My OH has been asked to help start a group (by neurologist) for recent TBI patients. What advice did you find crucial/helpful at early stage

[pollyanne]

[ncmurphy1951]

a excellent idea i found these types of groups extremley helpful if only to share experiences seek practical advice and build friendships

[bikerlifestyle]

i can offer advice on what would have helped earlier on, rather than what did help, because early on everything was slow and laborious i had no idea what was going on

but the one thing i wish i had of had is

Honesty:

i know no one knows how you will recover but its not this honesty i am on about

its more of having a close friend of family who could have said look this is what you are doing, you are hurting people you need help. that sort of tough love honesty.

[pollyanne]

Totally agree with what you have both said as I think you feel that you are on your own on leaving hospital and practical advice about where to seek help and information is a godsend . It has helped me immensely to be on this site and the information i have got has been brilliant,( from the people who have experienced the ups and downs not just read it in medical books) and have developed an empathy!

[Bards]

Keep a diary of work towards targets/goals and share it. This helps with motivation and direction, self-awareness, fatigue pacing etc. Even now I still underuse it, but it certainly helps with seeing what actually sticks to the wall when thrown ;-). As per Biker, this for me wasn't Early Recovery as such as I was 'severe' and happy to be led to water but too compromised to drink without first-person prodding. The diary and fact it will be shared now do the prodding rather than a (doubtless exasperrated) Case Manager...!

Let us know how it goes.

[bikerlifestyle in reply to Bards]

i class early recovery for me as 2+ years down the line, the parts i can start to remember actively fighting to get better everything before this was just going through the motions

and you are right the initial getting to a place where you are aware of issues and problems certainly needs guidance and instruction i never really considered what i classed as early stages until you pointed that out, so thank you, it does help.

[philstretchdavis]

I had my BI in 2004. At first there is no one. I was lucky to be chosen to attend a BI college, quite simply called Brain Injury UK. They went out of business through lack of funds about 2008. It was nice to talk to like minded people and every day was a lesson learnt. If you keep to the strategies for lack of memory, life eventually evens itself out, and through trial and error a new meaning of life emerges. And if you want me to be honest, it took nigh on 8 years before I really thought I had my life back.

[pollyanne in reply to philstretchdavis]

it is sad that you were left to your own devices at first and hopefully it is people who are looking for someone to turn to initially that maybe the formation of the group can help. BI is not a quick fix thing and it is so frustrating to deal with the immensely slow recovery and that I think is the hardest thing to get used to and to accept (my OH is only 14 months down the long road!)

[headwayuk Partner Headway]

Hi Pollyanne,

Thank you for your question. This sounds like a brilliant opportunity - if your OH is happy to set up a patient group it could be an excellent way to support his recovery, as well as help others share experiences.

I think it could be helpful to speak to the local Headway, as they should be able to give some useful guidance on running a support group. From your profile it looks like your nearest group would be Headway Warrington - you can find their details at headway.org.uk/branches/war...

I hope this helps, and do get back to us if you need any more information.

Best wishes,

Headway.

[pollyanne in reply to headwayuk]

will do thanks- think that any liaison and extra imput is beneficial for all