Alternatively, you could be completely honest with your fellow villagers, perhaps print off some notes that tell people you've had a stroke, you're adjusting to your new capabilities but struggling with not getting out, could people let you know if they're going anywhere so you could get a lift. People are often pleased to be able to help.
Have you any contact with your local Stroke Association lady/man? Apart from being a great person to offer support they are a wealth of local information. When I filled in my Stroke Association Volunteer application form one of the 'jobs' was driving - there maybe a driving volunteer who'd happily pick you up and take you to a local stroke club for company, giving and getting advice and doing your exercises!
Now, your daughter. It took me a really long time (and perhaps a blunt pointing out) that when people offer help they mean it, they want to help and it's as much for their own therapy as for yours. We don't like being out of control and we don't like not being involved in something we care about. Obviously it's brilliant that you're so independent so your daughter doesn't have lots of jobs to do for you as well as your own but she'll still worry - especially if she doesn't feel that she knows what's going on in your head. My husband recently took part in some research to see if Solution Focused Brief Therapy was possible for people with aphasia. It's a brilliant, life coaching type of therapy that you and your daughter could do a version of, over a cup of tea and a chat once a week. The idea is that you come up with ten things each week that mean your life is going in the right direction, so if you've been doing your exercises once a week then twice is an improvement, if you've walked round the block without your stick that could go on, anything that is an achievement for now (not pre stroke) no matter how tiny. We found it a really nice way to identify and celebrate success, and by doing so we were motivated and encouraged. Your daughter could even make a list of things that she feels are going well for you and you could compare. I think this is quite a structured way of doing something that very positive people do naturally - I'm hoping that if we do it long enough it will become natural for us!
You seem worried that your daughter isn't being supported, she's perhaps finding support in all the parts of her life that haven't changed, her colleagues at work may be supporting her or her friends outside of work, even Mum's at the school gate. I remember one morning going into the village papershop (where our kids have all had paper rounds) and the lady saying 'how are YOU' - I just burst into tears and ended up with a long chat and a cuddle, it's amazing where you can find support when you're not confined to the house. You could tell her/show her this forum if she wants some more stroke specific support or she could call the local stroke association - they support anyone touched by stroke, family included.
I think maybe you and your daughter are both worrying about each other - perhaps a cup of tea and a cuddle mixed with a bit of honesty might put both your minds at rest!
I am going to use your words now - after your 'fast improvement' for the first 10 weeks it may have slowed down considerably but so many people we hear from seem to continue making small progresses for years to come - my husband is still improving two and a half years on, he doesn't see it though! Don't think that you can't improve when so many others do!
The other thing that has occurred to me is that it took me about nine or ten months to actually realise the implications of my hubby's stroke and for it all to sink in - that was when my motivation and brave face started to wobble, I wonder if you've hit that part now and that's causing your feelings. We went to the UK Stroke Assembly last month and there was a really interesting workshop by Relate where they talked about the feelings people commonly experience after stroke - the slides aren't on the website yet but hopefully they will be soon - if you could identify where you are on the 'cycle' you might be encouraged by how normal you are or reassured by all your feelings being there in black and white.
What many, many people forget (or don't realise) is that stroke is a major, life changing occurrence. It takes from you more than just speech or mobility or understanding, it takes some security from your future, it takes many of your activities in the present. It can take a lot of hard work to both overcome disabilities and be in a position to look forward to the future. This hard work is exhausting and it's no wonder that many stroke survivors do struggle with depression. Don't be hard on yourself, it sounds like you're doing brilliantly and the fact that you've identified that you're having a wobble is very positive as you've done something about it! I bet you felt better just writing your post......
Let us know how you're getting on - it's really interesting to hear from people who've found some kind of solution.....
Hi Paula, Thank you so much for reading my post and for responding so fully. It is really appreciated and I shall show my daughter tomorrow. Some great tips there. if there is a good side to stroke it is the opportunity it can give to show those you love just how much you treasure them. I hope your husband continues to improve and that you receive support too. I have noted your comments well and it is heartening. I owe it to my daughter, and to you too, to stay positive... and I will. My very best wishes to you and yours for the future... Annette
I had a stroke in March, aged 52, and otherwise fit and healthy.
I was got to a hospital fast, fortunately, so I've recovered very well so far: I have regained movement, swallowing, etc.
In the past six weeks or so, though, I've started to feel stiffness in muscles (shoulders, back), and about three weeks ago my consultant said it was due to the statins (Astorvastatin), and cut the dose.
This doesn't seem to have made any difference.
Is it usual for statins to cause stiffness weeks after starting to take them? Has anyone had success with co-enzyme Q10? There are mixed reviews about whether this helps or not, but I have started taking them.
Any information would be gratefully received, thanks.
My mom also suffered a stroke some 3 months back.Her right limbs got paralytic. Few days after she felt intense pain in her right shoulder. Physio minimized the shoulder exercise. And after 1.5 months her hand started swelling. Her pain also increased . After consulting doctors they said since the movement of shoulder muscle is almost nill she is having stiffness.
So physio started the shoulder exercise. And I tell you how much she cried when he does the exercise. She felt intense pain.
But after a week the stiffness is very low. Even the improvement in her hand is very much as compared to initial days.
Due to shoulder stiffness many of her lower hand muscles also get stiff.
So its better to keep moving your hands after some time. Or if you can do it yourself take some one's help.
Hi all . I'm new here and struggling with all kinds of issues . My husband had a mild stroke in march . He's 47 . Basically he is recovering but I find he is really really tired most days and even though his blood pressure is controlled and his diabetes is controlled now ,most days he says he feels unwell. It seems to me he is getting worse and not better ...or maybe its just me ,? Is this extreme fatigue being experienced by anyone else ? Is it common? I also find he is not quite the same person he used to be .
Yes, I'm fatigued almost as soon as I wake in the morning, although 10 weeks after my stroke I don't have to lie down every day any more... but I do sit down a lot!! And doing ANYTHING can make me very tired. Good luck, I hope progress continues and I suggest if he wants to lie down then you do as well !!
I had a stroke nearly 3 years ago and it normal to feel tried all the time. Its only 3/4 months since he had his stroke it was about 18 months before I could last a whole day without lying down. Check out link below gives some useful info. http://www.stroke.org.uk/sites/default/files/F09_Stroke%20in%20people%20...
Thankyou for your reply ! I hope you are doing well now x
Hi all, my father has had a haemorrhagic stroke. After having it he has been quite lucid despite the bleed being described as significant, however in the last couple of days he has stopped talking to us and has become very distant. He has also stopped feeding himself and shows no interest in doing it for himself. The doctor says there is no sign of further bleeding or any urinary infection (he has a catheter) however his sodium levels were low last week and have lifted slightly but are still below what they should be.
Hi, I am new to this so I do not really know what is the norm but here goes. Monday 30th June at 8:05am my Aunty (aged 42) had a stroke. Her initial symptoms were diziness and extreme fatigue. She went into the living room where her daughter (15) helped her onto the sofa as she was saying 'I will be fine after a little nap'. 11am I recieved a call saying she had been rushed into the Acute stroke uni at LGI and that is where she remains now. We have had some what mixed messages from the healthcare professionals, however from what I can understand, it is not a very good situation at all. I am trying to remain positive and strong for the rest of the family as you need to be in times like this but I am finding it extremely difficult. She has brain damage to the right hand side of her brain therefore effects on the left hand side of her body. Since being admitted to hospital she has mainly been drowsy and drifting in and out of consciousness/sleep. She has had some scans and basically we have been told that she does have brain damage and will have some form of disability if she recovers from the stroke, however we have been plainly told that she is on a 50/50% road now. They were planning to do an operation whereby they would remove part of her cranium to relieve the swelling of the bleed on the brain but I believe that they are holding off on the op as the scans showed no progression of swelling but no reduction either. I am just wondering if anyone has had/knows of any similar experiences and what the path ahead was/is like. I am quite a positive person usually but in extreme cases like this I cannot help being slightly pessimistic. The docs have managed to get a liquid feed via a tube through her mouth and nose and she has been speaking a few words to her partner but not proper sentences. I read that drowsiness afterwards can be a really bad sign. I'd like people to be honest, and not sugar coat the facts.
I am just so worried and anxious and the days are so long - it is just one big waiting game and I would just like to hear from someone who understands how it feels.
My Husband had exactly the same thing last October, he too was in the LGI however he had the brain operation to remove the swelling and eventually returned home early January. Its a long slow recovery aided by some wonderful professionals so take heart.
Tiredness is normal, it takes ages honestly and its hard at times, we are proof of the success, we were at one stage given no hope at all ( two days following the stroke) LGI saved my Husbands life basically.
You do get very tired and very anxious and any progress initially is tiny, its a horrid situation for a few weeks, I do remember it well.
Life is not easy now at home but its far better than the bleak alternative initially offered.
I hope this helps you a little.
Hi Robyn, sorry to hear about your Aunty. I wanted to sure a bit of hope with you, I myself had a stroke in 2011 and was in a really bad way, there was only a 1% of me living. The Doctor has to tell to you the worse outcome. It good that she saying some words even through they don't make since, I didn't say my first word till 3.5 months after stroke. Keep in there your aunty will need all the support she can get.
Hello, I am conducting research into the experimental procedure commonly known mechanical clot retrieval for stroke. (It is also known as mechanical embolectomy or intra arterial thrombectomy.) Have you or a friend or relative ever had a surgical procedure where an attempt was made to remove an acute ischemic clot from your brain via a surgical procedure, as opposed to being given a clot busting drug, or after a clot busting drug was administered but did not work? I would like to hear of your experience, whether first or second hand. Kindest regards and thanks in advance.
Hi I am completely new to this. I have never been part of a forum and have never needed to ask for advice regarding any medical issues.
My 14 year old son had a stroke on Thursday 19th June 2014. We rushed him through to the hospital as he was convulsing , they did an immediate Ct scan which showed clear. He woke up on the Friday and had lost all sensation on the right hand side of his body, slurred speech, memory problems. They then did an MRI which showed that he had had a minor stroke on the left hand side of his brain.
They say he had a Minor stroke on the left hand side of the brain. Which has affected the right side of his body, speech, memory. They saying he won't recover 100% but 98% - he has improved everyday and was doing so incredibly well. Sensation was returning, he could walk with a slight limp, arm was still a bit of a problem , speech was returning, smile was almost back to normal. He is a very healthy child, very sporty and we have no family illness and all tend to live to a very ripe old age. We have been very blessed as a family and I am extremely grateful for his
They have In the meantime done hundreds of blood tests, scans etc. everything is coming back clear. He has started various therapies, such as OT, Bio, Physio, Speech etc. they all saying his recovery so far has been remarkable. As he was showing vast improvement.
On Saturday 28th June he sort of had a relapse, not a stroke but has lost all sensation on the right hand side of his body. It came back for about 30 minutes and then went away again. He went to sleep and woke up this morning sensation had returned to his leg. But sensation has gone again, but is now affecting his face and speech.
Can someone tell me if this is normal? Are there other tests I can ask them to do? I feel so helpless,
So sorry to hear about your son, On the day of my stroke I had feeling coming and going. Movement comes and go but don't know about sensation have a word with Doctors.
It could be years before they find out what happened as I'm still waiting nearly 3 years.
hi , my 49 yr old brother had a major stroke yesterday and i just dont know what to do , he is so helpless most of his right side is not working he cant talk and has a problem swallowing , will he improve ? its horrible to see him like this he cant even write anything down and i feel so bad as i dont know what he wants he is trying to get things across but i cannot grasp much that he means . me and my mam just do not know what is going to happen with him
My great auntie who is 90 had a stroke last year and was the same, she found it frustrating as we did, but she improved daily, you actually start to understand after a little while, just listen and try not to jump in and speak for him, she said she found that more frustrating than struggling to find the words herself as she said she found it threw her train of thought. I feel for you, it's horrible seeing someone you love so helpless and not be able to make it better. Just try and be patient, he will improve daily. Slowly but my aunt was back to normal within a month, and that was down to the hospital and my dad recognising that she had had a stroke and calling an ambulance straight away. A year on you would never know she had a stroke. I had a mini stroke two weeks ago and physically I am fine, but my head is every where and I find it frustrating because I look fine but find it very hard to concentrate and my short term memory is gone, I sometimes struggle to say words which is really annoying as I can see and hear it in my head but I can't get my mouth to say it and it turns conversations into a game of charades as people keep jumping in and trying to guess what I'm saying. Which makes me annoyed! Lol x
Hope your brother is still making good progress. My partner who is 55 had his stroke on 31st may 2014. He could not move his right side, speak, swallow and worse of all did not know who I was. But, nearly four weeks on he is now finally back on normal foods and the his speech is improving day by day. I saw him take his first steps last week which blew me away. Obviously with the help of a physio team. But, still amazing to see. He is on some very strong muscle relaxant tablets which whilst making him very drowsy seem to be helping him get movement back in his leg and arm. Stay strong even though it's very hard. We have an eight year old girl which was heart broken when she saw her daddy for the first time. But now she visits him every night. We play card games, do writing exercises, practise his facial exercises with him. Some how try to make light of a very upsetting and challenging situation. Over the past few weeks I have realised keeping his spirits up and not letting him get down has really helped his rehab. I have also been allowed to go to one of his five rehab sessions each week, which has helped me see the progress he is making. Every day it breaks my heart to see him like it. But to see where he has come in just a few weeks is amazing. I never thought he would be where he is now to how he was the day he had is stroke. Somedays he still can't remember my name and still gets very confused. But we just make a joke of it now when it happens. Hopefully over the next few weeks your brother will start to have little miracles happen also. Xxx
Bless you and your Mum - and your brother of course - it's so hard to get your head round isn't it.
We can't tell you if he'll improve, which is frustrating, but there's just not the understanding there, science doesn't have that knowledge yet. What we can tell you on TalkStroke is our stories, hopefully you can be encouraged by them, while understanding the huge task that could be in front of you.
Your brother sounds very much like where my husband was at two and a half years ago. The important thing for your brother right now is that he's on a specialist stroke ward and he's getting as much rehab (Physio, Speech and Language, Occupational Therapy) that he can benefit from. You can help by sitting in on some sessions to learn some exercises and repeating them as much as possible through visiting times.
I'm not sure it will help you to know what my husband could do when, as it probably will have no likeness to your brothers recovery. But I can tell you that being in hospital was just the beginning, we have had much recovery since he came home (at seven weeks). For the first six weeks at home Assisted Discharge therapists came to our house for rehab every day, this is really important to keep up the exercises - and to keep changing them as progress is made. BUT even though therapists came to the house each day we still did hours of exercises on our own each day, just repeating them as often as possible.
After assisted discharge we were handed to outpatients where progress continued - it is possible to make progress months and years later so don't give up - Speech Therapy ended about nine months post stroke, which was really scary as we weren't getting much speech at all, but since then there has been massive progress, partly due to time, partly due to massive effort and partly due to some extra therapy in research programmes. We still go to physio now to perfect walking, in order to be able to walk on all surfaces without needing any assistance. Unfortunately the arm still does nothing, but we still try to keep it in good shape and remind it that it has a purpose.
All that may or may not be interesting to you, but perhaps right now is more important. Does your brother have a picture chart? If not you can get one at...
(this organisation also does workshops to help carers learn to communicate with their stroke survivors)
When my husband was obviously trying to tell me something I would hold things within reach (wee bottle, drink, bed controls, tv remote, blanket) and he would bat them away with his good hand, or sometimes I could tell by his expression if it was the right guess. I rarely got it right first time, but at least he wasn't wetting himself with this method!
A note book is a really good idea, your brother may be able to draw things you can understand. Just because he can't write anything today doesn't mean he won't be able to tomorrow so make sure he has the tools and get him to doodle, copy you, anything to get his brain working.
It can also be really useful when you're talking to your brother to write down key words, draw diagrams or list peoples names - once it's written down your brother can ponder over it and if he wants any of it repeating he can simply point to the right bit of page. Even now sometimes I have to do this for my husband to understand complicated things (I was doing a family tree on a napkin at a funeral this week!).
I know that it's heart-breaking, it's frustrating and it's so tiring, but I believe it's worth effort as even if the actual speech doesn't come back very quickly you and your brother can get better at communicating so he can be understood. There are techniques you can learn and you will make up your own.
You might find you need to ask closed questions if your brother can yes/no or nod/shake head or thumb up/down. There's also a technique called Forced Alternatives where your left hand is tea and your right hand is coffee - you hold your hands up saying tea (raise left hand) or coffee (raise right hand) then your brother would touch the one he wanted - just repeat it back to him though to double check.
Visiting times can be really painful as onesided conversation is not easy to keep up for weeks on end, so as well as some therapy exercises we used to play games, connect 4 is a good one as it gets a stroke survivor using the whole field of vision. I also used to borrow jigsaws from all my friends with little children, getting progressively more difficult, my hubby seemed to be motivated by my leaving a jigsaw at the end of afternoon visiting and coming back to it finished in the evening.
We used to sing as well, started with nursery rhymes and football terrace songs and then I brought in his guitar/song book so we had some words. Has your brother tried singing - I am still amazed how well some people can sing when they cannot speak a word. It's got to be good for the mouth all that moving around, and to keep the voicebox working and for a bit of spirit raising.
Are there some children in your family? They are refreshing as they have no fear or prejudice, they accept what they see. My husband also tried things for our kids that he might give me a funny look over, some of the kids turn therapy into games and try having him dance or play word games.
I hope I've helped a little, both with some techniques for now and some understanding of how some people recover. I've not mentioned that it really is early days, (they last for weeks/months) so there is lots of potential for recovery. But there's also the potential for a long, tough, time ahead so look after yourself and Mum too. Make sure you eat, exercise and have a bit of time for yourselves too - your brothers going to need you all strong, positive and tireless!
Take care, let us know how you get on
hi paula and thanks so much for your reply and suggestions it helps a lot , i was at the hospital again today and he is showing some signs of improvement !!! , he is a bit mor mobile today and i understood him a few times he has def improved since wednesday but they have put a feeding tube in . even such little signs have helped me and my mam feel a little better . we even got a chuckle out of him so his sense of humor is getting better too x
I'm so pleased you have improvement already - hopefully he'll recover at a good pace!
Isn't it reassuring though when you see that your loved ones personality is still intact - laughing has got my hubby and I through a lot!
Fingers crossed for your bro...
My husband had a stroke last September and has Rt leg weakness and no use at present in Rt arm. We have just recently moved to a chalet bungalow to make life easier for Roger. Last weekend we purchased a preloved mobility scooter that will enable access to shops etc in our town. The question I am asking is anyone driving a car that would be high enough to allow my husband to sit in, he's 6ft 3in, but will also allow me to get the scooter in the back with ramps but has a low entry tailgate. Life has certainlt been life changing and challenging but hopefully we can share ideas through the forum. Many thanks
A good site for information about cars ( access; loading chairs/scooters ) is:
It might be easier to use shopmobilty when you get to your destination.
Many Thanks Janet. We do use shopmobilty signed up for that in Norwich, but what we are hoping for is able to go out and about with the family were there aren't scooters for hire. But we will try that site.
Stroke is a serious medical condition in which blood supply is cut off to the brain. People says that if you want to detect stroke, then keep remember "FAST" which represents Face which will not have a previous smile, Arms can't life anything, Speech will be disturbed and then it is Time to dial your emergency number to hospital.
The third largest cause of death, stroke, can be prevented by our diet, exercise and some precautionary measures. Maintain your body by healthy and fit regular exercise. Poor diet, no exercise, obesity and smoking are the most effective causes of this disease. There are some extra chances that you can have a normal life after an attack of stroke only if you are able to go to the hospital and there you will be treated immediately.
consumer reports medical alert systems - AskGilda
My father had a haemorrhagic stroke 4.5 years ago when he was 58. It's left him completely paralysed down the right hand side of his body and he is unable to say more than a few words at a time, and even then he struggles to get anything meaningful out. He's gone from having an active and sociable life to sitting in front of the tv all day. My mum also has significant health problems and even with carers coming in 4 times a day and home help struggles to look after him. It's difficult for us to get him out of the house and there are no stroke support facilities near where they live (East Anglia is a black hole). I have no idea how he managed it but he fell out of bed on purpose last week. A few days later my brother found a chisel and piece of rope in the magazine rack which he'd somehow got and stowed away from the utility room. My brother managed to get out of him that he wants to die and wanted to kill himself. I understand why - he has little quality of life, but it makes me so sad that he is this unhappy. I don't know what to do or how we can help, or what support we can turn too, and would appreciate any advice. Thanks
Have you tried headway there a brain injury association. https://www.headway.org.uk/home.aspx
Really feel for your dad & of course you and the family too. Where do you more specifically live, and I'll try and find some people/groups who are as close you all as possible, and try to support you in some way. Different Strokes is another stroke charity, mainly aimed at anyone who is of working age or young at heart (however old that may be!), who could also support & advise you too...
This is a really tough one, especially if your family is getting no support - have you called the number above to see where your nearest Stroke Association Family and Carers Support worker is? I know East Anglia's a big place but I'm sure there's support in Peterborough and we've been to a Stroke Association fun run in Hunstanton - the chap running it lives in Aldeburgh, so there is a smattering if nothing else.
I read somewhere once that there is a huge proportion of stroke survivors who become depressed, it's perhaps not surprising as life does change so very much but the damage to the brain can also be a cause. If you've not already done so I would try to get your Dad to the GP to talk about things and perhaps have some medication. I know that nobody wants to be on antidepressants and a lot of people don't like taking tablets at all but this is about your Dad having a life NOW, not in twenty or thirty years - that's what I tell my husband.
My husband, perhaps, has less difficulties remaining than your Dad, so I'm not suggesting that you trek into London, but we travel fairly regularly to London to take part in Aphasia research. The last project he took part in was about Solution Focused Brief Therapy, which wasn't to help his speech it was to see if this kind of therapy is possible to do on people with aphasia. Stick with me....... I found it really hard to understand the therapy until we got going, but 2 months on we are still practising the theories (well, the ones we understood from it). So, it seemed to me that each week we went for the therapy my husband had to think back over the previous week and think of ten things that meant that life was going 'in the right direction'. Even if these were tiny little things, we still celebrated them. It was quite difficult finding these things so we started to list them as we went along, as a result we have a little notebook full of achievements, yesterdays note will include my husband reading a little book to our two year old niece. Interestingly, just having the incentive of the notebook to write achievements in seemed to encourage my husband to try things he wouldn't have dreamed of - scared the living daylights out of me at times, but we've had no real damage done!
If your Dad's not in the right frame of mind it may be a struggle to involve him in celebrating achievements like this but, perhaps you could tell him you're doing it for you - to help yourself lift your mood. I think, in a strange way that you could put the chisel on the list, if he could fetch that, perhaps he could get his own biscuit - you see where I'm coming from.
It might be worth pursuing how he did get the chisel and string, perhaps that can be turned into something useful - if he's like my husband he will really enjoy doing things for other people and himself. I remember on Boxing Day last year my husband got up out of his chair and asked me did I want anything - I was nearly in tears at the clarity of the words that came out, let alone the fact that it was then two years since he'd been in any position to fetch me anything. I panicked and struggled to think of anything that I thought was possible, but didn't want to decline! I remembered a toblerone was on the kitchen counter so asked for that - never enjoyed chocolate so much in my life! We've still not managed tea in bed, but you never know......
I wonder what makes it difficult to get your Dad out of the house, can you explain that? If it's his attitude or feelings that are getting in the way then you might need emotional blackmail, please Dad - for us? - if it's logistical reasons then your GP might help there too, you could be referred to an OT who could come to the house and help find some work-arounds.
I'm nearly done I think, but like your Dad, my husband has often expressed his desire to 'end things'. I was always very firm with him and told him that he's got four kids, he chose to have them and he's got to be here for them, no matter his disabilities, they'd rather have him as he is than not at all. I think he's not as bad now, he even recently admitted to not really wanting to die but his aphasia makes it hard for him to explain all the feelings he does have - 'shoot me' was quite an easy one to say. My Stroke Association lady had us come to their regional meeting to tell all her colleagues exactly our story, including the fact that I have had to talk my husband out of dying - she says it's not talked about often enough in the 'stroke world' it's awkward so we don't talk about it. I'm not sure what point I'm trying to make here, your family is definitely not alone, but I'm not sure that helps..... Having said I'm firm with my husband, I'll also put my arms around him, cry with him and tell him I know it's crap. I'll happily reminisce over the good old days and all the things we used to do, then cry because we're not doing them now and maybe never will. Would old photos cheer your Dad up for a while or make him worse? Maybe Dad could have a project of sorting and scanning all the family photos.....
It is really hard for younger stroke survivors who don't make a remarkable recovery to find a purpose in their life, as their chief supporters I think we need to be quite inventive in giving them a purpose. Every 'job' you're doing, ask yourself could Dad be doing that for you, or even part of the job. Very early on I figured out that if I sat on the floor (I know - hospital floor, yuck!) my husband could still stroke my hair - I probably would have had a nervous breakdown otherwise!
So, my suggestions are seeing the GP in case there's some chemical imbalance that could be helped, finding jobs that Dad can do to give him some sense of worth, and celebrating and building on anything he does manage to do.
It is a real battle, I know, I hope you have a girlie friend you can have a good cry on to let it all out. Take care of yourself
PS - is Dad's typing any good? We have an iPad app called Predictable which, with effort, my husband can make sentences in - they can be saved in categories to be easily found next time, check it out.
Does anyone else suffer from a muzzy head sometimes and does it go ..I had my stroke in feb xx
Hello I had a stroke in Feb too, and yes I sometimes get a muzzy head. But I have been told by the stroke team, to tell them or my GP about any new physical feelings. The main thing is not to sit worrying but to let someone know. My muzzy head tells me I am doing too much, and to rest a little.
Hi everyone, could someone please help me, dont know where to turn. My father who is 83 has just had a stroke, not a full blown one, but a stroke non the less, his right arm has packed up, he can move his fingers, but to weak to grip, slight slurring when talking and has trouble walking and when he does walk its slow, and when he stops, he starts to lose his balance. Hes memory is still good and still has a good appetite. What i would like to know is, hes only been in hospital for a week and they say he might be out in a couple of weeks, is this normal and whats the average time scale for his condition, I really would like him back home.
hi, am new to this site and need some regarding my dad, i dont know where to turn. my dad had a stroke about 2 years ago. he never went to the doctor or hospital. we thought it was just his lifestyle that's made him the way he is. however the symtons seem to have gotten much worse. he can hardly walk falls over alot, speech is very poor lost all continence, lost alot of weight and his mind just isn't there. its very bad. i will start with what happend yesterday. my dad has been staying with his mum and sister (who have a large house and have the room!) they have been dealing with his housing needs and stroke needs taking him to the doctors (but they haven't been gong in with him) its very obvious that my dad is in a state but he does need someone to go in with him and explain. so yesterday his family decided they had enough and dropped him at a hospital and left him there. he managed to ring me and my sister and asked to get him he was unable to tell us why he went there. so we took him back to his mums and sisters house for them to have locked the door on him. we could see them drinking wine through there window so my dad knocked falling over n the process they just got up and shut the curtains! so he has nowhere to go. my sister cares for my nan and care for my disabled son and have another child ( know it sounds horrible but have no room for him as guilty as feel if i had the room of course i would help) his family have treated him disgusting worse than a animal. they have all his medical information as they was dealing with him but they wont give it to us so we are left in the dark not even knowing if he has to take any medication or even if it is a stroke ( we know it is one though) iii have a assessment with him for a sheltered property tomorrow so if it suits him i'm hoping they will sign him up for the property. i'm after any help in any way i really don't have a clue where to start looking. when he was in my sisters car yesterday when we picked him he wet himself on her seat and didnt even acknowledge he'd done it just got out the car and stumbbled off with soaking wet trousers. i feel heartbroken for him. my brother has agreed for him to stay at his until this accomadation is sorted but hes so vunerable and my brother doesn't have the best of tempers and so worried if he has an accident my brother wont be so compassionate (sounds horrible) (cant pick your family) HELP!
Sorry to read about the situation you are in. You and your brother are obviously caring for your dad, and credit to you. You should find you have a local Carers Centre near you, who should be able to offer you advice and support in respect of both your dad's and your needs.
This should include making contact with the local Council Social Services department.
You can find your local Carers Centre by looking at the Carers Trust web-site and typing in your post-code. Here is a link: http://www.carers.org/carers-services/find-your-local-service.
Hope this helps
Hi I am writing on behalf of my husband, 61yrs old when he had his Intern-carainal bleed, is now in wheelchair, has other conditions, but the main thing is pain, it seems that anything stronger than Panadol makes him so confused, has anyone else found this.
Love your username!
We struggle to manage my hubby's pain too. He's on paracetamol/codeine for the 'real pain' and currently amitriptyline for the 'brain pain'. He's tried gabapentin and another one, I can't remember it's name - they both had nasty side effects - not confusion but other stuff. It's still early days for the amitriptyline but we have our fingers crossed! Our GP's really good at keeping trying different drugs, but I think we are lucky with our GP, rural surgery etc etc.
My husband says it makes no difference, but I notice he mentions his pain more when he's due for a botoxing - if he mentions it more, surely it's because he notices it more - I try to be very pro-active at getting botox appointments for that reason. Forgive me if I'm too detailed, but he has botox in arm/hand and leg/foot to ease that tightness and clenched fingers, which in turn (hopefully) eases the pain there.
Living with constant pain is such a struggle, not needed on top of everything else. We're going to the UK Stroke Assembly in Nottingham mid June, and they're going to have a workshop about pain. I'm hoping to learn something interesting! Here's the link to the website in case you're interested in going or, so you can read the presentation afterwards....
If you've not spoken to your GP yet I would get down there and start the 'pain management ladder' apart from anything else, if you're husbands on free prescriptions or a pre-paid prescription card then the cost is all covered so you can try as many different ones as necessary without it costing!
Good Luck - let us know how you get on
I have just been diagnosed as having had an Ischaemic Stroke caused by Atrial Fribullation. Having an inconsistently irregular heartbeat caused blood in my heart to become sticky and it obstructed the arteries leading into my brain. I am very fortunate to have been left with very mild effects, some word finding difficulties and sentence crashes, occasional swallowing difficulties and a slight left-sided facial palsy.
I'm posting this because I didn't recognise my symptoms as a stroke; I put it down to stress at work. Further more my GP aided this by his relatively dismissive approach labelling it a 'funny turn'.
One of the difficulties of getting your AF recognised is that it has to present itself when you are being tested. I have had several 24-hour tapes that have captured no irregularity and I have been in regular rhythm when attending cardiac clinic. The fact remains that your chances of a stroke or a TIA increase significantly if you do have AF.
We expect GPs to have up-to-date and explicit knowledge of everything and of course this is just not possible. We perhaps need to be prepared to be assertive more often when concerned about something even if we cannot provide evidence at the time.
My partners mother had a stroke two months ago. Their family is two halves but have always acted as one unit - My partners bioloical mother died when he was 6 and he has a younger brother and his father is with his now wife and her two grown-up children.
My partner never got over the death of his biological mother and it has never been spoken about, when we got word of the stroke he was devastated and it took me hours to calm him down from him thinking his step Mother was going to die just as his biological Mother had twenty years ago.
Due to this he has not been around at hospital as much as he is deathly afraid of seeing another parent die in front of his eyes.
One of the sad parts is that his family is now operating a split family....his DNA on one side and his step mothers son and daughter on the other....they are blaming me for him not going to see his mother everyday, which is not true at all.
I am effectively being blamed for causing this stroke - I seem to be their go-to girl to place all this hurt and confusion on to when I have done nothing wrong.
My partner has been told to stop seeing me as I am aparently toxic, even though I sorted out all the travel and presents and get well soon cards from our side. I have been nothing but supportive but yet this stroke is tearing his family apart and our relationship apart. Its his mothers birthday on Saturday and I am dreading going as I know I will be told that I am not welcome :(
Stroke affects every part of life and I would be very interest to feel like I am not the only one.
My stroke journey
Had stroke April 2012 very frightening, didn't know what was happening.
Went to hospital , waited around all day for two days , until it was confirmed I had stroke , sent home with medication . Went doctors next day who arranged therapy , had to wait 4 weeks for appointment .
Stroke affected balance, speech and left hand side.
Decided couldn't wait 4weeks , bought my self exercise bike , dumbells and a rubberball. With help from wife exercised gently all day every day went walking twice a day holding hands to steady me and gradually increased distance, by the time my appointment came round I was nearly recovered , I know i was LUCKY , but my message is work at it and dont give up.Now fully recovered
You're completely right - Stroke affects every part of life - when I list the things about my husbands stroke that have been most difficult, other people are right up there. I imagine they say the same about me! Step-families are always going to be difficult no matter how much they all love each other as there is a natural 'them and us', there will be favourites and biases.
Some of the points you've mentioned in your post might be quite easily fixed. If your partner has had no counselling to help him come to terms with his natural Mothers' death then it's no wonder he's in a bit of a pickle. I'm sure his GP would refer him for counselling, he'll probably have to wait a while but even if it doesn't help this time it might help next time - and you can be sure in life there will be a next time, the alternative is even worse......
Secondly, it seems he's not visiting his step-Mum for fear she'll die - is this likely? Would a chat with a Doctor put his mind at rest that (although she will one day......) she's not going to die now, from this stroke. I had to ask a doctor a similar question on about day 4 when my hubby finally had his diagnosis of stroke (it was Christmas time, everything soooo slow) and I was facing a fiance who couldn't communicate, feed himself, sit up, anything really. I used to loiter outside the ward between visiting times as there wasn't time to drive home, so I got to chat to doctors lots and I just asked one of them is this it, can anything else happen, is this as bad as it's getting?????? Maybe not in all cases, but in my husbands case I got a very firm reassurance that it could only get better from here. Maybe your partners step-Mum's doctors could give the same reassurance which would make visiting easier.
I'm going to go off on a tangent, away from ideas to help, just to mention that in my experience everyone reacts differently towards the stroke survivor. Some people find visiting extremely difficult due to the heartbreak of seeing their loved one so broken, but they still manage to visit, to see the small signs of recovery or just to brighten their loved ones days. Other people don't seem to be able to get past their difficulties, their heartbreak so don't visit or visit rarely - they can't even bring themselves to brighten their loved ones day. We have relatives in both categories and I see no reason for them to fall into either category, they just do. But as the months and years have gone past, the ones who've faced up to it, been brave and selfless are benefitting, they are able to converse, to see their Dad's personality shine through and to enjoy spending time with us - it's no longer a chore. For me, even after all this time, it's still shockingly heartbreaking to see my hubby struggle to walk, to talk, having to ask for help to do stupid little things - it hits me like a train when I least expect it - but the fact is that it is sad and to think otherwise would be heartless. But it does get easier, with time you see past these new disabilities and start enjoying your loved one for themself again - but it won't happen if your partner's not brave and persevering.
I'm horrified that people seem to be blaming you for this stroke - what's the reason for this???? Again, chatting with a doctor would help to understand the exact cause and so, possibly, find a reason for the stroke. But blame would imply some kind of deliberate negative action - even in the case of the boy that effectively caused the damage in his Mum's carotid by hitting her with a shuttlecock during a badminton game, you couldn't blame him for her stroke, it's just an accident!
I am casting my mind back to early days in hospital and there were three, major, distinct groups - me, alone - my hubby's parents/brother - my hubby's kids and ex-wife. I guess we operated as three different groups, each with our own thoughts and feelings of the others but keeping them to ourselves. At the end of the day, bickering and blaming won't get a stroke survivor better and while we sometimes can't help how we feel, saying it doesn't achieve anything. However that is probably easier said than done and it sounds like some of your partners family aren't managing it. I'm wondering if you could approach the hospital staff with your challenges and see if they can assist - maybe they could arrange for separate visiting times for you and your partner (or enforce the two at a bedside rule!) is his step-Mum well enough that you could take her off ward to the canteen for a bite of lunch? I remember painful visiting times when we had the same visitors day in day out with nothing to say to each other and I arranged for a physio to work with my hubby during visiting times so we could all watch and be encouraged by his progress but not need to make conversation!
I'm not replying to this very early, but if you read it in time, get on the phone to the ward and see if you can visit early, so you're just leaving as the others arrive. You can tell them you arranged to spread visiting times a bit so the birthday girl can have more individual attention.
I'm a bit of a cow deep down and in your shoes I would be being sickeningly sweet to prove them wrong, maybe birthday girl would enjoy a manicure or a mini-facial while you're visiting - if you're doing that for her and she's loving it then nobody could have any complaints!
Back to the original point, stroke does tear families apart - my friend made me consider the possibility of not continuing with my new fiance when he had his stroke - but it can also make people so much stronger. I hope your partner understands how you feel and is supporting you both privately and publicly. You could always have him read what you and I have written - you two need to be working as a team now and having ideas in writing can help enforce all the points as they can be read over and over.
Good luck today and in the future, let us know how you get on???
Firstly, thank you for your reply – It was wonderful to see and read such a lovely and detailed, caring response from someone who knows first-hand about this, and I am deeply saddened to hear about your Husband and I do hope that every day gets a bit easier for you both.
Apologies for not replying sooner, I did not expect any reply but after logging back on to view and read some more things about Stroke I noticed that I got the reply from you.
As it goes – I never went to see her for her birthday, I was not allowed to attend (wishes from my partners Father) I respect this but was saddened to hear it.
In regards to my story - I feel, in a way, that I do not have any position in which to be affected by it as they are not my family and I am merely an addition.
My partner does understand that I am finding this hard, although he does seem to feel that as I am not family that I should not be as affected as I am and I feel unwilling to bear my sadness and frustration on top of the sadness he already feels.
In answer to my partners mental health – he knows what he feels is irrational but it’s just quite instinctive (or at least a learnt behavior coping mechanism), first port of call in an emergency / situation is to panic and think the worst when it comes to my partner. Luckily I have a bit of health care background and I am able to talk to him in a way that calms, reassures and sets out facts which he listens to however, I have always said to him that I do believe he needs to chat to someone outside of the family about what happened to him and the things he feels and how they affect his decisions. I don’t believe he thinks she is going to die (not from the stroke but he is terrified of that day she will) but his go-to emotional reaction is to flee and ignore after the initial panic and very real drama.
You asked for the reason I feel I am being blamed for the entirety of this Stroke, whilst I do not feel they really hold me personally responsible for causing it, they are acting like it…from the petty deleting me as a friend from Facebook to the more severe – offering my partner reasons to end it with me and the more recent request to stay away from the Hospital for her birthday.
I believe what has happened is this ; Their mother had the stroke in a different country and everyone apart from my partner flew out that same day, dropped everything and went – my Partner was not able to do this due to the line of work he is in.
It’s easier to say that I was the one who told him not to go and believe this, then accept that their own brother could not attend due to work commitments, they were angry he didn’t go and saw it as a sign of disloyalty – even though the reason was very real and I was supportive and thoroughly agreed with any choice my partner made regarding travel or work – it was effectively seen as my fault, my decision for my partner not travelling out of the country to be with his Mother. However, they do think we are both complicit in him not flying out there - I am not the only one being blamed, it is both of us.
My partners brother at the time was traveling the world and had his home based in London – he dropped everything when we got word of the Stroke – I think he may be hurt that my partner is living the same life he always has, whereas his brother cut his round the world trip short and moved back in with his parents. It probably seems to them that their lives have changed dramatically whereas my partners has ‘unfairly’ remained the same – of course this is not true at all.
I agree with you that bickering and arguing won’t make anything better at all so I am now staying out of the situation entirely – Although said slightly off-hand I really wish I could genuinely do those things (manicure / pedicure) for his Mother as she is a lovely woman and I would love to see her, but my feelings do need to be put to the side and instead I am focusing on helping my partner through this whenever he needs me – it’s for the best.
I just hope that this does not last – that this hatred and blame subsides and that one day soon we can all get along and forget the horribleness, I know that I would be willing to forgive and forget anyway.
Regarding the suggestion you made about having my partner read what I have written here to you – I think this is an excellent idea, I am definitely going to tell him about this forum and how a lovely lady named Paula made me feel like I wasn’t alone (thank you again)
I sound like my Mum, but bless your little cotton socks. It's all just so messy......
When stroke happens - unless you have a very orderly life, which most of us don't - there have to be some really fast adjustments, very quick decisions and they're not easy. I mentioned earlier that my friend made me think about not 'continuing' with my fiance when he had his stroke - she knew life was going to be tough - and to be honest, if he'd not got round to proposing (less than three months beforehand) and making some kind of commitment I don't know if I'd have been able to drop everything as I did. I rented out my house so I didn't need an income and gave up my job to be with him 24/7 - but I was in a position to do so. Not everybody is, if your partner had flown out on day one, put his job and future prospects in jeopardy and moved back in 'at home' what would it have achieved? There is a saying behind the phrase 'too many cooks spoil the broth' - apart from anything else if the whole family were abroad, who would have been here to sort things out.
I agree with you that it's unfair for anyone to think that your partner has it easy with his unchanged life. He's trying to deal with all the emotion and added stresses of family fallouts while functioning at work. I had the first two weeks off as it was an hours drive to the first hospital, then worked mornings for the rest of the time until leaving work when he came home, it was definitely easier having mornings free to sort stuff out, have a bit of a rest and get the housework done (in two houses!) than setting off to work at 7.30am, getting home at 9.30pm and then trying to do everything else that needed done.
Having said that, he is part of the family 'team' and can make sure everyone's aware that he can take his place in helping his Mum, but realistically, while she's in hospital there's little that can be done except keeping her house ticking over - which I'm sure is being done if people are living there- and entertaining her during visiting, which he might do better if he has a bit of a life outside of the hospital too. When she comes home it might be slightly different...... Maybe he could talk to work about switching to a four day week, so he could relieve Mum's primary carers for a day or two each week without needing to give up his whole life himself. My husband finds it very hard that I have, effectively, given up, through choice the life that he's had taken away from him - I think it would have broken his heart if one of his kids had done so, I'm not sure he would have allowed it. Parents like to hear about their kids living life to the full - that's why we devoted ourselves to them for so many years.
I think this is the key, I have chosen to be his wife, I can leave at any time and so he knows that I am a willing companion in this life we were not expecting. To have your child give up everything for you, potentially for the rest of your natural days, is not what you want for your children - you want them to live life to the full, have and do everything you did and more! Obviously, there are times when sons and daughters need to do much more for their parents, if they are alone or very elderly. But in your case it doesn't sound like anyone's particularly old and your partners Dad is there for his Mum - they might not need or actually want anyone else around 24/7 when she comes home. Stroke can be very undignified - we slept in the dining room for the first couple of months so I'd be wheeling him through the kitchen to the loo at all hours of the day and night, often in the buff so I don't think he'd have really wanted anyone else around!
You might be able to tell that I'm thinking this through as I go, some stuff I write on here has never occurred to me before!
But maybe, your partners brother needs to get on with his life again - it's been a while now and what is he achieving? Maybe he wouldn't want to trott off around the world again so that he can see his Mum in the flesh, but Skype is a wonderful thing! But he could think about having a year back at work to keep his hand in, so to speak and go back off en voyage when things are more settled.
It took me a very long time to recognise the Stroke Association's slogan 'Life After Stroke' actually had a meaning behind it. But it's not just for stroke survivors, it's for their families too. Children of stroke survivors will need to work again, they will want to live independently and have families of their own - the longer they put everything on hold the harder it will be to for everyone when it gets moving again.
I'm sounding a little harsh and opinionated I think, but I am trying to think as both a carer and a parent. I try to be objective when I reply to posts, because just agreeing with everything you say doesn't always help, sometimes it pays to be constructive. But I think in your case I'm with you 100%, it sounds like your relatives are being unreasonable - maybe they'd like to reply! - and all you can do is what you're doing - sit back and wait for them to come round.
You can support your partner in his visits to his Mum by giving him something to tell her, depending on what her thing is, take him somewhere to take photos of the flowers so she can at least see them this year, if not in the flesh. You can still send notes or cards, little kindnesses that say 'I saw this and thought of you'. We always tell the kids that even if someone else is mean to them, if they behave in a proper way in the face of this adversity then, whatever the outcome they can hold their heads up high. I think we need to remember this as adults too. So, a text to his Dad that says 'I'm in town, does Mum need anything?' isn't intrusive or argumentative, just thoughtful. You might not get a response but at least when they decide it's time to build bridges it won't seem so scary as if you were completely silent.
Lastly, this forum, I know! It's very strange that you don't get a little message when someone's replied to you, it can be really easy to miss replies - but I think they're trying to build something better!
I'm not sure there's anything of much help I can say in your situation but if you want to come on for a vent, or to check if you're being unreasonable then I'll always reply, eventually! I find it really useful to give the honest situation to someone impartial just to check I'm not being one-sided, I think my husband's perfect and everyone else is wrong so sometimes it's useful to have the other side thought about!
You take care and keep your chin up. You are definitely not alone
hi everyone new to this my daughters put me on i am a young looking 61 year i had a this demonic thing sneaked up on me in my sleep i was in hospital 3 months during which time i was told i was lucky to make the first week as my brain is so badly bruised, at the moment i am writing an article in a magazine about awareness of strokes in sleep you dont think it can happen to you, it is always someone else. is anyone else suffering from left side neglect which can be quite funny at sometimes ! yes i leave the phone off after a call but talk to the hand because the head aint listening my bladder does not retain its youthfulness and requires the assistance of a certain tena lady during a good laugh! i have been home now a month and find myself very emotional i feel as i have lost ann, when i see my neighbours for the first time i cry for what i was, and i am now out of hospital i cried i could not explain it as it is totally out of character for me even if i got a get well card off a neighbour or my visitors were leaving i hated the way i was ! i was told several times its a grieving process losing something as i was and wondering if i will ever get it back i now walk, eat but my left arm plays me up is any one else like me???