[Blindtlk] blindtlk Digest, Vol 115, Issue 5

Mon Jan 11 14:53:12 UTC 2016

OK, I get all this, but when you have marketing that suggests we don't know it is day or night, that is ludicrous. A kid actually told my kid once she didn't have to go indoors because I didn't know the difference between dark and light. Maybe I couldn't see light, but I know the difference. So commercials are aired like that, and people don't hear/see the part about the ailment; they feel sorry for us because we don't know the difference between day and night. That does legitimize the concerns of the folks here who believe that it can affect employers' willingness to give blind people a try. If I don't know the difference between day and night, I might get confused as to when to show up for work. Trust me, this could happen.
Cindy

-----Original Message-----
From: blindtlk [mailto:blindtlk-bounces at nfbnet.org] On Behalf Of Kathy Ungaro via blindtlk
Sent: Monday, January 11, 2016 8:38 AM
To: blindtlk at nfbnet.org
Cc: Kathy Ungaro <icbv at sbcglobal.net>
Subject: Re: [Blindtlk] blindtlk Digest, Vol 115, Issue 5

I have been reading all of the comments on Non 24 and as a sighted person that works with blind individuals, I wanted to share with you that I personally believe this condition is very real.  I've worked with one individual in particular that I 100% believe has this.  It's not a bash on blind people not knowing when it's day time or night time. It has nothing to do with that.  Read the information from their website to learn more about it (which I have no connection to). What I have witnessed is when an individual has this they go through periods of perfectly fine sleep, but then over time their 'master body clock' gets out of sync, then they have a period of a week or two that they are just exhausted and need to sleep during the day, yet at night they are wide awake. Then the clock goes back to normal and sleep is fine for a while again.
The biggest problem my friend has had with this is finding a doctor to learn about this and understand the problem.
I hope this information is helpful.
Non-24 is a circadian rhythm disorder
•Do you have a hard time sleeping through the night? 
•Do you find you have a strong urge to nap during the day? 
•Is it hard for you to concentrate? 
•Are you feeling restless, overtired, or frustrated? 
•Do you feel your sleep patterns are different from those around you? 
•Does it seem like you're the only person who's experiencing these things?
If your answer to any of these questions is yes and you're totally blind, you may have Non-24-Hour Sleep-Wake Disorder (Non-24).
Non-24 is a circadian rhythm disorder. Your circadian rhythms are controlled by your master body clock and tell you when to sleep, when to wake, when to eat, among other things.
In most people, the master body clock runs slightly longer than 24 hours. What this means is that rather than cycle on a 24-hour day, most people's natural rhythms actually cycle a bit longer. Whether the cycle runs two minutes or 30 minutes longer, if you have Non-24 these minutes add up day after day, a few one day adding to a few more the next, eventually causing a noticeable change in the times during the day when your body expects to sleep and expects to be awake.
Though Non-24 may appear to be a sleep disorder, it isn't. It's actually a serious, chronic circadian rhythm disorder very common in people who are totally blind, and it can arise at any age. Currently, there are 1.3 million people who are legally blind in the United States. Of the legally blind, 130,000 have no light perception (i.e., totally blind), and as many as 70% suffer from Non-24.
Difficulty at night and challenges during the day
Non-24 brings about two significant symptoms.
First is a profound inability to sleep or to stay asleep at night, and the second is an overwhelming urge to sleep during the day. Both changes are caused by the timing of the release of the hormones, melatonin and cortisol. Melatonin controls sleep, and cortisol controls when to wake up and when to eat. Cortisol also controls your metabolism, cardiovascular function, immune system, and appetite. Because the release of melatonin and cortisol shifts continually, not all nights are the same. Some are sleepless, others are normal, and poor sleep happens only when the master body clock is out of sync with the typical day-night cycle. And when poor sleep happens, sleep deprivation may make it difficult to focus on the task at hand.
Non-24 comes about when the master body clock runs on its own natural rhythm. Hence the name, Non-24, which indicates a master body clock that is not 24 hours long. For unknown reasons, most people's body clock runs a little longer than 24 hours, which means most people could have Non-24 to some degree. The difference is that for sighted people, environmental light cues signal the brain to reset the master body clock every day to 24 hours. 
For people who are totally blind, the master body clock runs its natural course. This means that if your body clock runs on a 24.5-hour schedule, today you're 30 minutes behind and tomorrow your body clock will be an hour behind. The next day will be 90 minutes, and so on. Day by day, this time adds up until you're many hours behind, creating a rhythm that's out of sync with the typical day-night cycle. Eventually, your body operates as if night is day and day is night. While you could try to maintain your usual schedule, more often than not you have a hard time sleeping at night and then feel an overwhelming urge to sleep during the day. In time, you once again reach the point when your body clock is in sync with the typical day-night cycle. But then, just as quickly, it moves out of sync again. 
A complication that can sap your energyBecause its effects are so wide-ranging, Non-24 may hinder the methods you use to get through the day. It may sap your energy. You may suddenly fall asleep at inopportune times, and it may make crucial daily tasks a challenge, such as counting bus stops so you know when to get off. 
Living with Non-24 may make you feel as though no one understands what you're going through, and this sense of being alone only makes the effects feel that much worse. The truth is, you're not alone. There are many other people living with Non-24 who are experiencing many of the same challenges you do. Using the information on this website, as well as talking to others, may help guide you as you manage Non-24 in your own life.
Step 1 on your road to the help you need? Read the next section of this website to get a better understanding of the master body clock and circadian rhythms and how they may be affecting your life.
Here is the link to the website: http://www.non-24.com/about-non-24.php
Thank you,Kathy UngaroICBV, Business Manager(630)234-4444 Illinois Committee of Blind Vendors53 W. Jackson Blvd. Suite 502Chicago, IL 60604(312)663-3007  This message (including attachments) is privileged and confidential. If you are not the intended recipient, please delete it without further distribution and reply to the sender that you have received the message in error.

      From: "blindtlk-request at nfbnet.org" <blindtlk-request at nfbnet.org>
 To: blindtlk at nfbnet.org
 Sent: Wednesday, January 6, 2016 6:00 AM
 Subject: blindtlk Digest, Vol 115, Issue 5

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Today's Topics:

  1. Re: back fromvacation (Ericka)
  2. Re: non 24 (Ericka)
  3. Re: non 24 (Kevin)
  4. Re: non 24 (Ericka)
  5. Re: non 24 (justin williams)
  6. Re: non 24 (Cindy Ray)
  7. Re: non 24 (Gary Wunder)
  8. Re: non 24 (Arielle Silverman)
  9. Re: non 24 (Bryan Schulz)
  10. Re: non 24 (Ericka)
  11. Re: non 24 (Ericka)
  12. Re: non 24 (Judy Jones)
  13. Re: non 24 (Ericka)
  14. Re: non 24 (Judy Jones)
  15. Re: non 24 (Judy Jones)
  16. Re: non 24 (Ericka)
  17. Re: non 24 (Mark Tardif)
  18. Re: non 24 (Mark Tardif)
  19. Re: non 24 (Cindy Ray)
  20. Re: non 24 (Arielle Silverman)
  21. Re: non 24 (Bryan Schulz)
  22. Re: non 24 (Carly Mihalakis)
  23. Re: non 24 (Carly Mihalakis)
  24. Re: non 24 (Carly Mihalakis)
  25. Re: non 24 (Carly Mihalakis)

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