[Blindtlk] non 24

[Ericka]

I agree with you too. It makes it sound like we aren't working because of our sleep problems. Our sleep problems are the least of our troubles. And yes, each person is not an individual and as I said, medicine is an art more then it wants to admit. I think what you have said here Gary, that people need to step back and look at the whole picture is true. Life has so many variables and cannot be put into black-and-white print words well. I am grateful that people are addressing their sleep issues and are able to get help. That's the more important thing with so many people unable to obtain medical coverage whether sighted or not.

Ericka Short
"Friends are like flowers in the garden of life"

Sent from my iPhone

> On Jan 6, 2016, at 3:06 PM, 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.
>> 
>> 
>> 
>> _______________________________________________
>> blindtlk mailing list
>> blindtlk at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/blindtlk_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
>> blindtlk:
>> http://nfbnet.org/mailman/options/blindtlk_nfbnet.org/steve.jacobson%40visi.
>> com
>> 
>> 
>> 
>> _______________________________________________
>> blindtlk mailing list
>> blindtlk at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/blindtlk_nfbnet.org
>> To unsubscribe, change your list options or get your account info for blindtlk:
>> http://nfbnet.org/mailman/options/blindtlk_nfbnet.org/k7uij%40panix.com
> 
> _______________________________________________
> blindtlk mailing list
> blindtlk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindtlk_nfbnet.org
> To unsubscribe, change your list options or get your account info for blindtlk:
> http://nfbnet.org/mailman/options/blindtlk_nfbnet.org/dotwriter1%40gmail.com