[nfb-talk] A little concerned about this new drug aimed attotally blind population

Mike Freeman k7uij at panix.com
Sun Feb 2 00:06:02 UTC 2014


Yeah. And Steve Jacobson had to be quite firm to get doctors to test his
wife for sleep apnea rather than going off on a tangent about her blindness.

Mike


-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Larry D.
Keeler
Sent: Saturday, February 01, 2014 3:27 PM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed
attotally blind population

yes Mike. I'm a little concerned about folks who hear this thing is good and

assume 1. that all blind folks have sleep disorders, which is not true. 2. 
That if us blind folks do have a sleep disorder folks will automatically 
assume that's circadian related. Lack of sleep can be caused by so many 
things that its not always that. For example too much caffine, odd sleeping 
habits or just too much energy. This along with other clinical reasons may 
really be the primary issues. Even in the blind population, folks who have 
th3e disorders in which these medications work assume that because we are 
also blind we must have it as well! Oh, interesting thaught, even if you 
don't think you are taking caffine, think about chocolate, its in there!
----- Original Message ----- 
From: "Mike Freeman" <k7uij at panix.com>
To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 4:48 PM
Subject: Re: [nfb-talk] A little concerned about this new drug aimed 
attotally blind population


> 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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