Insomnia Awareness Week in April 1 to 7

Link: http://www.sleepassociation.org/index.php?p=insomniaawarenessweek

Insomnia Awareness Week is sponsored by the American Sleep Association. From April 1 - 7, the ASA and its affiliates will be increasing awareness about Insomnia.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of Insomnia.

SYMPTOMS of INSOMNIA

  • Difficulty initiation sleep
  • Difficulty maitaining sleep
  • Mind racing and 'clock watching' during the middle of the night.
  • Anxiety about not getting enough sleep


COMPLICATIONS of INSONIA

  • Anxiety about sleep
  • Feeling unrefreshed after sleep

Find out more about Insomnia

Why Asperger's Won't Exist after May 2013

Link: http://www.aspergerstestsite.com/1019/dsmv_whyaspergers-wont-exist

From May 2013 Asperger's Syndrome will no longer exist....as a a diagnosis. The wide diagnostic area that is the Autism Spectrum, which includes PPD-NOS (pervasive developmental disorder not otherwise specified) and Asperger's Syndrome, will be simply a single group of Autism.

While the obvious concern is the stigma of being classified as having Autism rather than Asperger's Syndrome. Where we Aspies share traits with notable historical people who may have had Asperger?s Syndrome, like Albert Einstein, Isaac Newton, Benjamin Franklin, several American presidents, and artists such as Leonardo da Vinci, Vincent van Gogh, Beethoven, and Elvis. The bigger issue may be that the higher-functioning people that met the old criteria, will no longer meet the new criteria of the single Autism diagnosis and not get any help in early childhood where it may make a difference to these individuals.

The diagnostic criteria for Asperger's is things like: lack of eye contact, no delay in speech, difficulty making friends, unusual body posture or stimming, an obsession with one subject, not engaging in interactive play, severe difficulties in adjusting to change (transitioning from one activity or place to another). While the criteria for Austism has includes all those traits, except that the person will have "no speech or delayed speech".

What's this to do with me? Well, in the of the hidden gems for health care reform perhaps as part of the mandate for electronic medical records is that I get to see into my records. Was that after my last annual physical I got a health information summary, which included a listing of "Significant Health Issues". Aside from the "Hypersomnia", "Near Syncope or Cataplexy", before the most recent addition "Cataplexy with Narcolepsy".... in there was also "Asperger's Syndrome" and "Aspergers Syndrome". Guess its important to have it listed both ways?

That was kind of a surprise, when was that diagnosis made?

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I've had it with CPAP headgear

Pretty much ever since I started CPAP, I've had a problem with pressure sores on the back of my head (could be in part due to a problem with seborrheic dermatitis or something affecting the same region....I did have a massive cyct that was just below hairline removed the summer before OSA dx. Yet another procedure where I was given a local, but ended up completely out and waking was difficult...)

But, virtually every mask on the market insists on using the same spot as a contact point. Some masks are more tolerant though on the strap not being placed there.

Pretty much there is only one mask on the market that solves this headgear issue. The CPAP Pro from http://www.nomask.com.

The problem is that its a pricey mask and it never came up with my DME...though it could just be that its not from one of the big vendors that they carry a selection of and I don't know if I could get them to get it for me or not. And, insurance would pay 100%, so it would've made sense to get it....except for the DME's rigid 6 month rule, and I had gotten a new backup FFM last winter to use a few times. While my nasal pillow mask is pushing 1 year....I did in fact order a replacement -- as referenced in "I did something amazing this morning".

While doing that post, I had researched CPAP PRO some more, and signed up for their email list....where the next day they sent me a limited time offer to get one for $119. But, since I had just gotten the new Bravo II, and I was waiting for late March to inquire if DME would....

Meanwhile, I got an email on February 28th, announcing that "Headgear has just Become a Think in the Past".... Introducing the TAP PAP Nasal Pillow Mask! CPAP.com has it for $129, including shipping and return insurance. And, it comes with all size pillows. While CPAP PRO comes with 'standard' size pillows which they say fits 99%. But, past experience usually puts me in the 1%.... have to call them to get smaller or larger, should that be necessary.

So, in my mind I had a plan that I would wait until the next Discover cycle to order the TAP PAP and next DME visit to see about the CPAP PRO...and see which works. Thinking the one I get from DME, I'm going to keep whether it works or not.....'cause before TAP PAP, the plan was to make it work no matter what.

But, then yesterday I noticed that I had gotten an email the day before titled "CPAP PRO $99 Sale"....I thought about seeing if still worked....or waiting to next week, when I might stop at DME after getting my bi-weekly shot. Though a few days ago the sore on my head got really bad that I need to sleep in a different position and mask doesn't stay put in that position and... and...

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Suddenly Sleep Saturday in March 9th

National Sleep Awareness Week, this year takes place March 3-10, 2013, is an annual public education and awareness campaign to promote the importance of sleep. The week begins with the announcement of the National Sleep Foundation's Sleep in America poll results and ends with the clock change to Daylight Saving Time, where Americans lose one hour of sleep. The Foundation's Sleep Care Center members host events in their local communities throughout the week, providing sleep education and screening to the public.

The last Saturday of the week, is known as Suddenly Sleep Saturday and is also known as Narcolepsy Awareness Day.

On the last Sunday in 2011, March 13, Julie Flygare held the first SLEEP WALK in DC. This year the (3rd Annual) National Sleep Walk is today, March 3rd. Perhaps some day I'll travel for it....

Meanwhile, last year other Sleep Walk events started up across the country and around the world. Some for this year include:

SLEEP WALK West Coast in Sacramento, CA
SLEEP WALK Hawaii in Waikiki, HI
SLEEP WALK Dallas Texas

And, there are other events planned for Suddenly Sleepy Saturday, such as a Narcolepsy Bed Race in Roanoke, VA or Ireland's first International Narcolepsy Awareness Day:

The RLS Foundation is now the WED Foundation

Back in 2011, they renamed RLS (Restless Leg Syndrome) to WED (Willis-Ekbom Disease)...though early on during the name change process there were releases in the Internet incorrectly stating WED as Wittmaack-Ekbom Disease.

The reason to abandon RLS was that its 3 incorrect terms put together.

  • RESTLESS: legs are supposed to move, not remain at rest.
  • LEGS: other body parts such as the arms or trunk are often involved.
  • SYNDROME: we now understand the pathophysiology of the disease. Syndrome indicates only a collection of symptoms.

Though my earliest memories of RLS involved my legs, but it was my arms that bothered me more during the day time.... Though I didn't get a formal Dx (of RLS) until 2011.

The name was based on influential contributors to the history of RLS/WED....where the publications between Willis (1672) and Ekbom (1945), lacked the prominence of being first or most complete. Early on in the process Wittmaack (1861) circulated on the Internet (there was a 'press release' that was showing up on various message boards that I taken me...)...but Wittmaack incorrectly considered RLS a form of hysteria.

"Disease" was chosen over "syndrome" because of the many scientific advances, including current understanding of brain dopamine, brain iron, and genetics in this condition. However, for those uncomfortable with saying they have a disease, the revised name is distinctive enough that saying "Willis-Ekbom" will soon suffice.

Anyways, to complete the transition... On February 4, 2013, the Assured Name Change for the Restless Legs Syndrome Foundation was approved. They are now doing business as the Willis-Ekbom Disease Foundation. And, last night I received the last email from the RLS Foundation and rlsfoundation@rls.org. Future emails will be from the Willis-Ekbom Disease Foundation and info@willis-ekbom.org

The website is now: www.willis-ekbom.org (Effective February 28th, 2013) And, I see why they gave the link to the RLS-Foundation Facebook page, it opens as the Willis-Ekbom Disease Foundation page.