[nfb-talk] A little concerned about this new drugaimedat totally blind population

Sun Feb 2 00:36:08 UTC 2014

Yes, caffeine is an absolutely wonderful thing.  One time on a flight from 
Cleveland to Sacramento I did nothing but swill coffee all the way.  I look 
forward to that giant cup of Tim Horton's coffee on Sunday morning after 
church.  For those of you who aren't familiar with it, Tim Horton's is 
actually a Canadian company, but they are all over Maine and apparently some 
of the other northern border states as well.  They are very much like Duncan 
Doughnuts, with pastries, breakfast sandwiches, and great coffee.  However, 
getting back to the main thread, I have learned not to drink coffee after 
early afternoon, because for me it will interfere with sleep at night if I 
am not careful.

Mark Tardif
Nuclear arms will not hold you.
-----Original Message----- 
From: Larry D. Keeler
Sent: Saturday, February 01, 2014 6:28 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drugaimedat 
totally blind population

My sleeping issue is that I love caffine! Coffee, pop and chocolate!
Yummm!!!
----- Original Message ----- 
From: "Steve Jacobson" <steve.jacobson at visi.com>
To: "NFB Talk Mailing List" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 5:23 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
totally blind population

> Hi,
>
> I have also been uneasy about all of this, but I recognize I don't know 
> all there is to know about all this.  Because One is blind and doesn't 
> seem to have a sleep problem like this doesn't mean nobody does.
> Because ablind person has a sleep disorder doesn't mean it is related to 
> blindness, either.  I have seen firsthand where sleep clinics dealing with 
> a blind person assume the problems are related to blindness
> without running normal tests.  I've seen doctors actually get excited like 
> little kids when they think they have a blind person with a sleep problem. 
> It also appears that the drug Vanda has has now been
> approved and was put on a sort of fast track because it deals with a rare 
> and severe condition.  Blind people will have a disservice done if this 
> drug is prescribed before a thorough evaluation is performed to
> analyze serious sleep disorders.  I also think that painting blind people 
> in their mass-marketing efforts as struggling to stay awake all day is not 
> helpful in our efforts to get jobs.  There have been other marketing
> efforts, though, where people have not been paid, so I don't know if that 
> is Vanda or not.
>
>
> I will forward the note I received regarding the approval of this drug. 
> I'm afraid I had to laugh a little when I saw that one side-effect is 
> drousiness.  I want to be clear, though, that I do not claim that there 
> are
> not people with serious disorders who may be helped.  I also can't say 
> that I know for certain that this particular disorder doesn't exist.  I 
> just think we need to be sure that we are not stereotyped into this
> disorder in a way that leaves other disorders undiagnosed.  We also need 
> to recognize that for such research to be real accurate, a control group 
> who is not blind but shares other similarities, such as the same
> unemployment rate, would need to have been used, and I have not been 
> convinced that was done in the reading I've done, but I don't claim I've 
> read every word of every study.
>
> Best regards,
>
> Steve Jacobson
>
> On Sat, 1 Feb 2014 13:48:39 -0800, Mike Freeman wrote:
>
>>Beth:
>
>>I absolutely agree with you! Although a few blind folks may have a sleep
>>disorder (I know of one such person), so do many sighted people and it is 
>>my
>>experience that when most blind persons with sleeping problems are put on 
>>a
>>regular schedule (i.e., no odd hours, working a nine-to-five day, etc.) 
>>and
>>get enough vigorous exercise, either on the job or as a program, their 
>>sleep
>>problems disappear. For example, I know a lady who used to have sleep
>>problems when she wasn't working. But when she started working a regular 
>>day
>>at a Head Start program, up and down all day with the kids, miracle of
>>miracles, her sleep problem disappeared!
>
>>So I'm very much a doubter. Trouble is that when I voice such skepticism
>>with much vigor, I get a lot of push-back from other blind people (both in
>>ACB and NFB),maintaining I don't know what I'm talking about.
>
>>Also, I know a couple of people who are participating in their so-called
>>studies and haven't received payment yet.
>
>>Can you say "snake-oil"?
>
>>Mike Freeman
>>
>
>>-----Original Message-----
>>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of
>>beth.wright at mindspring.com
>>Sent: Saturday, February 01, 2014 1:33 PM
>>To: nfb-talk at nfbnet.org
>>Subject: [nfb-talk] A little concerned about this new drug aimed at 
>>totally
>>blind population
>
>>Hi, folks. Just wanted to see if I could get the scoop on this new drug
>>that's supposed to correct the sleep/wake cycles in people who are totally
>>blind. I'm totally blind myself, but haven't had any problems with my 
>>sleep
>>patterns, so, even though I've seen lots of ads for it on 
>>blindness-related
>>web sites and know that they've been a major sponsor at our conventions, I
>>wasn't all that concerned about it one way or the other. As far as I can
>>tell, their ads have been pretty tastelike and their recruitment 
>>techniques,
>>fairly low key. Lately, though, they seem to be ramping up the message. 
>>From
>>what I can tell, they now seem to be claiming that this sleep/wake thing 
>>is
>>a serious problem, affcting around eighty thousand people in the US, the
>>majority ofthe totally-blind population. I think that's deceptive. I know
>>that they need to reach the largest number of people possible in order to
>>make a sufficient profit, but I don't think they should exaggerate the
>>seriousness of this s
>> o-called disorder.
>
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>
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>
>
>
>
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