I had a stroke 10 weeks ago. I now have Aphasia which I had never heard of before. I have difficulty making sense when I talk and can't read or write (my partner is writing this for me). I would like to hear from other people that have aphasia and how they cope with it.
Hi - you will certainly get a lot of support and encouragement from others on this site who have similar experiences. 10 weeks is still early days, and you will make further improvements, give yourself time to heal, and some of your symptoms will ease.
Stay strong, get plenty of rest xxx
Thank you for your encouraging reply. We will certainly be making more use of this site.
Hello and welcome! Aphasia is something that I didn't have when I had my stroke but there may be others on here who can help you. I also had never heard of it before I came on this site. One thing that does happen immediately after stroke is your brain goes into overtime as it begins to 're-wire' itself finding other routes to help you recover which means that everything is 'all over the place' during the first 3 months. It does wear you out and you will suffer extreme fatigue. The tiredness is your brain telling you to rest so it is important to do this to help your recovery. Your emotions will run high but don't worry this is just the trauma from the brain sorting itself out so just let the tears flow and you will feel much better for it ;) This is all normal and part of the recovery process.
The site is fairly quiet at the moment due to the holidays so keep do come back after the New Year when more people are on line to help. Take care.
Welcome Alan and Kath. You have already received good advice and more will follow, especially relating to Aphasia. Again, this did not affect me, but what is affected depends on which side of the brain the stroke occurs in. I am nearly four years post stroke and still recovering. When the stroke hit, I had to be hoisted in and out of bed. I learnt to walk again and tie my shoelaces. Then it became a question of willpower and hard work and that still applies. My mantra is exercise, exercise and more exercise plus learning to laugh at yourself. As fears diminish, the focus falls on mobility and task achievement. I walk with a stick, better some days than others and cook and bake pretty well. I can even change a bed and duvet cover. Some tasks are accompanied by much swearing. Unfortunately inanimate objects have no hearing and it isn't their fault you drop them or they fly out of your hand, especially the weak one. I wish you both more progress from now on. I have just managed Christmas in Scotland.I still get fatigue every day but, hey,I am still above ground and living to fight another day. Happy New Year to you both.
Dear Allan and Kath
So sorry to learn of the stroke. But welcome to our forum.
Yes I have aphasia. No two strokes are the same. Many of us have common issues, so we can gain from other peoples experiences.
I had to work hard to get mobility back and even harder to overcome the cognitive issues. But I did very little about aphasia (and no I hadnt a clue what it was). The speech just eased bit by bit. Whilst I was improving I didnt think about extra action. After six months I could converse adequately. Within a year I could read a magazine. After three years I can just about read a book. I was dyslexic before stroke so I am used to the words moving around the page. A ruler helps with this. And this past year I wrote a 500 word article for a magazine. And they publshed the article and sent me a reward.
There are a few who have much more severe aphasia and if you are in that category you will need professional help. I am not that category and have sorted it out myself.
One thing that escaped my notice was that my brain had forgotten how to deal with an echo. So I went to church and every time I had to leave after 15 minutes, I was emotional and distressed. When I grasped that the church has a PA system and there is the slightest echo, then i began to cope better.
There is a good TV film about two aphasia sufferers. One was Mr Aygogo a well known professional footballer. I hope someone else on here can recall the name of the film.
I will write soon and mention what it was like for me in the first weeks.
Remeber my mantra:
Smile
Be positive
You are not alone
Best wishes
Colin
As promised here are a few words about what I suffered in the first weeks:
I was 90% paralysed. I could eat, see and use my right hand. but nothing else.
The staff would ask me things, very slowly. All i got was an attack by a lump of noise.
My brain then began to sort that noise in to words. Then it put the words in to some sembalnce of order. Then my brain worked out what these words meant. Then I had to think of a reply. Then I started to reply, reversing the incoming procedure. Each word was a struggle to get my voice box and my mouth to shape to those words.
So a question of "do you need pain killers" took minutes to reply. And it exhausted me.
I managed to tell my wife to just sit with me, read, knit, go for coffee, have lunch and so on. But not to try to converse. This worked well. My wife being silent, something I thought to be impossible through the previous 45 years of marriage.
My paralysis meant I couldnt turn my head and I couldnt nod nor shake my head. So my right hand did those tasks.
Visitors hours were torture. I longed it to end. One day I was vaguely aware that Tottenham were playing a big game. Visitors in the small ward were telling their Dad all about it and my initial reaction was great...I can learn the outcome...but in fact trying to listen in was agony and I longed more than ever for the visitors to leave.
Please be aware that I have recovered most of my speech. Writing is not perfect, but I can use my foutain pens and a pencil and a biro.
Communication is mixed up by the memory loss, the failure to lay down todays thoughts and by my substantial change of personality. Yet I use my PC and I can watch TV.
I do not grasp what is said to me in the same way as before stroke. I am an FCA and I had many staff under my control. The sublty needed to deal with staff, interviews etc has not returned but I am now retired so its less crucial.
I know that some aphasia is much worse than mine. I hope yours is no worse than mine and that you recover as fast as I did.
An aside: I got hallucinations and I am told that it is less common. I loved the hallucinations. The drab ward light up with colours and patterns. Imaginery people walked by and I was guessing who they were. Doctors body with a nurses head and so on.
Best wishes
Colin
Colin, that is a clear and excellent summary of your experiences. Well done...you have come a long way since then and will, no doubt, go further. All the best for 2020.
Dera John
Thank you for the compliment. I am very trying, just as many tell me.
You have been and remain such a rock of common sense and information.
I am so impressed with your travel from the Midlands up to Sterling.
Very best wishes for 2020 to you and to Chris.
Colin
Thank you Colin for sharing your experiences and the information about the film, I will try to find it.
Allan has been very encouraged by the replies that we have received and is grateful for them. I think it has spurred him on as he has been getting very disheartened, depressed and anxious. He knows that he is fortunate in that his mobility has not been affected although his sight has. His right right has been affected the most. We need to get our positivity back again and reading of other peoples experiences and attitudes to their recovery will help this.
Many Thanks
Kath
My husband had a stroke four years ago and has the same problems. It has improved over the years and when he is relaxed his speech is quite good also his vocabulary but when he tries to answer a question, I think he knows the answer but the message from his brain to his mouth gets muddled and you cannot understand his reply. Jeff uses his hands to communicate that way, sometimes I get it straight away but other times it takes a while and he becomes frustrated.
Paul
I suffered a stroke on 15th August 2019 two days after my 68th birthday which paralysed my left side face & voice. Fortunately I live in Leeds near the LGI, I was able to bang on the floor when I came around with my right arm to wake my wife.
the Yorkshire Ambulance Service stabilised me & I was on clot busting medication which seemed to be successful. I was discharged the next evening almost untouched by the god of strokes. I walked out of the hospital !.
Two days later I had a return of paralysis down my left side, resulting in re-admission to LGI for a further six days of treatment, tests & scans. I was discharged with a limp in my left leg & weakness on my left side & speech difficulties. A right para median pontine infarction was diagnosed which was a continuation of the first event.
I was walking but with many rest stops just to leave the hospital & to get to a taxi.
I had signed up for two studies on strokes, one of which required me to stand or move for up 3 mins every 30 mins whist awake. This was the most helpful advice & became my mantra.
Within two weeks I was back in the gym & pool, little by little I improved , swimming was so helpful because it forced me to breathe which aided my speech.
Within a month only people who know me were aware i had suffered a stroke, most people think I have fully recovered which of course is not correct. I have problems on my left side & tire, necessitating a lunchtime reboot of my brain most days.
The second study required interviews to assess cognitive behaviour two weeks after discharge, then a further assessment two months after discharge & a follow up six months on. So far it's all good news although sometimes a word takes a minute or two to formulate in my head, fortunately this appeals to my sense of humour.?
I am currently recuperating on the Costa Blanca over the winter, progress is slow but steady, I am not the man I was but still planning on getting there. So chin up perseverance is the name of the game.
Can’t see any dolphins
Six months on as a stroke survivor, still fighting the good fight & improving slowly although fatigue is still an ever present unwelcome guest. I walk to the gym here in calpe & have my workout then return to our winter home. A mid afternoon sleep or power nap keeps me alert, if not then fatigue washes over me like a glass of red wine impairing my senses & control of my limbs.
it's strange how my wife can see this happening before I become aware of it. I try to build in rest phase before this happens but I don't always manage as I am still trying to 'get beyond ' the fatigue.
As a lifelong workout nut i still struggle to accept that I can't get beyond this as would be the case with a physical impairment. Brain damage fatigue is a whole new ball game that creeps up on me like a thief in the night. Just as well I have not lost my sense of humour.
footnote:- occasionally we can see dolphins crossing the bay from our balcony, hence our joke 'can't see the dolphins
Paul
Oops I forgot to say.My memory is not what it was, sometimes my convictions are based on a falsehood so humble pie ensues & a laugh with my wife about the false memories.
I am back driving but on driving over to Spain through France I did get frustrated as I could not drive for as long as I intended. As a consequence my wife drove the bulk of our journey. An hour or so then I had to sleep in the car.
Three months on this has much improved but still there to contend with,. I keep reminding myself to allow for the return part of any journey, whether a walk or drive or even bus ride. My old friend fatigue again.
Words sometimes evade me so if it happens regularly I write them on a note by my bedside,although normaly it only takes a few minutes. As ever as I tire that worsens.
Lately I am finding that beetroot is helping me, especially the spicy variety available in supermarkets, the benefits have been proven with performance athletes in recuperating during training so I tend to snack on beetroot?♀️ Just be aware the colour does tend to go through you so don't think that you are bleeding. It may well be the beetroot.
Here in Spain I have not yet found beetroot smoothies but on my return to the UK in April that will be on my list
Hi, thanks for posting, it's good to hear of your progress, it sounds as though there will be more to come - you have a positive attitude. It's not really surprising that your wife can notice you becoming tired, before you've recognised it yourself. Exactly the same happens with my husband - there are some small physiological clues which he's quite unaware of, but I can spot them which gives me the chance to encourage him to rest, before it's too late!! So you probably have a "tell" which is the signal that your wife notices!! I wonder if the problem with stroke fatigue, is that it happens quite quickly - it's as though one moment you feel fine, and then almost the next moment you drop off the cliff? So those early markers, spotted by friends or family, are really useful warning signs to get some rest!!!
Good luck with those dolphins ? ? ?
All I can say is pace yourself. Or rather your husband. As bad as I was I am grateful for the recovery so far, I am blessed that my wife rose to the challenge despite the shock of the situation.
I hope your husband can continue to improve & find peace within himself. I seem to have managed to do that but I can't explain how that has happened & I am not a religious person. All the best.
Thanks for the reply. The brain is strange. Allan has started to say that he can see the word in his head and even knows how many letters it has but can’t say it. I can’t really imagine how that must feel.
Aphasia: As the discussion seems to have gone off point I thought I'd subtitle my post. As you're probably aware, aphasia is a communications issue, normally associated with an acquired brain injury (ABI), and this, in turn, is normally caused by a stroke but could be an accident or infection. Aphasia can affect people in up to four ways and to varying degrees of severity. Receptive Aphasia is a term given to the inability to read and the inability to process incoming speech. Expressive Aphasia is a term given to the inability to write and the inability to speak, or at least, find the right word. Global Aphasia encompasses the entire list. The SayAphasia charity, recently setup has monthly walk-in meetings around the UK should you wish to meet like-minded souls for a chat and find out more information. To find out if there is a meeting near you, their website is sayaphasia.org. My wife had a stroke in 2011 and has Global Aphasia. If I were to mark on a scale of one to ten the severity (ten being most severe), to which she is afflicted I'd probably go for; Reading - 9, Processing - 9, Writing - 10, Speaking - 9. Speech and language therapy can help but, sadly, not in my wife's case. Not yet anyway.