Front Lobe Damage

[kandy0616]

Hey guys. Question here for front lobe damage. My partner had a motorbike accident 6months ago suffering from tbi, sci, and had another accident whilst in hospital which has caused more damage in the front lobe. Before the accident he was really improving not 100% but finally understood why hes in hospital, why cant move and understands the changes and things he'd had to give up ie smoking, eating and drinking (when he swallows, hes at risk of aspirating) and was so up for the physio and getting involved in everything they asked him to. After the fall, it was like starting all over again, this time with paranoia , refusing personal care, not understanding where he is or whats happened, he sometimes understands he had an accident, but not fully enough to understand why hes in hospital for the accident hes told me hes been all sorts of places and when talking he uses the wrong words in the wrong context and when he talks he goes on and on not really making any sense and hes memory is so bad since hes damaged his front lobes

my question will this get better? the physios told us to prepare for this might be how hes going to be forever, i still have hope of course and he still hasn't gone to a neuro rehab yet (delayed after the second accident)Will it ever improve? Can i do anything to help

[Crazychickangel]

Hi Kandy, so sorry to hear what your partner is going through. I have right frontal lobe damage from a brain infection in 2020. I have memory issues, I don't recognise my surroundings so can't go out alone. I can watch a film over and over and its like I'm watching it for the 1st time everytime. I have left side of body twitching and numbness and I now have eplisey, super light and noise sensitive. I do also struggle with word finding especially when tired. Just be patient. He will get frustrated that he doesnt remember things and gets tired doing very little, and even after 2 years acceptance that this is my new normal is hard. All the best wishes for his recovery.

[kandy0616 in reply to Crazychickangel]

im so sorry to hear that! thanks so much for taking the time to write back. i hope you have all the support you can get. did you end up going to a neuro rehab and if so do you think it improved than before rehab?

[Crazychickangel in reply to kandy0616]

I got put on a waiting list to start rehab and cognitive testing and assessments. They started 11 months after I left hospital and 7 lots of 2 hour assessments to show where weakness are to address in essentially like counselling sessions all via teams. I spent most of my time crying through them tbh. They try to give you coping strategies but I didnt find it very helpful and you find your own ways of coping. As and when things arise. Wishing you lots of luck

[kandy0616 in reply to Crazychickangel]

i have heard of a brilliant book called 'The Brain Injury Workbook' by Trevor Powell, it is quite expensive but the reviews are life changing. have a look its quite expensive but it has rehabilitation excersies for cognitive problems. Hope that helps better than the stragies theve given youWishing you my best

[BG1991 in reply to Crazychickangel]

yep!! The film thing is so strange I know I’ve watched a film by recognising the front cover, but cannot for the life of me remember what has happened and it’s like watching it for the first time!! I had a large haemorrhage on right temporal lobe, and part of it removed via craniotomy. I also suffer with left sided weakness and memory issues, and also terrible mood swings, and certain lights effect me to. Especially on a overcast but bright day can trigger migraines, which I now get a lot!

[Sontypops]

Hi Kandy my wife had a brain haemorrhage in December 2019 and as a result has frontal lobe damage. She spent 11 months in hospital/rehab and is now home and I am her full time carer. I am telling you this as having been through the experience over the last 2 1/2 years i can tell you it is a steep learning curve ! from my experience

1. The brain damage will be permanent . It is possible for the brain to make new pathways but will not repair.

2. Google Confabulation - it is when a person makes up stories as they can't remember what has actually gone on. My wife still does this.

3. Try and get specialist rehab neuro care - we were lucky Sonia was under Addenbrookes in Cambridge and they managed to get her medication right so she is now no longer so scared/paranoid/aggressive (although this still happens).

4. His mobility will probably be affected for ever although physio will help.

5. You have to be prepared to accept that he may never make new memories. Sonia lives 'in the moment ' so we can chat, laugh etc she just can't remember it even shortly after.

My biggest tip is to be his Advocate in all situations especially medical - some Doctors don't really get brain injuries and believe what is said even when you know it is nonsense as the patient can be so plausible.

I really hope that the brain damage is not as bad as first thought as sometimes the first few months can be the worst and everyone is different. Wishing you all the best.

[Skallagrigg in reply to Sontypops]

Yep my 29 Yr old son is the same 18 months on, .try counselling for yourself and talk to others similar, I have no answers but knowing others are the same and may have little tips on coping strategies does help

[Shushy in reply to Sontypops]

Hi . My husband had his injury in 1989. I can fully agree with the last two replies and actually I have a sense of relief that others are experiencing the same! Some things do get better - I don’t know if it’s partly because we accept the ‘new norm’ or if there are some actual physical improvements.. Living in the moment is great advice. Get as much support as you can - ‘friends’ can disappear very quickly - and make sure you have some time for yourself. Don’t read loads of stuff on line, as they often end up making you feel worse. Take your advice from the professionals working with you both. Make sure everything (equipment, ongoing care arrangements, support networks)is in place before he comes home and it it is appropriate get a good solicitor who specialises in head injuries.

Stay safe

[kandy0616 in reply to Sontypops]

im ever so sorry to hear that. she is lucky to have you who has supported her through the toughest time in hospital. his mobility is more damaged from his spinal cord injury, the phsyios that assesed his said it was more neurological damage, personality change, mood swings confusion making things up etc. Would you say she improved after the rehab? thanks for taking the time to respond to me,

[Sontypops in reply to kandy0616]

Hello she did improve after rehab both physically (she now uses a frame) and in her mood - the correct medication can be key. A Consultant told me that you usually cannot measure improvement on a daily basis but perhaps on a monthly measure. Due to Covid i did not see her for 4 months and did see an improvement when I did. She asks me all the time what has happened to her and has no recollection of being in hospital etc its also difficult to know what she does remember from the past (except childhood) as it depends on how the question is phrased. One thing that has been useful is the technique of distraction - when she gets upset/angry I just change the subject and her mood passes as she can't remember why she was upset/angry ! It is a new normal for us and will be for you. Don't be afraid to be upset - they say it is a form of grieving for the life you thought you would have.

[Exhaust]

Living with brain injury is tough , really tough for everyone involved and its the new forever . As written in previous replies there is no cure but with the right support , lots of patients, hard work and determination you will see improvements at times miniscule . I keep a diary so I can look back and compare . Also you need to be assertive , pushy and sometimes rude to receive the right medical support , good therapists ( ot , speech and language , neuropsychology and physio ) can make such a difference but finding the right people can be near on impossible and incredibly expensive . If your entitled to private funding (or not ) you need to fight for the best . Help is out there . Keep strong

[kandy0616 in reply to Exhaust]

thanks for taking the time to respond. im just finding it hard to explain to him in a way for him to understand whats happened to him. will they eventually ever understand they have brain damage?

[Exhaust in reply to kandy0616]

My daughter has a tbi shes 27 ( was involved in a rta 4 yrs ago ) she doesn't understand how different she is , thinks she's the same person she was before . She is very happy and luckily totally mobile but for everyone else its ground hog day , every single day is the same she repeats the same conversations over and over . But they're are improvents so be it small and apparently ; improvements , changes happen all the time . Im happy to chat anytime . The biggest support for me is talking to people in the same boat as no one else really understands

[Paulswife]

Hi, my husband had front lobe damage after his SAH. He has been tested by the neurologist and they have confirmed that his short term memory is affected. It has severely affected his working memory, so your brain is like a white board, you think of something then it stays there and you either act on it or will remember to act on it. He doesn’t, his is at 5% so he will think of something, then it is gone. His executive skills are also affected, planning, initiation, fixation, lack of financial skills, wouldn’t compare prices etc, unable to manage home finances, anger, personality changes, no filter between what he thinks and says, fatigue, shouting, lack of concentration, thinks there is nothing wrong with him, not able to read social situations, inappropriate, no patience even with children, self absorbed not really thinking of anyone else until he is ok. In the beginning he didn’t think there was anything wrong with himself and has the gift of the gab but then would struggle to go through with tasks or promises that he had made. We were told the only way for him to realise the extent was for him to do things and fail. This has been really difficult but he does have more awareness of his issues but not the full extent.

[Paulswife]

Sorry meant to say when first happened with my husband for the first 5 months he too didn’t know what had happened to him and couldn’t understand where he was and why he was there in rehab. Repetition of saying what had happened and signs on the wall to explain to him and getting him to write a first every day helped. Wishing your partner a good recovery.

[Elkay_1954]

Stay strong and positive if you can because it is VERY early days for you still. Every brain injury is different and recovery journey times vary tremendously. Three steps forward, two steps back can be quite normal. Eight years in from my son’s car crash and he is still relearning. He is getting his life back. He will never be exactly the same as he was before but the brain is amazing in the way it finds new ways to do things. Lynne. X