Hello, I’m Ray and, as my stroke was well over three years ago, in October 2018, I feel I pretty much know what I’m stuck with for the rest of my life.
My balance is not good - in fact, without a pair of sticks or my ‘rollator’, I would be unable to get around at all. The other main legacy from the stroke is very slow and slurred speech. I had a couple of TIAs in the months prior to the stroke but was told by the consultant that they knew the cause but couldn’t operate ion the artery without making things worse. I am fortunate that my long-time hobby is photography and, although mostly limited to the garden, I have had time to concentrate on this more lately. Recently I bought a mobility scooter and this has enabled me to go further afield - such as down to the Quay - for my photography. My wife has limited sight and severe arthritis of the hip and is very limited in her mobility - in fact we both move around at about the same rate!! Of course this could be partly because we are both 87 years old! What strikes me about many of the contributions on this forum is that people seem to know much more than I do about their stroke - being able to give a name to the type and so on. They also seem to be able to describe how it happened whereas I have no recollection of the circumstances but accepted the decision of my wife and (adult) son to summon help and the decision by the paramedics to get me to hospital. Did anyone else have a similar ‘non-experience’?
Hello, I’m Ray and, as my stroke was well over three years ago, in October 2018, I feel I pretty much know what I’m stuck with for the rest of my life.
Hi Ray, welcome to the forum. Sorry to hear about your ongoing issues following the stroke.
It has to be frustrating for you that your consultant couldn’t operate and maybe have prevented the stroke.
I guess it depends on where in the brain the blockage or bleed was that contributed to you not knowing/being able to recognise you were having a stroke.
I knew I was having a stroke but couldn’t speak to get help, luckily my hubby was around so he called for the ambulance.
As I was only given a CT scan that showed nothing (not a MRI) the consultant diagnosed a probable area the blockage happened, based on my symptoms and how I presented when admitted. The only definite was, it was a stroke.
If you received a letter when you were discharged, that notes the type of stroke you had. If you no longer have that letter, your GP will be able to give you the details, if you still want to know the area damaged in your brain.
It’s great you have your mobility scooter to get out and about to enjoy your photography hobby
Wishing you all the best, take care
Hi Ray , Similar to you , poss ? Stroke over 2.5 years ago. Aged 62 . ABSOLUTELY no improvement. Terrible fatigue, bed 3 or 4 hours in day . Speech, not good. Mobility I win , , only 1 stick, if out rollator or scooter. Probably made mistake with scooter, (Luggie) rather narrow & unstable, managed to topple over twice. Can only manage, about half an hour, brain almost shuts down. Interested to know about your scooter experiences ? Very supportive wife. Not really benefited in investigating, medical info , just tried to just get on with it . Main problem, is trying to accept this could be it ? Can be almost more disappointing, hoping for improvements, that don’t come . Recently been using rather solid & heavy yoga bolster to support my weak side in bed & chair. Must say , great improvement on soft pillow or cushions .Great you can get to quay now. Good speaking David.
Hi Ray. I can remember the moment Stroke hit me although no idea I’d had one. I didn’t lose speech so help came quickly. What I can’t remember is the medics arriving or the ambulance taking me to A&E on blues and twos. I know I had what one nurse described as ‘as all bleed’on the brain, but no idea where in the brain the stroke occurred.
Fortunately, I have improved but regard myself as partly disabled. Balance is variable and I have to focus on walking and watch my steps. I’m worse on downward slopes and gravel. I am lucky that I’m generally cheerful and, it may be in my genes, very stubborn and determined. Welcome to our forum.
Hi Ray. I read your story with interest. I had a stroke in December three years ago and a minor one three weeks ago. I am eighty three years old and still do not know the cause of either. I use a rollator to walk in the house and outside until recently.
I keep an interest in most things. I have a power wheelchair which I use when the weather is more kind. My story is similar to yours as I still have never been given any explanation of what caused the stroke. Keep on with the photography, it is good to have an interest. Best wishes Lilian
Hi David 3 had an interesting chat with reclusive neighbour who sustained brain damage in serious accident . Ok not the same as being stroked. Told him that us survivors are told that the healing starts soon after and plateaus out after a year. He said I don’t buy that, my accident was eight years ago and I’m still healing, don’t believe what the doctors tell you. Member of my stroke support group was a driving instructor and although still has speech problems has gained enough mobility back to be able to drive again. Know all strokes are different but your still a young un so hang in there . Yes the accepting is a hard pill to swallow, with me it’s the permanent (?) loss of some vision ,but live in hope and on glum days list the positives in my life. They always out number the negatives. Almost ended up in a&e yesterday when I did a nose dive in ye old dark country pub with undulating floors and steep uneven steps , shook me up good and proper but no bones broken so still bright eyed and bushy tailed keep well Pds
It was really pleasing to get so many replies/comments to my introduction.
It’s obvious that, although there are many similarities, everyone’s experience is unique to them. My TIA and, presumably, my stroke were the result of a blockage in my left aorta but the scans showed that this was at a point difficult to access and that attempting to do so “could cause a stroke.”
Rather ironic, as things turned out!
Getting used to my limited physical abilities is a bit depressing, having to rely on my ‘children’ (all in their fifties or sixties) and other people to do the little jobs I used to do as a matter of course. I used to do all the maintenance jobs -electrical, plumbing, woodwork and so on but I have to learn to accept tradesmen being brought in for most jobs.
As for the mobility scooter, David3, I bought this soon after my stroke, thinking I had better do so before I recovered enough not to need it!! (sound of hollow laughter)
For two years I didn’t use it, drawing stern disapproval from my wife and younger son - ‘You spent all that money on something you don’t use’ - etc!
Things turned out well, though, because my wife’s arthritis made a scooter a necessity for her to visit shops or friends and we bought a small, second hand example which kept ‘bottoming out’ on our uneven pavements and had a variety of other shortcomings. I persuaded her that a bigger scooter would solve her problems but, when it arrived, she said it was ‘too big’. She tried mine and, like Goldilocks, found it ‘just right’ so we did a swap and now all is fine! I agree that the smaller, narrower scooters are limited and rely on being used on well-kept roads and pavements.
I also agree with you, Pds, that on most days, the positives outweigh the negatives.
Sorry to hear about your fall. That has happened to me three times recently and, as you say, it shakes you up even if it only results in a few bruises. The problem i find is getting up afterwards - every time, despite all my efforts, I have to just stay on the floor until someone can pick me up - and I am no light weight!
Again, many thanks to all who responded to my first contribution to the Forum. It’s good to know you’re all out there!! Ray
Shwmae @fotoRay, sorry to hear of the stroke but pleased that you have a positive, leisurely pastime to turn to. Many stroke survivors are left in the wilderness post-stroke. The Stroke Association are trying to amend this by standardising discharge, but these things take time. I had six TIAs and a cerebellar stroke, September 2020. I was in hospital for just over a week, when the doctors did their rounds I prepared questions for them each visit. I think I took up a lot of their time too. I may have been the annoying patient on the ward with too many technical questions, as I was digging around medical journals on my phone to prepare my questions. Maybe because I knew the stroke I had was rare, and cryptogenic (unknown cause).
Hi Ray, welcome & sorry to hear about your stroke. In answer to your question about did I remember having the stroke, no. I was sitting upstairs in our loft room watching television and “woke up” on the floor just in front of the sofa. I was confused as to why I was finding it difficult to get back up but I wasn’t distressed. I calmly kept trying to push up with my left arm and leg but couldn’t comprehend what was wrong. It was quite a dream like experience!
My wife happened to come up with a cup of tea and I was still on the floor so I raised my (right) arm and asked her to give me a pull up. She looked at me and sort of laughed as it was a boiling hot evening and I was only wearing shorts. Then she looked a bit closer and realised my request to give me a pull was a slurred gibberish and my face was all lopsided. Her smile changed to a look of worry and she called down to my son. He came up, looked at me, then rushed back down and called an ambulance.
I believe I was really lucky, as later we worked out that it could only have been less than 30 minutes between the stroke and my wife finding me. I was within the 4 hour window for the hospital to give me the clot busting drug.
Six weeks in hospital (including 2 in rehab) and here I am almost nine months later!
I am just about managing 3 days per week working but the fatigue is very difficult to manage. I am going to have to have the discussion with work about reducing my hours permanently from next year but will use holiday entitlement to try and get through until then.
I am 55 by the way. I have a heart condition but at the moment they still don’t know what caused the stroke. Still carrying out tests which included going up to the Brompton last week to have an ILR device fitted in my chest (to monitor my heart rhythm over an extended period).
I wish you all the best with your ongoing health.
P.S. I also used to really enjoy photography but have let it slip since my boy grew into a man and I don’t take kids football photos. However, I have booked a short trip to South Wales in July to see the puffins on Skomer Island (which I’ve always wanted to do) so will dig out the SLR for that.
Sorry for the over long reply (it’s a habit of mine!).
Hi Pds , Always hopeful. / RATS Just can’t rid of them. Laying in bed , in newish bungalow, listening to them in loft, no longer, can I get up ladder. For 3 years, they just return. No success with pest control guy, cages , various traps ,encluding zapper , Poison, only success, (don’t like using. )My wife puts in loft . Used to be builder, & yet can NOT figure where or why they keep returning? NOW where did I put those earplugs. Good speaking David.
Hi, I’m Magga. After ace ambulance service and superb hospital treatment I was diagnosed diagnosed with 3 bleeds on the cerebellum - that was 10 days ago so I’m very new to all this.
I’ve found your posts so supportive and informative - many thanks to all you helpful souls out there.
I’d appreciate a recommendation of a good book on strokes. I do have SF but also am sleeping poorly and have headaches - any advice there?
Have so much respect for you all.
Hi David3 that’s the sort of text I like, wildlife even vermin a passion of mine. Kept poultry and ducks and always at war with rats. Like you only used poison as last resort. Use to be ace mole catcher when they disrupted my vegetable growing . Biggest problem I had was badger trashing my veg garden just before village flower show . That year I was determined to win the blue ribbon event ‘long carrot class’ i needed 6, he left me two of the best carrots any gardener has ever grown. I’d crowbarred out 12 deep wide holes and sifted compost into them. Boy was the air blue in this part of Sussex. Then to rub salt in the wound he wiped out ducklings. The trials and tribulations of living in countryside. Only advice I can give is stick a Jack Russel up there. If you look on Utube there’s lots of ideas for catching them live. But appreciate unless your wife’s up to it! It’s a non-starter. Will be interested to see how i cope with all those critters when we move to our bungalow in April. Keep your pecker up and keep posting. Pds
Hello Magga, it’s very early days for you since the stroke so you need to take things easy for a while. Rest during the day if you need too. The stroke association has lots of leaflets on their site which may help you, sometimes the books can be a bit too technical for what we need. I would try the stroke association leaflets first. In the early days following the stroke I had I slept very badly, waking several times during the night and struggling to get back to sleep, it seems to be a common complaint. I used to listen to sleep stories from ‘Calm’ which you can get for free on YouTube. Don’t know how but they always sent me to sleep, I used to listen to the Nordland Night Train read by Erik Braa but there are a few others you could try. It’s now 4 years since the stroke and I now take Mirtazapine at night after a discussion with my GP. These help and in turn help with my emotions which were effected by the stroke. Hope this might help a little.
Ann, kind and helpful reply. Thanks so much.
Hi Magga, welcome.
10 days is very recent with regards to post stroke, your brain is still recovering, so residual effects are the norm as is SF.
Hopefully your sleep pattern and headaches will improve as the days/weeks go by, try to rest as much as you need, listen to your body as your brain will be asking it to rest up.
Welcome @Magga and sorry to hear about your stroke. Good to hear you had some good treatment from the medics though. I don’t know any books about strokes but I have to agree with @mum2two ref the Stroke Association Leaflets. I found these an excellent source of help and advice. I’ve also found people on this forum to be really helpful and gained lots of good advice from them too. It’s very early days for you yet. Listen to your body, take it easy when you need to and hopefully you’ll make an excellent recovery. Best wishes Ann
@David3, are they rats or squirrels? We have rats under the flooring (or in the walls) but squirrels in the roof. Squirrels tend to be louder, and more likely to take refuge in buildings during winter.
Shwmae @Pds, had a bit of a rat problem a few years back. Came across a guy who enjoys staying up all night and knocking them off with a gun. Not sure what he does with the rats. The outcome of his mission for me achieved a relatively rat-free farmyard for many years. I asked him why he did it for nothing, and he told me that he likes meeting new people. Each to their own.
Hi Rups Years ago we had a plague of rats due to sewage pipe repair. Cat we had at time was a lap cat and couldn’t be bothered. Well come Christmas Day she was up at 5am sitting by oven guarding the roasting turkey. After lunch the turkey was wrapped in foil and put in porch, I went out at dark to close chickens and heard movement in foil🤔 Mouse I think. Enter house and peel a struggling cat of someone’s lap, dragged her kicking and moaning to porch.drop her to floor at that moment King Rat taking a break from pantomime excits turkey and the laziest cat in the world jumps three feet vertically gripping villain by throat, then demands to be let in while I’m left to dispose of corpse. She rested on her laurels after that. Pds
Hi Ray - I’m a year post stroke & still no medical diagnosis. I suspect it was caused by stress (business, lockdown, losing elderly parents) but …
Lockdown was not a good time to have a stroke so lent heavily on the SA website, which provides a lot of good ideas etc