My name is Peter, I’m 60 and live in the UK. Earlier this year, in January, I had a right vertebral artery dissection which caused a cerebellar stroke with some medullary involvement (brainstem) Before all of this I was working as a doctor in the NHS, living a very busy life, and I honestly never imagined something like this would happen to me.
Recovery has been much harder than I expected. I still struggle with balance and coordination, have nerve pain around my right eye, weakness and numbness on my right side, with some weakness and my voice has been badly affected due to vocal cord palsy. Walking is difficult and I often need a wheelchair for distance or walker in the hoo. One of the hardest things has probably been adjusting mentally to losing so much independence so suddenly.
At the same time, I know I’m fortunate to still be here, and I’m trying to focus on small improvements rather than how far there is still to go. Becoming a grandad recently has also given me a huge reason to keep pushing forward.
I joined this forum because recovery can feel quite isolating at times, especially when people around you can’t fully understand what life after stroke is really like. I’m hoping to learn from others, share experiences, and maybe pick up advice from people further along in recovery, particularly around balance issues, fatigue, voice recovery, and adapting to a very different life than the one you expected.
Looking forward to getting to know everyone, although I wish none of us needed to be here. Peter
Hello Peter and welcome to the community. I feel certain you and the members of this community will benefit from you joining.
I don’t recall meeting a doctor on this forum before, though I suspect there may well be some members who have been or maybe still are practising doctors, and perhaps this bring a different perspective to some of the conversations we have on this forum.
Welcome to the forum, Peter. What an ordeal ; you likely have dysphagia and ataxia. Of course it’s even more complicated than that, but yes, life does get more lonely… that’s what the forum and folks here are for ! Wishing you a solid recovery, chin up, Roland… ps I’m 61
Hi Peter @Lappaman & welcome to the community. One none of us wanted to join butbare glad we did. You will find lots of useful advice here from people who have lived experience which I know was a huge benefit to me wgen I joined.
You are very early days yet & hopefully in time your stroke effects will improve but it does, generally, take longer than you think it will. You may be told that recovery stops after 6 or 12 months but we are here to tell you that’s not the case as long as you continue to work at it. The first 6 months are important though as this is the time when works its rewiring magic. It’s also the time when you need to rest loads to help your brain rewire. Resting for me meant sitting with eyes closed doing nothing. Watching TV, reading etc all stimulates the brain.
The loss of independence in an instant is one of the things a lot of us struggle with. I still do 4 years on.
Fatigue management is important. You need to plan, prepare, prioritise to try & avoid the boom bust cycle. It can take a while to work out where your activity limit is but don’t ignore the body’s signs that it nedds to rest. Even on days when you feel a bit better you should still pacecetc as it often catches up with you the next day or a few days later.
Ask away if you have any questions as there’s usually someone who can help.
Yes I had a nasogastric tube in for 3 Weeks and had to have enteral feeding through the tube. Being on a busy stroke ward for 3 weeks, watching food passing by is a strange thing. It was a great feeling when my swallow started returning and I am now back eating although occasionally cough with water and coffee.
I never felt as if I was il, just developed all these disabilities.
The ataxia is bad. It’s so off your body trying to push you to the right side.
Having looked after a lot of stroke patients over the years, I have learnt a lot since having my stroke. I developed the weird thermal issues from medullary involvement. My good side can’t feel heat as it feels cold and I discovered after my daughter trapped my fingers in the car door that I don’t experience pain on the left side.
I’m hopeful it will continue to improve, but it’s by far the hardest thing. Now at 4 months nearly and not sure how my work is going to react to this (particularly as I am nearly 61 years old).
Thank you so much for your lovely welcome and thoughtful advice. You are absolutely right, it’s a community none of us ever expected or wanted to join, but I can already see how supportive and helpful everyone is.
What you said about recovery taking longer than expected really resonates with me. I think before this happened I probably underestimated just how much healing and rewiring the brain has to do. I’m still very early on in the process and trying to learn to be patient with myself, which is not always easy.
The fatigue has definitely been one of the biggest surprises. Even small things can completely wipe me out and I’m slowly learning that resting really does mean proper rest, not just sitting watching television or trying to keep busy. Your explanation of the “boom and bust” cycle makes a lot of sense too and is something I need to get better at recognising.
The loss of independence has probably been one of the hardest parts emotionally. Going from being very active and independent to suddenly needing help with everyday things has been quite difficult to accept, so it actually helps hearing others understand that feeling.
Thank you again for taking the time to reply and for the encouragement. It genuinely means a lot.
But I can’t help wondering ; you had stroke patients and now you are a stroke patient. Does that change your understanding of what a stroke is all about? Silly question really, because I realize it must. Before, I knew this thing called a stroke existed, and that my grandmother had suffered 3 though she lived to the age of 93… but I had no idea the whole world could turn upside down. The oddest thing was that I knew I was having a stroke when it hit, by a process of elimination? I’m not sure how I knew!
Feel free to ignore my silly question, by the way,
ciao, Roland
Not a silly question at all. In fact, it’s probably one of the biggest things this experience has taught me.
The most as a doctor, I understood strokes medically. I knew the anatomy, the scans, the treatments, the complications and the statistics. I had looked after many stroke patients over the years when I was doing medicine and genuinely thought I understood what they were going through. For the last 10 years I was only doing my main specialty, gastroenterology.
What I didn’t truly understand until it happened to me was the human side of it. The sudden loss of independence, the fear, the exhaustion, the frustration of not being able to do simple things automatically anymore, and how invisible many of the symptoms are to other people. I also didn’t appreciate just how emotionally overwhelming and isolating it can feel at times.
Like you, I somehow knew something serious was happening when it started. I think when you work in medicine your brain goes through a rapid process of elimination almost subconsciously. Even so, nothing prepares you for the reality of becoming the patient instead of the doctor. I did have a concern that it might have been related to prostate cancer which I was diagnosed with a few years ago and treated successfully. However, I mainly thought it was a stroke, which proved correct.
I thank you, Peter, because this offers valuable insight. I think stroke patients often feel misunderstood by the medical team that treat them because, no matter how good their intentions are, the medics have never experienced what the patients are going through. Many things in life we take for granted, and have to, but it becomes an upside down world when proprioception (self awareness of your body) goes out the window. I suffered deafferentation for 3 years and my immune / nervous / hormonal systems all dysfunctional. And it’s not quite the same for all survivors. But imagine if this insight were fed back into the system, so that the medics learn from it!
Welcome to the community, I’m sorry to hear about your stroke.
We hear from stroke survivors all the time that recovery is a marathon not a sprint, it does take time and usually, like you have said, longer than expected. Focusing on the small improvements is a great way to keep moving forwards and congratulations on becoming a grandad recently these small things can really help.
I hope you’ll also find this community helpful for your recovery, there is a wealth of knowledge here from our members. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
I’m definitely learning that stroke recovery is much more of a marathon than a sprint, and focusing on the small improvements really does help. Becoming a grandad has also given me a lot of motivation during recovery.
The support and knowledge in this community already feels very reassuring, so thank you again
Hi @Lappaman and welcome to the club no one would freely wish to join. This forum is very heavily ladened with useful advice and support, just key in a few search words into the search bar above and you could soon be trawling through reams of wisdom, advice and support for most any topic/symptom you need to know about.
But whatever you do, you do it in small bites Because brain fatigue will be your biggest drawback just now. Your brain is otherwise preoccupied with healing and recovery, so it can have the short attention span of a gnat for anything else and requires frequent rest periods throughout the day. Though sometimes change is just as good as a rest, so it can just be a matter of stopping what you are currently doing and go do something else.
Congratulations on becoming a grandad, you two are going to learn so much from each other as that grandchild is your prime example for your brain’s redevelopment, so pay attention and take note
And check out the Spoons theory as this may help with managing your fatigue and learning the fine art of pacing yourself I liken the fatigue to a dog on a lead who doesn’t want to walk anymore, or wants to go in the opposite direction to where you want to go
Have you had your nutrient levels checked. If you are low in something that too could be affecting your balance and coordination. You can be taken by surprise by how quickly the healing body and mind can deplete any reserves. My gp checked mine at about 8mths post stroke, and it turned out I was seriously low in folic acid. I’d just assumed my symptoms were just part of the stroke effect. But not all of them were, I was prescribed a high dose for a couple weeks and that seemed to really pick me up. The balance gradually sorted itself out after a year or so though coordination took longer and still can be a bit iffy 5 years on but that’s mainly when tired.
That took me a few years to recover from. A few months ago I started coughing on a sip of tea and realised I hadn’t done that in a very long time. Whereas way back at the beginning I could practically choke on air several times a day
When I first started walking (or should I say staggering) outside with my hubby. After nearly walking out into the road in front of traffic once, my hubby started walking on the curb side to keep me steered away from the roads It took me over a year to walk in a straight line again A little tip is to try to not watch your feet. Look a lamppost’s length in front of you; and try watching how other people walk, follow in their path if you can. It helps
My stroke was left side ischemic so right side affected, 5 years ago, I was 59 at the time. It’s been a constant steady work in progress since then; but I can walk, I can run…as I’ve discovered in the past year. Cognition just switched itself back on one day about 18 months post stroke and then I got back into driving. I do a lot of resistance training at the gym, pilates as well as several strength & balance classes to help with building muscle back up and improving my balance and stability.
Aphasia has been the hardest one of all for to recover from and that’s what made it the loneliest for me. Not being able to talk, to question, query or describe any of my symptoms. Although it’s not really noticeable to others these days, it still takes are lot of work and takes a lot out of me to talk and sound “normal”. This forum has been blessing and a salvation for me. But I also had to relearn how to read and write/type again in order to join in and contribute here, That too is still a bit of a work in progress. But the forum has improved my reading/writing skills over the years and because we are all in the same boat, we don’t have any of the spelling & grammar police to contend with
Work is out for you for at least the next year. For now, you have to forget about tomorrow and just concentrate on the here and now, and what you can do for yourself today.
But you have some food for thought for the future. Maybe you have a new/redirected calling now, whenever the time is right. You already have second hand knowledge of stroke, but now you have true first knowledge of stroke. I would have thought that kind of experience would be invaluable with your medical qualifications. I’ve said many a time that the NHS and research could do with doctors like you in whatever limited capacity you can manage if not full time in the future. It’s something to think about, this stroke can set you on a new pathway. So never give up hope
Hi Peter - I’m now 2yrs and 6 months post stroke and still wobble a bit when out and about. To feel safer I use a walking pole which helps and car drivers stop at crossings to let me cross. Speaking is still a bit hit and miss but on the phone I seem to make myself understood. AI is a challenge because it does not recognise anyone with speech challenges. I just shout at it until I get transferred to a human. Keep positive and try to enjoy life as much as you can. Bob3
Hi Peter,
I’m sure your story will resonate with many if not all on here. If nothing else it confirms what many of us may feel, it can happen to anyone, but why, out of the blue did it happen to me! A question without answer! In my case my wife suffered a serious stroke September last from which, thanks to the amazing NHS she is making a good recovery, not complete of course but relatively minor. That was followed by me 2 weeks ago suffering what is termed an eye stoke, treated (as far as it can be) as a stroke. Again relatively minor compared to yourself and many, but nonetheless life changing. We both feel we have dodged a bullet somehow and whilst losing something, we have much to look forward to.
This community has provided a lot of support and good advice in understanding medication issues and dealing with the shock of it all.
Hiya ! Welcome! I had an acute right medial cerebellar infarction with no haemorrhagic component (thought I’d let you know that cos as a dr you will know what it means etc) 15 months ago now. Like f I was very independent , solo travelling and working part time and this was all smashed to pieces. Physically I began to walk again, got back to drive etc so in that respect I am lucky, but the mental health side of things and neuro fatigue remain, plus I can be wobbly on some days, so sometimes use a stick. Mainly to ward off others ha ha! I don’t have any family nearby so have had to struggle on my own which in some ways may have speeded my recovery? You may be wondering what to expect in the future, so just thought I would let you know you will recover and have a different life, who knows, having to go slower may turn out to be a good thing xx
Hi Peter
Welcome to the club that everyone wishes they had avoided.
Coming to terms with what has happened and exploring what the new you is capable of,is a journey that we have all been on .
You will find plenty of useful advice on this forum-we have all been there and have experienced similar challenges and found ways to overcome of work around them.
As a doctor you are uniquely qualified to pass back to your medical colleagues advice on how best to counsel and treat stroke victims.
My own experience 16 years ago was less than ideal-diagnosis and discharge with zero counselling or advice.Just left alone to deal with my life having imploded.
Thankfully I found this forum.
My stroke was via a PFO which allowed a blod clot up the vertebral artery to the basilar section and affect field of vision ,balance and minor coordination ( fumbly fingers).
Most improvement has come from learning workarounds rather than reverses of damage.
Fatigue is almost a universal side effect and managing it by working in brief spells with rest in between has been my most successful strategy.A 15 minute power nap can work wonders.
Good fortune on your journey
Tony
I’m sorry to hear about your experience and how you have been plunged into this nether world of what might be. Your story resonates with me because of the similarity. I am 65 and suffered a cerebellar stroke in August '25 while cycling on holiday in the Pyrenees. Probably a clot that had dissolved by the time of the MRI but no actual evidence of the cause. For me, left side, so many of your symptoms mirror mine - lack of feeling on right side; numbness on left, ataxia to left, e.g. Also vocal fold palsy. Additionally, double vision, hypersensitivity on right side, episodes of vertigo that left me on the floor and constant rhinitis in left nostril. But from your description, it appears that the stroke you suffered was more severe - I was able to swallow soft food by day 4 and start on liquids by day 7.
I agree about the loss of independence. I worked as a debt adviser which I found terribly stressful. The day after the stroke, my family told me that I WAS stopping work. That and my age meant I was relieved of the stress of making a shall I / shaln’t I work decision. I also had to learn to rely on others and accept their help. I discovered that there is a certain grace in being able to allow others to serve me lovingly. It was also wonderful to see my adult children caring for my wife and me. My two older sisters also provided support to allow my wife to work in the early months after the stroke; not something I would have considered requesting prior to the stroke.
My story of rehabilitation thus far is of really working hard physically. I had the advantage of being fit so I was quickly able to get to core exercises - plank, bridge, etc - and onto a stationary exercise bike. The ataxia meant the latter was a real challenge at first - sore hands and wrists from white knuckle holding on - but I managed not to fall off and was stable after a few days. I found a physio with lots of experience of patients with vestibular issues and she was fantastic in helping me with walking. Nine months after the stroke I am riding the stationary bike with a virtual cycling app (physio suggestion) for around two hours a day and managing 10,000 steps a day. And am just about able to pedal a tricycle 20 yards with support from two people. So a long way to go. I would echo what several people have said aboutrest. So long nights of sleep and several 20 minute naps a day are my norm. But I have also found that the (achievable) challenges of my exercise have motivated me and provided a sense of independence in a world of dependence.
One thing that I have realised in this journey is how the impact of every stroke is unique. And that no one can predict how things will progress. I hope that your journey proves successful and that you are able to regain functionality in due course.
and you could soon be trawling through reams of wisdom, advice and support for most any topic/symptom you need to know about.
Because brain fatigue will be your biggest drawback just now. Your brain is otherwise preoccupied with healing and recovery, so it can have the short attention span of a gnat for anything else and requires frequent rest periods throughout the day. Though sometimes change is just as good as a rest, so it can just be a matter of stopping what you are currently doing and go do something else.
I liken the fatigue to a dog on a lead who doesn’t want to walk anymore, or wants to go in the opposite direction to where you want to go 
A little tip is to try to not watch your feet. Look a lamppost’s length in front of you; and try watching how other people walk, follow in their path if you can. It helps 