[Blindtlk] non 24

[Steve Jacobson]

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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