WARNING ! Not positive story . 🤐

Hi Smug David well done setting up tablet without help of teenager. Years ago was it a zoologist who said if you gave a monkey (chimpanzee?) a typewriter and enough time it would eventually type Hamlet script word perfect? Well that monkey would have scripted Romeo &Juliet & the Tempest & Midsummer night’s dream before I’ve mastered my Ipad. :confounded:
…

Hi Anne, I would just like to say that using a mobility scooter does take a bit of getting used to. Like you my husband used to walk to my left and helped me avoid a few collisions !! . As I can’t feel my left side, I always feel as though I’m going to slip off the seat, although my husband constantly reassures me that I’m not !! I don’t use my scooter very often but it has enabled us to travel abroad and have lots of outings that we would otherwise not be able to carry out and for that reason I would not be without it. Maybe little and often trips might help your husband gain some confidence using his scooter.

Good luck and keep up the good work.

Regards Sue

Hi Tony, 6 years! Yes 2.5 seems long . looking for any improvement has been painful. So many great positive stories, although I enjoy the advice & support from forum I did find myself, almost questioning myself reading them & feeling rather deflated. Your cebral ? Stroke similar to my cerebellar? FATIGUE improved for you or rest much . I have not really studied medical reasons etc , just thought OK and tried my best to get on with it .
Good talking David.

Hi Rups, All the research & various you do I didn’t picture you like me spending so much time in bed . How much sleep & bed rest do find best for you ? Quiet surprised few months ago my gp , so not stroke specialist stated that because I had cerebellar stroke possibly not to expect improvement, in next 10 years! Some people might have been offended, I wasn’t, but definitely interested me in her reasoning. She didn’t really know much about me & had stated this by mearly seeing the word cerebellar. Wondered if this standard opinion? I tend not to over analyse things, believe just got to wait & see . Good talking David.

Hello @David3, for the first eight months, I would eat supper and then go straight to bed. Wake up at around 11 am, couldn’t start my day until 2 pm. For two months I was virtually bedridden as I had started a prescription of anti-anxiety medication. I am still in bed as I write this! Now, I wake at about 9 am (sometimes 10 am). I usually start my day around noon. I need to rest at about 4 pm for an hour. I am better with my evenings now, and can usually last until about midnight, but that is doing leisurely activities in my sitting room. As my vision is so corrupt, I tend to need bed rest after about an hour’s worth of activity. Sitting in a chair doesn’t help because I am still wobbling inside, only supine position in bed alleviates this symptom. I am probably truly active for about six dispersed hours of my day, and the remainder is resting, but tend to do “fill up” those six hours if I can.

I tend to take my bed rest when needed, and if symptoms are acute. It hasn’t been unusual for me to spend almost an entire day in bed. Walking around takes persistent effort. If I am feeling confident and my mood is elevated, I can manage things better. I am very far off being recovered, and have given myself a five year goal for review of progress.

Technically, cerebellar stroke as a physical injury is considered easier to recover from than a regular stroke (as a generalisation and if you are lucky), but it also comes with a condition called cerebellar stroke syndrome and that can last for a very long time. They don’t really understand how to manage it. Cerebellar stroke also has greater long term morbidity, and a greater mortality rate than regular stroke, so we a very fortunate to have scraped through that statistic. I have a friend who had two cerebellar strokes, and ten years on, still suffers painful relapses.

Hi Pds , Yes feel once again achieved something in my little world. Next up , fix a light above my bed for reading. This will require much thought, many notes & help from my wife. How things have changed! Used to be a builder, dream was to build own home. Hey ho ! :grin: . David.

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Hi Ann , Sorry no advice, just my experiences , find sunglasses helpful in dimming down? Surroundings , Zoom tried , but overload for me . Spent 5 years in North Devon, very little money around, constantly chasing for work ( builder) , moved to near Worcester, had stroke, can’t work, Devon almost prepared us , to be careful with money, similar to you , get financial help, much appreciated! I do think back at silly world, of endlessly working, to spend on stupid stuff, that maybe we believe should bring happiness :grin: . Good talking David.

Hi Rups, yes believe only about 5% . Early start for me 6.30 ? Lights out 9.30pm . ( lights out / sorry used to go to boarding school ! ) Good speaking David.

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Hi David
Yes it will be 6 years in April
The forum can be a very helpful place and I have been very encouraged by recovery stories, especially from those who are a long way from the event like me, I have corresponded with others who are 10 years plus which has been good to understand that things can change even a long time after the event.
However it isn’t all about getting better, or returning to normal and it is sometimes refreshing and just as helpful to hear about struggle and frustration as it is about triumph.

My stroke was ischemic, and affected my left side very badly.
I recovered enough movement in my leg to be able to walk, badly and with a stick. I haven’t recovered any real function in my left hand but do have some grip movement and the spasticity (stiffness) is generally much reduced, so that’s a small improvement, initially my hand was so tight that I had to prise the fingers open and it wouldn’t stay open.

I can rest it flat now without it flexing into a fist. This just happened over the last couple of years. It isn’t much but it isn’t nothing.

With lockdown restrictions etc I didn’t go out much and I’ve lost some of what I gained in terms of standing and walking. I have resorted more to the use of a wheelchair than previously and I’ve lost a lot of confidence in going out unaccompanied. This year I hope to work on building my walking strength and confidence back up.
I am not setting goals, as I only get frustrated.
I identify intentions instead, it’s a softer approach and suits me better. I don’t go much for the “fighting” talk. I found it liberating a while ago to begin to accept my condition as a disabled person. It is a process and continues daily.I experienced the dread Fatigue, it really gets in the way of recovery plans. It has lessened in intensity over the years, and I don’t force myself to do things. I very been happier since I stopped working.I did manage to get back to work but it was a complete disaster.I lost my job 3 years ago and do not miss the emotional strain it caused.
I’m in the fortunate position of not having to work now. I had to go back when I did because our livelihood depended on it. I wouldn’t have otherwise, and don’t miss it now.

So thats a bit of my story.
My cognitive functions were not affected a lot fortunately, and I retained the ability to read which has been a source of great joy for me over the years following the stroke. Fatigue doesn’t interfere with that activity too much, happily.
It has been good to talk with you and I m grateful to you for opening up this thread of " not such good news" stories if I can put it that way.

Best wishes for the year ahead.
TONY

Thank you, Tony, for your story. It helps to see the long picture with small improvements. It is also interesting not to make goals! just intentions. My husband is ‘happy’ to be disabled. I think it is me that is not happy with that! I am being dis-abled by that I guess, unable to go out for longer than 2 hours at a time in case… [commode duty]. As it is we are grateful for the income his disability does entail for benefits. I can’t earn more than carer’s allowance or I lose that; it is barely £70 a week. But, as I said, we are thankful for making ends meet at the moment, keeping the car going, and having the bungalow now. We prayed. God provided- it was not coincidence in getting this bungalow. That’s a longer story but we are thankful for lots of things. That helps.

sorry - was that in reply to David’s comment - not Tony’s story!

Sunglasses! Yes, that might help; thanks. I’ll have to find his old ones! Good tip. Being thankful is a key I have to positively remember.

Hi David
This might be a bit of a long winded reply, but I hope it may help someone navigate the post-stroke journey in some small way.
I had my stroke on 23rd December 2009, a thalamic stroke which left me in a wheelchair for 3 months. It took me a long time to get to accept what happened to me, and I feel like I came to understand the process via an unconnected path - from bereavement.
Reading about bereavement and loss I came across the “7 stages of bereavement” listed below.

  • Denial
  • Pain
  • Anger
  • Depression
  • The Upward Turn
  • Reconstruction
  • Acceptance
    I came to realise that these were also the stages I went through after my stroke, over a period of 2 years or so. The “bereavement” in the case of my stroke was the loss of me as the person I was, my old active and energetic self. I had to let that person go and start Life Part 2 and accept I had to be a different person going forward.
    I recall in hospital being told by consultants that the best recovery I would make would be in the first three months - that’s definitely BS.
    11 years in I don’t now make many improvements, but I would say I really did for the first 10. I walk with a drop foot, not well and with balance issues, but I learned how to manage - which side of the roads’ pavement had the best camber, keeping close to walls.
    I talked to many people from the Stroke world over the years and while it is true that I do not live the same life I once did, I have met some wonderfully kind and generous people that I may never have come across otherwise.
    I spent quite some time in the early years feeling sorry for myself and feeling embarassed at how I looked. Acceptance was, when it came, quite a relief. I don’t give a monkeys any more that I look like Quasimodo dragging my leg behind a supermarket trolley.
    Wishing you the very best on your own journey.
    Martin
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Hi Tricia , I am thankful, I do not suffer any of those problems. Hope things improve, in new year. David.

Hi Tony, Yes Believe stories like yours, can be massive benefit for many , who might not post , believing they are being rather negative. Sorry to hear you’re using wheelchair again. My wife sees me shuffling around & feels I should poss rest more. Reality is I am conscious of returning to wheelchair. Good speaking David.

Hi Ann , Remember 2 years before stroke , looking for new
home , telling my wife wanted a bungalow. Not many around! Stuck to it & yes feel blessed now . Couldn’t manage stairs, manage to shuffle around OK. All the best to you & hubby in New year David.

Hello @AnneC, you are indeed between a rock and a hard place. As a carer, I feel for you. Your attitude is progressive, and it seems you have the best mindset in place for caring for your partner, lots of energy but perhaps not enough time for yourself. It’s difficult, my partner takes time away with her friends (overnight), and I get “babysat” by one of my friends. It seems to work. I’m glad the government has provided adequate disability payment, although, coming from Australia, I know that the disability care there is far better than here in the UK. That, however, is politics. I guess the main thing is encouraging your partner to follow his interests, from my experience with stroke survivors who have severe aphasia and ataxia (wheelchair bound), self-interests before the stroke happened are a good starting point for future motivation. It is just being able to tap into that. Hope you are having a decent week.

Hi David I too feel like you. Had a cerebal left infarct speech not affected. It’s been over 1 and a half years but still feel exhausted at times. Balance still quite bad. So you’re not alone. By the way I was a sprightly 66 year old when I had it. Feel free to ask me anything. Daphne

Thanks Rups, I reckon we manage but as to his self-interests, he hardly had any before the stroke that were separate from church and community work with refugees. He had retired the year before and we had spent that in the Peak District while I took on a year’s job at a college, managing the higher degree students a lot, so that left Colin to roam around happily, preach at various little chapels but after the year, we had to return to Doncaster, our old church and were barely getting re-established when he had the first stroke. After the second one 2 years and a bit later, he was really kayoed. Reading was impossible and is barely better than 3 words on a line now. So, he has audible books and TV. Nothing else seems to interest him -apart from food! That is a problem as he loves the carbs and cakes! not the veg or salads! I’ve tried occupying him with games like dominos occasionally. It doesn’t last long. I have other things to do with a few students on a self-employed basis. Anyway, I must not get into a pity party. Positivity has to be a discipline like thankfulness for what is good around us!

Any hints from anyone -I will happily try them!
Thanks
Anne

Hi Martin, very much appreciate your response. Long time! I definitely try to move on, but is obvious struggle. Good speaking David.