[blparent] Has anybody heard these Learn More 924 commercials on the radio?

Sat Jan 11 18:51:49 UTC 2014

I find research interesting and would like to know more about the connection between total blindness and sleep disorder. The truth is that such a study would be difficult to conduct because of all the difficulties in coming up with appropriate control groups. When Vanda was doing this research and looking for participants I did not contact them because I have several other things that effect my sleep that I know are not related to blindness, so I just assumed they would not take me. Apparently I should have collected my $50, or whatever they were paying. :)
I think the price we are paying in negative public perception from these commercials is too high for us. Vanda is probably banking on doctors prescribing this to sighted people to make up for the expenses involved in bringing the drug to market given what a small target market this applies to. 

I would also be interested to know what the connection is with the NFB leadership that brought this group to the national conference.

I stand by my belief that we should all consider our blindness as a factor in any sleep issues we are struggling with to the extent that light deprivation may be involved. I think there is a chance that this new medication will only cloud the issue when we are working with medical providers, especially if they see this as the obvious solution.

Sometimes it just comes down to figuring out what works and moving on. The serious medical stuff going on with my son's sleep deprivation were such that we finally focused on what would just make him sleep. He was on a prescription drug that just knocked him out every night for a few hours for about a year, and now he takes a huge dose of melatonin and Benadryl at the same time every night. If I catch him awake in the night, or he is still up hours later, I give him another Benadryl. This is all in addition to the environmental issues we include in his treatment.

Jennifer
-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Robert Shelton
Sent: Friday, January 10, 2014 9:55 PM
To: 'Blind Parents Mailing List'
Subject: Re: [blparent] Has anybody heard these Learn More 924 commercials on the radio?

OK, I built a light box, not for me, but for my sweety (sighted) when we lived in upper Michigan, maybe 12 miles from the Superior shore.  I actually got inquiries from the DEA as to why I was buying full spectrum lights in quantity.  So, the light box worked quite well for those in my family who were dealing with seasonal affected disorder.  When you live in the snow belt of the great lakes, there's no sun from November to April.  

So, my problem with these commercials is that they sweep every blind person into the same dust bin of non-productivity.  Yes, I take melatonin and sleep well most nights.  Melatonin is an inexpensive, OTC solution that works great for me, and apparently lopts of others.  I'm more than just a tad pissed about Vanda sinking money and advertizing into a cure that I don't need, and oh, yes, by the way, trashing blind people with their commercials.  NFB is notoriously sensitive with regard to perceived limitations promulgated by the media.  Where are they on this one?  Just my $0.02.

And, oh yes, SG.  Where is this "old person" crap coming from?

-----Original Message-----
From: Star Gazer [mailto:pickrellrebecca at gmail.com]
Sent: Friday, January 10, 2014 3:47 PM
To: 'Blind Parents Mailing List'
Subject: Re: [blparent] Has anybody heard these Learn More 924 commercials on the radio?

It might help but you're an old person and your symptoms can't be based on just you getting older.  There must be other factors, there are plenty of older folks on the list and they aren't talking about needing a light box.  go get some excersize and you'll feel better.  

-----Original Message-----
From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of Nevzat Adil
Sent: Friday, January 10, 2014 3:59 PM
To: Blind Parents Mailing List
Subject: Re: [blparent] Has anybody heard these Learn More 924 commercials on the radio?

I think some of you misinterpreted my words. I did not say sleep disorder does not exist.
I said it cannot be blamed simply on total blindness. Other factors may be involved. Although totally blind I did not experience sleep disorder in my younger days, but now I do. So aging can be a factor.
Lack of exercise can be another. and one can go on and on.
And what's a light box and what does it do? Would it help someone like me with no light perception?

On 1/10/14, Star Gazer <pickrellrebecca at gmail.com> wrote:
> Jennifer's post is great.
> My problem with the post below hers is that it comes across as if you 
> think anybody who has non24 disorder is just sitting on their asses all day.
> I was diagnosed with gestational diabetes with my current pregnancy. I 
> had two glucose tolerance tests to prove it. As a result, I need to 
> eat differently, and test my glucose several times a day.
> Gestational diabetes has always been around. If not controlled, it can 
> lead to some interesting things, strange behavior in women, (think 
> agigation, too much sleepiness, being very anxious, huge weight gain) 
> not to mention bad impacts to the baby.
> It has only been very recently that pregnant women are tested as a 
> matter of course for gestational diabetes. Many of our moms were not 
> tested because while their symptoms were real and not caused by "crazy 
> pregnant lady" the medical industry hadn't developed the tools and the 
> knowllege base to deal with it. Home glucose meters didn't exist.
> Nobody was real sure what role sugar played and how it was played.
> And, there are still some people that refuse to grasp that gestational 
> diabetes is very real. I was talking with a friend a few weeks back, 
> an older gentleman who told me "I don't believe in that, my wife never 
> had that problem, I think the medical industry just needs something to 
> do". This was n the context of dinner when I told him why I was saying 
> no to a food I'd normally eat and explaining why.
> The midwife I saw yesterday told me that they used to think pregnant 
> women who gained obscene amounts of weight were just eating too much 
> and needed to step away from the table. Some of them probably do, and 
> she readily admitted that. She also said that huge weight gains are 
> often a sign of gestational diabetes and it's how the body is 
> processing or not processing sugar. That can be resolved, but only if you know about it.
> It's fine not to believe in non24 disorder or anything else. That's 
> your choice. Be careful though in expressing those beliefs as you 
> minimize the experiences of people who know something isn't right, and 
> can't quite put their finger on it. And, if you are proven correct, what have you lost?
> I say all this because non24 disorder and the "is it, isn't it" real 
> debate reminds me a lot of women's health issues. Many of them are 
> issues women have experienced and written about for thousands of 
> years, and only now are we realizing that there truly is some medical stuff going on.
>
> -----Original Message-----
> From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of 
> Jennifer Stewart Jackson
> Sent: Friday, January 10, 2014 9:05 AM
> To: 'Blind Parents Mailing List'
> Subject: Re: [blparent] Has anybody heard these Learn More 924 
> commercials on the radio?
>
> You may not believe in this sleep disorder, but several of our list 
> members apparently do as they expressed in responses to this same 
> message that they struggle with it. You have very good points about 
> some other contributing factors, but that does not mean the condition 
> itself is not also a valid one. Melatonin is produced in the body as a 
> natural response to light and is a direct part of our functioning on a
> 24 hour circadian rhythm. Many things can happen to interfere with 
> this natural cycle of course. People who work nights and those who 
> live in regions like Alaska often struggle with the same kind of problems.
> This may be part of why you did not struggle with this condition as a 
> child as you still had some light perception. I think the process has 
> something to do with the retina, so those with prosthetics or severe 
> damage to the retina are going to be strongly effected in this way. If 
> you check out some of the old studies on sensory deprivation, there is 
> a lot of evidence about people developing a 25 to 26 hour rhythm when deprived of light.
>
> As women, we also can have many interruptions to our cycle that are 
> hormonal related.
>
> All of this is why we have a food and drug administration in this country.
> An extensive study had to be done with control groups and other 
> research into the causal aspect of this condition as part of getting 
> the medication approved. Of course if it is labeled a supplement as 
> opposed to a drug, the standards are lower, but they do still have to submit evidence.
>
> Goodness knows what this drug company is going to charge to recoup 
> those expenses either. I think it would be interesting to find out if 
> government dollars funded this research too, but my cynicism about 
> drug corporations and the US Food and Drug folks is definitely straying way off topic.
>
> One of my children has a different sleep disorder and people often 
> just do not seem to get it. We jump through a lot of hoops around here 
> to keep that child even sleeping a few hours every night. Sleep 
> disorders are a real struggle for some people. I know I became a true 
> believer somewhere in the process of the numerous ER trips with an 
> unconscious child who even the paramedics could not wake up when his 
> little body finally just shut down and put him into that deep a sleep.
> At least twice in the middle of the school day. I know I have shared 
> about these s struggles with Henry here before, but I know we have 
> some new people who might want to know why I am so interested in sleep disorders.
>
>
> Jennifer
> -----Original Message-----
> From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of 
> Nevzat Adil
> Sent: Friday, January 10, 2014 7:42 AM
> To: Blind Parents Mailing List
> Subject: Re: [blparent] Has anybody heard these Learn More 924 
> commercials on the radio?
>
> I doubt it if sleep disorder is due to total blindness. I have been 
> totally blind almost all of my life, only light perception during early childhood.
> In my younger days I did sleep very well, but it is only now that I I 
> am older that I sleep only about 4 hours per night.
> I would say that one may have sleep disorder whether blind or not.
> People have this disorder as they get older.
> Another thing that needs consideration is how physically tired one is.
> Many blind people are very sedantic, lacking physical exercise. No 
> doubt, getting sufficient exercise will help one's sleep.  It works for me.
> As far as comercials are concerned, I do not take them seriously, 
> because they are produced to sell a product and not necessarily improve lives.
>
> On 1/10/14, Sharon Howerton <shrnhow at gmail.com> wrote:
>> They are on every day here in Chicago and it is actually non 24.
>>
>> -----Original Message-----
>> From: blparent [mailto:blparent-bounces at nfbnet.org] On Behalf Of 
>> Robert Shelton
>> Sent: Thursday, January 09, 2014 8:30 PM
>> To: 'Blind Parents Mailing List'
>> Subject: Re: [blparent] Has anybody heard these Learn More 924 
>> commercials onthe radio?
>>
>> Yep, it is real, but I have a big problem with the commercials.  The 
>> speaker starts off by saying "You can't see me because this is radio, 
>> and I can't see you because I'm totally blind."  Cute, I suppose, but 
>> cheesy.  Then he goes off into this business about how he can't 
>> concentrate on anything during the day, leaving the clear impression 
>> that it is because of his blindness.  Were I in the position of a 
>> sighted person thinking about hiring someone in a critical position, 
>> and a blind person showed up, that commercial would add to any and 
>> every other misconception about blindness I might have.
>>
>> So, maybe Vanda is working on a beneficial compound, but their way of 
>> drumming up business strikes me as patronizing at best.
>>
>> OK, not about blind parenting, so no more from me on this.
>>
>> -----Original Message-----
>> From: trising at sbcglobal.net [mailto:trising at sbcglobal.net]
>> Sent: Thursday, January 09, 2014 4:47 PM
>> To: Blind Parents Mailing List
>> Subject: Re: [blparent] Has anybody heard these Learn More 924 
>> commercials onthe radio?
>>
>>     Yes, Non24 sleep disorder is real. I have it, and Melatonin helps.
>> Vanda
>> Pharmaceuticals is coming out with a medication that will help more 
>> than Melatonin. I have not heard the commercials. There is also a 
>> website if you are interested. If you put Non24 into your favorite 
>> search engine, you will find it.
>>
>> Sincerely,
>> Terri Wilcox
>>
>>
>>
>>
>>
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>
>
> --
> ❝"If you talk to a man in a language he understands, that goes to his head.
> If you talk to him in his own language, that goes to his heart."❞ 
> ‒Nelson Mandela
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--
❝"If you talk to a man in a language he understands, that goes to his head. If you talk to him in his own language, that goes to his heart."❞ ‒Nelson Mandela

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