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Help, massive stroke

hi all
My dad had a massive right side stroke in January, we nearly lost him a few times and we was told if he survived he will need 24 hr care. To cut a long story short my dad did survive , he has now been in rehab for nearly 7 weeks but there is no improvement and we have been told dad will not make any improvement, he has huge problems cognitively, mobility;he won't walk or move his left side again, doubly incontinent, swallow;he probably won't eat again and has a peg feed fitted which is also for his medication, vision problems, left side neglect, he has already had a epileptic seizure and aspiration pneumonia, he is at risk of so many things, some life threatening. Physio have told us dad is at risk of falling if they continue rehabilitating him and his attention is so poor he can't concentrate on any physio so they have stopped his physio as they don't want to knock his confidence. Each time we Visit him he is very agitated and we can't seem to settle him, he is very demanding and suffers from exhaustion. My dad was a quiet But sociable man who loved a joke so to see him how he is now can be very hard. We are hoping once he has his own room in a nursing home and he is settled we can get him some quality of life. Dad is 77 and is very vulnerable, we aren't sure which way his health will go but we are looking to the future with hope. His stroke is obviously the worse on his ward as we can see the other patients making progress. Is there anyone here in the same situation or have the same experiences, wherever I look I read of people making progress and being able to continue to live their lives even though their strokes have caused disabilities but sadly dads life will never go that way.. I'm looking for hope and other similar stories to give us that hope..
Thank you

Hi sharon, I am in the same

Hi sharon, I am in the same position as you. My mother had a massive stroke October 2014 which has left her needing 24 hour care. She cannot walk or talk. She has movement in her left side but little in her left. She has had constant chest infections and has started having seizures, one leaving her unconscious for 15 minutes. She is 87 years old. She can get very frustrated, we are told this is normal for stroke victims, with the added fact that we cannot understand what she is trying to say. While she seemed to make a little progess, since her last seizure she hasnt been the same, she mostly sleeps now. While I cannot give you a story that ends the way we would like, I can tell you, you are not alone.

Please see below a message from our Head of Marketing & Digital

Hello everyone.

I'm Caroline, the Head of Marketing and Digital at the Stroke Association.

Apologies for interrupting any discussions you may be having, but I have some exciting news I want to share with you all.

Some of you may recall a request Matthew, our Website & Digital Manager, placed here in TalkStroke last year, asking for some input from you to help shape our new website, including a new and improved TalkStroke forum.

Well, we’re delighted to say that this new site will be launching very soon - planned for Wednesday 8 April - and it will be a vastly improved Stroke Association site built on the back of yours and other users’ thoughts and feedback. Thank you!

As is the case with other parts of the site, the TalkStroke forum has been redesigned too and will start afresh.

What this means is that TalkStroke will cease to exist in its current format and the new version will have a lot more functionality that you’ve been asking for.

Not only will TalkStroke be better designed and more user-friendly, you will now also be able to:
~ create your own personal profile with an individual biography and photo
~ send private messages to other forum users
~ create individual topics within wider categories, making it clearer and easier to follow a conversation
~ ‘like’ your favourite posts
~ report inappropriate posts.

To access the new TalkStroke from 8 April, you will be required to re-register your details on the new forum. Please take a few minutes to sign up to the new forum so that you can continue to be a member and make the most of all the new features (you’ll be able to create your new account by following the simple instructions we will post on the new TalkStroke homepage when the site launches).

Once you have created your new account you will be able to add your personal bio and photo, which other users will be able to see, as well as select your preferences with regards enabling private messaging or receiving email notifications whenever someone has replied to one of your posts.

Having a new forum does mean that past conversations will be lost in transition. If there are any particular conversations that you don’t want to lose, please let us know.

In addition, we’d love to know what topic categories do you think we should have in the new forum? I can see that most posts get placed under Rehabilitation, Carers and About stroke.

Are these meaningful categories? What others would you like to have? Are there any topics that you would like us to create so that they are waiting for you from the first day?

We’re really keen to get your feedback to help continue the development of TalkStroke before we launch and look forward to your response. You can contact us via TalkStroke or by email on

Many thanks for your time and we look forward to talking with you.

Best wishes,


Just reinforcing that stroke effects entire families. My son's doing his GSCE's this year and for both his English persuasive writing coursework and his English speaking exam he's focussed on funding for stroke related research. I'm really proud of him but also slightly saddened that he's so aware of this issue at such a young age, when his peers might be choosing subjects such as football or one direction.
Fingers crossed the examiners like his choice of subjects!

Feeling Iscolated

I just Registered, had a mini TIA. Hope there is someone who is in the same position as me so I got someone to Empythise with.
I had slight loss of vision in my Right eye for less than a minute, went to see Doctor next day, day after that went to Hospital, MRI, Blood tests, ECG, got 2 blood clots on my Brain, given tablets to take immediately and given prescription for Clopedogrel, Asprin and Viastatin, all spelt wrong I know, and sent on my way.
No support, told I will have a Heart Monitor and Heart Scan.
After two weeks nothing, no letter. I phoned hospital, 2 days after I get letter of symptoms. Only just got letter for scan, over a months time, WHAT? yes.
Phoned up, now getting Heart monitor This Friday but hoping for a cancellation to get Scan done.
Saw a Wonderful Lady for Support today, given lots of info.
I do feel very alone. I have read about an American Actor who had this at age 27. I am 49, all a bit of a shock to me. I been told i'm one of the lucky ones, I don't feel any different than I did before this happened apart from Alone and very Down. My first post on here, many thanks for reading this.


hi there just like to say I had a similar experience having had a stroke on the 5th of jan I went to the gp 2 days later was sent from there to hospital and 7 hours after waiting in a and e was told my doctor was right and I would need further tests, they dident even give me a leaflet to explain what had happened to me , a couple of days later I was asked to go to hospital where I was given medication like yours and sent home again no explination or list of dos and donts and told I would receive appointments for scans ect ,my eyes had been mildly effected my speech and my left side had weekness and pain in my arm and leg, after 3 weeks I felt so alone I got one of my children to take me back to the doctor and told him I wasent able to sleep even though I have extreme fatigue and I wanted to speak to the stroke team 10 days later they cme to see me and thank god for that the feeling that days an weeks have just passed with nnothng to show for it is bad enough but not having someone to talk to that may be in the same position is horrible I am 43 and was very active before this cant drive at the moment its only been 8 weeks but feel indifferent to everything no highs but no lows either but I know y personality has changed but on the up have just been put on amotryptaleen and am after weeks going to sleep befor 4am hopefully your doctor will do something like that for you ut if they don't ask about it as being depressed or feeling low is very commom apparently sorry for bad gramer my word skills and concentration are up the wall at this time hope your stroke team help you get there all the best max

Medication side effects

Hi I am new to this so please be gentle with me.
I am 65yrs old.
I had 14 TIA's on August the 3rd 2014 spent the day in hospital had a CT scan and was discharged with an Asprin 8pm and told to go to the stroke clinic the next morning. The doc said it was nothing to do with a stroke but a problem with my spine( I have had a lot of problems in the past but not for 28 yrs) he discharged me. In the early hours of the 7th August I had a much bigger stroke affecting all the left side of my body. I am recovering quite well but I keep going really dizzy ( feel as if I have drunk a bottle of wine) my eyesight goes blured my balance goes off and my left arm goes heavy and partly numb from the elbow down also my throat feels constricted. I am not coping very well with this. I wondered if it is one of my tablets I am on Clopidogrel 75mg, Atrovanstain, and was on Amlodipine but my doc changed them to Ramapril 2.5mg and things did improve a little but my pulse was also going very fast all the time so doc put me on Bisoprplol 2.50 he said I would have to watch my BP as it could go down, now he has stopped the Ramapril and BP is fine. So sorry for going all round the houses but could my problems be the Copidogrel, has anyone else got this problem please.
Many thanks Shez

Walking has slowed

Hello everyone! It is nearly 2 years since hubby had his stroke and was diagnosed with established moderate small vessel disease as a result of MRI. The consultant just said "and you have been diagnosed with small vessel disease" and left it at that. Of course I surfed the net and found more information. Hubby has also been diagnosed with numerous past silent strokes, some lacunar, 1 gyrus. He has made a pretty good recovery from what was a major stroke and one that paralysed him totally. We walk every day for at least an hour but latterly I have noticed this has slowed and sometimes he says his legs feel heavy and just do not want to go. I have also noticed climbing the stairs at night is difficult for him. I just wondered if this slowness was due to the cold weather or progression of small vessel disease? Hubby never mentions the SVD and I do not want to make him anxious. However, I do feel sometimes alone with my worries and I just wondered if others had had similar experiences on here, which might help me to understand. Thank you.


My mum had a quadruple bypass about 10 years ago, followed a year later by a stroke. Which left my mum with left sided weakness, today she can not walk unaided and her arm is weak. She also as a catheter full time.
She has glaucoma and because of this is unable to have her cataracts removed, however last week she had a TIA and since then she is virtually blind, does any one know if sight loss can come with a Tia.


My Mum was put on the anti-pyschotic Respiridone after her stroke in August and is still on it. She already had some dementia and then suffered a UTI which caused a great deal of confusion and hallucinations. Since the stroke she seems to be on an emotional roller-coaster and I can't tell if the drug is doing any good. Does anyone else have experience of this drug and does anyone know how long it is safe to stay on it?

Hyperbaric Oxygen Therapy and Stroke

I am a former computer scientist and now own an FM radio station network in the US. My friend who owns an AM radio station suffered a stroke just three weeks ago.

I'm trying to find him a hyperbaric oxygen treatment center as I have read some favorable research regarding outcomes and stroke.

Has anyone used hyperbaric oxygen therapy and if so please tell me more about your personal results.

Here is one study I read about. Your help is appreciated. Joshzz >>

Oxygen Therapy Spurs Recovery in Some Stroke Patients
Study found certain survivors gained lost skills months, years after their attack

HealthDay Jan. 23, 2013 | 7:00 a.m. EST + More

By Amanda Gardner
HealthDay Reporter

TUESDAY, Jan. 22 (HealthDay News) -- Researchers in Israel report that they harnessed the same type of therapy that helps scuba divers recover from the bends to spur recovery in stroke survivors.

The treatment, known as hyperbaric oxygen therapy, involves closing the patient in a room with higher-than-normal air pressure, then delivering oxygen to rejuvenate damaged brain cells, called neurons. Oxygen levels in the body are increased tenfold with this therapy, the researchers said.

The 59 patients in the study showed differing levels of recovery, but some improvements were dramatic.

One 61-year-old woman who could not bathe, dress or climb stairs without help after suffering a stroke a year earlier was able to not only bathe and dress on her own, but also was able to shop and cook independently, the researchers said.

Another participant, this one a 62-year-old woman who had had a stroke 14 months earlier, regained lost language and reading skills and was able to walk, climb stairs and eat on her own. Before the stroke, she needed help with all of these activities.

Stroke from either a clot or a bleed in the brain can result in problems with mobility, loss of reading and speaking ability, and the inability to complete some of the most basic tasks of daily life, such as bathing, dressing and walking.

It is the leading cause of disability among adults in the United States.

Physical, speech and occupational therapy can help with recovery in the early weeks and months after a stroke, but many patients still don't fully recover their abilities.

Hyperbaric oxygen therapy is currently approved in the United States for decompression sickness (the bends), wound healing, carbon monoxide poisoning, skin grafts and thermal burns, among other applications, said the study's author, Dr. Shai Efrati, a faculty member at Tel Aviv's Sackler School of Medicine.

The findings are published in the January issue of the journal PLoS ONE.

Although the therapy has been studied in some patients soon after they experienced a stroke, this is the first study to look at the therapy in patients in the "late-chronic phase" after the stroke, the researchers said.

All participants in this study had suffered an ischemic or hemorrhagic stroke between six and 36 months earlier, and none had shown improvements in their condition for at least a month.

Half of the group received 90-minute sessions of oxygen therapy five days a week for two months while the other half received no treatment for two months and then started the oxygen therapy.

Brain imaging done before and after oxygen therapy showed improvements in brain activity after the therapy was completed, and some patients showed impressive functional improvements.

There were a few patients for whom improvements were marginal, said study co-author Eschel Ben-Jacob, a physicist with Tel Aviv University's School of Physics and Astronomy and the Sagol School of Neuroscience.

Side effects were fairly minimal: Six participants experienced ear troubles due to pressurization and two patients with a history of seizures had mild convulsions.

Two years after the treatment ended, the improvements held.

"The rationale is that once the damaged brain area has been reactivated, there is no going backward unless there is another insult," said Efrati, who also is head of the Hyperbaric Institute at Assaf-Harofeh Medical Center in Israel.

Ben-Jacob said high levels of oxygen allow neurons that have been damaged but are not destroyed to become active again, reconnecting with other neurons and firing the signals needed to maintain healthy brain function.

The researchers believe oxygen therapy also may be able to help people with other neurological conditions, such as Alzheimer's, and are currently studying it in patients with traumatic brain injury.

The study did have one significant limitation in that there was no group that did not receive oxygen therapy for the sake of comparison, Ben-Jacob pointed out.

But another expert noted that the trial followed what is considered the gold standard for assessing how effective a treatment is during a clinical trial. The stroke victims who got the oxygen therapy first were chosen randomly, the treatment regimens were compared going forward in time and other factors that might have influenced the outcome were controlled for, explained Dr. J. Bradley White. He is an assistant professor of neuroscience at Texas A&M Health Science Center College of Medicine and a neurosurgeon with the Texas Brain and Spine Institute in Bryan.

Parent and physiological impact of stroke

Hi, I recently joined seeking some advice.

After an argument i hadn't spoken to my farther for 5/6 years. I've recently got back in contact with my him who is only middle aged but had been a long term heavy alcoholic/smoker. Previously i knew he had suffered from a mini-stroke and after a long period of recovery he seemed fine again. Since i have got back in contact with him again he has described having another more major stroke affecting his speech and movement. I have only been in contact by text but already i have noticed he is extremely delusional, confused etc, I believe it more than likely he now has dimentia. My questions are is there any chance there will be a recovery from this, if not will it progressively get worse and at what rate? Is their anyone I can talk to about this? Should i meet my farther again in person. I know this sounds awful but I'm not sure how well i could handle seeing him in his apparent state (mentally).

Any information or similar experiences would be a great help.


Getting in touch

Can't comment on whether his state will improve as everyone seems different. We have a fractured family with a history of people not speaking. I am helping to look after my Mum after a very difficult relationship over the years and she now is incapacitated and has dementia. Our conversations are limited to her asking me to take her to the toilet mostly but sometimes I do her hair or massage her feet. She's too agitated to be appreciative but I feel I'm maintaining the relationship and simply helping out a fellow human being. In the meantime my brother keeps his distance, trying to tell me what to do, but not actually getting involved. At the end of the day I will feel I did my best when she dies and he will have to live with the fact that the relationship was never resolved. Maybe make contact but do not have too high expectations of what can be achieved.

Parent and physiological impact of stroke

Perhaps call the Stroke Association helpline as they are lovely and may be able to help. Age Uk are also very good and you can look them up online, the website is good too.
I think you should go and see your Dad, though I don't know your situation that well. Life's too short. My brother says he finds seeing my Mum upsetting. Who doesn't? it's about doing the right thing. Good luck.

basilar artery stroke

my 37yr old sister had a basilar artery stroke on the 16th of sept 2014, she can breathe on her own but can not move or talk, she can move her eyes up and down for yes or no.
she is crying a lot and is in pain. I can't imagine how hard it must be for her not being able to feel or move or hug her children, I'm hoping one day she will improve enough to swallow and maybe eat or talk one day even though the chances are slim, not maybe survive this type of stroke and if they do their life span is shorter.
I was wondering if she gets home from hospital next yr if any one could point me in the right direction to a site that could customise a hospital bed, I'm hoping somewhere in the world could make me a bed that is half hospital and the other half for her partner so she can still feel like they are a couple, i think sleeping in the same bed would help her self esteem, they are so strong and even in her bad situation she manages to smile and chuckle i want to give them a gift as they both deserve the best for being such amazing people <3 i can't find any sites online myself unfortunately, so if you could point me in the right direction that would be great :)


Your best starting point would be to find out who your sister local OT is, the hospital or her GPs souls be able to point you in the right direction. The OT may be able to show you were to go.

Hope you get the information you need.


Ihad a fairly major ischemic stroke in August last year and am a female, aged 65.5 at the time. It left me in the I.C.U. in a Spanish hospital for a few days but I can't really comment any further because I don't remember most of it. My husband had no idea what to expect, if I survived the stroke.

Well, I did survive but am totally dependent because I cannot open my eyelids, have double vision if both are held open at the same time and cannot balance or walk unaided,

However, the main reason for posting this is to find out if having a stroke has left anybody else in this mess and if they feel weak and tired most of the time???

I always liked my bed but I love it now and really struggle to get up,

My mother suffered a stroke after doctor took her off BP meds.

My mother has high blood pressure, so she has been on high blood pressure medication for quite some time. 2 weeks ago she had a check up and the doctor gave her a pass. The doctor also told her to stop taking her blood pressure medicaton, and so she stopped taking it.

3 days ago my mother had a stroke, it was a blood cloot, and they found her blood pressure to be 220/120.

I know that high blood pressure increases the chance of blood clotting, considering she only came off the medication 2 weeks ago, it seems like this was what caused the stroke.

Can anyone give advise? Should the doctor have never taken my mother of high blood pressure meds, did this cause the stroke?

Feeling lost

Might be worth talking to your dr to get more info that may help you and your husband to understand stroke damage. Dr may then refer you to a neuropsychologist or therapist who can help deal with these troubling effects of stroke. Stroke Association worker could also provide support. The mere fact that you have posted on the forum shows you do care about your relationship so be encouraged. Healing with stroke takes time and as a young stroke survivor you are likely to have a better recovery. It is a test of love and patient endurance for you both. Be kind to yourself - you have survived a massive hit in your life. I am a wife of a stroke survivor. After 5yrs we are still seeing improvements. All the best.


Hello I have recently suffered a TIA on Wednesday this week. I'm 37 years old , quite fit, not over weight and have a healthy diet yet still suffered a mini stroke. Even though its not quite a week since the TIA is it ok to start back exercising , cycling , running may be swimming?


I am new to this, thought i'd reply. I am not 4 weeks into my Mini Stroke.
I cant drive for 4 weeks. I cycle into town and back once a week, it is only 3 miles one way. Consultant just said avoid the roads, which I try to but can't all the time.
Nobody has told me to avoid any running or anything. A week later I ran at a cross country event about 10k and I really pushed myself, more than usual, normally I feel sick when I try too hard, don't know if its the blood thinnning tablets or that I Hydrated alot before I ran but I felt good, that was 2 weeks ago, I have no ill effects.
If your really concerned I guess go see your Doctor, I hope this helps.
All I had was partial loss of vision in my Right eye, nothing since then.

Feeling Lost...

Hi I had a stroke a little over a year ago at 1yr ago in my right frontal lobe at the age of 39. If you look at me and talk to me you would never know...I'm very blessed. However if you live with me it's a different story. My husband seems to be suffering the most....I seem to have NO compassion or emotional and sexual connection to him since the stroke, yet with my kids nothing has changed. I want to fix this but don't know how!! I also noticed when my best friend passed not long after the stroke I didn't seem very emotional and everyone was shocked. It's like I'm just now connecting the dots and wondering. it possible there was permanent damage done to that part of my brain? Is that in the right frontal lobe? Anyone else experience anything else similar? I'm too young to lose my husband over this and want to fix it...but just don't feel anything! Please help...any advice?


I had a stroke last year, and I'm fairly young too, but not in the frontal lobes. I do however have a friend who has frontotemporal dementia, which attacks the frontal lobes. She is quite young, and since her diagnosis, it has answered so many questions around her behaviour, and strikes a chord with your message. I wouldn't know where to start with advice, apart from trying to get the ear of your local ABI team. I get so much support from them, and not sure what I would do without them, and I'm sure they would be able to give you some pointers.


My mum is in hospital with a stroke, she is weak but able to communicate and on a good day has awareness and movement. She can't swallow yet and the staff are flogging PEG system feeding at us even though she may improve over time and has the sort of determination which will assist recovery. I feel they have put her on a tramline towards a nursing home and an over-medicalised future and I am very troubled and angry about this. Does anyone have experience of getting a relative into eating gradually via the normal route, and what information do I need to avoid gastric operations on her?


This may not be what you want you hear but I would let you mum get a PEG for a number of reason.

1. This is easy removed if you mum was to start eating (it just pulls out -not as bad as it sound I had one removed after 7 months)
2. NG tubes are not that conformable and keep coming out (mine one did anyway)
3. Do not try and get your mum to eat as if this is not done at the right time it can lean to more problems
4. If her swallow returns it will be very weak and she may only be able to manage 6 tea spoons at any one time (I started only able to swallow 6 small teaspoon by over time this increase the stronger her swallow becomes)
5. Even if your mum starts to eat she may not be able to eat 'normal' food or 'normal' drinks. Also remember they need to be able to give her, her tablets (with may not be able to be swallowed even if she's eatting)
6. Having a PEG tube doesn't mean she will go into a nursing home

Saying all that there is hope and keep fighting. Every stroke different, everybody recovery different. Recovery takes time it was 8 months before I could eat enough and drink enough.


Mum can't speak (though has made a few noises of late so fingers crossed) and was on a nasal feed for about 6 weeks prior to a PEG being fitted. A few days ago, we asked about speech therapy & someone wil now revisit Mum & look at speech/swallow. PEGs can be removed & I hope this will happen to Mum. Keep talking to the staff and asking questions.


hi, its difficult to know how or what exactly has happened as its brain damage,where a mm damage either way can have a different effect. some speech comes back. mine has not, i can make horrid noise and eventually get understood,USUALLY. i have a palate plate like large dentures without teeth to help counter the effects of my dropped palette. i does help but takes some getting used to , after all its a large foreign body in your mouth but now i forget its there.
my tongue is still weak but that wouldn't move at first and that has recovered a lot as i eat every day my tongue gets physio from the movement eating and that's without thinking.

shame about the peg that usually means nil by mouth. i have had 2 stokes and a peg both times but they have come out. quite missed the first one as thy put my medicine in through. it was nice to be eating again but sad to loose my medicine intake tube.

it really is impossible to predict the future accurately as there are so many variables but you always recover something, normally a lot but it means that however you are you have been worse and coped with it.

and its always worse for the person watching, when it happens to you you always cope somehow.

i now use an ipad in noisy situations to write what i want to say, you can get a speaking app but trying to type too quickly with my clumsy hand i hit too many wrong letters and it then speaks worse than i do. if i make a mistake typing people usually work out what i mean, its a bit like working out what a Geordie said.
in hospital a laptop is ok and do they have email on the entertainment unit over the bed, could you use that. my stroke was 15 years ago when i had to use the old letter board and spell everything out on that,

it does take time but some wonderful amazing recovery's are made

anyway good luck and best wishes



My husband had a stroke nine months ago and is paralysed on his right side. He also has aphasia. The speech therapist is discontinuing his therapy (paid for privately) in a month's time as she feels there is nothing more that can be done. My husband can talk but cannot find the words he wants to say, although we have been doing weekly therapy since he was taken ill. My concern is that it is still early days and that she is giving up too soon. Has anyone else got similar experience? Thanks.


if you or family are computer literate there are programs that help. i learnt computing when rehap gave me a computer mouse to use and a simple game to play to exercise my arm; exercise just for therapy is hard work and boring but if there is something else to concentrate on time just flys and lots of therapy is achieved.

for me after my second stroke it was trying to dress crabs when pushing them into my bad hand and trying to turn then, for someone else it might be knitting crochet, painting drawing sometimes guiding the bad limb with the good one



I wonder if nine months is a magic number for speech therapy - my husband was also discharged from the NHS SALT at about the same time for the same reason. At that point my hubby had yes/no sorted out, could do our names, was pretty good and copying one and two syllable words and had a good go at naming everyday objects, But none of it was very functional!
That's over two years ago now, since then the progress he has made is massive. He now talks in short sentences, makes jokes with words instead of just facial expressions, orders his own dinner in restaurants and we have conversations which are unnecessary - it's not all about food/pain/needs anymore, we can discuss The Apprentice!
How have we got here? How does anyone really know? He has never given up trying and I've never given up listening to him, even when I'm tired, the dinner is burning, the red lights are going on on Strictly - he gets my attention over anything! There are some things which I think have helped though......
Firstly Predictable app on iPad, we got it through the NHS SALT but it is apparently available for anyone to have. It takes my husband a long time to write sentences on this app but the predicting function helps, playing it back makes him hear where the sentence is wrong and being able to store the sentences means that when we're socialising he can have prepared and so can ask friends questions without pressure.
Secondly, check out - it's a website made by The Tavistock Trust for Aphasia, a British charity set up by the Duchess of Bedfordshire as her late husband lived with aphasia for many years, the quietly fund lots of research into aphasia. On this website they've got lots of different softwares and who they might be useful for - it also tells you which have a free trial! It might be a good idea to discuss these with your seech therapist while you still have her as she should know the right level to start at. But if it's a free trial - you might as well have a go at all of them!
Finally - the big one for me - Research. When we were at the stage you're at now I was in a panic, how were we going to live with this level of communication?????? At the same time, on this forum, City University London were asking for research participants, we replied, took part in a project where my husband had eight hours of speech therapy delivered over Facetime (video conferencing type thing) and we're now on about project number 8, some are therapy, some are for the researchers understanding of aphasia but they're all interesting and have given some purpose to our forced retirement. Every time he takes part in a therapy project I notice a burst in his improvement - maybe it's the therapy, maybe it's practise or maybe it's just an adrenalin burst that's showing in his talking - I don't care, I love it! Depending on where you live it might not be very easy to find research projects but we believe it's worth travelling for, we live in Lincolnshire and travel regularly to London for research and have even done a project at Oxford because it was sooooo interesting. If you're near enough to travel to London let me know and I'll find a link to City (we're going today actually to work on story telling), if not try the UCAS website to find a local uni with speech therapy department and see if they have research projects. It's so worthwhile in so many ways.
So, while nobody can promise progress, it is possible - our life is so different now from two years ago, don't give up!
Take care


My husband had a stroke on 29th November. Right side paralysed and no speech. He can eat purees and is trying to speak but can't form words. Your comments gave me much encouragement and will help me find my way to getting the best possible help for him although I realise it may not work but we can only try. I live near London and Oxford and will do as you suggest to find a research project which might take him on. He is in a good stroke unit and has had therapy from day 3. Our main aim as a family at the moment is to keep up his spirits because he understands his condition and is really low about his inability to recover. But all the advice I have been given so far is that it is really slow to start with and patience is indeed a virtue in these circumstance. Thank you for your post, gave me hope.


Paula, thanks so much for your input. I live in South Africa so opportunities to partake in research are nil. We have to travel 80km for the speech therapist once a week, which is probably not enough, but all I can manage. I will look into the websites you recommend. Had tried the Tavistock site but hadn't found what I needed. Will persevere.

Ken's aphasia is Wernicke's. He can't find the words but his speech is fine. I don't want him to give up but he's very despondent, despite being on ante-depressants. This was a man who was climbing on the roof fixing the chimney a week before the stroke.

Hope your husband continues to progress. Read a book recently by an American woman who had aphasia and she continued to progress for eight years! Keep going. Kind regards. Gillian


Mmmm, South Africa is quite a long way from London! I'm thinking 80km is about 50 miles - that's such a long way to go for therapy, some people in the UK only travel that far for holidays!
If I hear of any research that is purely online I will let you know!
Best of luck to you both

Not really sure where to put this...

I actually had a pontine stroke about 7 years ago... I'm not looking for advice as so much as just people to talk to; all of my friends have gone AWOL (military term meaning you left and no one knows where you went)
BTW my short-term memory was affected so I might post the same thing a couple of times.
Also I live in the United States so my vernacular may be a little different from yours.

Welcome. Feel free to join in

Welcome. Feel free to join in when you like. (or you can lurk as I often do).

New and need some advise


My dad had a stroke three weeks ago, he has lost the movement in his right side and his speech has suffered.
He has been doing so well all the nurse doctors and the team of pysios have told us how well he is coming on, the only heartbreaking thing is dad can't see this himself.

We are all visiting everyday as he is still
In hospital and take him off the ward every day for a break. I understand he is going to be feeling low after what he has gone through and the frustration that he can't do some things now without support.

Just wondered has anyone experienced this with a loved one and what you did to help pick them up.
The last thing is wanting his to go into a depression state


That happened to me, but I

That happened to me, but I seriously doubt what pulled me out of my funk (a pet duck) will pull him out of his ... A lot of being happy after a stroke is realizing that your life is different and adjusting accordingly. Yeah, you can't do such-and-such anymore and you just have to be OK with that.

Confidence issues

Im a 53 year old male,I had a minor stroke about 3 and a half years ago, although to look at me you wouldn't think there was anything wrong with me, it's mainly when I walk as in my movement at times is poor and I have at times falling over due to tripping up, I have a big problem with even a small curb or even if the path becomes uneven it's like a fear comes over me. I know since the stroke things have improved but my confidence has got worse I've been to the doctors about it but he just doesnt want to know. I don't get any help from the nhs I just don't know which way to turn I know with help I would get my life back. Any suggestions ?

Difficult question

Hi Mrs Boyle,
There are so many points of view on this one - as Janet said, keeping a diary is brilliant for many, many reasons.
Almost three years on and when people tell my husband how well he's done/is doing he hates it - he doesn't want to be able to name pictures on a card and work really hard getting his point across, he wants to be able to speak fast and fluently and with feeling and humour. Anything but a full recovery and my husband wouldn't accept he's done well.
I've given up telling him 'but look what you can do now' - I tell him 'I know, you're talking's rubbish, but it's less rubbish than it used to be'. That then makes him laugh. Everytime, bless him, maybe he's humouring me!
But that's kind of our relationship, we've always teased each other gently over various things that we know deep down we're good at.
I think you have to work out what's good for your Dad. Maybe the attitude 'well you're not going to get better sat there moaning, lets do this exercise'. Or, the dreaded Goal Setting. I see the theory behind how it works, but my hubby wanted to put walking and talking as his goals - I think they're supposed to be smaller, more achievable as stepping stones towards the final aim.
It's just occurred to me, look up Solution Focused Brief Therapy. My hubby did a research project to see if people with aphasia could benefit from this kind of therapy, it's almost a life coaching things I guess, about celebrating achievements and noticing change. Each week he had to tell the therapist 10 things which meant life was going in the right direction. This kind of worked in two ways as he was firstly noticing good things, so he could list them and secondly trying new things that he could then celebrate achieving. Maybe you could try listing Dad's achievements - for him or with him - so he ends up with an achievement log as well as a diary of more detail of how he got there.
Having said that my hubby is very similar to your Dad and doesn't like acknowledging his baby steps of progress, we've never struggled with depression - I think they don't necessarily go hand in hand. It's been really hard for me to learn to let my husband do what he can, not to just take over because it's easier - but by him taking half an hour to do a task that would take me half a minute then at least he has some satisfaction, some independence. For my husband it's really important that he's in control of his life. He's also remained firmly my husband (although he was my fiance to start with but you know what I mean), if I feel down I go to him for a cuddle, he still has to stroke my hair and rub my feet, it's still his job to go without quilt on a cold night. He knows I love him now as well as the version I fell in love with originally - it strikes me that being loved and needed is really important. Think about your Dad's 'jobs' - find some that he can still do some or all of, be creative! I think if you can surround your Dad with love and make him feel useful he's less likely to be depressed even if he is still frustrated with less than a full recovery.
I'm banging on again and I have school uniforms to iron so must dash, but try a bit of everything, see how it goes and with all of Dad's recovery be creative, shake it up and have as much fun as you can. Like Mary Poppins, turn it into a game!
Take care

Improvement tends to be a

Improvement tends to be a slow gradual process rather than great leaps forward. You could keep a diary detailing what he is able to do and any changes. Then in say 3 or 6 months you can point out to him exactly how things have changed.
Best wishes

my gran

Hi my gran who is 84 years old has had a stroke on saturday .
she has lost all movement on her left side of her body and her vision had deterioted as well.
my gran is still able to verbally communicate with us however she doesnt think she has had a stroke as she feels fine in her self except feeling very tired. is this common after a stroke?

after a consultation with the consultant today 22/10/2014) we have been told that she has developed pneomonia and is back nil by mouth. we have been asked if we have talked about to resus her if it came down to the worst.has anyone experiences simular story and if so has your family member come out of hospital.

im really worried that we are going to lose her, my gran is the world to me and i dont know how myself, my mum and brothers are going to cope if it turn out we are unable to take her home. none of us are sleeping very well either which is hard too.

if anyone could help it would be much appricated.


mental peculiarity after stroke

My husband, who is 80, had a stroke in Jan this year affecting his left side. He also has cognitive issues, some confusion, lack of concentration etc. In the last couple of months he has started to read books again and recently he spent several hours with his nose in a Dick Francis novel, which i was really pleased to see until he stopped reading and informed me that his name was Derek Franklin (the novel's main character) and was on the run from a criminal gang after the death of his brother. He did not know where he was, although he appeared to find me quite familiar, and said he was waiting for his chauffeur, Brad, to come & get him to take him to London. He stayed in character all that day and refused to go up to bed that night, in case Brad came for him - insisted I put his outdoor shoes and a jacket on him and then sat in his chair, waiting. Fortunately he is not very mobile or he would have carried out his intention to wait outside the front door. He eventually fell asleep and was OK in the morning - phew. He appeared to have no memory of the episode. Since then he has had several lesser but similar events after seeing a tv program or reading about some disaster, war etc. On one occasion he spent 2 days insisting I conserve drinking water because there was going to be a water shortage and on another he woke me in the morning to tell me he had come home in the middle of the night after going into the local polic station to warn them there was a gang of criminals after him and that, as a result I was in danger but that there was a ring of police around the village where we live. This one lasted until about midday. Has anyone had experience of anything similar?

I don't have anything like

I don't have anything like that, but my memory's shot. It's gotten a LOT better but it still isn't great.

Not exactly like that but

Not exactly like that but sometimes I'll recognize someone but for the life of me I can't remember their name.

hi im new I had a stroke in

im new I had a stroke in march im 48 yrs old my friend has been looking after me since then but it has all become too much for and she wants me to leave I have nowhere to go and no-one to talk to im too upset and don't know what to do next

I'm new


Sorry to hear your situation, in the first instance I would contact the stroke association support line on:

0303 3033 100

They may be able to offer some support

From a practical point of view it may be worth contacting your GP of local council and ask for adult social services

Remember you are not alone in this albeit at the moment it may feel like it


My husband is shouting me out

My name is pat my husband had a Tia in April he seam fine after wouldst but this 8 weeks he has got depression and has left are home and is been very cold not wanting to see me I have tried everything to help him but he knocking me back people keep telling me not anything I did but I am so hurt my has he shut me out can anyone tell

I was only 23!

Hi my name is Lorna and I am 24. I have just joined this stroke association because I would love to hear from other people who have suffered from a stroke and are around the same age as me. I had my stroke on the 21st May 2014 and I have felt I have been so lucky that it hasn't affected my mobility. Apparently it has affected the sensory part of my brain which I constantly use as I am a hairdresser. 2 months after having the stroke I went back to work. I was glad to go back as 2 months off just seemed like forever. I only went back part time hours though which were Tuesday to Saturday 9am - 2pm. After a couple of weeks been back I noticed that I was getting more tired and my eyes would twitch because of how tired I was. In the evening I would get home from work and just look forward to going to bed and having a good night's sleep ready for the next day. Only recently I have been getting even more tired and finding it really hard to deal with. Been a hairdresser is a very stressful job and I find it takes me a lot longer to do a task and after it I need a sit down as I feel drained. As of yesterday I've has to leave work again and go back on the sick as I feel like how I felt not long after I had the stroke which was getting things muddled up i.e the time and words, I would put the wrong number or word first. I feel exhausted all the time and all I want to do is rest.. not much of a life for a 24 year old! I would like to hear from someone who has been through what I have been through and could tell me if these feelings are normal and if likely to improve. I would also like advice as to what i can do about the way I feel. Im finding it very hard to deal with and family and friends can't help as they haven't been through what I have been through but are trying as much as they can. Thank you for reading and I will look forward to hearing from you :)

your stroke question

Hi. I am 43 and I knkw that will seem old to you but for a stroke it is very young. I am healthy but had the stroke after a visit to the chiropractor tore an artery in my neck. I had a cerebellar stroke.
I am 9 1/2 months post stroke but it took 8 months to get a diagnosis. I am so stressed, so anxious and so depressd because my old life and career is over. I tried to go back to work but the fatique and brain fog was too much.
everyone has different symptoms and different recoveries but please find a psychiatrist and a psychologist. They can tag team on the emotional problems. This happens to everyone with a stroke, be glad you are alive eventhough its frustrating. I was in exactly your spot, & a little bit of time and finally finding doctors and getting the right treatment I can tell you that things get better.
My psychiatrist is actually the one who recognized brain injury therapy was needed when 2 neurologists kept telling me i was fine. Dont compare yourself today to your "pre-stroke" self because its not realistic. Compare yourself to what it felt like in the hospital right after. Then you will see you are improving.
Find the mental support you need because anxiety feeds the cycle of not healing. when someone told me this I thought it meant that I was making it up and this was all in my head. please no that is not what this means a stroke does damage to your brain and anxiety and depression if part of what has to be treated along with your physical symptoms.

abi team


I second everything Louise said. I too had a cerebellar stroke after my Vertebral artery was damaged, I assume after hitting my head on scaffolding whilst walking underneath it at home. I too was 43. I lost about a third of my cerebellum.

The stroke has destroyed my social life and my career, and money is now tight, but the world seems somewhat a more beautiful place since the stroke, and I find ways to make life more rewarding than ever. I get tired quickly and the brain fog and brick wall my brain hits in the evening rules my life. I'm grumpy now in the evenings, which is a challenge for my wife to deal with, but luckily, she's a very determined person.

I have received such great advice from the Acquired Brain Injury team at the local hospital, not sure what I would have done without them. I suffered terribly from anxiety, and they helped me get past this. For months after the stroke, I couldn't get to sleep without someone looking over me whilst I got to sleep.