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

Steve Jacobson steve.jacobson at visi.com
Sun Feb 2 06:20:23 UTC 2014


Loren,

I want to be clear that I don't say that this could not exist.  I am concerned, though, that this will be seen as a quick fix for blind people who have sleep 
disorders without trying to determine if there might be other factors.  I sometimes have trouble sleeping, and it may not be what you experience, but I tried 
Melatonin.  I experienced many of the side-effects that are shown for this drug.  I found the side-effects listed on the Mayo Clinic site on the internet after I 
had experienced them and started to wonder.  Before I started, everybody told me that that melatonin is natural, your body just makes less of it when you 
get older.  I concluded that maybe there is a reason that it stops making so much of it.  <smile>  Since this is a new drug and there will be a patent on it, 
people need to be very certain that it truly does more than melatonin does.  I just think we have to try to be analytical about this and be sure that we are 
going into all of this with are eyes open.  If you care to share, what about your sleep do you believe is truly unique to your blindness?  Has a sleep study 
been done without considering blindness to be sure there are not other causes?  It could be that this drug might be helpful to everybody once it is 
understood.  

Best regards,

Steve Jacobson

On Sat, 1 Feb 2014 17:24:28 -0600, Loren Wakefield wrote:

>I am going to go against the flow here.  To say this is not a problem is for
>lack of a nicer word, stupid .  If you have it, you just cannot function
>when you are in the worst of it.  If the NFB is against this known fact, it
>should give back the funds it got for the research from it.  My wife and I
>both took the survey; so,I know they received at least $50.00 from it.  If
>it does not affect you, count your blessings.  It's more than not being able
>to stay on a regular sleeping schedule.  I'm sorry if this sounds wrong.
>But this is sounding like because we are members of NFB, we are super humans
>and can't be bothered by anything.  I know way to many in the NFB to think
>that we do not care about our fellow human beings.  If you are not currently
>bothered by it, be glad and pray you never are.  

>Loren  



>-----Original Message-----
>From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of David
>Andrews
>Sent: Saturday, February 01, 2014 5:05 PM
>To: NFB Talk Mailing List
>Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
>totally blind population

>hMike:

>I won't say you don't know what you are talking about -- but most of your,
>and other people's info is anecdotal.  I have a 5 day a week job, and make
>it in most days (smile,) but have sleep problems.  So, I am sure you are
>right in some cases, but not all.

>Dave

>At 03:48 PM 2/1/2014, you 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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