WARNING ! Not positive story . 🤐

Love reading all your stories of improving. BUT I did want to put in a mention for a few , who simply have to accept, they survived & they may NOT have improvement. This is probably a small amount, but also may not post on here , as they feel, they are not being positive enough. Also you need to be reasonably OK to access & read this forum .
Do not think I am doing the poor me , but this is just a shout out for those like myself ,to say you are not forgotten.
Cerebellar stroke, small clots ,two & half years ago ,TERRIBLE FATIGUE , back to bed every day 2.5 hours, mobility, stick at home, scooter (slow & short, half hour ) , or 10 minutes rollator. Every day a struggle.
Mainly to mention to similar, I am now trying to ACCEPT, that this, could be me now , for a while. No not given in , but it can be terribly depressing waiting for those improvements , when they do not come for me .
Positives ,fantastic kind supportive wife ,can shower, with seat & grab rails, talk in short bursts (lots of notes, ) Can get own breakfast & morning coffee, then down hill. Also massive positive is feel I am not getting worst. Unless I exclude last couple of weeks setting up new Samsung tablet , absolutely drained me .
Hate to admit it , getting more use to new forum . SURELY BETTER NEW YEAR, coming up for all . :grin: . David.

7 Likes

Hi David, so pleased to hear from someone who has not made a remarkable recovery and who may not achieve more improvements. I suffered a hemorrhagic stroke aged 57 in February 2017, which left me with left sided paralysis. My husband is an amazing support and I still require help to dress and shower and I am unable to go outside alone.

With my husband’s help and encouragement, I carry out a daily exercise regime and am pleased to say I have maintained my condition despite covid and the lack of professional physio therapy.
Unfortunately I am still unable to use my left arm despite, 4 years of botox injections and fes treatment.
I will never give up trying to improve but find it a real struggle to stay positive and motivated when the improvements are so few and far between.

Regards Sue

I

4 Likes

Hello @David3, there’s a reason I liked your phrase “cerebellar club”, attached to cerebellar stroke is cerebellar stroke syndrome, and management of that is little understood. I know of some cerebellar stroke survivors, ten years on, still having regression, it drives them mad. But every stroke survivor is different. Twelve months on I still have a debilitating vestibulo-ocular reflex impairment, I have recently written more about it here … I think over the last twelve months I have made 1-2% improvements, with maybe a couple of 10% milestones after that. I suspect the awful fatigue is a result of vestibulo-ocular reflex impairment as that is a function required in everyday movements and sight, so the eyes register new information every millisecond, this puts a great strain on an injured brain. So, what’s the alternative? Rest the eyes. No, it doesn’t work that way. Even rolling over in bed requires vestibular movement. So, in a sense cerebellar stroke, for some, can be like a symptom incarceration, as there is little relief. Plus, there are extra complications that can come with cerebellar stroke connected to the brain stem and such.

On the plus side, when I have seen other cerebellar stroke survivors recover, they have done so very well with little residual symptoms. I, however, am not one of those survivors, and can only envy them in a gentle way. Anyhow, what you are saying is very apt to recovery, many of us don’t write when we are having bad days, and tend to communicate more so when feeling better. Also, the wind changes frequently, and one moment of joie de vivre can quickly turn sour. I recently did an interview for a podcast called Stroke Stories, on that day I was feeling particularly chirpy, thinking back to what I said, I thought I may come across as self-assured or smug about my recovery. I hope not, I was just feeling better that day :upside_down_face: and had it been a few days before, my responses would have been very different. On my good days, I am almost unbearably cheerful, I guess because not only am I lapping it up but I am clinging onto the feeling for dear life, dreading the next slip into ghastliness and relentlessness.

I am working on some rehabilitation exercises specifically for cerebellar stroke. Stay tuned. I will only know if they are effective if they work on me, and then I can’t be 100% certain they will work for others.

I think acceptance is the first step to being pragmatic about recovery, and seeing it from the outside. I have a five year plan for recovery, and then to review where I am up to there. I always enjoy your posts David, and hope that you are having a good start to 2022.

Hi David yes! That view has to be aired. I found the very early advice Accept ,adapt and adjust difficult to handle but just over a year on now coming to terms with it,Just . I’m able to get out and walk and as I strut think of the positives in my life , myAim is ten which I usually manage. I too got an ipad to help me communicate. Was set up for me , But going to take time to master it.

Hi David. Despite my improvements, I have accepted that I am partly disabled and might remain so. That said, despite my down days, I treat every day as a challenge to try and improve further. Alas, I have a younger friend whose father is so disabled by stroke, improvement is unlikely.

It is important to remember that stroke has a wide spectrum of effects. Just surviving a stroke is a bonus. Disability does not mean you can’t have a good quality of life.
I can’t walk very far and have no use of my left arm. However I drive, work (part-time), garden, travel, live on my own so have to cook if I want to eat. The only thing I don’t do is ironing, but luckily, I can afford to pay someone else to do it. There is usually some way to do things one-handed if you put your mind to it.
Janet

1 Like

Hi Sue , yes I found rather depressing hoping & waiting for improvements 2.5 years & they didn’t come . Today needed help too , getting dressed, I do struggle, before asking for help, very much appreciate, all my wife now does & how my stroke has effected her . Had a couple recovery days , due to short visit from my daughter, absolutely love these, but yes , do then need to rest .
61 when , had stroke, could not possibly think of work or driving again. Driving never really enjoyed, how is your mobility? Unlike you my weak side not too bad . Find grab rails in shower room, great help , very proudly managed to fix myself, so know I can swing on them safely. Like you can struggle to remain positive & although have great family, surprised just how isolated I can feel.
Good talking David.

1 Like

Hi Rups, Unlike you , my bonus ? is mostly I seem to be on quite a level plateau, ie don’t go up & down, unless I have exerted myself with something, mentally or physically & therefore understand, there will always be consequences. Good talking David.

Hi Pds , Accept ,incredibly hard for me , adapt, not so bad, bit of a challenge, OK & sometimes feel of achievement even on minor things good. MASSIVE, finished setting up tablet, all on my own , one better than you :grin: . Good talking David.

Hi John, Always have appreciated your support. David.

Well said, and thank you
acceptance is not much discussed, sadly, but is a big part of the life of many survivors. For me the balance between accepting being disabled and continuing to work for recovery of some function is a daily struggle even many years post stroke- nearly 6 unbelievably. So I join with your plea to those who may not have great recovery stories to tell, and may be put off by the wealth of positive stories, I for one greatly appreciate hearing the stories of struggle even if it doesn’t lead to anything being “overcome”
So thank you again for your brave and compassionate post.
Tony

Well done you and thank you. Accepting something that will not change is very difficult so thanks again for pointing out

1 Like

Unfortunately, @David3 my symptoms are still 24/7 and my better days are periods when I feel confident enough and my mood is stable enough to deal with them. I think I have now spent about a year mostly in pyjamas :joy: as there hasn’t been much point getting out of them because I’d be back in bed after an hour.

1 Like

Hi Janet ,positive always good . Mobility bonus for me is rollator, with seat. I know how to spoil myself :grin: . Thanks David.

Hi Mahoney , Pleased to hear about your return to work . Positive move. Good talking David.

1 Like

Well done for not giving up. I wish my husband would try; he just doesn’t even think about trying to help himself. So despite your slow recovery, you are being great in trying to stay positive.

Hi Tricia , Accepting something that doesn’t seem to improve is difficult. But also , good to be realistic & not beat yourself up when improvements don’t come . Possibly you had your stroke similar time, to me ? Good talking David.

Hi Ann , read your other post . How old is hubby? Car journey for me is terrible, 15 mins max , POSS sensory overload? I too bought second hand scooter, thought it was going to change my little world, get out & about. How wrong I was , can not manage, more than half an hour, once a month. Yet it is very difficult to try to explain to my son the reason for this , therefore avoid it . It can be very easy to almost shrink into a safe little world . I was 61 , 2.5 years ago, had a stroke. For me possibly realising, improvements, might not happen soon, is better than fighting for something that doesn’t come , possibly like hubby? Sorry can’t be of more help. David.

Yes I had my stroke 3 years ago it was a thalamic stroke which caused the right had side to have strange sensory problems. So even on a good day I experience strange feelings like tightness, tingling etc but am coping. Wishing you well.

Hi David
At least it means that not all recover and do have issues not normally talked about in the initial stages. The sensory overload may well be the clue. He will not close his eyes though! The Scooter I accompany on the side he can’t see well so if he’s about to ‘lean’ my way, I redirect him. On thin pathways that is impossible. I tried taking him down totally pedestrian tracks that go through a local estate but he was ‘lost’ not having been that way before, and couldn’t get his bearings. So, he wanted to go home and that was the last time we went out on the scotter - probably 20 months ago now. He’ll not let me take him in the manual wheelchair either; too bumpy! He’s 72, and 10 months now! The major car journey once every 2 weeks is to Sheffield’s Paces physio; it’s all motorway save the very start and end and yet it goes across a high area; he’s scared on the bypass that tree tops are at the side of the road. NO matter what comfort I give, or advice to stay looking straight ahead, not to the left he is obviously trying to control panic. We often end up doing physio on zoom instead but that really does not have the equipment to do it and he gives up after 15 minutes. If there, he has to keep going for half an hour, cajoled in a sense by the success he actually achieves on the parallel bars trying to walk. Remembering such successes should motivate further attempts but it doesn’t. Once home he just sits again. So, thanks for reading and sharing your story. Just hearing it is encouraging that not all have magic motivation to do things. It’s 3 years since the last major stroke, 5 since the first. I am restricted to being at home to work and lost my job 3 months into lockdown by June 2020 as the college I was working at for 20 years decided to make 13 of us redundant so they didn’t have to pay the extra to furlough money and they made it work to their advantage to give up the land we have been on since 1973 and sell, to move to Manchester. I can’t move all that way and they never even asked anyway. Reinventing myself has not been possible. A home-based tutor for theology students isn’t good for attracting paying students; they are already broke! HOWEVER, we have coped amazingly financially thanks to the social services package Colin gets. We trust God has his purposes but they’re not always easy to see! He does supply sufficient funds and I trust others get such help too.