Further help

[dovrob]

In my new found awakening to the true effects of a TBI, I have been searching for information. Headways has proved really useful and the dialogue in this chatline is invaluable.

Searching Glasgow, Edinburgh and Fife libraries has proved disappointing, why is such a widely experienced disability so rarely written about? TBI is surely a 'hidden Disability'.

Searching further afield, I found 'YouTube' a great fount of information, and many an hour was spent following and watching link after link.

Another resource I found is the Model System Knowledge Translation Centre (MSKTC). It is described as 'The MSKTC works closely with researchers in the 16 Traumatic Brain Injury (TBI) Model Systems to develop resources for people living with traumatic brain injuries and their supporters. These evidence-based materials are available in a variety of formats such as printable PDF documents, videos, and slideshows'.

A bit of a mouthful I agree, but it has a variety of different resources to aid those with a TBI and those close to them. Further information can be found in the link below:

msktc.org/TBI

Take care all

Dovrob

[FiHut]

Thank you for all the information I look forward to reading my way through it. You are right about it being a hidden disability which people question because " you look all right" and sadly my sister is the worst she thinks I am mad and doesn't believe that some of the mental issues I face everyday are a genuine disability and if my family won't support me who will...?

[dovrob in reply to FiHut]

Thanks FiHut, as you quite rightly suggest' appearances may be deceptive and sometimes even to ourselves. One of the reasons I've started my investigation into my condition is that for so long I've just went along with the idea that everything's ok and with just a bit of work or desire I could make things work.

I'm now looking at possible causes for my behaviour/thinking and giving myself permission to make mistakes or realise that at times I'm just too tired.

Hopefully you find some help in this information and there is information that help inform your family.

[Needlefelt]

Hi, thank you so much for the link - I’ve just had a quick look and I think it will be really useful for me. I have also been in a bit of a state of denial since my RTA and serious head injury as well as other serious injuries nearly 26 years ago. From the beginning I have been following the goal of getting back to normal/back on track and while things appeared on the outside to be working for a while it is now very clear this was the wrong path. I’ve ignored all the warning signs which now looking back seem so obvious and they have contributed to other health problems.

It was only last year that the penny dropped and I started looking at the Headway website and reading about my injuries and trying to understand what happened and how it affects me.

There’s a lot I don’t actually know on the medical side and I’ve been trying to get hold of my medical records to help - a lot have been destroyed but I do have some and am waiting on some others.

I’m hoping by finding out the facts and educating myself about brain injury I can start to give myself a break and not be so harsh on myself as things haven’t worked out how I wanted.

Anyway, thanks again and I wish you all the best in your search for information.

[dovrob]

Hi Needlefelt,

Glad you found the link useful. Reading about your journey, reminds me so much of myself- though it took me 40+ years to stop denying what had happened to myself.

I was too late to rescue most of my medical and nursing records. Nursing records are often forgotten to bed asked for, but can contain some really useful information. Sadly for me, most gone as well as most of the witnesses to my accident. Slowly I'm realising procrastination may not be one of my strengths, haha.

Youtube I found has some really useful videos, some specific about brain injuries, (I use to call it head injury but realised that was one of the ways I attempted to minimise things), and so about the brain in general. I especially found the series on Human Behaviour Biology from Standford University really interesting and useful. This is the link if you're interested youtube.com/watch?v=NNnIGh9...(Not working as expected?).

One thing I never realised about myself was what was happening with my behaviour. Thinking I was the same guy as before I tried to behave as I had before, but having no tolerance to alcohol, constant tiredness and mood swings like a wonky clock, may have made an 'interesting life' though sometimes keeping things simple would have paid so so many benefits.

Take care

Dov