[Blindtlk] Extreme photophobia/blindness only in light?
Chris Nusbaum
dotkid.nusbaum at gmail.com
Mon Mar 26 01:34:57 UTC 2012
Great suggestions! Sounds like a good chapter project!
Chris Nusbaum
Email and Google Talk/Keychat (on the BrailleNote) ID:
dotkid.nusbaum at gmail.com
Skype: christpher.nusbaum3 or search for Chris Nusbaum
"The real problem of blindness is not the loss of eyesight. The
real problem is the misunderstanding and lack of education that
exists. If a blind person has the proper training and
opportunity, blindness can be reduced to a mere physical
nuisance."
-- Kenneth Jernigan
----- Original Message -----
From: "Peter Donahue" <pdonahue2 at satx.rr.com
To: "Blind Talk Mailing List" <blindtlk at nfbnet.org
Date sent: Fri, 23 Mar 2012 10:03:49 -0500
Subject: Re: [Blindtlk] Extreme photophobia/blindness only in
light?
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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