Blind and Visually Impaired Community
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I think I’m going total... (self.Blind)
submitted by WhatMusicTheyMake
I don’t think I’ve posted in here before. But just to give you an idea of me and my past.
I’m 21 and from the UK. I am considered DeafBlind but my sight is much worse than my hearing and it is getting worse rapidly. I have never had great eyesight but I started to lose more of it when I was 11. It’s cortical in nature and the cause is thought to be from mitochondrial disease I am awaiting results on that but it seems likely.
Because it is cortical I always thought and was told it was highly unlikely I would ever become total (be it light perception or completely total.) and I was told and thought that maybe as I got older I would become severely sight impaired /legally blind.
But here I am 1/60 (I think that’s 20/1000 but not sure) and things are getting worse rapidly.
I wouldn’t say my sight is completely useless but it is very close to being such.
I am having quite a lot of issues accessing support essentially because I’m not at crisis point yet and my instructor isn’t very sympathetic to progressive issues. It’s taken me 9 months to even get her to consider that I might not just be being lazy and my hearing is really affecting my quality of life. (Again cause is nerve atrophy and cortical issues so hearing aids don’t work, I have a hell of a time trying to understand speech.)
I don’t expect to get support soon but I want to live my life and make things easier on myself if I can.
So I have a cheap Braille display (orbit reader 20) some Braille learners books. I’ve used a cane for years anyway so I’m good (ish) on that front.
But obviously things aren’t going to be the same from this point forward.
I’m not very proficient in grade 2 but it is becoming a necessity I also don’t know how to use a Perkins keyboard well.
I also realise now more than ever the importance of organisation before it was less that I organised myself well and more that I had an insane ability to remember where things were. I can’t act like that anymore.
Would it be stupid to practice things blindfolded?
I feel like necessity is probably the best teacher in these situations but I don’t wanna do something stupid.
Also, and lastly. Will the shock of it all go away? I’m having to really get my shit together because of this? Will it fade into normality one day?
I’m 21 and from the UK. I am considered DeafBlind but my sight is much worse than my hearing and it is getting worse rapidly. I have never had great eyesight but I started to lose more of it when I was 11. It’s cortical in nature and the cause is thought to be from mitochondrial disease I am awaiting results on that but it seems likely.
Because it is cortical I always thought and was told it was highly unlikely I would ever become total (be it light perception or completely total.) and I was told and thought that maybe as I got older I would become severely sight impaired /legally blind.
But here I am 1/60 (I think that’s 20/1000 but not sure) and things are getting worse rapidly.
I wouldn’t say my sight is completely useless but it is very close to being such.
I am having quite a lot of issues accessing support essentially because I’m not at crisis point yet and my instructor isn’t very sympathetic to progressive issues. It’s taken me 9 months to even get her to consider that I might not just be being lazy and my hearing is really affecting my quality of life. (Again cause is nerve atrophy and cortical issues so hearing aids don’t work, I have a hell of a time trying to understand speech.)
I don’t expect to get support soon but I want to live my life and make things easier on myself if I can.
So I have a cheap Braille display (orbit reader 20) some Braille learners books. I’ve used a cane for years anyway so I’m good (ish) on that front.
But obviously things aren’t going to be the same from this point forward.
I’m not very proficient in grade 2 but it is becoming a necessity I also don’t know how to use a Perkins keyboard well.
I also realise now more than ever the importance of organisation before it was less that I organised myself well and more that I had an insane ability to remember where things were. I can’t act like that anymore.
Would it be stupid to practice things blindfolded?
I feel like necessity is probably the best teacher in these situations but I don’t wanna do something stupid.
Also, and lastly. Will the shock of it all go away? I’m having to really get my shit together because of this? Will it fade into normality one day?
Stick81 3 points 4y ago
I have a progressive disorder, so when I went to my state's rehab facility, I did many of my lessons and drills blindfolded to prepare for the worst case scenario. While I may never lose all my vision, I wanted to be ready if that's where things are headed. Braille skills are very important, it's easy to overlook them while utilizing other methods, such as screen readers or voice recorders. I use a voice recorder for making lists or short memos for dictation later. But sometimes a Braille slate is real handy as well. I use a Brailliant 32 for my computer and mobile devices, and NVDA.
As far as the shock wearing off, with training vision loss can be reduced to a mild inconvenience, and it's amazing what you can get used to.
As far as the shock wearing off, with training vision loss can be reduced to a mild inconvenience, and it's amazing what you can get used to.
PolariChat 2 points 4y ago
If your are in the UK there are a bunch of services that you can contact for support. Deaf Blind UK is nationwide. There will be local services in your area. I also get loads of support when I go. Good luck
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