Recovery set backs

About stroke
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Morning everyone, I hope we all managed to get through Christmas in our own way. My husband is still in hospital, just coming on for 4 months now since his massive stroke and crainiectomy. He is doing well as now able to eat a normal diet (hoping his peg will be removed soon), talking well but his mobility is still very bad, with his whole left side affected and loss of core muscles, so unable to walk or sit up properly.

He did manage to start to wiggle his left toes a while ago but has just lost his ability to do this. Last Tuesday he had his first injections of Botox (left arm and leg) and I wondered if this might be the cause………has anyone else experienced this?

His mood if very low, is on anti-depressants which help with him getting the real bad thoughts, but keep him very flat….which is hard to see. I keep trying to lift his mood but this latest bit of non-movement has made him feel he is going backwards.

Any advice on the set back in movement would be gratefully received.

Thank you

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It sounds like early days. How old is he? If you look at other people’s comments you will see that a stroke has different stages. I don’t know if it is any help but he can expect two steps forward and one back in recovery. Try to help him not to expect recovery straight away, but celebrate littly things.

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@HeatherT

This link will take you to something I posted sometime ago.
It isn’t answers but writing it helped me begin to deal with my predicament.

It took a while before I began to feel I had a direction, before I realised what I had survived.

best wishes

keep on keepin on
:writing_hand: :smiley: :+1:

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Heather - I am sorry to hear of things and you have done the best thing coming on here and drawing on everyone’s experience. I cannot directly say as my own strokes were very mild by comparison but from what everyone says setbacks can happen - But breakthroughs happen too it’s encouraging you’ve experienced this & it’s part of the process.
From my own experience definitely ups and downs & not least mentally too - an unseen battle with its own good and not so good days. Your husband is finding his way it will be difficult for you too. Keep talking to each other, to staff, local help (stroke association) and to everyone here. We are interested, supportive and pleased if anything helps.
Do please keep saying how things go. I’ll be thinking of you both…

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Good to hear of your husbands progress. He has come a long way but of course still has a way to go.

It is difficult to say if the botox has had any impact on him being able to move his toes. It could well just be the ups and downs of stroke recovery. I have days where my toes move slightly then other days no movement in them at all. I believe each movement is a bit of progress though and hope that one day my brain will remember to move them all the time.

I hope 2026 brings loads more recovery for your husband.

Take care of yourself too as that’s very important. You’re doing amazing.

Best wishes

Ann

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Having a stroke is surreal and isolating in so many ways. It’s also frustrating. And in hospital those feelings are magnified tenfold because you are cut off from your own world and you can do nothing about it. It’s a hard place to imagine being in. You are left trapped in a bed with your own thoughts for the majority of the day and night. You can only lie there and watch the staff and visitors all buzzing about, chatting and laughing away to their hearts content. You can liken it to being in an empty room, strapped into chair, with nothing but a telly on with the sound muted.

It’s a hard place to be in and an even harder place to climb out of. And it is a long hard climb out. It takes years and it’s not easy. It is like wading through molasses.

And it is very much two steps forwards, one step back. Progress is like watching paint dry, only slower.

But not all progress is visible to the naked eye. The majority of it is being made internally. Wiring has to be repaired, signalling redirected, remapping the brain etc etc. Needless to say, all vital internal organs will get top priority, his brain being the top most priority because he also had a craniotomy. His brain has an awful lot of work to do!

Time is at a standstill for him, but as he starts reconnecting with his limbs it will gradually pick up pace a bit. Certainly once he’s home again, surrounded by all that’s familiar to him, he will be more encouraged. Its just that right now, he hasn’t even got a kitchen to go to, to even attempt to get himself a drink. In hospital he is both limited and restricted in what he can attempt to do.

After just 5 days in hospital I was ready to crawl out if they didn’t release me :sweat_smile: Fortunately my hubby came and wheeled me out instead. But then, my stroke wasn’t severe. Your hubby needs a lot more care than I did. But once home he’ll be more inclined to test and push his limits and you will have to strain yourself, to stand by and let him. It is the only way.

I think the nurses were glad to see me go​:laughing: I gave them a few more grey hairs when I got caught trying walk by leaning over my wheely table one day :laughing: Well, I had one good arm and leg so thought I could just push myself along with the good leg and steer with the good arm, simple.

Not as easy in practice when you’ve had a stroke though. Just getting out of the bed was fête in itself, but I did it :grin: But I was exhausted for the rest of the day. Just the thought process that went into planning that little excursion was mentally draining let alone the physical aspect of it :blush:

Your hubby does have a moutain to climb, but he will do it. He’s strong, he’s a survivor or he wouldn’t have survived the op let alone the past 4 months. He needs to stop feeling like a patient, less like an invalid and start feeling more of person in his right. And that’s the tricky bit when you’re stuck in hospital surrounded by invalids :face_with_diagonal_mouth: Do you even know yet when he might be able to come home?

Lorraine

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Please be aware Botox is no joke ; absolutely. Botox is derived from one of the most potent biological neurotoxins known to science: Clostridium botulinum toxin type A. I was able to narrowly avoid it.

Botox is a valuable tool for improving quality of life post-stroke by managing painful spasticity and preventing contractures. However, its dangers are real and are primarily related to improper use, excessive dosing, and lack of a comprehensive rehabilitation plan. The risks of systemic spread, particularly worsening dysphagia and respiratory function, are the most serious threats.

The decision must involve a detailed risk-benefit analysis by a specialized medical team, with the patient and family fully informed of both potential benefits and these significant risks.

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Hello Heather - I am unable to offer any advice to help you and your husband as whilst my Mum had a severe stroke, the follow-up care and medications were minimal which perhaps in some way was a blessing in disguise as it means Mum has had to let Mother Nature and her own body do all the healing and recovery. All these things are personal and we all recover at our own pace based on our abilities, support we receive and our age etc.

@Pando - thanks for the info on Botox. We never had it and so I was not aware of the information you have shared with us. It seems you need to be aware of exactly how this is being used to help you. In some ways, I guess this is like all other medications that we are asked to take and we should perhaps always carry out a risk-benefit analysis to see if this is right for us.

Heather - wishing you and your husband all the best.
:pray:

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It has to be administered with great precision ; hit a vein and it’s curtains. Sorry to scare people, but they are unaware of the very real dangers and risks that go along with Botox.

R

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Hi, Thank you for your comments. I must say we were told of some risks before they did the procedure, but they didn’t make it sound as scary as you have! His doctor just said about having it done, appeared by his bedside later that day and did it, I think it takes 2 weeks to work, but he said it made his leg numb.

The good news is that he has managed a little movement in his left foot today, so we are crossing our fingers that this was a temporary set back.

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Thank you for your comments and kind words. My husband is 57. I think he is just inpatient, laying in the hospital bed, he says it seems to him like he’s been in there years, not months! I visit every day and spend as much time as possible with him, but I’m lucky that I can at least go home and get some proper rest.

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Thank you for all the posts, I’ve read them out to my husband today. It helps him to hear others stories and good wishes and will hopefully give him some hope for the future.

We currently have a discharge date for the end of January, but this will depend on getting a care package and equipment in place. I’m lucky that my job is to design and project manage disabled adaptations, so at least I know what is possible in our home and the people who can do it for us (although I didn’t imagine I’d be doing our own home this early in our lives). I have a contractor booked to start on our house next week, I am in a position to be able to set up ground floor living and a shower room for him ready for his discharge. As good as the facilities are in the rehab centre, I’m sure he will recover better at home, being on the ward is so disturbing with all what goes on day and night.

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I second this ; nothing beats home !
To watch my 44 days in hospital try this : https://youtu.be/mVjgv4S8qWY

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Hello Heather, just wanted to say hello and that I too know a little about how you feel. My husband (75) is five weeks post stroke now, his left side is paralysed, but he is able to lift his left foot and bend his left knee. He can speak well and is cognitively as before, but he is struggling mentally and is on anti-depressants. He got his NG feeding tube out last week and is eating mushed up foods at the moment. He will probably be moved to a rehab facility next week, and then hopefully eventually home, maybe with carers a few times a day in the beginning. I have found that reading the posts on this forum has been a great help to me, although I live in Norway and the medical system is different here. I visit him every day as well and try to be cheerful and optimistc, but I am so worried for him. Five weeks ago he was active, working full-time …

Wishing you and your husband the very best for 2026, Anna.

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Thankyou for your reply Heather. All the best for 2026!

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Hi - does he have any kind of massage? Massage is great for circulation. Also acupuncture. I couldn’t wear any ankle boot in the left because it hurt so much so I had some acupuncture and it helped immensely. Alternative therapies are viable options. Also - homeopathy. It’s the only theory that I know of that helps with neurons . Too many people don’t know about alternative therapies which makes it even more depressing if you have to deal with side effects . Also intermittent fasting drops the BP . Good luck

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Hi @ScottishMagic - welcome to the community. It’s great to have you join us as you have knowledge and experience of alternative therapies.

It would be fantastic and most helpful if you could some of the therapies that you have used and how they might benefit others.

Alternative therapies are ignored far too much in general and I expect it might be even worse in the world of stroke survival.

Looking forward to you sharing your experiences :slight_smile:

Namaste|
:pray:

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Hi Manji - I don’t know you , do I??

I can only comment on things I have actually experienced. I was forced in a way to look in other directions because I couldn’t tolerate the side effects of the tablets - three different lots . Side effects were horrific. Also - not being able to move around/do stuff like I used to whilst waiting for some pill to work its magic just didn’t suit me. I have always been active . I am a yoga therapist by trade - ins was in the French alps ever winter skiing, hiking in the mountains and doing acupressure massage on the people on their ski holidays. I started trying to do yoga/workout three weeks after my stroke . It was to say the least hilarious because my whole left side was and still is weak. Hence I still walk like a drunk with a wooden leg, my left toe still sticks and I do sometimes still fall . But to a degree I believe Mindset is everything and start as you mean to go on and all that jazz.

My lovely daughter gave me COVID five months after my stroke. Covid sars 2, to be exact . So I was bedridden for three days and couldn’t eat and couldn’t take any pills . However, on the fourth day my BP had plummeted - to near normal and I was astonished. So I started to research the effects of fasting (intermittent fasting) on BP and again - surprised and optimistic. Everyone has to do their own research and do whatever feels right for them. Also meditation. I believe that meditation is like prayer. It’s a direct connection to the higher or unseen Self. Some call it god . Doesn’t matter. Same thing . Meditation for me has been the ultimate healer- always shows / leads me to what I need to do . Like I already said - acupuncture enabled me to wear an ankle boot on my left foot. Osteopathy for me has also been amazing and I highly recommend the Osteopathic Teaching clinic In Borehamwood. Full assessment and treatment for about thirty pounds . I cannot eat like I used to because dysphasia interferes with digestion. I eat twice a day . Once between twelve and two - depending on whether or not I feel hungry- usually always raw. I make my own salad. Bananas or smashed avocado on oat cakes or ryvitas is two favourites. In winter I make soup- vegetable/lentil/ I then have a cup of green tea with a sweet treat about three/four - no sugar in the tea and then dinner is at half six/seven . I have what I want although I am not a big meat eater and I cook my own food every day. and that’s it. I don’t eat anything after dinner because of acid reflux - caused by damage to the Vagus nerve which is often damaged by stroke if not before and affects everything from the base of the skull down to the stomach and liver region. All pain I deal with myself . No pills . I use acupressure because I can do it myself at home and it’s Free. I hope this helps :folded_hands:t2:

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Hello ScottishMagic - I don’t believe you know me, but maybe you do? I am not even sure if anyone knows me, in fact I think I don’t even know myself!

I have spent some time on this forum trying to find ways to help my Mum recover from her stroke and I read as many posts as I can and reply to quite a few. I always find it interesting to see how people have responded to the Stroke and how their lives have changed and what they are or are not willing to/able to do going forwards.

I found your introduction particularly interesting as you mention alternative therapies and you come across as very positive and offering suggestions that [presumably] have benefitted you. I really like that and especially because my Mum is/was very much an alternative / home remedies person before the stroke. Post stroke she has been “forced” to take medicines because the stroke has left her “incapable” of making her own decisions. As her carers we (family) try to respect as much of her pre-stroke wishes and that she made clear to us of how she would like to be looked after in such an event as her becoming incapable of looking after herself. Before the stroke she was super fit and very independent, but now she is still [probably] super fit but the stroke has left her dependent on others for even her basic needs.

Many of the things you mention are things I myself have explored (apart from acupuncture) and practice myself but I find it hard to help Mum in this way as there limitations and I have to be extremely mindful I don’t fall foul of the safeguarding rules which I am obliged to respect by law.

Thank you so much for taking time to give such detailed feedback and I now feel as though I do know you :slight_smile:

Take care and keep going.

:pray:
ManjiB.

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Aww. What age is mum and what side was the stroke and how long since she had it ? It is a process. I have spent weeks and months in bed with what I call stroke sickness - I feel absolutely nauseous, trembling inside and totally weak. A homeopathic remedy helped immensely. I am fortunate to have been using homeopathy for nearly forty years so I know a little bit about them . I have not had the above symptoms now for three months. I have not taken anything for cholesterol or to thin my blood for three years simply because am afraid and do not trust the pills that GP’s (ie - General Practitioners) give out because they are basically selling pills for drug companies and don’t know Anything about a patients dna or indeed the risks of the pills they give out. Did you know they don’t work for the nhs ? They’re private. Private pill pushers. Meditation and fasting controls the BP. I haven’t taken the pills for three years. Alternatives for cholesterol are Vytox Pine Bark extract which has been used in Europe and Scandinavia for hundreds if not thousands of years and was recommended by a homeopath and has been shown in clinic trials to be more effective than aspirin. However- more and more doctors are coming out and saying that cholesterol is not the enemy and indeed is necessary for the body. I don’t take supplements any more but I do drink warm water with lemon/ lime every morning. It’s a lot of research and trying but you know - India has about 200,000 registered homeopaths as opposed to to only a handful in UK. It’s the Mother land of healing . Homeopathy would be a good place to start perhaps? :folded_hands:t2:

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