[Blindtlk] non 24

Wed Jan 6 21:13:42 UTC 2016

To date, I think the only time I have ever nodded off in public was at
NFB convention the year I was a scholarship winner and had been having
too much fun the night before.
Arielle

On 1/6/16, Mike Freeman via blindtlk <blindtlk at nfbnet.org> wrote:
> Steve:
>
> I completely agree with you. I find it somewhat odd that the pharmaceutical
> firm put so much effort into advertising and marketing to such a small
> population. Additionally, I find it horrifying when I hear ads purporting to
> come from blind people which say that a blindness – related illness causes
> them to fall asleep at work. What an example of the capability of the
> blind!!!
>
>
>
> Mike Freeman
>
>
>> On Jan 6, 2016, at 11:49, Steve Jacobson via blindtlk
>> <blindtlk at nfbnet.org> wrote:
>>
>> Gary,
>>
>> For a long time, I've had a very negative reaction to sleep study
>> conclusions that involve blind people.  In the past, there has been a
>> history of even educated people thinking of blindness as living in the
>> dark
>> and feeling that there must be negative effects of constant darkness.  It
>> seemed sometimes that they would go to great lengths to prove what they
>> already knew just had to be true.  Over the years, I have had to adjust my
>> original position some partly because people I trust, such as yourself,
>> have
>> felt that there may be a connection between blindness and sleep
>> irregularities.  Still, I read statements even in this current discussion
>> that raise red flags to me, and there are issues with the ad campaigns
>> that
>> really puzzle me.  Perhaps some of the questions I have are answered
>> somewhere and I just have not gotten to them.  Here are some examples.
>>
>> There always seems to be a few people who use the logic "I am blind, I
>> have
>> a sleep problem, therefore blind people have a sleep problem."  It isn't
>> put
>> that simply or directly, but there is often a sense that any sleep problem
>> we have must be connected to blindness.  I find myself wondering if there
>> is
>> really an understanding of the depths of sleep problems that exist among
>> sighted people.  I find that more than once when the subject comes up that
>> persons who are sighted acknowledge sleep difficulties.  I know of sighted
>> people who have fallen asleep at their desks, for example.  When one looks
>> at the marketing of sleeping aids, clearly sleep is a fairly widespread
>> problem.  Of course, I am not claiming that this disproves Non 24, but it
>> means we need to keep what we experience in perspective.
>>
>> It is my understanding that non 24 can apparently be diagnosed by the
>> presence of a chemical in one's blood.  Therefore, I accept that this
>> condition exists and can be diagnosed accurately.  However, given that
>> sleep
>> problems are encountered by sighted people, and given that it is likely
>> that
>> many of them do not have non 24, how can it be assumed that if a blind
>> person has non-24 that it is the only sleep issue?  Do we know that the
>> Vanda drug might not be correcting other issues, issues that sighted
>> people
>> might have, for example?  In other words, whether the Vanda drug works or
>> not, how do we know that Non 24 is playing the major role that is being
>> publicized?
>>
>> We know that each of us can react differently to many things.  If we have
>> non-24, how is it determined whether the symptoms justify treatment?  Many
>> Gary,
>>
>> For a long time, I've had a very negative reaction to sleep study
>> conclusions that involve blind people.  In the past, there has been a
>> history of even educated people thinking of blindness as living in the
>> dark
>> and feeling that there must be negative effects of constant darkness.  It
>> seemed sometimes that they would go to great lengths to prove what they
>> already knew just had to be true.  Over the years, I have had to adjust my
>> original position some partly because people I trust, such as yourself,
>> have
>> felt that there may be a connection between blindness and sleep
>> irregularities.  Still, I read statements even in this current discussion
>> that raise red flags to me, and there are issues with the ad campaigns
>> that
>> really puzzle me.  Perhaps some of the questions I have are answered
>> somewhere and I just have not gotten to them.  Here are some examples.
>>
>> There always seems to be a few people who use the logic "I am blind, I
>> have
>> a sleep problem, therefore blind people have a sleep problem."  It isn't
>> put
>> that simply or directly, but there is often a sense that any sleep problem
>> we have must be connected to blindness.  I find myself wondering if there
>> is
>> really an understanding of the depths of sleep problems that exist among
>> sighted people.  I find that more than once when the subject comes up that
>> persons who are sighted acknowledge sleep difficulties.  I know of sighted
>> people who have fallen asleep at their desks, for example.  When one looks
>> at the marketing of sleeping aids, clearly sleep is a fairly widespread
>> problem.  Of course, I am not claiming that this disproves Non 24, but it
>> means we need to keep what we experience in perspective.
>>
>> It is my understanding that non 24 can apparently be diagnosed by the
>> presence of a chemical in one's blood.  Therefore, I accept that this
>> condition exists and can be diagnosed accurately.  However, given that
>> sleep
>> problems are encountered by sighted people, and given that it is likely
>> that
>> many of them do not have non 24, how can it be assumed that if a blind
>> person has non-24 that it is the only sleep issue?  Do we know that the
>> Vanda drug might not be correcting other issues, issues that sighted
>> people
>> might have, for example?  In other words, whether the Vanda drug works or
>> not, how do we know that Non 24 is playing the major role that is being
>> publicized?
>>
>> We know that each of us can react differently to many things.  If we have
>> non-24, how is it determined whether the symptoms justify treatment?  Many
>> people have sleep difficulties that they address successfully through
>> various means, and it would seem reasonable to assume that in some cases
>> other approaches might be adequate.  How is this accommodated?
>>
>> We have become polarized to some degree around this issue.  Those of us
>> who
>> are somewhat skeptical are often seen as clearly not having a problem and
>> therefore not understanding that others may not be so fortunate.  The
>> questions we raise are discounted.  Well, I don't raise questions to prove
>> that anyone does not have a sleep problem.  I also do not maintain that
>> the
>> Vanda drug may not help some people, maybe even many people.  What
>> concerns
>> me is that an environment is being created that more or less funnels
>> people
>> into this particular solution when there are valid questions.  Also, the
>> picture painted by the ad campaign is pretty bleak.  I just don't see 70%
>> of
>> us struggling to stay awake at our desks even though some of us do from
>> time
>> to time.  I just think we need more answers than we have, and they need to
>> come from objective sources that don't stand to gain or loose depending
>> upon
>> the answers.
>>
>> To those who have found the Vanda solution to be the answer and can afford
>> it, I am sincerely glad it has worked out.  Nothing said here is meant to
>> deny the fact that this drug may be a welcome solution in some or even
>> many
>> cases.  It just seems to me that there are unanswered questions, and a
>> tendency to jump on the bandwagon while remaining silent about the ad
>> campaign.
>>
>> Best regards,
>>
>> Steve Jacobson
>>
>> -----Original Message-----
>> From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Gary
>> Wunder
>> via blindtlk
>> Sent: Tuesday, January 05, 2016 5:36 PM
>> To: 'Blind Talk Mailing List' <blindtlk at nfbnet.org>
>> Cc: Gary Wunder <gwunder at earthlink.net>
>> Subject: Re: [Blindtlk] non 24
>>
>> I have enjoyed reading the comments about non-24, and when I 1st heard
>> about
>> the efforts of a pharmaceutical company to market to blind people, I was
>> suspicious. I think I was also a bit defensive, assuming that the worst
>> would happen.
>>
>> I suspect that I suffer from non-24. There are times when I have to work
>> very hard to stay awake, even when I find things around me to be
>> interesting
>> and thought-provoking. There are times when at 4 o'clock in the morning I
>> am
>> totally wide-awake and mad about it. Then I will be walking through a
>> store
>> or working at my desk or even exercising, and I find that I am exceedingly
>> tired. This suggests to me that I do have a body clock and that
>> periodically
>> that body clock gets off.
>>
>> I relate to the comments about being embarrassed while at work and
>> unintentionally falling asleep. It does not reflect well on any employee
>> when this happens, and I admit that more than once I have been embarrassed
>> about nodding off at times when I was paid to be awake. I have developed a
>> number of strategies for combating this, but I can't claim that they work
>> 100% of the time. If I catch myself in time, I can always stand up, pace,
>> do
>> toe touches, or engage in other activities that I can blame on needing to
>> stretch my legs or my sore back. Sometimes they too require attention, but
>> it is more likely that I am trying to ensure that I stay awake.
>>
>> I don't know that this adds anything, but I do believe that the subject is
>> important enough that I am likely to put it on our convention agenda here
>> in
>> Missouri. If non-24 is real, we should not try to run from it. If the
>> marketing is not what it should be, we should not run from that either.
>>
>>
>>
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>>
>>
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>
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