[Verbal]

Originally Posted by Ammi

..do you manage ok by yourself atm..?...

Originally Posted by anniek76

Sorry to hear about your health issues. Do you get help?

For the most part I get by ok. There are certain things I am unable to do, something as mundane as changing a light bulb is out of the question as I have no balance whatsoever. Its quite humiliating when you have to call a relative to simply screw a lightbulb in, i've gone weeks without a light in my bathroom before now...that was fun

I'm not able to lift and carry things that are much bigger than a bin bag either, so for example if I wanted a new desk. Getting rid of the current one and getting a new one up my stairs is impossible unless someone helps, which to be honest nobody apart from my father is ever willing to do, and he's a busy man anyway so I don't really bother asking. I get no official help, don't think i'm entitled to it.

[hijaxers]

Originally Posted by CynicalHermit

For the most part I get by ok. There are certain things I am unable to do, something as mundane as changing a light bulb is out of the question as I have no balance whatsoever. Its quite humiliating when you have to call a relative to simply screw a lightbulb in, i've gone weeks without a light in my bathroom before now...that was fun

I'm not able to lift and carry things that are much bigger than a bin bag either, so for example if I wanted a new desk. Getting rid of the current one and getting a new one up my stairs is impossible unless someone helps, which to be honest nobody apart from my father is ever willing to do, and he's a busy man anyway so I don't really bother asking. I get no official help, don't think i'm entitled to it.

Do you not have something like WECIL in your area ? My daughter works for them locally and she has helped a lot of people i know with these sort of problems - WECIL is a registered charity in England and Wales - which is where you live i think, have a look on line for them - I think you probably qualify for help< they have recently been challenged with finding funding but comic relief etc.. support the charity a lot. Please let me know if there is anything i can ask my daughter for you - she's great for getting you in touch with the right people.

[hijaxers]

It just happens we got no choice ! we hear horrendous stories every day and just think ourselves lucky ! We just gotta get on with it and hope we don't become one of those poor elderly people failed so badly by the health service in this country , even more so if relatives are few on the ground.

[Verbal]

Originally Posted by hijaxers

Do you not have something like WECIL in your area ? My daughter works for them locally and she has helped a lot of people i know with these sort of problems - WECIL is a registered charity in England and Wales - which is where you live i think, have a look on line for them - I think you probably qualify for help< they have recently been challenged with finding funding but comic relief etc.. support the charity a lot. Please let me know if there is anything i can ask my daughter for you - she's great for getting you in touch with the right people.

Thank you for that, that's very kind. I had never heard of them. Looking on http://www.wecil.co.uk/ though it seems to be focused on Bristol and the surrounding area, i'm in Wales. I am a member of ASBAH (Association for Spina Bifida and Hydrocephalus) which obviously, is what I was born with. They have like Area Managers who are supposed to keep check on the people in their areas.
When I first joined the guy was great, he came to see me when I joined and would call me at least once a fortnight to see if he could help with anything. He left, and apart from a few emails I have had no contact with his replacement.
I was in my 30s before I had even heard of ASBAH, and that was only as a result of a chance meeting with an old school friend, who has the same health issues. Unless you cause a fuss and chase and chase, and know who to chase, nobody seems to really give a toss.

[hijaxers]

Originally Posted by CynicalHermit

Thank you for that, that's very kind. I had never heard of them. Looking on http://www.wecil.co.uk/ though it seems to be focused on Bristol and the surrounding area, i'm in Wales. I am a member of ASBAH (Association for Spina Bifida and Hydrocephalus) which obviously, is what I was born with. They have like Area Managers who are supposed to keep check on the people in their areas.
When I first joined the guy was great, he came to see me when I joined and would call me at least once a fortnight to see if he could help with anything. He left, and apart from a few emails I have had no contact with his replacement.
I was in my 30s before I had even heard of ASBAH, and that was only as a result of a chance meeting with an old school friend, who has the same health issues. Unless you cause a fuss and chase and chase, and know who to chase, nobody seems to really give a toss.

Well i've just looked at the quarterly newletter Wecil sends out and it says in Wales it is registered charity number 1053515 - see if that helps and i will ask my daughter re Wales when we speak and see if i can glean any more about help if you should need it - what part of Wales are you - generally ?

[Verbal]

Originally Posted by hijaxers

Well i've just looked at the quarterly newletter Wecil sends out and it says in Wales it is registered charity number 1053515 - see if that helps and i will ask my daughter re Wales when we speak and see if i can glean any more about help if you should need it - what part of Wales are you - generally ?

South West - Swansea.

Thank you, very much

[Ammi]

..I know you've probably already heard of the Shine charity for Spina Bifida and Hydrocephalus..but they have a team in Wales...maybe if you contacted them, they could put you in touch with someone in your local area that you could talk to because it doesn't seem right that you don't get any help..or even that you have to look for it and don't have it offered to you...here's the link anyway..

http://www.shinecharity.org.uk/

[hijaxers]

Originally Posted by CynicalHermit

South West - Swansea.

Thank you, very much

may be a couple of days but i will def get back to you on this.

[Verbal]

Originally Posted by Ammi

..I know you've probably already heard of the Shine charity for Spina Bifida and Hydrocephalus..but they have a team in Wales...maybe if you contacted them, they could put you in touch with someone in your local area that you could talk to because it doesn't seem right that you don't get any help..or even that you have to look for it and don't have it offered to you...here's the link anyway..

http://www.shinecharity.org.uk/

Thanks Ammi, they are ASBAH that I mentioned, they've changed to Shine over the last 18 months or so. When I first joined they were ASBAH and they were great. Since the change, they are worse than useless.

Originally Posted by hijaxers

may be a couple of days but i will def get back to you on this.

I really appreciate it, thank you.