[Blindtlk] Extreme photophobia/blindness only in light?

Fri Mar 23 15:03:49 UTC 2012

Good morning David and everyone,

    If he's having difficulty qualifying for services from Florida's agency 
for the blind why not a few federationists pull together and help this guy 
learn some blindness skills to enable him to get his life back to normal 
during daylight hours? Such an effort would be similar to what was done in 
Utah in 2005 when a team of Utah federationists were invited by the 
producers of a program called "Three Wishes" to teach a blind woman some 
techniques to enable her to maintain her independence and to care for their 
baby. At least you won't need to build this guy a park. If memory serves me 
right I believe the park was a gift to this couple from the town where they 
lived at the time. god only knows whatever happened to them.

    It can take years to change legislation and to modify policies of VR 
agencies but it would  not be too complicated to find out exactly what this 
guy needs and organize a team of members to assist him. Perhaps some of the 
blindness products vendors might donate some equipment to help restore his 
independence and get his life back to normal. And by all means invite him to 
come to next year's national convention being that it's going to be back in 
Orlando. All the best.

Peter Donahue

----- Original Message ----- 
From: "David Evans" <drevans at bellsouth.net>
To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
Sent: Friday, March 23, 2012 9:41 AM
Subject: Re: [Blindtlk] Extreme photophobia/blindness only in light?

Dear Peter,

A few years back, there were some people who were trying to get the
definition broadened to include neurological conditions that rendered people
"legally Blind."
I met a lady who was in the first Gulf War as a captain in the Army, who
developed a neurological condition the prevented her from being able to keep
her eyes open and to be able to focus her eyes together.
As she did not meet the current definition of legally blind, she could not
get services from the state Division of Blind Services, but only the VA.
These people are few and far between, but that doesn't meet they should be
excluded from services or from protection under the Law.
I think that the Law should be a bit more flexible and inclusive of such
rare cases.

David Evans, NFBF and GD Jack.
----- Original Message ----- 
From: "Peter Donahue" <pdonahue2 at satx.rr.com>
To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
Sent: Thursday, March 22, 2012 12:47 PM
Subject: Re: [Blindtlk] Extreme photophobia/blindness only in light?

> Hello Rene and everyone,
>
>    The situation you describe matches the gentleman Dr. Jernigan describes
> in his article "A Definition of Blindness."He told a group of high school
> students of an individual who had severe headaches and eye pain when he
> ventured in to bright light and had to walk around with his eyes closed.
> Like this individual that man's quality of life was adversely effected.
> Although he couldn't be classified as legally blind he was considered
> functionally blind due to his  need to use alternative techniques to
> maintain his independence and maintain his quality of life. I'm guessing
> that he learned Braille, learned to travel with a white cane during the
> daylight hours, and learned many other blindness skills to allow him go
> function normally during daylight hours. You might want to give this
> family
> a copy of that article or send him the URL so they can read or listen to
> it
> themselves. He'll know that he's not alone and that there's value in
> networking with other blind persons who can offer assistance. Hope this
> helps.
>
> Peter Donahue
> ----- Original Message ----- 
> From: "Rene Harrell" <rjharrell at gmail.com>
> To: <blindtlk at nfbnet.org>
> Sent: Thursday, March 22, 2012 8:09 AM
> Subject: [Blindtlk] Extreme photophobia/blindness only in light?
>
>
> Hi all!
>
> I have recently become friends with a woman whose husband has a medical
> condition that essentially makes him extremely photophobic. He gets
> debilitating, crippling migraine pain and becomes completely blind/loses
> all vision when he is exposed to light of varying intensity, but
> especially
> direct sunlight. He stays inside all day long. If he has to go somewhere
> during the day, his wife needs to drive, and he sits in the back with the
> tinted window wearing a sleep mask. At night, he can drive and use his
> vision outdoors. He can also use his vision inside with all the curtains
> drawn etc. etc. to block out outside light, but he's in chronic pain from
> the constant sources of light that break through.
>
> Currently, he is unable to work or leave his house during the day. He
> takes
> care of their two children while his wife works, but they can't ever leave
> the house during the day to even hang out and play in the yard, and I
> think
> it's starting to wear on them all. While he is not legally blind,
> functionally he is in a lot of respects. His quality of life is suffering
> significantly and they're going this alone. I asked if they would be
> willing to let me reach out and see if I could connect them with some
> people and resources, and they said yes. So, I wanted to reach out here
> and
> see if anyone has a similar light sensitivity issue that would be willing
> to connect with him? I really think he could use a mentor that could start
> encouraging him to think in nonvisual ways/techniques that could help him
> think outside the box and enhance his quality of life, and by extension
> the
> quality of life for his whole family.
>
> Is there anyone on here that would be willing to share their contact
> information with me to give to him?
>
> Thanks so much!
> Rene--- Mom to five wonderkids, including Miss Clare age 10, Retinopathy
> of
> Prematurity
>
> -- 
> " I may not have gone where I intended to go, but I think I have ended up
> where I needed to be."
> -- Douglas Adams
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