Hi, I first looked at the Headway site 2 1/2 years ago, 5 months after my son (aged 17 at the time) sustained a BI from a cycling accident. I didn't feel able to contribute then (to upsetting) but do now. To say the last 3 years have been hard work is an understatement. I am a single parent with no family that live close by. Great supportive friends......but I don't think they really understand the ongoing impact a BI has on family life. My eldest (with the BI) is now 20, my youngest is now 16. My son has made reasonably good progress in 3 years but still struggles with things. I still cry frequently and still have mixed emotions with it all. Anyway, I just wanted to say if any parents in similar situations want to chat and share experiences I would be more than willing to do so x
Son with BI: Hi, I first looked at the Headway site... - Headway
Son with BI
I've just realised I've posted it in the 'profile' bit and the posting bit haha ......oh well it is late!!!
sunflower2 look up your nearest headway group and get yourself along there , get advice from people whove had a bi and like my wife those who support us .
your not alone, youll be made welcome and therell always be someone at the end of the phone to chat to. then of course if youre really desperate.........theres us!!!
I have a BI, so no use for a same-boat chat I'm afraid. BUT we're all too aware of how frustrating it must be; we/the situation do our own heads in...! Have you tried the local Headway to check for a Carers Group or similar? If they don't have one, then give 'em a good nudge in that direction - something the NHS or it's partners should promote a lot more, that's for sure. Without your patience and support the BI outcomes would be much less positive. Thank you x
Hi Sunflower. My own son had a brain injury in November 2013 so we are a similar time into this situation. Would be good to swop notes! Can I pm my number to you? X
Hello
My son aged eighteen had a cardiac arrest last July resulting in a brain injury, he comes out of rehab next Friday. We have been devastated with what's happened he was due to go to university this year but that will not happen. We have good days and bad but feel so helpless and angry. It's just not fair. I know how you feel.
My heart goes out to you and your uninaginable situation. I hope you find the support you need. x
So sorry you all are having to go through this. I certainly relate and am still creating my new life post brain injury (Dec 2013). There have been many forced changes due to changed abilities. Most of which I have fought all the way, not wanting to have to change the way I used to live life and do things. I have started to accept some of the changes, although I still don't like having to do it. Well maybe I haven't accepted them yet, based on my comment. Haha. Anyway I have tried many therapies and methods to help me create my new life. Right now I am doing some specific breathing therapy that Dr Buteyko developed over many years. I am noticing some improvements after only a couple of weeks. My sensitivity to bright lights, sounds and movement seem to be better. His basic thing is that we breath too much oxygen, which causes us to have low carbon dioxide levels. The reason that is a problem is because a certain level of carbon dioxide needs to be present in order to get the oxygen into the cells and this doesn't happen when the carbon dioxide levels are too low. Anyway it may be worth a look into. Best wishes to you.
Reading this thread causes me great distress and anguish. My daughter is 24 and hasn't yet passed the one year mark so it's all very raw. Like sunflower2, I have no family in the country, let alone the local area.
My husband is great with my daughter but is otherwise off in his own work world and thoughts. I have an elder daughter who lives independently whom I rarely see due to her work and social life.
My most supportive friends live abroad and the friends I have here, unless they have first-hand knowledge of BI, can't begin to understand. All in all I feel very isolated. I can so relate to the crying and the mixed emotions.
My local Headway branch is hoping to have regular carer's group meetings. I went along to the first one and am planning to attend another in May. I have also arranged for someone from adult care services to visit me next week to discuss my role as carer. It's a start, at least.
I've been doing lots of reading and came across a blog written by a young BI survivor. You might take heart, Jane, that this brave young man despite his BI and pre-existing epilepsy managed to attend university quite soon after receiving his injury.
So many young lives "lost" due to BI. My paramedic daughter was 24 when she suffered a TBI on way home from work. Progression is so slow and I dont think there is a day goes by when I dont mourn the Niki that was even though I love and cherish the Niki that is. Two years down the line she still has no speech but can communicate in various ways and her walking around the house supported is improving but I fear she will always be in the wheelchair. As everyone has said noone but parents really feel the devastation and loss but I am lucky with family and friends and her carers. I hope you can find people to help you as its such a hard road and I cant imagine how you get through on your own. I send you all my love
Kath
Thankyou Kath, It can be hard at times but what else can you do but get on with it. I hope your daughter makes good progress and in time a good recovery.
xx
Thankyou all so much for your kind words. I sometimes feel bad for feeling so down/upset and angry, as there seems to be people in much worse situations than us. It is hard and we have good days and bad days but although it is/has been slow progress, it is there, and I just try to keep focusing on that. love to you all x
D' you know what Sunflower ; I would have much less acceptance of BI if it were my son or daughter with the injury rather than me. There's nothing more painful for me than seeing one of mine struggling.
So never hesitate to offload your feelings here. What you've been through over the past three years doesn't bear thinking about and, as a lone parent myself, I know how precious your boys are to you, and I'm truly sorry for the heartache you've been dealt.
I see that others in situations similar to yours are ready to share their feelings with you so I hope you'll find comfort here m'dear.
Just wanted to wish you well. Love Cat x
Unbelievable really how many people are in similar situations. I wish I'd had the strength to talk to people 3 years ago. Thankyou for your kind words, it means alot xx
Hi, my son was assaulted a year ago and suffered a split artery and a massive bleed in his head, he has been left with brain damage. To look at him you would think that nothing has changed, apart from the scarring and he has lost his sparkle. However his and our lives have changed dramatically. I have night terrors and cry for the son I have lost. His grandparents say that the night it happened their grandson that they knew died and they got a new grandson, that they still love regardless. If you ever need to chat I am here for you. Take care x
Its awful how life can change in a second or less Sambo. X
Thankyou. Its so true about having a 'new' person, but initially incredibly difficult to accept that. Most of my friends say my son has "made a great recovery" and cant see the lasting impact his brain injury has had, but unless you live with it, I guess you cant see it. Reading through all the posts, its awful how many lives are affected by brain injuries.
xx
That's exactly it, people see him walking around and think that everything is ok ...far from it! x
Hi Sunflower, on reading the posts here I am so pleased you managed to post what you have been feeling as this is your first step to helping yourself with your son. My wife has found it invaluable talking to headway and the councillors there although I'm much better now than I was. Talk care and well done. Nick XX
Thankyou Nick, Its taken a long time to accept and be able to talk about it without breaking down into tears but were getting there. Glad your recovery is progressing well.
xx
Thank you. Its been a while and I'm getting there. Had a fantastic days riding yesterday and at the same track where it all started so all good. Have a peaceful Sunday evening. Nick. X
Hi. I had a TBI in 2005, when I fell off my bike in France.
Someone told me in the first year or so that all my improvement would happen in the first year or so. It hasn't worked that way. I am happy to say that I am still improving - very slowly, but it is still happening. My in-laws and my parents, who don't see me for months at a time, say they still see improvements.
I went back to work after 18 months, although I still have some balance issues (although they are hardly there, now), and I am 'blind' - it is in quotes, because I am officially blind, but I live normally, except I certainly can't drive, but I can see fine for most things.
hey. im officially blind too. I found out about this project thing at UCl where they use scrolling text to help yoy rewire yor vision. initially I couldn't see any detail at all so stu like putting on make up often resulted in almost poking my eye out with my mascara. after doing 20 mins on the site a day for a while not only cani do me slap, bot I'm also reading again!!!. ok its nowhere near where it used to be and sometimes I have to restart a book because I kinda forget what happening but I can do it. and the forgetting is my own damn fault for not practicing enough. I assume you are cortically blind also. my mate is a doctor of biology. and he put it like this, your brain is like a city and theres been a terrible earthquake. yes lots of roads are buggeredand bridges have come down, but in time, with a bit of effort and lots of stimulation new roads can and will be built. I was in a rehab place and they told us whats gone can never be got back. bullshit!!! things can be salvaged, but theycertainly wont be if you give up be cause a dr tells you it cant happen. its amazing that drs still know so little about bi and yet still are happy to tell you stuff like its the gospel tru th. any hows it cant hurt to give the site a go. ill ask the bloke to put up a hyperlink. me hating computers is not a new thig btw never trusted th little bstds.
wow bloke just told me that you used to work in the office next door to him!! small world. if you get a chance say hi to adam LeG from chemistry for me - he was my supervisor when I worked there too!
must be some thing water down there...
em.
Ooh, I'm intrigued, what were you doing at KU? I'm a lecturer, in geology. I used to do lots of research with a spectrometer, using lasers, but I'm not allowed, anymore. Well, I can't be trusted alone with it.
Also, do you live nearby? I'm in Walton-on-Thames.
How did you get your BI?
Sorry, but you've made me all nosy, now!
long story short, had crohns flare up, got v low pottasiun, wento hosp, dropped dead, clinically at least.hadno output for 26 mins. induced coma for a couple of days then my own proper coma for good bit longer. bout a month or so I think. terrible spasticy for a bit, LOTS of screaming , sthouting, swearing.(apparently I said the c word in front of my mum in lawAHAHA) had no control over any bodily functions for good half year or so. hands and oams locked in funky positions , amagine tensing every muscle all the timefor well over half a ye and then think how owey it when physios try to release them .
personally I found it was wrse when I came out of hosp. that's when my daughter/son left home, father stoppppd talking to to me. I think also it finally began to dawn on me that nothing would ever be the same again. for ages while in hosp I was telling folk how I WOULD finish my phd' and I WOULD drive and teach again. well, however much Imight want these things ,I suspect the potential people that I might run down or children whose education I might bugger up wold have v different opinions.
re my research , it was funded by GSK and to do with DOSY NMR. the work has been published in some journal somewhere.
hey, how much does thiss suck ? even rhigh I worke for better part of a year AND got published, I cant even get an MSc because I cat do a viva and explain/defend it. also, be cause I had a grant, not actual work, any money I had just stopped when I did. wahwahwahboo hoo
I live in Lincolnshire now. dint wanna be so close to my old life(which I LOVED) that I coukd no longer have and thought it would be easier if I never saw me kid/dad/sis if I lived a couple of hundred miles away. (as opposed to literally ten min walk away it wasn't initially but it does seem so a bit more now
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