Hypoxic Brain Injury now too weak to walk

My dad suffered a brain injury due to lack of oxygen to the brain during an operation. After three weeks in a coma he very slowly came back with the long list of side effects of brain damage but eight months later is still suffering such stiffness in his joints he can barely move below the waist and weakness in his legs so he can’t walk. We are working every day to get him stronger after a lot of infections held him back but I am struggling to find any kind of helpful info on this. Is there anyone who has suffered something similar? Fatigue, memory and executive functioning are still improving but it’s the leg weakness that is causing the real dilemma.

[Cornishwaves247]

Hi, I suffered a bleed within my cerebellum which is responsible for equilibrium and mobility. This happened three years ago and am still learning to walk independently along with other symptoms to improve. I have asked many times for stories/advice on this and found very little. I feel everyone shy’s away and this walking experience is not one that seems to hinder many. Which is why I’m writing that you not alone with this walking concern. For me I just receptively try, I get let off the lead so to speak in areas which are flat and manageable. I go to the gym a couple times a week (not at moment of course) and do some exercises for my leg strength, they have seated machines which are really good. I try and swim once a week or every other week and I purchased a treadmill to keep the motion of walking in place. I find my legs get quite cold to so I like to use the machine to warm up. That’s all I can recommend in regards to help. It’s seems to just be repetitive practice. It definitely does improve, mine definitely is. Though it seems for me anyway that it takes time. I have good support from my parents who help me everyday in achieving a level of independence. They place a lot of time in helping me. Your dad maybe completely different with his recovery, he may be much quicker in recovery time. I think keeping the muscles strong is vital. Also having a good mindset that you can achieve it is important too. Best wishes for your dad’s recovery x

[Hidden in reply to Cornishwaves247]

Hi, thank you so much for your response, it does seem to be quite a rare situation and it’s lovely to hear you are having progress and managing to build your strength back up. You’ve come a long way, we’ll done! I do struggle to keep dad motivated and positive but he works with me every day to build his leg strength regardless. We have also found a fantastic physio in the last couple of weeks who is confident we can get from sitting to standing eventually. As you say, building strength is vital. It’s also very interesting that you have an understanding of why your mobility has been affected, all we know is that there was clearly some damage and that’s the extent of it. I was very worried for a while that he wouldn’t walk again but there is definite improvement and your story gives me added hope. There really is no alternative but to keep pushing forward and look forward to the next goal achievement. Thanks for your positive thoughts hopefully you’ll be back in the gym soon! X

[Cornishwaves247 in reply to Hidden]

Where about’s is the brain concern? I’m back of head for example. It sounds as if you are doing everything you can. It’s hard to find a good physio, I have tried a few neuro physios and I’m not convinced they understand, hence why I’ve had a few. Its good you found someone who’s good for your requirements. Your dad is very lucky to have you pushing and working with him everyday. It’s repetitive I know and not that exciting at times to keep doing it but it will all pay off. I find I see improvements in month blocks rather then in days or weeks. It is slow and it is happening in the right direction. I’m thinking of trying those ankle weights and doing leg raises. Just an idea or you may already do it. I be back at the gym in a couple months. I will wait for the gym rush to be over and then start up again. Hopefully the virus situation has eased a bit more to by then. All the best to you and your dad. Stay strong.

[Hidden in reply to Cornishwaves247]

Hi again, no idea as to where the damage is. For months in hospital they didn't even diagnose him, they had to add the label of suspected Hypoxic Brain Injury to enable him to be discharged to neuro rehabilitation. The hospital never actually tried to get to the bottom of it, just told us it would take a long time for recovery and how far he was going to get is asking how long is a piece of string. Very helpful! He walked in ok and left with brain damage and that is the only thing we know for certain. Dad was just starting rehab when covid struck and he was sent home so they could use his bed for that and care was discontinued. Your attitude is great towards recovery and agree changes seems to come in waves over weeks rather than days. I had thought about ankle weights also, but he's too weak at the moment. He can lift his legs independently now but it's taken months to get there - even putting his shoes on first seems to upset the balance. But it sounds like some really light ones may help build up your strength a little more. And the hydro therapy suggestion sounds brilliant. I hadn't thought of water, i'll investigate, thanks! We'll get there, time and patience seem to be the key x

[Symundo in reply to Hidden]

I had severe brain damage and shattered arms and legs etc.

I have had garlic over the years that thins blood and makes heart stronger and helps circulation in the brain long term. See if he can take cinnarizine, it’s an anti dizziness tablet but has helped my brain a bit where I can keep interest long enough to type this. It stops calcium going to the brain and opens up all the links in the brain and some that had stopped working. He may becoming dizzy already that your go should put him on. I think it’s sold as a travel sickness tablet to.

Static bike if he can sit on one, swimming perfect, try for him to lift each leg straight and hold it as long as he can. This helps knee and thigh. They do sell like pedals but attached to nothing just a stand that helps legs rotate. Also rest hand on his knee and ask him to lift his knee. It’s surprising how many quadriceps are used to do that little motion.

Good luck.

[Hidden in reply to Symundo]

Thanks Symundo, some really useful tips there. Dad is able to lift his legs, from not being strong enough in the beginning so this is probably the perfect time to look into the pedals. The garlic and Cinnarizine is also a very good suggestion. He is the same as you and struggles with initiation and attention. If I don’t go and exercise with him he never thinks to do it for himself, even though he can! I appreciate the time you took to respond, thank you !

[Symundo in reply to Hidden]

No worries. Just trying to save you the years of no help I got.

I just take everyday as it comes, Im just replying while I can before the carpets pulled from under my feet again.

My brain won’t get into gear until I have a pint of tea. What’s an easier boost is caffeine tablets ProPlus that I take 2 a day when I need to do something like this. I’m surprised what I take that I’ve just got into my stride.

Here’s something I found out only very recently about me and trialing the best morpheme strength to go back on. I have pain tolerance way beyond what I perceive as pain and what the professionals do as well. So I don’t feel the pain, and it starts to shut don’t my brain making TBI much much worse and I forget everything, then I feel the pain much later where I do nothing and don’t want to leave my dark den. I’m just saying this because it took years for me to find out where no one will help, and best a trial on your dad with a couple of paracetamol to test his memory if any improvement without taking anything else. Or ask same maths before and after the exercise where pain will increase in his head and or on limbs he had surgery on. He may have chronic pain before or after exercise he has no idea and best to do as much as you can now because it’s very mild arthritis season that if he has got it, he will know when it goes below 5 degrees C. I’m in pain below 10c but being cautious. You said he had surgery just re reading, so guessing if your 1980 your dads about 62 so a hip, knee operation that sometimes Arthritis appears. He should be ok, but just saying because I used to think how can you have pain and not feel it. The brain suppresses pain in amazing ways that I just found out after many many years. I was surprised to have Osteo arthritis at 35 a surgeon told me that’s got worse over the years.

Apologise waffling, had to put this in email and do slowly and waffle a little unawares.

I seem to be Ok giving advice because I don’t have to think because it’s my daily routine. But hurts my head to think. I used to laugh at people who said that, but it’s so true, it’s like your brains being minced.

Oh, I just remembered as well just taking them, Boots is good. Red Krill oil x2 and Ginkgo Biloba at the start of the day. Puts brain on turbo. Good stuff. But to much can give headaches.

What my problem has been is no one has gone to the full effort to find out every single TBI damage I have. That’s where your dads on a winner because your there who wants to delve in and find the TBI types he has. You can find out all or if anything else that’s wrong and write it down. I think I’ve added my list what’s up at the bottom of my profile. Tell me if not. I’ve got it all written down somewhere.

Knowing what your dads TBI is, is 90% of the problem. A Neuro Psychiatrist said to me years ago. “We know what it isn’t, We just don’t know what it is”.

But now I know all what I have, everyone’s flummoxed to what direction to help in. But it’s simple maths. If you know the question is, at least you can try to answer it.

Post it notes by your dads bed, it might be the same thing everyday. That and a clock because I have no definition of time at all. A picture of family or his old business card for reassurance when he wakes up because there’s always days when you wake up and don’t know where you are. His tbi maybe different.

Oh, post it notes with the day and what he has to do that day. I have the same notes that I add to by my bed for weeks at a time till I get them done, but it’s there if I ever wake up and feel like a mission.

Start Routine you can keep to, Continue doing something helps a lot but gives me banging headaches.

I found out repetitive of 36 times my brain remembers. I know, why 36. It’s getting to that 36 that’s my main trouble. And doesn’t have to be all at once, can be over time. Your dad should have a number that he can get to that then he will remember daily. But it still early, so get the red krill going. I get from Boots.

Been on here has helped a little, it took me over 15 years to find out what was wrong with me in its entirety, before I had no idea how to explain it so on good days searching on the net it took me years to figure out what’s wrong where people think you just can’t be bothered, and it’s never been that. What’s annoying is no one knows, and they refuse to acknowledge it. Where I have been surprised on here so many of us are very similar.

Good luck. Tell your dad he’s not on his own, hopefully he’ll improve much better than me and if I’ve got anything to do with it I want to prove that it’s a true TBI that Psychologists etc refuse to acknowledge.

The static bike pedal on google shopping for £22. Checkout if cheaper or good seller. They tend to break after a year or two with my mums taped together now, I can’t use them, I have to go straight for muscle strength because my limbs were shattered and to painful putting pressure on them.

Best of luck and trial your dad on simple maths.

I’ve chatted with people over the years and a chap on here all with high iQ who can’t do simple maths anymore and if you can get your dad doing that without driving him mad, there may be hope.

No idea if I’ve said but try find out when his best recall date is asking questions to where he remembers. I have a full year I remember that’s from 1999. That’s my memory date for prices of everything and conversations that I remember best. Don’t hint to much, maybe mention holidays you had over the years. That recall helps me to act more normal, all conversations and that nothing was wrong with me back in 1999, that doesn’t help with doctors. But helped force me do what I was good at sometimes.

Keep in touch with improvements.

I’ll add my TBI at bottom of my profile. You may relate to or you can check of his list.

[Hidden in reply to Symundo]

Hi, i now have a list of useful things we should try, thanks! I have had a look at the static bike pedals and for the price definitely worth a try. Dad is having a lot of pain in one hip despite having been 100% fine before he went in for the op. it has hindered his physical recovery as he's reluctant to move it. They told us there were "chronic changes" so we have assumed arthritis, so this may help loosen things up. I hadn't considered that his hip seems better lately because the weather is warmer! We'll have to push on as much as we can before the autumn comes.

As for diagnosis i'm afraid it's the opposite. Dad went in for a heart bypass and valve replacement in October last year. He's 78, I'm jules 1980 because 1972 was taken, haha.

He was losing a lot of blood so they reduced his body temperature to slow the flow and believe he was too cold for too long causing some kind of damage. A week into his coma they game him a scan to see if there was a clot and if he had possibly had a stroke but that was clear - we had exactly the same conversation as you I'm afraid. They knew it wasn't a stroke but not what it was. He was in a coma for a month in total and when he came round he was suffering delirium for quite a while only becoming more "normal" three months later. He still has moments where he shouts numbers but otherwise mentally he has the usual signs of TBI. No short term memory, anxiety, lack of motivation, inability to watch tv or listen to the radio, unable to concentrate for long periods, only just relearning sudoku which was his passion. He's struggling with moderate though easy ones are now fine so i've bought another book of easy sudoku so he feels he's winning at something. I might look at some maths workbooks too just to give him other things to do as he was always good at mental arithmetic and might enjoy it without realising I'm challenging him. Lack of desire to do anything but sit and think seems to be his greatest issue. He doesn't want to be occupied and then gets very frustrated just sitting and thinking negative thoughts. Anyway, back to the point that the doctors seemed to think he wouldn't leave the hospital. He was so weak and constantly beleaguered by hospital infections that his DNAR followed him everywhere religiously and no further investigations were made. They literally made up the diagnosis of suspected Hypoxic Brain Injury as he was getting ready for release to neuro rehab otherwise he couldn't be discharged! But he survived, and is getting stronger every single day, but he is still very down and it has been an extremely traumatic experience for him.

I have read your profile and you have been through such a horrendous experience that your strength and will to succeed shines through. I hope that you received some good mental support throughout your experience as well, that is something that i feel is hugely overlooked sometimes in these cases. Definitely in ours. It's a hugely debilitating life changing event that seems to be treated as a medical issue only and then that's it. I appreciate your input and the effort it took to give, many thanks! Julia

[Cornishwaves247]

Just another thought I tried the Hydra pool in my early days.