Astonishing improvement after almost 3 years - Headway

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Astonishing improvement after almost 3 years

BobinTewks
BobinTewks

It will be 3 years in February that my boyfriend had his TBI. I've just read the post I put on here around that time and the replies I received. Just having a place to air my thoughts at the time and to communicate with other people that had already gone through similar experiences really helped me.

So I wanted to put an update to share with you how things can improve, even after such a long time.

My boyfriend, Michael, is still being cared for in a neurological rehabilitation centre, where he has been for almost 2 years. Since his accident we have had almost no communication from him. He had very little movement and is still being peg feed. We've had the various milestones, where he would nod, shake his head, follow us with his eyes, smile. But then about 2-3 months ago we started to get some words, movement in one arm and leg. Since then he has come on so much that I find it hard to believe and I keep looking back at videos I've taken and the dates they were taken to remind me of the difference.

When I now visit he says "hello, how are you" - I give him a hug and he puts his arm around me and hugs me back. He tells me he loves me and sometimes chuckles when I make a joke. At lunch time I wheel him into one of the communal lounges and watch as he feeds himself some lunch. When the staff pass us and say hello to him, he says "hello" back.

I learned at the very beginning of this journey that with brain injury everyone is unique and no one really knows what will happen but a lot of people told me that once it gets to about 2 years, "that's it" - well I'm glad to say that in Michaels case, it wasn't.

I may get my wish of being able to take him back to Southmead Hospital and then to the Brian Injury Rehabilitation Unit (BIRU) in Bristol to say "Thank you" to all of those doctors, nurses, therapist and careers that saved his life and took care of him.

21 Replies
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Hidden
Hidden

Never give up on Michael, I was paralysed for four years and living in a chair after a rta. It took a long time to get back to whatever people call normal. If you see me you would not notice a disability. I have learned to walk and talk again. Michael is in there and he will find his way again when he is ready. Good luck 🤗 🌷

BobinTewks
BobinTewks in reply to Hidden

Thank you Minty, it's so reassuring to here other people's success stories.

We have a review meeting with the professor in a couple of weeks time. I'm quite excited to hear what he has to say about Michaels progress.

Hidden
Hidden in reply to BobinTewks

Please keep me informed either here or pm me.

Michael is in there but scrambled and just needed a defrag.m

My own recollection is I was so frustrated, cross, call it what you will as people were running my life and I could not communicate to express myself

Wow, that's fantastic to hear. 🤗

The two year timeline is a strange benchmark. It's almost as if something is supposed to happen on that very date. Truth is, as with anything, it's a compound of small, daily improvements.

Keep smiling.

Hidden
Hidden in reply to Teynboy

I am not sure where they get the two year bench mark from. I drive a car and can do most things. Spent a year at the patty shelboirne clinic at Eastwood Notts which helped me. We have retrained my brain and body but I still cannot type the letter N in a word, I know I have many typos and can go back some do g ages correcting g. Yes that’s my normal typing but I know what I mean

Teynboy
Teynboy in reply to Hidden

Indeed. Probably an average of something that someone calculated years ago.

That's interesting with the letter N. It shows how complex and strange our brains are.

One of my most amusing is the lack of instantly recognising the male/female signs on public toilets. Thankfully I always double check before entering.

Ironically I fell and sustained my TBI in a toilet cubicle too.

Hidden
Hidden in reply to Teynboy

I did one better I walked straight past my wife as did not recognise her at the time. Best thing that I ever did lol

Teynboy
Teynboy in reply to Hidden

Oh dear 🤣

BobinTewks
BobinTewks in reply to Teynboy

Thank you for your reply. Today was another milestone - I put my mobile in front of Michael and he typed a birthday message to one of his friends!!!! If you would have told me he'd be able to do that, even just 2 months ago I would just not thought it possible. I have to pinch myself so many times just lately - for all good reasons.

Feeling good.

Teynboy
Teynboy in reply to BobinTewks

Oh wow, what a wonderful milestone. Sometimes it's the small achievements that are the biggest victories ❤️

Hiya, 25 years later, I'm still making improvements (not quite as big improvements as I originally did, obviously, but little things & I'm sure I will continue.

Stace Xxx

:-) Excellent news!

AWESOME! So happy for both of you. So great for the progress being made. For me I'm 6 years post injury and I feel I still continue to make improvements. So I think the two year limit simply isn't true.

Fantastic news 😁 He is evidence that improvement happens beyond their suggested time frame. X

Great to hear all this. Gives me some hope after almost 2 years.

Just wondering is it really improving or more due to learning to cope better with everything ? Or maybe a combination?🤔

I have learned a lot a valuable lessons in these last 2 years. Just like everyone with bi. Some lessons keep repeating though😜

Happy 2020 everyone.

Hi Im so pleased to hear your boyfriend is still improving, its amazing how the brain works. That is such a long time for you all, it must be so hard.

Im struggling 4 months after my husbands BI, he has recently left ICU and is currently on a Stroke ward, awaiting Neuro Rehab. Im so pleased to have found this group. I felt so alone. Take care and I hope he continues his amazing recovery.

BobinTewks
BobinTewks in reply to Apesfut

Hi, thank you so much for your message. I'm sorry for not responding before, I don't get notification that someone has made a comment on my thread on this site. I'm not sure if you can? So it's only when I remember to log on that I see the messages - and with trips to the rehab everyday you do tend to forget.

I'm sorry to hear about your husbands accident. I just had a look at your messages and I see that you are thinking of attending support group meetings at your local Headway. I would definitely do that.

My experience with Headway started when I searched brain injury on Google to try and find out what was going on, probably within days of Michaels accident. I found the Headway site and made contact. I then was supported by a lady from the Bristol office that attended Southmead hospital. She was great, at a time when everything seems bewildering.

When Michael was moved to Gloucestershire I made contact with Gloucester Headway office and I was regularly emailed invites to the support group - I never went. I was nervous and didn't feel comfortable to go. That was for over 2 years, then just before Xmas I made contact and went to my 1st meeting (they are held every 2 months). It was a small group - they did say the size varies. It really helped me to hear from other people that have gone through what I'm going through. Everyone was very supportive and I was made to feel at ease. I am looking forward to the next one in February.

You may already do this but if not then I would recommend keeping a diary. I still fill in the diary every time I see Michael - we are now on our 4th diary and they are all full. I find it helps me when I write about all the little (and big) things that have happened. Todays entry was about how Michael played dominoes with one of his therapists - and beat her !!!!! I took a video to send to his family as I'm sure they won't believe me, lol.

6 months ago I believed that I would never have Michael back home living together again - now we are making plans for that to happen - possibly this year.

So, stay strong - good things can happen xx

Hidden
Hidden in reply to BobinTewks

You can get emails when someone replies. Go to settings/notifications. Then you just need to get notifications of emails. 🙂

Apesfut
Apesfut in reply to BobinTewks

Hi Bobin. No problem its ok. Its great to hear you are making plans for Michael coming home. Im definately going to go to the groups, its helping me already just chatting to everyone on here. Take care A x

Hidden
Hidden

Thank you for posting BobinTewks. That is so encouraging! We are coming up to the first anniversary of my wife's stroke and fortunately she has regained a lot and is pretty independent but progress has slowed. Your story encourages me. Maybe one day we will even dance together again!

BobinTewks
BobinTewks in reply to Hidden

That's a great goal to have - I really hope you do, my fingers are crossed for you.

The professor that looks after Michael felt that he had the capacity to do more and communicate a while ago but was choosing not too. I feel that they need to be determined to get better and improve. So I am constantly encouraging Michael and talk about the goals that "we've" set.

I don't think they can get enough of hugs, kisses and positive, happy faces. Plus I love them too.

😁 💕

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