Axonal Diffuse Injury

[Holyjo]

My son , aged 17 had an off road motor cycle accident one month ago. He was in an induced coma for about ten days. When sedation was stopped he came around within two to three days , at first slowly and then with some speed. He is now able to form small sentences , and hold a small conversation. His right side works reasonable well with arm control (he can shower himself sitting down) hold a cup , shake hands, high five etc. He can just about stand , with a lot of help and it exhausts him. He has his sense of humour, recognises his friends and family and tells us he loves us...... We are told by the nurses and neuro consultants that his recovery speed is highly encouraging and unusual. Given the potential prognosis three weeks ago we feel truly blessed even though we are clear the road ahead will not be easy. A couple of questions though

He is aware he is in hospital , but not seemingly aware of his brain injury. Since talking a few days ago he keeps asking me "come on Dad lets go home" ...." I am bored , lets go". We are told this is not unusual in brain injury patients. Has anyone else experienced this ?

We live in NW Kent. Is anyone aware of a good lively support group in SE London / Kent , or a virtual community support. I am SKYPE savvy....

Finally , I guess like all of you on here I have my down days. Are there any links to good news stories. I am interested to read of others experiences of recovery etc.

Thanks in advance....

[bikerlifestyle]

when you say not aware of his brain injury do you mean he's not aware of the symptoms of the brain injury or do you mean he's not aware that he has a brain injury?

[Holyjo]

Thats a very good question - I think it is the latter. i.e. When he was being retrained to eat yesterday he recognised that it was hard to swallow and that he needed to take his time. He recognises that he finds his left side harder to use and that he needs to practice.

So I think he doesn't seem aware that he has a brain injury............I am guessing that someone might ask whether we have told him. We have told him about the accident but I don't think I have been very clear about the "brain injury " side of things.

[bikerlifestyle in reply to Holyjo]

personally I think honesty is the best policy, just explain it simply without going into full details unless he asks

I would have appreciated a bit more honesty in my early days as well

try not to step on eggshells around him, as this will just make things harder

it might be worth asking him how he understands the brain injury and then you can then deal with any questions as the arise

[cat3]

I remember nothing of my first month in hospital but learned later that I had responded to repeated questions from the moment of admission. i.e. "Where are you?" (Salford Royal) "Why are you here?" (I've had a brain haemorrhage) So it was their policy to reinforce the facts from the outset, even if the patient wasn't ready to respond.

I was, however, quite confused for that first month in other respects......thinking my daughter was a neighbour and falling on the floor believing I could walk.

But I've never suffered with resentment or after-shocks owing to (I believe) knowing the truth from the word Go.

I hope your son continues to improve and that he adapts to his situation.

Best wishes cat

[gabimou]

There are a lot of things I can't remember in the first few weeks but I do re call the tests they do on you all the time like cat said 'where are you" and "what day is it" thinking why are you asking me these questions.

I thought I was doing ok it wasn't till friends told me otherwise in those first few weeks this is when the truth came out so I believe honesty is the best policy.

[Hidden]

Hi holyjo, I am much older than your 17 year old son, but can relate to everything you say in your blog.

If you haven't already you can click on user names to read individual stories, if they've written one. And if you click on directory at the top of the page you can find people who live near you to see if anyone local to you can help. Headway offer a Free helpline 0808 800 2244 for a private chat and will answer any questions you or your family may have and will throw in question you may not have thought about. They offer advice and support and point you in the right direction.

(When something happens to our nearest and dearest we need professional help from people who know what they are talking about to stop us guessing, not knowing...and often coming up with the wrong answer. Headway helpline helped me/us lots )

I didn't recognise I had a brain injury until 2 years after my brain haemorrhage.... It's a long story, but If I knew now 5 years ago (whatever age) it would have helped lots. If you feel it would help to talk I am Skype and FaceTime savvy too. If you do wish to chat private message back

I do agree with honesty is the best policy.......everyone was honest with me...but it's hard to explain because I thought I got it and I didn't.... reading the book

Touching-Distance-by-James-Cracknell and BeverleyTurner helped me and my family a lot.

It's a good read for parents, partners, family, friends and the patient. You can skip all the athlete stuff if you wish and go straight to the chapter after the accident and read a perspective from both sides.......It's amazing how different they saw things, but that's very much how our story was.......

Best wishes to you all.... Take care

[Bards]

Very, very early days for you and son in this regard... my self-awareness from an ADI was severely compromised (pretty well non-existant) in Early Recovery, so it's far from unique. From family accounts my performance now sounds in places comical, though at the time it must have been very painful for the witnesses... very hard for the carers.

From my experience it may take time and repeated rather unsettling lessons learned before he becomes aware of the changes wrought, and how extended the period of recovery can be. As with an ADI his memory is likely to be affected in addition to self-awareness, simply being informed of the situation is unlikely to be enough; he may confront repeated hurdles rather than avoiding them. The two steps forward, one step back determined approach may lead to frustration for all, but does seem to be the way for many ADI sufferers.

My very, very best wishes x

[Holyjo in reply to Bards]

Would you say you had fully recovered from your ADI or describe your recovery differently.

[Bards]

I don't think there's any such thing as a Full Recovery from a severe injury. I now appear perfectly normal for the most part to people I meet, but those who knew me before can see changes still. With this injury a reduced mental stamina at the very least is more or less a given from what I've gathered.

That may not sound cheery, but once I grew into the updated me (same operating system, different CPU to use a computer analogy) I'm perfectly happy with it. 'Changed, but no lesser person' took me about 3 years to feel deeply I reckon. First-hand accounts such as James Cracknell's (also one by Claudia whatshername, an American medical Dr who had a head injury) offer good insight into rehab progression.

Sorry if that was more of a reply than you required, but please feel free to contact me any time you like. There are a whole bunch of pages to unfold.

Bards

[Bards]

Claudia Osborn is her name - 'Over My Head' is the book. It was trying to follow a book or even a film plot with ad breaks that really brought home my memory issues (now much improved). Whether that proves to be the case with your son it would be interesting to know

Bards

[ZP1980]

Hi I've just found out my husband has this injury following an RTA please could you give me any information? x