I spend a lot of time reading posts and something I see often is people being told , or telling themselves , that an impairment after stroke is forever. Acceptance is important, but I’ve started questioning how confidently we can define permanence in stroke recovery.
I’ve personally been told multiple times that parts of my recovery were forever or that I’d reached a plateau:
Hip drop after stroke — after over a year of neuro physiotherapy, I was told this was forever. A single 45-minute osteopathy session corrected it, and it hasn’t returned.
Knee hyperextension after stroke — again told this was forever after a year of physio. A chance use of orthotics for something else resolved it.
Slower left leg and limp after stroke — said to be forever. Music therapy using a metronome app corrected the timing within weeks.
In every case, I’d been told recovery had plateaued. In every case, change happened when the right input appeared — not necessarily more of the same rehabilitation.
I’m not saying everyone will recover everything.
But I do question whether we can definitively say an impairment after stroke is forever, especially when:
neuroplasticity continues long after the “standard” recovery window
fatigue can mask recovery potential
recovery may depend on timing, safety, and the right stimulus
acceptance may sometimes be encouraged before all options are explored
The brain doesn’t stop trying to rewire — even when progress looks stalled.
I’m genuinely curious to hear others’ experiences:
Have you been told something was forever after stroke that later changed?
Do you feel acceptance helped your recovery, or limited it?
How do you personally balance realism with hope in long-term stroke recovery?
Sharing this to understand, not to dismiss anyone’s reality.
I am 61, 3 years post severe stroke (26/42 NiH stroke severity scale). I wholeheartedly agree with your post. In fact, I am writing a book about the new discoveries and progress that I make on a weekly basis.
I had an acupuncture session with my Chinese Dr. yesterday, and after had some breakthrough moments with arm ligaments / nerves / feeling. There are many things which heal me including minerals like magnesium, and, as a theme a “return to nature” some of which which I recount on my YouTube channelhttps://www.youtube.com/@Start-Again-xyz/videos
My whole recovery defies what ‘experts’ say, starting with “is he still alive? well he shouldn’t be” (which I tell about in Spock’s Stroke. So I took recovery into my own hands. It’s the same story everywhere.
I had a mild stroke in 2017. I had gait ataxia and annual epilepsy. I didn’t feel affected by them and my husband held my hand so the gait ataxia didn’t effect me. However dragging me along hurt his arm and last year I started using a walker. It felt I was back to square one. I read about the brain retraining itself but that hasn’t happened for me. At the moment I feel resigned to being slightly disabled. I often think about surviving my husband who is a very good carer but he is nearly 80. I am 75.
Hi @AlisiaGayle & welcome to the community. You raise some really good points & I agree with you that we shouldn’t just accept what we are told & give up on any further improvements.
I have seen so many people report improvements years after their stroke.
For me the acceptance bit was important to help me get back to living my life again albeit in a different way to before. However, that wasn’t an acceptance that it would be like that forever. It came with a bucket load of determination to continue to improve in all areas. Yes acceptance but also continue to work on the rest.
I was never told my symptoms would be permanent but then again, I never asked because I thought I’d be rehabilitated the following Summer after stroke. Five years on, I have made progress and indeed, fatigue masks recovery potential but I also think fatigue is part of the brain juggling neuropathic needs and new synaptic connections. I eschew the term recovery only because I think it feels like an absolute and do we ever recover from entropy which is the natural state of physical and mental deterioration, however, we may rehabilitate what we can, reaching peaks of homeostasis that allow us a quality of life that is acceptable under the terms of our subjective existence.
The stroke I had, physically, affected my gait and proprioceptive capability but it also affected other cognitive functions associated with my psychological profile. I was able to rehabilitate my gait significantly. My cognitive visual-spatial issues continue to improve. However, the brain is complex and psychological complications can disrupt physical faculties and vice versa.
I imagine that one’s rehabilitation journey may rest on personality, circumstance, physical constitution, environment, access to medical resources and actual extent and location of brain damage. What may be achievable for someone who has had a more positive experience of the above may not be achievable for someone who hasn’t. I don’t know if a condition, anatomically can be rehabilitated for every individual (If a certain amount of damage and location of damage allows rehabilitation.) but I would think that the factors I have mentioned above would determine if it can rehabilitated on a subjective level.
It is true that plasticity continues our whole life for certain parts of the brain, but whether or not that is the case for every individual, I cannot say. I guess if a medical practitioner says something may be permanent, on one level, at least they aren’t raising expectations than if they were to say it isn’t permanent and then it turns out that it is that way for the individual. You can’t bring a negligence case against something that turns out not to be
I dont know how to add to this discussion but would like to add a recent problem and how I solved it.
Three or four times recently had bad nights dreams, almost nightmares. I came to the decision that it had to be me who was causing them. I have been overeating chocolate since Christmas, trying to get rid of masses of chocolate goodies. I’m a choconut so I dont need to explain!
Decided to cut it all out as well as extra handfulls of cashew nuts I love.
Hey presto, a couple of nights trouble free. Yesterday decided to see whether I’d fixed the problem so had one choconut lump.! Last night it proved I had found the problem because I had a difficult night, not as bad as the nightmares I’d been having, but enough to show that I was on the right track.
Problem is that I’m facing a New Year without nuts and chocolate…….this is going to be hell!
My dreams on the whole are curious, interesting and pleasant, it’s my waking hours that prove more nightmarish.
I used to eat mixed nuts as a toilet trip night snack. I should resume the habit but mixed nuts are so expensive these days. I’m sure it is the sugar and caffeine in the chocolate that is disturbing your sleep so if you have some for breakfast instead you might sleep more soundly.
Chocolate for breakfast does not appeal to me! but I think I will try some nuts in a few days when I’m ready to experiment again! Thanks for suggestion.
You eat them in the morning instead, problem solved
Chocolate, cheese and spicy foods are the classics for disturbed nights sleep. My daughter actually uses them when she needs new material for her writing, works every time
The only thing I can add to this conversation other than I whole heartily agree that osteopathy could greatly benefit many stroke survivors. Unfortunately its not on the NHS and too costly to go privately for many, as it is with most physio etc beyond the NSH 6wk limit
And before anyone quotes what price do you put on health and wellbeing; unfortunately, for many it can be food on the table and a roof over their head.
Hello and welcome!
We (my Mum and her carers) are totally with you on this.
Many times we have been told the limits e.g. won’t walk, won’t talk, won’t get out of bed and so on. In fact that is all we’ve been told and each time we have ignored that and carried on with our own rehab and today we are living a life that no one (healthcare) had expected us to achieve.
It is been a long journey, but considering we have had next to no help and any help has been offered a token gesture, too late and just to keep us quiet, we have done, and continue to do, remarkably well.
In the last year, our rate of recovery has increased and we are achieving “bigger and better” which when you think about it is logical. The more you practice, learn etc. the better you get - it’s how athletes become elite, it’s how academics become more knowledgeable etc. etc.
Mum refuses to be beaten and she will fight until the day she dies - that’s what she lives for. She lives for life and the life has to be the best quality she can achieve.
All her post-stroke rehab recovery has been through her own willpower and determination. Her brain has continued to repair itself and her body (physical) has remained strong.
So we are with you all the way and we fully expect a full recovery
There are no limits for us and nor should there be.
I went to a College of Osteopathy rather than a private clinic. Because it’s a teaching school, the treatment cost me well under £30 per session. Appointments were longer, around two hours, and I was treated by final-year osteopathy students under the supervision of experienced lecturers.
If you’re struggling with costs, it’s worth looking for a reputable osteopathy school or teaching clinic in your area. You can still receive high-quality care at a much lower price.
Thank you so much for sharing this. What comes through so clearly is the determination, love, and belief that has carried you and your mum forward, especially in the face of so many limiting messages.
You’re right that recovery doesn’t stop just because timelines or expectations say it should. The idea that progress compounds over time through practice, learning, and persistence makes complete sense, and it’s powerful to hear how that’s played out in your mum’s life.
I also want to acknowledge how hard it is to do so much without meaningful support. What you’ve achieved through willpower, consistency, and care is remarkable, and it speaks volumes about your mum’s spirit and the strength around her.
Thank you for the encouragement and solidarity. Stories like yours remind people that prognosis isn’t destiny, and that quality of life is something worth fighting for. Wishing you both continued strength and progress on the road ahead.
Thank you for that suggestion, I’m definitely going to look into that. I know the osteopath I used to go to held me off from having my hip replaced for a very long time. But now retired on a pension, finances don’t stretch as far but that sort of price might be doable if I can find school near me
I found your comments quite inspiring. I am 80 this year and it has been two years post stroke. I had an excellent neuro physio and a supportive wife who says you can do things- everything except buttons, they are a real challenge. Never give in. Bob 3
I have a slice of toast with peanut butter every day but have yet to try that chocolate one! In fact I’ve never heard of it. Perhaps it’s not on New Zealand Shelves!
