[nfb-talk] A little concerned about this newdrug aimedat totally blind population

Sun Feb 2 11:09:31 UTC 2014

Many adults with attention deficit disorder react that way when they drink 
coffee. I have the same reaction. I can drink a pot of coffee and go to 
sleep. Ritalin commonly used to treat ADHD (attention deficit hyperactivity 
disorder) in children which stops working when a child reaches puberty is 
used by adults on the streets as a stimulant and Ritalin pills are commonly 
sold on the streets as a form of speed.
Chuck
----- Original Message ----- 
From: "Mike Freeman" <k7uij at panix.com>
To: "'NFB Talk Mailing List'" <nfb-talk at nfbnet.org>
Sent: Saturday, February 01, 2014 4:04 PM
Subject: Re: [nfb-talk] A little concerned about this newdrug aimedat 
totally blind population


> That'll do it for a lot of people. (grin)
>
> I, on the other hand, can schlep down several cups of coffee and go right 
> to
> sleep.
>
> Weird, eh?
>
> Mike
>
>
> -----Original Message-----
> From: nfb-talk [mailto:nfb-talk-bounces at nfbnet.org] On Behalf Of Larry D.
> Keeler
> Sent: Saturday, February 01, 2014 3:29 PM
> To: NFB Talk Mailing List
> Subject: Re: [nfb-talk] A little concerned about this new drug aimedat
> 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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>>>m
>>
>>
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>>>0visi.com
>>
>>
>>
>>
>>
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