Thank you Rups for your very informative article. I had a cerebellar and ischaemic stroke 12 months ago, was in a stroke unit for 2 weeks and rehabilitation for two weeks, now home with husband and old dog. I had no idea about the effects of the cerebellar stroke until now-temper, bad language, balance, fatigue, driving, losing words as I am about to say them, mixing up words, let alone doing most things I used to do. Thank goodness we are retired. Although my left side was affected (I drop everything) I have Hyper-sensitivity in my right side which still hurts but doesn’t let me down. A stroke physio gives me exercises which have definitely helped with walking and given me confidence so will continue,
A week ago I had a second booster with the Moderna vaccine and 8 hours after the vaccine had a raging temperature and my whole body was shaking and freezing cold then I started being violently sick this went on until the middle of the night when I fell asleep but felt dreadful . This has put my stroke recovery back as I am very wobbly but hopefully time and patience (ha! ha!) will help. I don’t know if anyone else has suffered, I did send a report to Yellow Card.
I hope you have an enjoyable May Day weekend in the sunshine.
This is interesting. I had a cerebellar stroke in May 2020. I had 11 days in hospital and a further 7 weeks off work. Since we were in lockdown and working from home, returning wasn’t too difficult. However, when I went back to the office in August 2021 I struggled. (I was an accountant by the way.). The interaction with other people was good, and I enjoyed being back in the office. However, tiredness in the afternoon was a real problem, my concentration was poor, and I began making mistakes. This got to the point that at the end of October I retired. I don’t get my state pension until September this year, but with a pension from a previous job we can survive.
I still suffer from balance problems, and having a feeling of “being outside myself”. That’s about as well as i can describe it really. It’s a little like having had one glass of wine too many. Some days are fine, others not so.However, I have pretty much full mobility as long as the ground is level. Slopes can be awkward, but not too bad as long as I don’t look or turn round. If I forget and do this it can be quite fun! If I drop something, I have to be very careful picking it up, as putting my head down is not a good idea. At least it means I can get out of doing the gardening! I can also still drive as my early vision problems have corrected themselves. I try to walk at least 2km each day, and sometimes more.
Afternoon or early evening tiredness still happens, and I usually drop off for about 20 minutes or so. However, during the night I sleep less. I sleep well, but not as long as I used to. I go to bed about 11.15 to 11.30, and usually wake between 5.45 and 6.30. Previously I had to rely on my alarm at 7.00 and would sleep well past this at weekends. When I wake up, I get up. If I don’t and allow myself to drop off or doze for a while, then I feel awful, and invariably have a bad day balance wise.
Overall I have recovered well. I am sad about having to retire, but enjoy my retirement and can still do most things to a degree.
Sorry this was a long post.
Alan
This is exactly the kind of thing I came here looking for as a newby cerebellar I needed to see this confirming it in writing.
I also need to see it this way because half way through reading your post I had to take a break to think, then start from the top again.
I feel less alone than I did when I woke up this morning. X
Diolch yn fawr, there’s some things I need to update and add to this but the forum has an edit expiry date on posts, but if you search cerebellar on the forum, I’ve tried to post things as they come to light on my recovery journey.
Hiya Rups. I found your description so interesting and informative. Definitely a man of words!! I had a cerebellar stroke over 8 years ago now but I still don’t feel I receive the treatment I deserve. Physiotherapy? What’s that?? I see a very good Consultant for my eyesight. Thats got him flummoxed!! He performed something called a Harada Ito Procedure on my right eye (my worst eye) which seemed to work for literally 2 days!! I shall show him what you’ve written. It might give him some ideas as to what next!! As well as having to deal with the things you’ve described, Ive found that due to blood thinners given to me since the stroke I now bruise like a peach!! That may have something to do with being 51 as well though lol!! Also after my stroke, I completely lost my balance and nowadays I’ve found a walker/rollator is the best way for me to get about. Anyway, thanks again for an informative and interesting read. M.
Information on here has been great. I too had a Cerebellar stroke, I’m at 16 months now. First six months were dreadful, really bad fatigue, and I was so worried I was going to have another one.
I have returned to work after six months and am working full time. I’m getting used to it and I’m not as tired as I used to be.
The next few months I have some hospital appointments hopefully to find out if anything in particular caused it.
16 months for these tests but at least they are happening now
Bore da @Mandie and @Dolanjo, diolch yn fawr. There is a lot more to be added and some revision I could make, but I think the rudimentary essentials are here. I can’t edit it now because posts on the forum have an edit expiration. Medical researchers surmise that cerebellar damage also affects visual cognition, so not only motor control, but also mental visualisation of cognitive processes. So, organising logical events in the mind can have the same “giddying” disruption as it does when we move or look around. Interestingly enough, I have been exploring my symptoms. I have noticed that the whooshing sensation some cerebellar stroke survivors describe comes from asynchronous body movement and eye movement. If I am walking forward quickly and then slow down, my vision takes a few seconds more to align itself to the reduced speed. This creates an effect not dissimilar to when a camera is dollying forward and the focus puller is adjusting the aperture of the lens at a different speed. When damaged, very finely tuned processes have multiple problems, I suspect one issue is that the compensating visual neurones get fatigued easily, so when it has to change gear, it can’t do it at the same pace as the motor neurones. Anyway, it’s all grist for mill in establishing ways we can retrain these functions to work seamlessly again.
I am soon to write up a post on how our brains process vision and movement, and bracket it with cerebellar injury in the hope that it provides more control over managing our symptoms. I have found that knowing what my brain is doing empowers me when dealing with my disrupted functionality.
This is really interesting stuff I had a Cerebellar stroke 1 month ago. I am quite uncoordinated in my left side but working hard to improve it. Eyesight seems ok now (everything was bouncing around at the time of the stroke). Also very scared of it happening again - feeling worse today as it’s exactly 4 weeks ago today it happened.
Shwmae @Seerahjane, creoso. Sorry to hear you’ve been struck. Cerebellar stroke is rare and rehabilitation research is thin, but now it is important for you to go easy for at least six months.
Thanks Rups for your excellent article on Cerebellar Stroke which I have only just seen. I learned such a lot and laughed out loud at the section on disinhibitions, I dare’nt put in writing some of the things I get up to and have never used some of the language!!! I have always found your articles interesting over the last 2 years and wish you well.
Diolch yn fawr @Sabrina1 , what a ride. I think, as I had ridden out stroke without prevention, that I had lost a heck of a lot of neurones. I had a stroke. Much like anyone could have in any stage of history. Woke up, and had to keep on living. Damage Done. Just keep on living. That’s life. Just keep on living. We don’t have to justify it, just keep it up.
Many thanks for the information. I had a right cerebellar stroke in January and am doing well although not back at work yet.
Does anyone have any experience of an associated change in emotions.
Sometimes I can get upset very easily but at the same time I suspect I have a reduced emotional response to family.
Any ideas out there.
Also I’ve been told the stroke unit cannot refer patients for therapy to improve my cognition etc. does anyone have any experience or advise on what works to improve problem solving etc.
Hi @GavT and welcome to the forum, this is an excellent site for getting answers to those niggling questions the health services don’t tell you.
It takes time but it can come back. In the first year after my stroke I was totally emotionally numb to my family and friends, I had to fake it half the time. And yet, I could cry at the drop of a hat when I’d see anything on tv or video clips for example. So yes it does go with the territory. The way I looked at it, my brain was protecting itself from real life while it healed and repaired the damage done. It would seem my brain concentrated more on the physical aspect of my stroke, getting my arm, leg and balance functional again and left anything else like cognition, my aphasia to find it’s own back.
If you do a search for “cognition” on here you will find a lot of past posts with various methods for improving cognition from fellow stroke survivors.
Just click or tap on the spy glass up in the right corner and type in “cognition” and be sure to select “in all topics and posts”.
If you then scroll down the list of results to the bottom and select “More…” you will get a fully expanded list of results.
From there you can also sort by Relevance, Latest post, Most Liked, Most Viewed or Latest Topic. I won’t go into into the “Advanced filters” because I dare say this is complicated and taxing enough on the brain.
I hope this helps and look forward to hearing more from you on here. It’s a good place to be, especially when you need to off load as we all understand better than anyone else, what you are going through. Take care
Also thought this post might help, it’s always worth a read through and can be reassuring to know you are not alone in this:
I wish I’d found all this information earlier. I think I have been my own worst enemy as I’ve rather allowed the system to provide everything so I’m 8 months in and just finding out really important info.
I know I’ve given you a lot of information so take your time reading through. I know at 8mths I couldn’t have manage all that info in one go. But I could have managed to save it to come back to and read in stages.
You’re absolutely right it’s hard to take it all in especially as I’m starting from zero knowledge but it’s so reassuring to read that other people out there are having the same issues to deal with.
I was trying to find a few posts related to aiding and training cognition but I can’t seem to find them yet. The trouble with posts is that they can start out as one particular topic and then evolve into so much more. And naturally stroke survivors join the forum, I think the majority of us just about manage to create a post let alone post in a category or add tags to aid searches. But I’ve no doubt others will be along soon to welcome you and assist with what I can’t remember, so keep checking in
Aye, I experienced a blunted emotional response for several years after cerebellar stroke, but interestingly enough, I could still get angry but would not see my anger as anything other than anger. I couldn’t feel the emotional effect of it, indeed, to this day, I still wrestle with negative moods, and have worked hard to consolidate them all into something more beneficially positive or, at least, not so negative. This sometimes takes thinking outside the box. They think that the cerebellum may play a role in emotional processing, but for many stroke survivors this may be subtle enough to escape their attention, however, it may well account for changes in mood after stroke.
Problem solving is a less complex thing, I play video games, puzzles games and the like but there are also dedicated sites and apps for stroke survivors like Brain HQ. Some are freemium and others are free. A fascinating positive for me with cognitive training during the first year is that the ability and information stuck much more firmly than my post-stroke days of learning. As an example, I used to listen to a series of audio lectures on English language etymology during the first eight or so months post-stroke, at the time it was a way for me to rest my brain, but three years on, I have discovered that I can recall that information very quickly, and that it has somehow become embedded in my brain without me having had to work at it like I used to with research and the like before I was struck.
I think that during the early periods of repair plasticity, things will stick to a sticky brain but may only become apparent down the line once all the fogginess and other difficulties have eased a little.
I see a very good Consultant for my eyesight. Thats got him flummoxed!! 
He performed something called a Harada Ito Procedure on my right eye (my worst eye) which seemed to work for literally 2 days!! I shall show him what you’ve written. It might give him some ideas as to what next!! As well as having to deal with the things you’ve described, Ive found that due to blood thinners given to me since the stroke I now bruise like a peach!! That may have something to do with being 51 as well though lol!! 
up in the right corner and type in “cognition” and be sure to select “in all topics and posts”.
