I had a stroke 7 weeks ago and up until a week ago I would have described having very few symptoms other than tiredness and muscle weakness in my arms. A week ago I met some friends for dinner and we played a board game which we have often played together and I was really shocked that I couldn’t understand the instructions or indeed play as there was too much information for me to understand, at some point I couldn’t read the information on the playing cards. A few days later I went along to my Choir rehearsal ( first since summer break) and was surprised that I couldn’t organise my music or follow the score. I was very shocked and have contacted my GP and Stroke consultant, Im waiting for a response. As the week has gone on I have noticed increasing difficulty, struggling to get my words out and my hands shaking when I try and lift something. I joined a zoom call on Thursday which was really helpful. I feel like Im going mad, one minute feeling fine the next unable to process information. Im a single parent to my teenager and have no family around me, she has Autism and ADHD and PTSD, and Im trying to keep it all together but this last week have just been crying and feeling so vulnerable and a bit paranoid i think. Does/did anyone else feel like this?
I’m so sorry to hear the feelings of being overwhelmed are ganging up on you. Your journey is different to mine but has common themes. And I imagine others will chip in to say they have common challenges.
Definitely please keep giving the community here the opportunity to provide you with their support. There are knowledgeable wise and empathetic heads here despite the fact that they’ve all had a knock!
7 weeks is still very early indeed If you were saying it’s 7 months we would be saying that’s very early.
What you describe I believe is the territory of a neuropsychologist and relates to difficulty with processing sequences of operations.
Also the fact that your experiencing it more noticeably now the earlier may be that you have been overdoing it in relation to your recovery needs. That is typically after a stroke you have a smaller battery that runs out quicker - if you continue operating at pre-stroke intensity it’s possible that your exacerbating the effects.
Easily said hard to do but there’s an element of take it easy. Leave idiscretionary things aside because there’s lots of non-discretionary healing activity going on
I think on Thursday I said I would send you some information but I’m afraid my strokey brain leaves me wondering what it was -
I seem to remember one component was where to look for support groups just click the blue text
If you can remind me of what else came up I’ll happily respond I should have made notes! But then I wouldn’t remember I had a note or where it was and I probably wouldn’t understand it when I reread it - as a closing thought pretty universally all of us here have found that things get better over time and they get better fastest with a smiling outlook so one of the first things to do is find your smile again
Thank you for your kindness, I can’t remember either. It took me overnight to work our how to post the message once I had written my message . Ive e mailed the local groups so hope that I will be able to join something locally. I feel like all my friends are all looking in kindly from the outside, its such a weird sensation. In brighter stuff I have now started a jigsaw….who knew they were so hard lol
Especially when a kitten decides to sit in the middle of it
As you remember or as you discover a need for a challenge post on here and somebody will jump in with helpful suggestions
Shwmae @Sass, I’m sorry to hear that you’ve found your way to our forum, but it is a beneficial and positive spot to help guide survivors through the disquiet of stroke. Seven weeks is very early on in stroke recovery and from my experience, confusion and brain fog is expected but, depending on the stroke, there can be issues with processing information. I had a cerebellar stroke and one of the symptoms is not being able to recognise patterns in information, so I had a lot of trouble understanding instructions. I used to play a lot of card games with my children, and that became challenging after stroke, in fact, I had to have someone else work out the rules, so I could get on with playing. I play video games, and there were some games I can now play but couldn’t for the first year or two of recovery because I had to follow a lot of information in order to play the game.
There can also be other factors in processing information that can disrupt a stroke survivor’s capability, and these are worth considering too. If your brain is fatigued, it is less likely to be able to commit itself to information, this fatigue may be brought on that day or the days before.
If it is distracted by other stimulus such as people talking, visual noise, and internal monologue, it can struggle to focus.
The early months of plasticity seems to be an intense period of repair, your brain is wanting to try and heal the damage and not play cards I had my stroke in September of 2020, I thought that by the summer of '21, I would be back on track. I went out and did activities, thinking I was pushing through and making progress, but in fact, all I was doing was preventing my brain from self-directing repair.
I hope you find this forum a good resource.
@Sass firstly well done on getting together with friends & going to choir rehearsal. They are massive achievements just 7 weeks after a stroke.
What you describe can be a stroke side effect. I had & still have at times difficulty processing information and following instructions. You may not have noticed earlier as you hadn’t done those things. As @Rups mentions too it could be fatigue related. At 7 weeks I wasn’t able to do any of that - fatigue was a massive issue for me. Looking after your teenager is bound to be exhausting for you.
Hopefully you’ll hear back from your consultant / GP soon. In the meantime try & take it a bit easier (easier said than done I know).
I am uncertain I have anything useful to add, other than to stay hopeful. Most of us have learned to do many of the things were weren’t able to do for awhile. It is all very scary, especially with a child to care for and no familial support nearby. Tears were big for me for quite some time, not immediately after stroke, but a few months later when I came home. Also I noticed more issues as I tried more, most especially in the areas of executive functions, emotions, and communication. The physical things were obvious so I was able to get help for those right away as opposed to the others being not so obvious. All issues became worse when tired or overwhelmed with too much noise, light, patterns. It isn’t gone forever, but has come back by not trying to multi-task (very hard in this day and age, most especially with kids), and by telling myself the steps out loud to do what I need to. What I am trying to say with too many words is stress yourself as little as possible, do what you can when you can, rest and eat well, write down what you notice and when (what you are doing and what is going on around you) so you will remember to discuss with GP to get further help, and so you will know what things trigger issues for you. And most of all, keep hope…You will find your way around, one way or another. For me, this forum helps me keep faith, hope and positivity. I hope you will find the same.
In your case, 7 weeks is so early in stroke recovery that it’s hard to make any predictions about what is going to happen, etc. Attention span and processing information can indeed improve over time. With strokes, you have to be so, so patient. Luckily, for some, improvements happen spontaneously, especially in the first 6 months or so.
Sadly, my mother regressed 5 or 6 months after her stroke and went insane, more or less. Please don’t think that this will happen to you. I am sorry; it just hurts me to know how I couldn’t save her.
7 weeks is very early on in the stroke journey and it does seem to be worse when you are tired. I hope that you and your daughter can get some outside help even if it is just to allow you some time to rest
A good metaphor to apply to what’s going on in your head.
Think of it as a network of roads and motorways in your head. Now there’s a lot of disruption due to road works going in those areas of the brain needing repair or rerouting/remapping due damage done by your stroke.
There will some minor delays in certain areas, major disruptions in others, and more permanent diversions put in place as new road links and bypasses are opened up. The smaller road work repairs will be completed within a year but any major repairs or new roads to be built could take longer. I could say they’ll be completed and the new roads open on the 1st of April 2028 but you know as well as I do that’s never the case, they’re never completed on time. So be prepared for small delays, temporary disruption, signal failures, traffic jams, major traffic backups and grid locks…that’s the fatigue
That’s how I see my brain these days, because every time I get in my car to go anywhere my area, that’s what I’m faced with…a 12min drive to the gym can become an hour long. The same road works, diversions and delays that went on in my head for 2½ years. All much improved now of course…but there’s still room for more improvement.
Hi, that is so so helpful, excellent metaphor. Lots of grid locks going on today after an hour on a jigsaw
Stroke is a major inconvenience on life in general, it’s the pits as my sister would say. No one tells anything in hospital other than you had a stroke They leave all the rest for you to figure out for yourself as or when things manifest themselves. In case you haven’t already had it pointed out to you, try reading through the Welcome post some members on here put together Welcome - what we wish we'd heard at the start It’s full of useful advice and information you may find enlightening.
Try not to worry so much about, it’ll get easier as time goes by.
’ You can’t stop the waves, but you can learn to surf ’
So learn to laugh more instead, it’s good to see the funny side of life even if it’s just from funny clips on TicTok. It help relax you and relieves some of the tensions in your body too, and I’m all for making my new life easier, not harder.
I think it’s disgraceful that the Stroke clinic don’t even give you a leaflet saying, your brain might be affected go to the Stroke Association website for more information. It leaves you bewildered and frightened. When my roadworks improve I will think about campaigning to get them to do a leaflet if I remember lol
Actually that’s not a bad idea. We were in lock down when I had mine. Spent just 5 days in hospital, but I couldn’t talk, couldn’t even question the Consultant when he came around. And of course no visitor who could ask questions on my behalf, it was a bit a scary time. I eventually got my own answers in those first months after coming home. I suppose it could be seen as a blessing in disguise as it forced me to work harder at my own rehabilitation in order to achieve that
That’s definitely one thing that’s missing in stroke recovery. I was just told if you feel significantly worse then you need to come back but was never told what might be an expected symptom. I know it can be different for everyone & they probably can’t say too much in case we don’t go back when we should but something would be useful.
The AHP ‘strategic lead’ for several local health authorities has commissioned a project to address this gap. I’m giving a lived experience input (and the folk producing the guidance absolutely need the voice of reality added!!)
I’ll keep y’all posted
Yep. This all sounds familiar. My memory is awful and everything must be written down. Sometimes things are just too hard to do. Other times I’m much better.
Up down and day to day. Acceptance helps.
Frequently both tiredness and a weakness in my arms. The fatigue is normal, I’m told, and will reduce but it is so frustrating. I used to think I could sleep for England, I was always having a nap. Now I just have one in the afternoon! Sometimes I go without but feel a fraud !