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VEEing Usher Syndrome, and with a sense of humour.

Posted Feb 19 2009 6:31pm

I was googling images on Tunnel Vision and Usher Syndrome when I came across these and a cup of sugar.

 

so dolly the sheep had Usher’s, too? rotfmao

 

to be this young and think he’s a piece of beefcake would surely mean one has tunnel vision, ha

at a degree of approximately 10 degrees out of 90 each eye, this is what we see (without the black…. it’s entirely an invisible field)

 

the biology of usher syndrome

 

***********************************

i find these excerpts from Usher Life UK to be bittersweet and hilarious

 

Dear Santa, I have Usher…

By members of usherLife egroup

What do we want for Xmas? When we were kids, we would write a “wish list” to Santa, but for Usher people of all ages, this seems to linger on. They were asked, via the UUK egroup, what they wished for Xmas to help with their Ushers. Obviously a cure/treatment for our RP is on the top of our wish list, but this won’t happen for a while, so that’our “in the meantime” wish list…

HERBIE USHER CAR
The name says it all, doesn’t it? We would LOVE to have an automatic driven car to take us anywhere where we want to relieve the pressure from our partners, friends, etc.

SUPER USHERVISION SPECTACLES
One of our most popular wish - a super, sexy and thin spectacles that can see in the dark, magnify in/out to read small print, train departure boards, etc. Also auto-lens adjustment to enable us to adjust to the quick light/dark conditions. And on-lens flashing warning signs of incoming people, small children, objects, traffic, etc. An every Usher’s dream gadget…

ACCESSIBLE MOBILE PHONES
One of the most frustrating things about the advancing technology of mobile phones is by throwing in everything from built-in digital cameras to kitchen sinks into one little device is that the LCD screen is STILL inaccessible for many of us. We desperately NEED font/size adjustment, inversion of background into a negative mode (white text on black background), magnifying modes to be able to read the irritatingly small icons and “fixed” text as well as reading SMS messages. Come on, you mobile phone manufacturers, we need those accessible features now!

INSPECTOR GADGET HAT
If you’ve seen the cartoon series and the film, then you’ll know what the Closeau-type hat can do - bring out flashing warning signs, mirrors, lights and maybe a robotic hands to do hands on communication.

MAGIC (WHITE) CANE
An invisible (white) cane that has the magical power to divert people from crashing into us and also divert cars, buses and lorries from running us over.

SMART USHER SHOES
Shoes with sensors to warn and stop us falling down steps, or in manholes, or tripping over things and bumping into small children. Also could help with crossing roads.

ACCESSIBLE TV
TV with the facility, via remote control, to configure subtitles - font, size and position.

SMART GUIDE DOG
One of the key issues about Usher and deafblind people who have a guide dog is that they are not trained as hearing dogs for the deaf, so they would love to have a “smart” guide dog that can do BOTH roles and maybe do a bit of hands on… sorry paws on, communication?

MOVE OVER SEE HEAR!
BBC to axe See Hear! in favour of Usher See!. Say no more…

ITEM FINDER
A device that enables us to find things around the house such as TV remote controls, pens, coins… and maybe partners who are hiding from us!

*****************

I have one of my own!

Lost In Translation

When one is afflicted with Usher’s, at one point the 3-D dimensions slowly disappear and we are disillusioned on what we think we understand and what is real.

I often mistake these words:

diet for dick. Are you going ON a dick? (me: gasp! Have you been in my mind recently? Them: Oh, you seemed to be desperate to be into the thing. Me: *blushing* well, it’s not like i can put out an classified ad for a dick… Them: Oh my god, Christine. It’s DIET not dick, you’ve got a diiiiirty mind.)

cookie for cocaine: this is a very blurred, white line sometimes, no pun intended. ( Them: Would you like some cocaine? Me: I don’t do those kind of stuff, way too dangerous. Them: What’s so dangerous about them? Me: I fear I’ll become delusional, a bag of anxiety, addicted and desperate. Them: You just had one an hour ago and you don’t look like that! Me: an hour ago…? I didn’t sniff a line! Check my nostrils… Them: laff, laff, laff. *stuffing a cookie in my protesting, open mouth.)

there’s way TOO many moments in my Usher life where I’ve gone hours thinking we had a conversation about that particular thing, then later to find out I was looooost in translation and based an entire conversation thinking one thing, them knowing one thing. Man. I do wonder if sometimes people just ended our conversations abruptly because they thought i was loco? I even had some people who had the gall to tell me I was stupid (apparently they didn’t acknowledge I had Usher’s) and call me low-function. Jeepers creepers. I look forward to more hilarious lost-in-translation moments, hopefully they’ll think the same, too. Us Usher’s know how it is.

I was googling images on Tunnel Vision and Usher Syndrome when I came across these and a cup of sugar.

 

so dolly the sheep had Usher’s, too? rotfmao

 

to be this young and think he’s a piece of beefcake would surely mean one has tunnel vision, ha

at a degree of approximately 10 degrees out of 90 each eye, this is what we see (without the black…. it’s entirely an invisible field)

 

the biology of usher syndrome

 

***********************************

i find these excerpts from Usher Life UK to be bittersweet and hilarious

 

Dear Santa, I have Usher…

By members of usherLife egroup

What do we want for Xmas? When we were kids, we would write a “wish list” to Santa, but for Usher people of all ages, this seems to linger on. They were asked, via the UUK egroup, what they wished for Xmas to help with their Ushers. Obviously a cure/treatment for our RP is on the top of our wish list, but this won’t happen for a while, so that’our “in the meantime” wish list…

HERBIE USHER CAR
The name says it all, doesn’t it? We would LOVE to have an automatic driven car to take us anywhere where we want to relieve the pressure from our partners, friends, etc.

SUPER USHERVISION SPECTACLES
One of our most popular wish - a super, sexy and thin spectacles that can see in the dark, magnify in/out to read small print, train departure boards, etc. Also auto-lens adjustment to enable us to adjust to the quick light/dark conditions. And on-lens flashing warning signs of incoming people, small children, objects, traffic, etc. An every Usher’s dream gadget…

ACCESSIBLE MOBILE PHONES
One of the most frustrating things about the advancing technology of mobile phones is by throwing in everything from built-in digital cameras to kitchen sinks into one little device is that the LCD screen is STILL inaccessible for many of us. We desperately NEED font/size adjustment, inversion of background into a negative mode (white text on black background), magnifying modes to be able to read the irritatingly small icons and “fixed” text as well as reading SMS messages. Come on, you mobile phone manufacturers, we need those accessible features now!

INSPECTOR GADGET HAT
If you’ve seen the cartoon series and the film, then you’ll know what the Closeau-type hat can do - bring out flashing warning signs, mirrors, lights and maybe a robotic hands to do hands on communication.

MAGIC (WHITE) CANE
An invisible (white) cane that has the magical power to divert people from crashing into us and also divert cars, buses and lorries from running us over.

SMART USHER SHOES
Shoes with sensors to warn and stop us falling down steps, or in manholes, or tripping over things and bumping into small children. Also could help with crossing roads.

ACCESSIBLE TV
TV with the facility, via remote control, to configure subtitles - font, size and position.

SMART GUIDE DOG
One of the key issues about Usher and deafblind people who have a guide dog is that they are not trained as hearing dogs for the deaf, so they would love to have a “smart” guide dog that can do BOTH roles and maybe do a bit of hands on… sorry paws on, communication?

MOVE OVER SEE HEAR!
BBC to axe See Hear! in favour of Usher See!. Say no more…

ITEM FINDER
A device that enables us to find things around the house such as TV remote controls, pens, coins… and maybe partners who are hiding from us!

*****************

I have one of my own!

Lost In Translation

When one is afflicted with Usher’s, at one point the 3-D dimensions slowly disappear and we are disillusioned on what we think we understand and what is real.

I often mistake these words:

diet for dick. Are you going ON a dick? (me: gasp! Have you been in my mind recently? Them: Oh, you seemed to be desperate to be into the thing. Me: *blushing* well, it’s not like i can put out an classified ad for a dick… Them: Oh my god, Christine. It’s DIET not dick, you’ve got a diiiiirty mind.)

cookie for cocaine: this is a very blurred, white line sometimes, no pun intended. ( Them: Would you like some cocaine? Me: I don’t do those kind of stuff, way too dangerous. Them: What’s so dangerous about them? Me: I fear I’ll become delusional, a bag of anxiety, addicted and desperate. Them: You just had one an hour ago and you don’t look like that! Me: an hour ago…? I didn’t sniff a line! Check my nostrils… Them: laff, laff, laff. *stuffing a cookie in my protesting, open mouth.)

there’s way TOO many moments in my Usher life where I’ve gone hours thinking we had a conversation about that particular thing, then later to find out I was looooost in translation and based an entire conversation thinking one thing, them knowing one thing. Man. I do wonder if sometimes people just ended our conversations abruptly because they thought i was loco? I even had some people who had the gall to tell me I was stupid (apparently they didn’t acknowledge I had Usher’s) and call me low-function. Jeepers creepers. I look forward to more hilarious lost-in-translation moments, hopefully they’ll think the same, too. Us Usher’s know how it is.

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