Hi all,
I am wondering if anyone has gone down route of being registered partialy sighted post graft or anytime with KC?
how they got on?
Registered partialy sighted post graft
Moderators: Anne Klepacz, John Smith, Sweet
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Going back a number of years now it was tey eye hospital that basically did this. A lens was nolonger an option for one eye and the right eye had just been grafted.
I was provided a white stick and the training that goes with it and offf I went to London to sudy. Coped fine with public transport, Uni was very supportive, they knew up fron of my disability and I just told them what I needed for studies, handouts for lectures so I could look close at the diagrams. RNIB helped with a tape recorder/dictaphone that had the ability to make a 90 minute tape last 180 minutes. Back in 1990 this was the height of technology.
All things considerd I feel that being partially sighted made no practical difference to my ability to enjoy myself like the next person.
It was just a case of embracing what I could do and build on it and do my best to avoid dwelling on the things I could not do and the only thing for me was motor racing.
The micro biology and some other practicals I did alonside my second year studies once there was no more need for me to be register partially sighted.
I was provided a white stick and the training that goes with it and offf I went to London to sudy. Coped fine with public transport, Uni was very supportive, they knew up fron of my disability and I just told them what I needed for studies, handouts for lectures so I could look close at the diagrams. RNIB helped with a tape recorder/dictaphone that had the ability to make a 90 minute tape last 180 minutes. Back in 1990 this was the height of technology.
All things considerd I feel that being partially sighted made no practical difference to my ability to enjoy myself like the next person.
It was just a case of embracing what I could do and build on it and do my best to avoid dwelling on the things I could not do and the only thing for me was motor racing.
The micro biology and some other practicals I did alonside my second year studies once there was no more need for me to be register partially sighted.
Gareth
I guess what I have done in past is put barriers infront to stop me doing stuff and as you said focus on what I can do, so I was thinking that being registered parcialy sighted is just another barrier or could get me the extra help I need to forfill a fuller life? being more isolated from society than I am now. I see my specialist this week, so I will ask him about being registered as I was told by local authority he has to do some kind of test and form filling.
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Gareth2
A question my Mum put to me when I put up barriers was; How do you know you can not do somthing until you try?
She was correct, I went and repainted the car I had to stop driving. Because I could not see I took more care and my sense of touch was enhanced I used a paint brush instead of a spray gun. With careful rubbing down I showed that I could re-paint a car. My brother helped me with the welding and by the time I could see I had restored a car!
A question my Mum put to me when I put up barriers was; How do you know you can not do somthing until you try?
She was correct, I went and repainted the car I had to stop driving. Because I could not see I took more care and my sense of touch was enhanced I used a paint brush instead of a spray gun. With careful rubbing down I showed that I could re-paint a car. My brother helped me with the welding and by the time I could see I had restored a car!
Gareth
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rosemary johnson
- Champion
- Posts: 1478
- Joined: Tue 19 Oct 2004 8:42 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: East London, UK
I'm registered....
Moorfields - or rather Prog Buckley - had to fill in a huge form.
I was in the position of not being able to get a new job (my previous one had made me redundant, by agreement, and I'd spent some time thereafter in Africa doing volunteer work on an AIDS project, but was back inthe UK and trying to find work)
... without special adaptive equipment because I couldn't cope with modern windoze computer screens, and more to the point learning how to use windoze with this adaptive equipment. ANd I couldn't gt the training (at a price I could afford) without a registration number.
Whether the training would have been suitable anyway I never discovered. I kept investigating possibilities adn when it transpired I couldn't supply a reg number, the doors kept shutting again, and I was running out of time to get benefit, and had the DEAs telling me to go and lean on the hospital again as they never liked having to fill in those huge forms so fobbed people off as much as they could.
And meanwhile it was taking Buckley months to reply to a letter, and when he did it was clear he'd been reading the wrong person's notes, as his letter referred to me having 6/9 vision in my corneal lenses - and I've never worn corneal lenses in my life!!
SO I wrote back and asked what on earth was going on, and were my notes really in that much of a mess - and meanwhile how did he expect me to live on sunshine and fresh air, as I wasn't able to get the training I needed to continue my career with my ever-increasing photosensitivity - and heard nothing more till my next appointmnet 9 months later, when it transpired there was a letter from him sitting in my file which had been sent to my GP several months earlier but which no-one had ever had the courtesy to send to me!!!
[If the Moorfields Mole is reading this, I would be very glad to hear from you, as I've never had any apology for that!]
[Or even my own copy of the letter!! - only a photocopy of the photocopy of the photocopy of the cc to my GP.]
ANyway, that letter did say in the circumstances he would reconsider registering me.... so I had to go and see this extremely patronising-git type of social worker person (for whose extreme ill-manners onthe phone I had previously been obliged to apologise to the staff of Leytonstone job centre, grrrrr!) who filled in all but Buckley's part of the big form, and wanted to know lots of stuff about me - including lots of personal info about my personal finances, to which I kept telling her to mind her own damn business!!!!!
And the form eventually got chased through the system, and eventually I had the local council getting in touch trying to make an apointment to come and "assess" me - to which I pointed out they did not "have to assess me" - I was entitled to an assessment **If** I wanted one, but I was not obliged to consent to being assessed, and as i'd already been assessed till I was blue inthe face and found it all a complete waste of time, there was no way I was going to waste any more time letting them waste their time on it, and they were just going to send me the registration card, thank you - and then had a long argument with the social worker trying to tell me she couldn't send it, it could only be handed over in person at an assessment! - apparently she didn't have the brains to have understood the first part properly!!!!
ANyway, I went to the social services office and collected the thing, which turned out to be a letter not a card after all.
And came home brushing the dust of LBWF social services off my sandals with relief....
....until I came to have to go to another office to tell them I was now registered and I wanted a freedom pass please.
First question: "Have you been assessed yet?"
I'll leave my answer to your imagination.
On that occasion I'd gone to the office on the way back from a riding lesson, so had my jockey helmet and my riding crop, and stood there tapping the end of the whip on the counter while kept waiting, and I think the little girl "just did it" because she was scared of me!
Then all went well until two years later when it needed renewing and some new young social worker tried to tell me they needed to write to, and get a report from, Moorfields. I told her this was ridiculous, as one can't change one's genes the way one changes one's trousers - and told my councillor too, who took it up with the head of social services, who was in touch with an apology very quickly!!! and I haven't heard a peep out of them since.
Whether those doors to the IT training would then have reopened I never did find out, as by then I'd given up trying to get back into the IT industry and headed towards complementary therapy.
The freedom pass, and the disaled person's railcard, are definitely the most useful parts to me (though I made sure the training centre and the examiners had a copy of the registration letter when I was doing my massage diploma exams, and the examiner smiled at me very sweetly......)
I find there are "freeing" in the sense of, I'll go to places, take little odd bits of work, or going to meetings/trade expos etc that I probably wouldn't bother with if I'd have to pay the tube fares, and I think I'd lose out quite a bit sitting at home and not going.
My problem is, even with the registration, and the free/reduced travel, I still can't o to a lot of places/events becasue I daren't go anywhere there may be flashbulbs - and people want to take photos anywhere and everywhere and pop flashes without thinking, grrrr.
Rosemary
Moorfields - or rather Prog Buckley - had to fill in a huge form.
I was in the position of not being able to get a new job (my previous one had made me redundant, by agreement, and I'd spent some time thereafter in Africa doing volunteer work on an AIDS project, but was back inthe UK and trying to find work)
... without special adaptive equipment because I couldn't cope with modern windoze computer screens, and more to the point learning how to use windoze with this adaptive equipment. ANd I couldn't gt the training (at a price I could afford) without a registration number.
Whether the training would have been suitable anyway I never discovered. I kept investigating possibilities adn when it transpired I couldn't supply a reg number, the doors kept shutting again, and I was running out of time to get benefit, and had the DEAs telling me to go and lean on the hospital again as they never liked having to fill in those huge forms so fobbed people off as much as they could.
And meanwhile it was taking Buckley months to reply to a letter, and when he did it was clear he'd been reading the wrong person's notes, as his letter referred to me having 6/9 vision in my corneal lenses - and I've never worn corneal lenses in my life!!
SO I wrote back and asked what on earth was going on, and were my notes really in that much of a mess - and meanwhile how did he expect me to live on sunshine and fresh air, as I wasn't able to get the training I needed to continue my career with my ever-increasing photosensitivity - and heard nothing more till my next appointmnet 9 months later, when it transpired there was a letter from him sitting in my file which had been sent to my GP several months earlier but which no-one had ever had the courtesy to send to me!!!
[If the Moorfields Mole is reading this, I would be very glad to hear from you, as I've never had any apology for that!]
[Or even my own copy of the letter!! - only a photocopy of the photocopy of the photocopy of the cc to my GP.]
ANyway, that letter did say in the circumstances he would reconsider registering me.... so I had to go and see this extremely patronising-git type of social worker person (for whose extreme ill-manners onthe phone I had previously been obliged to apologise to the staff of Leytonstone job centre, grrrrr!) who filled in all but Buckley's part of the big form, and wanted to know lots of stuff about me - including lots of personal info about my personal finances, to which I kept telling her to mind her own damn business!!!!!
And the form eventually got chased through the system, and eventually I had the local council getting in touch trying to make an apointment to come and "assess" me - to which I pointed out they did not "have to assess me" - I was entitled to an assessment **If** I wanted one, but I was not obliged to consent to being assessed, and as i'd already been assessed till I was blue inthe face and found it all a complete waste of time, there was no way I was going to waste any more time letting them waste their time on it, and they were just going to send me the registration card, thank you - and then had a long argument with the social worker trying to tell me she couldn't send it, it could only be handed over in person at an assessment! - apparently she didn't have the brains to have understood the first part properly!!!!
ANyway, I went to the social services office and collected the thing, which turned out to be a letter not a card after all.
And came home brushing the dust of LBWF social services off my sandals with relief....
....until I came to have to go to another office to tell them I was now registered and I wanted a freedom pass please.
First question: "Have you been assessed yet?"
I'll leave my answer to your imagination.
On that occasion I'd gone to the office on the way back from a riding lesson, so had my jockey helmet and my riding crop, and stood there tapping the end of the whip on the counter while kept waiting, and I think the little girl "just did it" because she was scared of me!
Then all went well until two years later when it needed renewing and some new young social worker tried to tell me they needed to write to, and get a report from, Moorfields. I told her this was ridiculous, as one can't change one's genes the way one changes one's trousers - and told my councillor too, who took it up with the head of social services, who was in touch with an apology very quickly!!! and I haven't heard a peep out of them since.
Whether those doors to the IT training would then have reopened I never did find out, as by then I'd given up trying to get back into the IT industry and headed towards complementary therapy.
The freedom pass, and the disaled person's railcard, are definitely the most useful parts to me (though I made sure the training centre and the examiners had a copy of the registration letter when I was doing my massage diploma exams, and the examiner smiled at me very sweetly......)
I find there are "freeing" in the sense of, I'll go to places, take little odd bits of work, or going to meetings/trade expos etc that I probably wouldn't bother with if I'd have to pay the tube fares, and I think I'd lose out quite a bit sitting at home and not going.
My problem is, even with the registration, and the free/reduced travel, I still can't o to a lot of places/events becasue I daren't go anywhere there may be flashbulbs - and people want to take photos anywhere and everywhere and pop flashes without thinking, grrrr.
Rosemary
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
I was registered blind.
My problem was that I had good correction with lenses, but suddenly became lens intollerant. Nothing would work, and nothing would stay in.
So I went from having reasonably good sight (lenses in) to being legally blind in one step. I remained registered until 21 months after my graft.
Andrew
My problem was that I had good correction with lenses, but suddenly became lens intollerant. Nothing would work, and nothing would stay in.
So I went from having reasonably good sight (lenses in) to being legally blind in one step. I remained registered until 21 months after my graft.
Andrew
Andrew MacLean
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