Hi , our holiday to Uk ( car and ferry) went well after all our fears. Pre planning and thinking ahead with rest times helped. Most times felt like ‘ normal’ couple on holiday. Never thought that was possible some time ago. Grateful for the progress we ve made. I did most of the driving( hubby gets neural fatigue) but surprised myself by managing ok....with an excellent Co pilot of course.
One sad moment was when he was on his own walking up a steep hill with a stick , a young woman ( with another older woman) shoulder barged him and called him a drunken b******d. When I caught up he was so distressed, shaking and almost in tears. He was looking at floor and concentrating so had nt seen them. So cruel. Other than that tiny incident so many kind people, come and chat, share experience, offer help or smiles so never mind. What I wanted really was advice on following please.....
We had a few moments that caused hubby to panic ( tbi in March) I e walking over rough ground, new territory, uneven steps, emotion, big crowds, noise in ferry car deck, rushing etc. In these stress full moment left leg( was paralysed on l side for a while) refuses to move as brain instructs. Ie refuses to take a step and starts to shake.
This is only temporary and after calming down and taking breaths, normal service is resumed.
Just wondered if anyone else experiences this , what causes it and any advice?
Thanks Anne
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Charente
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Firstly. I'd like to say how sorry I am to hear about the incident with that dreadful woman ; I know I must often look drunk when walking to the shops, but I'd be so upset if anyone made an unkind comment. People need to think before opening their mouths.
Regards the issues you mentioned, my answers would be yes, yes and yes. Crowds, noise, heightened emotion etc.. are all classic symptoms of brain injury. I still struggle with most, to the point of avoiding certain events and, if I feel obliged to attend a family occasion, I'm always the first to leave. An injured brain has less ability to deal with over-stimulation...………………... but it takes time to learn what exactly that is !
And I really understand the loss of balance and fear of uneven ground. I was once (pre BI) compared to a gazelle when walking in the Derbyshire peak district ; now I'm more of a tortoise ! Uneven ground and steps (even my own familiar ones) always get my utmost concentration. My main freedom is cycling (on even ground) as my legs only have to cope with pedalling, so balance issues aren't a problem...…...pity the roads are usually too busy.
I'm guessing your man will, in time, find his equilibrium and begin to see he's 'been there - done that' and can do it again without fear. Most of us here have been where he is now, and it's a re-learning process which takes time and practice.
Best wishes to you both on this journey ; looks like you're doing great ! Cat x
Hi Cat, he does have physio x 2weekly but has decided now to talk to physio specifically about this issue and see what he advises.
Thank you so much for your positive ( and humerous) reply.
He’d so love to cycle again so that’s given him hope. Also it’s nice to know that for a brain injury we re ‘normal’. All coping with these seemingly insurmountable problems, to realise.... they re not insurmountable really, lots of tbi folks have them too. Given us food for thought and reassurance. We discuss at length al the problems and solutions.
Like Cat says sorry to here of the incident. People can be so presuming and rude at times.
I to suffer multi sound problems . Loud noises busy areas etc. I have tried to meet the problem head on via exposure to thesesituations where practical. ( you can't spend all day on a ferry).
I walk mainly head down due to lack of feeling in my left leg. I find visually knowing where it is helps. Also in the past when stressed I have found it harder to walk. The only explanation I got was " it's due to stress" yep great help that was.
The best advice I have been given to help calm down ( it doesn't always work). Is to find a place you feel safe and calm and imagine your there.
Yes it sounds a bit new age but once you can do this it does help. It does take practice but speeds calming down a lot.
Having said that I suffer airports badly and resort to medication to help. As for other situations my safe place is enough should l start panicking.
Hope this helps and as for the rude people ....forget them they are not important.
Thankyou Pax, nice to know it’s not just us going crazy on the ferry. Will certainly try to imagine a safe place. Do you close your eyes? What sort of safe place. ? At home reading kindle or a favourite beauty spot?
Yep were all crazy. Try the safe place and practice when you can. If closing your eyes helps and is practical then yes. As for the type of safe place it can be anywhere that you felt relaxed and obviously safe.
Mine is a cafe on top of Monsel Head on a sunny day.....It's heaven especially with tea and cake.
I get something like this down the right leg moving into the foot which feels as though it is trying to force its way into the ground becoming almost pneumatic, this can be so strong as to make me fall, it seems to happen when the brain has more to deal with, turning etc, I have some spasticity in the foot and this seems to increase. I sit down if possible and it passes leaving me rather shaken.
Hi Fredikins, that sounds very painful. Not always somewhere to sit when you need it, but I sometimes take a folding stool if we anticipate problems.
Thanks for taking trouble to reply. Learn so much on here.
Best wishes
Hi,
When I was having a really tough time accepting that your brain/body doesn't function consistently after a brain injury, I was told something that helped me.
Apparently your brain builds up new pathways to work around the damaged ones so you start to see improvements as it uses these workarounds to help you to function.
However when the damaged brain becomes fatigued or over stimulated or simply tired from managing physical activity then it starts to prioritise functionality, in much the same way that your body prioritises blood flow to your organs when it's cold.
So at these times things that have started working again can stop temporarily whilst the brain prioritises a different activity.
An undamaged brain would be able to do all at once, but the damaged brain can't always keep up.
Eg. If a leg has been damaged, or the neural pathways controlling the leg have been damaged, then on a good day it may function well after a few months (or years), on a bad day it may drag, and in a particularly bad moment it may stop.
All problems are usually more visible later in the day, or when fatigued or in pain, or noise issues etc, whether they are word finding difficulties, the ability to process information, or move limbs.
All that said, I went for another MRI a few months ago to rule out other potential causes when new symptoms appeared, so would always talk to your neurologist!
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Ps. Get him to try rubbing or gently slapping or pinching the leg when it temporarily 'disappears' - it helps the brain relocate the limb - doesn't always work - but sometimes does!
this may sound funny but for rough and uneven ground i walk sideways like a crab, when i walk up a hill i lean into the hill.
crowds and noisy situations for me can be a problem and i have been known to be abusive, although i dont remember what ive said, so unless its really necessary, i stay away from these situations.
i too suffer from fatigue and lethargy. my bi was due to a stroke 61/2 years ago.
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Looking for help - new to all this
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