Press article on TBI

[Aelfwyn]

Erm, feeling a wee bit self-conscious here, but I thought it might be helpful to share this article with you. It's about long-term consequences of a 'minor' brain injury, and how they can so easily be overlooked or misunderstood by doctors and the rest of us. It was published in the Daily Mail last week - and it's about me! So please be gentle!

dailymail.co.uk/health/arti...

I did this interview in conjunction with Headway, in order to try to raise awareness of the issue. Only a few hours after it was published, someone phoned Headway for help as a direct result of reading the article. I always said that if talking about my experience in public could help even one other person, it would be worthwhile; so I'm pleased about that. Perhaps there will be others. Quite a lot of people contacted me with their own stories after seeing it.

From reading people's posts and comments on this forum, I know that a lot of you might recognise the sort of symptoms I describe and have had similar experiences. It is interesting to read what the neurologist and neuropsychologist say in this article. The more we share our experiences, the more people will understand and know that they are not alone.

[Danslatete]

Great article. It seems a wrong name for the level of difficulty people suffer from mild head injury . Do you have any residual effects now?

I get tired if I do more than is usual on any day and need to sleep till my brain says its doing ok. If I'm ill I need mor sleep and my concentration is pants. If I get very emotional like angry or sad or laughing. Lot , I get very tired and my speech suffers and I need to sleep then too.

I wonde how hey decide what makes mild moderate different and where they mark the low end of moderate and high end o low?!

Not sure what I was classed as bu I was a diffuse injury.

[Aelfwyn in reply to Danslatete]

Thanks. I agree with you on the problem of classifying these injuries. I know I'm lucky and that other people have suffered catastrophic injuries, but I also know that it felt anything but 'minor' at the time and for months afterwards! I guess that's partly the point that the article was trying to make: that 'minor' injuries can in fact have 'major' impacts on our lives.

I still have residual effects, yes. They sound a bit like yours. Bright lights, flickering lights, sudden noises, too many stimuli, multi-tasking, night driving...all difficult to deal with. They leave me stuttering and exhausted. I don't feel confident in organising and forward planning any more, and my memory feels full of little holes. My husband notices the difference. It's a 'new normal', as the article says. But I am really lucky to have got back to a normal life at all. Some people don't have that opportunity. Thank God I was wearing a helmet.

[sospan]

Good article and the journalist presented it with sensationalising the injury or the lack of treatment but presented it in an informative way.

My circumstances are similar, I used to work away and fell whilst I was in work on a Tuesday. I didn't get seen by anyone other than a first aider. Apparently, I travelled to my hotel and work for the following few days in dazed state. I have no recollection of doing this. It was only when my wife saw me on the Friday morning with two black eyes and a bump on my head was I taken to my GP.

This is the funny bit besides having the two panda eyes, bump on my head, being confused and couldn't stand up straight because I was dizzy and the lights dazzled me - he thought it may be related to having my 50th birthday and maybe I was depressed!! He is rather sheepish now when I remind him

[Aelfwyn in reply to sospan]

Thanks, sospan. Yes, the journalist did a good job.

I had to laugh at your GP thinking your two black eyes etc. were caused by depression! It's amazing what people can overlook - including us patients. I can relate to your going back to work and trying to carry on as normal. We're just hard-wired not to make a fuss, I guess. But sometimes that can work against us, as we actually need to make a fuss in order to get the injury recognised and appropriately treated.

[sospan in reply to Aelfwyn]

Thanks, I also had a high powered job (IT). I guess much like yourself returning to skiing after your injury not wanting to ruin it for yourself, I stayed on at work not to let the team down - although I can't remember it.

One of the things that I have found and has been repeated to me as well is that "Type A" personalities or high achievers seem to fair worse in terms of head injury especially in terms of acceptance

[Aelfwyn in reply to sospan]

That's interesting about Type A personalities. I don't think of myself as Type A at all - at least, not any more, maybe I tried to be in my 20s - but I certainly found it a struggle to accept the changes caused by brain injury. For a while I was in quite a dark place with it all. Glad to say that I am (usually!) much more relaxed about it these days, having come to terms with the changes. How about you?

[sospan in reply to Aelfwyn]

Phd and a headhunter! I have met a lot of headhuters - and you are definitely driven

I am getting used to it but I still have a gap in acceptance of knowing how to mend myself - if you break a bone, you wear a cast, you have some physio and then you are 90% back to where you used to be. However, the brain can't be fixed in the same way and it frustrates me to think it can't

[Kirk5w7]

What's sad it is worries us that we lose that "A" classification, it doesn't worry me so much cos I've finished my career just 2 years away from retirement but I hate that look I get when I have trouble articulating properly!!!! I'm sure you know the onexxxx Good luck with your recoveries, I know you'll do well. Janet

[Aelfwyn in reply to Kirk5w7]

Thank you, Janet. Oh yes, I know that look and I hate it, it just makes me worse so that I am like a rabbit in the headlights trying to say anything at all! Whereas I used to actually enjoy public speaking, giving lectures and presentations and so on. Maybe I will manage it again eventually.

Like probably almost all of us who have suffered a brain injury, I have had periods of intense frustration, fear and self-loathing over the changes in my mental abilities. I'm really lucky that I have regained most of my cognitive function, but I can totally sympathise with anyone still in the middle of trying to work out who they are, now that the person they used to be has gone.

[Kirk5w7 in reply to Aelfwyn]

Me too, but as my GP said to me we are part of a family of people that should truly be able to enjoy our lives now. We have seen the darkest side of things and are lucky enough to be able to build a future, not the one we thought we would have, but we should make the most of what we have, we will never stop striving to be as we were, but we have the wherewithal to make the most of what we have. Bon Chance xxxx Janet xxxx

[rosemariemyria]

This sounds like me somewhat, as I damaged frontal lobe; I struggle daily with my memory, just remembering words is a battle; I go somewhere and have to stand still until I remember where I am and why I am there; if my husband wonders off in the supermarket, I cannot identify him in the crowd as I only remember things that are in my sight; if I put something in a cupboard, it is forgotten so I go out and rebuy it; I have brain blindness which means that I do not see things if I do not expect them to be there; I cannot cook as, as soon as I turn my eyes away from the cooker, I forget that I have put something to cook and it burns; I have set fire to the kitchen numerous times. I had a PHD that I finished just before my injury but I remember nothing about it. I lost my job which was difficult as I was the main bread winner and had a son with Autism to support. I do not know how you found the support and help but I am still waiting for some support and it happened some years ago.

[Aelfwyn in reply to rosemariemyria]

What a lot you have to deal with. I am really sorry. It was Headway that got me the support I needed: I contacted my local group and they were able to refer me to the neurologist who runs our area Brain Injury Rehab clinic. The neurologist then referred me to a clinical psychologist as well.

I really hope that you are able to track down some support - maybe through Headway like me? There is no magic wand as you know, but even moral support makes a huge difference.

[headinjuryhypo]

Dear Aelfwyn, I read the Daily Mail with great interest and I agree with you that if going public helps just one other person it's worth it. That's why I spoke to the Daily Mail too, about our son, and would like to share the article with everyone on this thread in case they learn anything helpful from it. dailymail.co.uk/health/arti... Danslatete talked about fatigue, and the hormonal problems described in the article can cause fatigue - so it's just possible that hormone replacement could help that, it would make me feel good if it did!

[Aelfwyn]

Dear headinjuryhypo, I am so sorry to read your son's desperately sad story. I don't know what to say, except that I applaud you for sharing it. The possibility of pituitary damage following brain injury should be more widely recognised, and you have done your share in helping with that. Let's hope that some good comes out of your son's story.

[Perseus]

Pretty much identical for symptoms. I found my memory (mostly long term) to be impaired but my intelligence and executive function working OK once the hallucinations died down.

But by the time I recovered (actually not quite recovered at all) my business had collapsed.