Hi all,
I forgot to post this video before but this here is a slideshow of pictures of various events from my Headway from last year.
The video was put together by two service users and they have done a fantastic job.
Headway Portsmouth and South East Hampshire slides... - Headway
Headway Portsmouth and South East Hampshire slideshow.
Written by
Matt2584
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33 Replies
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What a wonderful presentation and so beautifully put together : )
Great choice of music too : )
Thanks so much for sharing with us, Matt and well done to all involved, I thoroughly enjoyed this : ) x
Really lovely! Thanks so much for sharing. xx
matt that was absolutely fantastic mate.
we dont have a day centre but we do have some permanent staff who could do with getting off their asses and getting out into the community promoting the wesst sussex headway groups.
forgot to say hope you had a good xmas and heres to2016
Thank you Steve, glad you like it 
and happy new year,
It's quite interesting to hear about how other Headway branches across the UK work.
When I first joined my Headway in 2007, their main centre was set in Paulsgrove which is next to Portsmouth. I only visited the Paulsgrove building once. I mainly visited one of their drop-in centres on a Friday morning, that I now volunteer for :).
Later in 2007 our Headway left Paulsgrove and used to rent out a small cottage on the grounds of St. James' hospital in Portsmouth. Brilliant place that was, proper rehab centre, but because of funding cuts, things got tough for a lot of charities.
After 6 years, Headway had to move to another location because the rent they had to pay per year was extortionate.
They now own a small section of a leisure centre, the Mountbatten centre.
So things have been a bit up and down with our Headway. When I joined them they were brilliant. After the funding cuts, things got harder and Headway was, in some ways boring.
But now they don't fork out so much money on rent and we now have much better management, we all pitch in as a team :).
Things are looking up for us and I think you can see some of those things in the video :).
matt2584 mine just a group, we meet every 2nd monday of each month, its great fun, we also meet as a group socially.
what i also liked about the video, was how the helpers ? put themselves out to make people more aware of headways and the sort help they give to people with bi.
we have the wife of a person with a bi who has collected alot of money for our group( she works for a large co., but the money only comes from her small section ) if i were headway, i would be writing an introductory letter, setting out what we do and asking if they could help in any way.
do you do that to the big stores in pompey ? you could even ask for them to donate something to raffle ( wonder what youd get from the anne summers shop, hahaha ) .
seriously though pompey has great potential for headway ( and as they get alot of business from us ) could always write to the dwp assessment centres asking them for a donation hahaha !!!!
Yes most people tried to pitch in last year to help. Some volunteers, the staff, the service users and even some family members linked to the service users.
The manager before our current manager now was terrible. I saved up a lot of money and donated it to Headway and didn't get much of a 'thanks' in reply!
But the manager we have now is so much better and gets on with everyone and, like I say, has got us all to pitch in and whenever a donation is made or help has been given, you really do get the proper 'thanks' you deserve.
Some of us and the staff have tried getting in touch with the big companies in Pompey and we have succeeded at times but they can't be supporting Headway all the time which is a shame
I'm guessing the'asking the DWP for donations' part was a joke :).
matt2584 asking the dwp was partly a joke, except i dont find it funny when people who need their dla / pip have it taken away from them when there isnt any way of telling how someones bi impacts on their lives!!!
once again its a case of us being judged by someone who doesnt have ( and i wouldnt wish it on anyone ) a bi.
for those transferring from dla to pip will be difffficult, because the government realise there have been people living safe for possibly the past 20yrs, who go to the dr complaining to the dr of a bad back ( which at one time wasnt further investigated ) and stress and were automatically awarded dla along with the other benefits that come with it.
these are the people the government were trying to weed out , but because of the guidelines given to assessors, a few of us have had problems along the way.
thankfully there is an appeal process with an independent panel comprising of a dr and a solicitor.
why cant they keep supporting headway in one way or another mate ? invite the directors or managers around to see what you do, what youd like to do, how you raise funds what you do with them, how the branch could promote the sponsoring company.
have a think mate put some ideas to the staff and su s see what happens.
steve
Really enjoyed the slideshow. Alas my daughter has so far refused to join in with the local groups. She tried a couple but declared that she doesn't want to hang out with other BI people because she wants to get back into her 'real life'. I think she's missing out and also missing the point but hey that's her decision.
Hi Lazuli and I am glad you enjoyed the slideshow.
I was 11, nearly 12, when I had my first two operations on my head leading to a BI. I too, like your daughter, wanted to continue my life as normal, to lead a 'real life' and also I kind of had to at the time because I never ven heard of Headway back then.
It's silly really because doctors should be referring their BI patients to Headway.
So like I say, I was leading my life the way I wanted to live it but looking back on it now, that was completely the wrong idea.
I didn't know about Headway until 2007 and that year I joined them but if I knew about them earlier, say 2001-2002 when I had finished with school and college, I probably would have jumped at the chance.
I might have even joined during school but I wouldn't really know when to fit it in. Maybe I could have alternated with them, go to school one week and Headway the next :).
When you say your daughter doesn't want to hang out with other BI survivors, it sounds to me as if she hasn't or doesn't accept her own disability.
Maybe in time she will change her decision and also going to a local Headway group might even improve her 'real life' :).
matt2584 theres also the stigma attached to admitting to yourself and your " friends " at that age that there is something wrong......kids are cruel.......plus shes at the age where her hormones are everywhere difficult my friend
Yes Steve, kids are cruel. Looking back at some of the days I spent at school, I hated them mostly cos of the kids.
But growing up with BI and even now, I find adults can be just as bad as kids, maybe even worse.
In school, I would get dirty looks f om people cos I look different.
They are kids, they don't completely understand.
Today I get strange looks at times, mainly from adults who should know better.
That's right, Matt. She doesn't want to accept that she is now different. Due to the severity of her injury, it is unlikely she will become the person she was before. This forum has been so valuable to me in that I don't feel sad about this. I know my daughter will continue to improve year on year, even if those improvements are minor and slow.
I used to work with and advise young people on careers and voluntary opportunities. The majority of my client group had challenges including a range of disabilities. One such young person had suffered a brain injury when he was a child. He was in his early 20's when I met him. It was then, while I was researching opportunities for him, that I came across Headway. This would have been about 2006-2007. I signposted the young man to Headway but never made enquiries myself.
Fast forward to last year, one of the nursing sisters on the trauma ward of the hospital my daughter had been admitted to began singing the praises of Headway. Great reminder for me. I looked up my local group and contacted them. I must admit they weren't that clued up on the pathways to rehab but because of our fight to get her into rehab, they are now more informed. They really came into their own once my daughter returned home and still are, even if my daughter won't attend their groups.
As you say, she may change her mind in future. She is due to start a phased return to work later this month. Can't get more 'real life' than that. No one can predict how it will pan out but she is well supported by professionals including one from Headway.
I'm glad to hear she has the support she needs even if she doesn't really know it.
I think acceptance is a big thing with any aged BI survivor. I remember one guy said in my local Headway once a few years ago that having a BI was different for me cos I had to grow up with a BI whereas the people in the group at the time, were all adults.
So they grew up, exprienced a thing or two in life, then had a BI which changed their life completely.
For me I grew into a boy, took on a little experience, then boom. BI. And the rest of life was a bit of a struggle but I got through it.
Life is fine for me at this moment because I am living it how I want which is probably very different, dull or mundane compared to some but hey, I am enjoying it, that is what is important.
What I and my family have noticed is friendships at school. There were quite a few people who would stand by me, act like they were my bodyguard during school. But that was just it. It was an act.
Some people did warn me of these actors, these suck ups but I didn't listen or care at the time. After all, I was a kid.
But now school is long gone I am only really friendly with a couple friends from school.
I have an account on Facebook and most, if not all, my school "friends" are on there too but not many of them give two hoots about me.
Some friends I knew back in school that I thought were just 'ok' are actually the nicest people toward me now :).
And now that I am at Headway I have gained more friends there.
"When you have a BI or some other life threatening illness... Etc, You know who your friends really are".
I'm so glad you know and like who you are. You will be a great role model for others who haven't reached that point in their journey yet.
Yep, agree about the friends. Thankfully my daughter has a core group of friends who have been absolutely fantastic. Others have been less so but that's to be expected.
lazuli just read your profile.
has your daughters personality changed in any way since her tbi ?
i had a stroke which left me with a frontal lobe bi.
where as before i was out going talk to anyone a real party animal, now im emotional aggressive noise intollerant hate strangers, my wife has to take me to all my appointments , distract me if she sees a possible ...sorry icant always think of the word im trying to say.
keep an eye on her and point things out to her , she may not , like me , be aware shes said anything wrong
i read with interest, where you have stated " others have been less so " that is possibly because theyve noticed a change in your daughter, in her manner , the way she talks to them , which is a problem faced by all people with a bi.
steve
Steve, just wrote and lost a rather long rant of a reply regarding those 'others less so'. Probably for the best. Yes, there are personality changes. I wouldn't say she was aggressive but she does snap at me occasionally. She suffers from anxiety and from noise sensitivity in specific circumstances like when I am putting dishes away in the kitchen even though she's in another room. However she is far better at coping in crowded stores than I am!
what i actually meant was that not everyone is able to cope with the fact their friend has suffered a severe injury.
statistics show that 85% of marriages where a partner has a bi will not survive and i think the same can be said of friendships.
thats good, me personally i stay away from crowds and public transport .
if i do go out i dont stray far because from.....well there not sure what it as the mo, so the only times i do go out is with my wife at the weekend or if its group night.
just keep an eye and make a note of any changes you notice.
steve
When you say "85% of marriages where a partner has a BI will not survive", I hope you are saying the marriage won't survive :).
I know a few people at my Headway whose marriages have come to an end because of BI.
Now going back to when you first get married, husband and wife will both swear an oathe to love and cherish their spouse until death do them part.
It just shows that saying that means nothing to some people.
I suppose to some people, they might see a BI as death in some cases, depending on the severity of it.
So, when the partner gets a BI, their spouse can then do what they like!?
Err, don't think so.
I found that the friends who made the effort to visit my daughter in hospital and or rehab earlier on have stood by her (apart from one). A few friends came at the very end to see what all the fuss was about and she hasn't seen them since. There is no doubt, she is not the same person she was before her accident so perhaps people can't accept her for who she is now or realise that she will change gradually over time at her own pace. People lead busy lives and have other relationships so this is a factor too.
As for marriages and partnerships breaking down, I can imagine these relationships can get very complex. 85% does sound like a very high rate though.
My English teacher came to visit me when I had my first two ops. I was quite surprised cos I didn't really get along with her at school greatly. It shows how much she really cared though.
About three or four years later, when I was in my last year of high school, I had to drop out early.
But one of the teachers/headmaster came to visit me at my house quite often and broughht along my best friend (best fri nd at the time anyhow), which was nice.
But it just reminded me of when I was talking to some school fri nds on Facebook again.
I used to message one of these fri nds first before I added them. And one person I messaged, I remembered her well but she turned around and said "Sorry but I don't remember who you are"!.
I had my last word and said something like "I am the one who has got the brain injury, therefore I could have the memory problem but I don't, fortunately. But I remember you clearly."
Personally, I think she did remember me. I think she knew exactly who I was she wasn't admitting it cos she was actually quite a nasty person during high school.
lazuli you dont say how old your daughter is.
all groups are different......is it a tbi your daughter has
Hi Steve,
Yes, it was a TBI. I finally succeeded in submitting a bio the other week so more details there. My daughter is nearly 24.
The groups she was referred to are attended by people much older than my daughter but she claims it didn't matter. They could have all been in their 20's and 30's and she still wouldn't have wanted to go.
Hi lazuli,
I was 23 when I first joined my local Headway and I was as quiet as a mouse because prior to that I had lost a lot of confidence.
Apart from a couple of people, I was the youngest person there.
The majority of the group are in their 40s-60s.
hey lazuli yeh i can quite understand her comments......hang with oldies get old before my time........
do you still go to the group ? we had a lady come to ours, her son was in denial and wouldnt come....she stopped coming after he passed away which was ashame.
Weird, when I was in denial I nearly drowned.
I'm kidding. That was a bad joke :).
There is no option for me to attend any Headway groups. I would have to join a very general carer's group.
Interesting you say that because at my Headway, a service user can be accompanied by a family member or carer if they wish.
A lot of service users can be quite nervous upon entering for the first time and the staff at our Headway understand this.
I think actually our Headway would gladly want more people to come along, BI or not, and they can then get a little extra money which they sorely need. We all have to pay a small fee for drinks and biscuits :).
My local headway has a friends/familly group no idea what it's like since i go to the normal meeting once a month.
Worth looking maybe?
There is no such group that I am aware of, Roger. If my daughter did want to attend a service user group, I'm pretty certain I could go along if she wanted me there. She just doesn't want to engage whatever the circumstances.
To add to what Roger just said, it reminded me. Our Headway also has a family members/carers support group.
On Thursdays I go to a Headway group where we play games, it's a leisure group and in the next room to us is where the wives and carers of some of the users hang out and they get some 'chill' time.
Absolutely BRLLIANT!!
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