[Blindtlk] ernestly seeking advice about sleep irregularities

Tue May 25 13:13:24 UTC 2010

Dear All,
 FYI, I received a message from someone claiming to be a representative of 
Vanda Pharmaceuticals asking that I circulate a message seeking totally 
blind participants in a sleep study research project. This person claimed 
that they were "donating $25, up to $50,000 to organizations service the 
blind. When I asked which organizations, they asserted that the NFB was one 
of the organizations. I spoke with Monica Blount at the national office 
yesterday and she said she was unaware of any such arrangements but would 
check it out and get back to me. I haven't heard anything yet.

Fraternally yours,
Marion Gwizdala, President
National Association of Guide Dog Users
National Federation of the Blind
813-598-7161
President at NFB-NAGDU.ORG
HTTP://NFB-NAGDU.ORG

----- Original Message ----- 
From: "Graves, Diane" <dgraves at icrc.IN.gov>
To: "'Blind Talk Mailing List'" <blindtlk at nfbnet.org>
Sent: Tuesday, May 25, 2010 8:32 AM
Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities

> Hi Pete,
>
> I would tend to agree. I think that, when a person is blind, there is a 
> tendency to want to relate almost any problem they have to blindness. This 
> is true of medical concerns as well as others. It' just like the blindness 
> is the only thing they see.
>
>
>
> Diane Graves
> Civil Rights Specialist
> Indiana Civil Rights Commission
> Alternative Dispute Resolutions Unit
> 317-232-2647
>
> "It is service that measures success."
> George Washington Carver
>
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> -----Original Message-----
> From: blindtlk-bounces at nfbnet.org [mailto:blindtlk-bounces at nfbnet.org] On 
> Behalf Of Peter Donahue
> Sent: Monday, May 24, 2010 8:20 PM
> To: Blind Talk Mailing List
> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>
> Good evening everyone,
>
>    The whole idea of blindness effecting one's sleep cycles is something I
> find distasteful! I had trouble sleeping when I was growing up and no one
> offered to investigate further It was only after an unfortunate incident 
> at
> the 2001 national convention that lead to the proper diagnosis of my Sleep
> Apnea. It was too little too late! People probably figured that blindness
> caused one to have irregular sleep patterns ignoring the fact that there
> could be bonafied  underlying sleep disorders. Now that my Sleep Apnea is
> being properly treated I feel great and things are much better. I just 
> wish
> it could have been discovered when I was much younger.
>
>    It is for this reason that I'm very concerned about these sleep 
> research
> projects being done on blind persons to determine if blindness does indeed
> effect one's sleep-wake cycles and the rest. I'd like to know if routine
> sleep studies are done on these folks to rule out sleep disorders before
> these researchers persue their whims. If they're failing to do this their
> research is definitely flawed and blind people with undiagnosed sleep
> disorders will pay the price. For that reason this house won't go near 
> them
> with a ten-foot pole!
>
> Peter Donahue
>
> ----- Original Message ----- From: "Alan" <awheeler at neb.rr.com>
> To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
> Sent: Monday, May 24, 2010 4:39 PM
> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>
>
> Very good idea. I can speak from experience on the sleep apnea.
>
> ----- Original Message ----- 
> From: "Cindy Handel" <cindy425 at verizon.net>
> To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
> Sent: Monday, May 24, 2010 4:21 PM
> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>
>
>> Have you talked with your doctor about this?  You could have sleep apnea
>> and
>> need some treatment for the condition.  I'm not sure that you can
>> automatically connect your difficulty in sleeping to your blindness.  I'd
>> suggest that you speak with a doctor about it.
>>
>> Cindy
>> ----- Original Message ----- 
>> From: "Robert J Smith" <rsmith247 at csc.com>
>> To: <blindtlk at nfbnet.org>
>> Sent: Monday, May 24, 2010 4:11 PM
>> Subject: [Blindtlk] ernestly seeking advice about sleep irregularities
>>
>>
>> Hi all.  I am a person who is totally blind with prosthetic eyes.  You
>> will see why I mention this right at the beginning later in this message.
>> I am ernestly seeking advice from other totally blind persons who suffer,
>> or have suffered from sleep irregularities.  I take Melatonin which helps
>> the problem somewhat but it could be better.  Without Melatonin, I would
>> sleep for two maybe three hours per night, wake up, and stay awake the
>> rest of the night.  With Melatonin, I sleep about five hours a night but
>> still get sleepy sometimes during the day.  Any ideas as to how I can
>> improve my alertness during the entire day?  Cafinated coffee doesn't do
>> it.  I can sit and yawn and get drowsy while drinking it.  I take one
>> Melatonin tablet at night.  Should I possibly take two?  Should I take
>> something to keep me alert during the day instead of focusing on the
>> night?  I am open to all suggestions!  Of course I know that nobody can
>> prescribe anything on this list.  I have heard that blind persons who 
>> have
>> no light perception have been known to have sleep irregularity problems.
>> This seems to follow with me because when I was a kid I had light
>> perception.  I would sit in front of a lamp in my bedroom when doing my
>> homework first to be just like my sighted younger brother when he did his
>> homework, second because I liked actually seeing something since I had
>> both real eyes at that point.  When I was a kid, I did not have sleep and
>> alertness troubles.
>>
>> Thanks much in advance,
>>
>> Robert Smith
>>
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