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

Sun Feb 2 23:05:32 UTC 2014

Steve, I could not do the study because of sleep apnea and other medicals
issues.  My wife is the one who participated.  It has helped her
tremendously.  

It's hard to explain.  But it's more than not sleeping correctly.  When she
is in a really bad period of this, the amount of sleep she gets or does not
get is of no difference.  She cannot  function.  She can't sleep restfully.
And it is not a constant thing.  As I said, I can't really put it in to
words.  I do think I have a slight case of it.  But again, I do not know
that.  

I don't impress easily; however, I have been impressed with her treatment
during this study.  And like I said, the drug has helped her tremendously.
The blind are just like the rest of society.  So I would be very surprised
if there aren't any of us that will just use this diagnosis as an excuse for
not getting of their rear end and joining society.  That problem is not
unique to the blind.  But as I said in another post, she lives a hectic life
right now, and could not pull it off if she did not have this medicine.  

Loren  

-----Original Message-----
From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Steve
Jacobson
Sent: Sunday, February 02, 2014 12:20 AM
To: NFB Talk Mailing List
Subject: Re: [nfb-talk] A little concerned about this new drug aimed at
totally blind population

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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