[Blindtlk] non 24

[Mike Freeman]

<<HUGE GRIN>>

Mike


-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Arielle Silverman via blindtlk
Sent: Wednesday, January 06, 2016 1:14 PM
To: Blind Talk Mailing List
Cc: Arielle Silverman
Subject: Re: [Blindtlk] non 24

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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