Meanwhile, I just remembered to pledge for birdies....

Link: http://www.nicolejeray.com/pledge-now/

I just remembered to pledge for birdies again with Swinging for Sleep for 2013. I'm sticking with $1 per birdie....

WUNners Safe

Link: http://wakeupnarcolepsy.blogspot.com/2013/04/wunners-safe-after-marathon-tragedy-we.html

Just read that all the WUNners weren't near the blast site at yesterday's Boston Marathon. Still makes for an emotional day on many other fronts.

This was the first year that I donated to this.

Marathon donors contributed more than $52,000 towards Narcolepsy research.

Prescription Drug User Fee Act -- Patient Focused Drug-Development -- Docket Number FDA-2012-N-0967

Link: http://www.gpo.gov/fdsys/pkg/FR-2013-04-11/pdf/2013-08441.pdf

Last year the FDA soliciting public comments to narrow down the diseases to focus on for its Patient-Focused Drug Development Initiative, which has the goal of obtaining the patient's perspective on certain disease areas during the five period of the PDUFA (Prescription Drug User Fee Act) V. To assess a product's benefits and risks involves an analysis of the severity of the condition treated and the current treatment options available for the given disease. This information is a critical aspect of FDA's decision-making as it establishes the context in which the regulatory decisions are makde. The FDA believes that drug development and their review process could benefit from a more systematic and expansive approach by obtaining the perspective of patients on disease severity and current available options in a therapeutic area.

They had nominated 39 diseases, where narcolepsy was one of them, and were looking to narrow the list down to 20.

And, the result is Narcolepsy got selected! :cool:

Even though there were directions on how to make the comment anonymously, I choose to include my name and I had gone with greater emphasis for Narcolepsy since it was my most recent diagnosis, and since it was first brought to my attention during the after dinner conversation aboard the Nautica Queen....though we Narcoleptics tend to have more than one thing wrong...and perhaps someday I'll get to know what my current problem is called (something I've had over over 10 years now, but only started getting really bad the shortly after the conference.)

The conference was October 19-21, 2012...I got back on the 23rd, and wrote the letter on the 24th. Since I had book Wednesday to Wednesday off from work for the conference....

The resulting list for FY 2013-2015 are: Alpha-1 antitrypsin deficiency; breast cancer; chronic Chagas disease; female sexual dysfunction; fibromyalgia; heomphilia A, hemophilia B, von Willebrand disease, and other heritable bleeding disorders; HIV; idiopathic pulmonary fibrosis; irritable bowel syndrome, gastroparesis, and gastroesophageal reflux disease with persistent regurgitation symptoms on proton-pump inhibitors; lung cancer; myalgic encephalomyelitis/chronic fatigue syndrome; narcolepsy; neurological manifestations of inborn errors of metabolism; Parkinson's diseases and Huntington's disease; pulmonary arterial hypertension; and sickle cell disease.

There will be another public process to determine the list of disease areas for FY 2016-2017.

Wonder what the future meetings will be....

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How Awake Are You?

Link: http://healthysleep.med.harvard.edu/need-sleep/whats-in-it-for-you/how-awake-are-you

Here's a flash 'game' that in 5 minutes assesses your wakefulness for driving....

For me, I ended with an average reaction time of 0.30 seconds, which according to the results is just with in the 'safe' range.

Though I also had 1 accident and 1 false start....

It was long and boring enough that I could feel the eyes wanting to wander, as well as the threat that I might have a microsleep.

And, a microsleep at 120km/hr is no fun....especially if you were aiming for a rest stop and the exit is sharp and turns to gravel.

Full story »

Life without CPAP Headgear

Has been wonderful, I don't know why I waited so long.

Anyways, as I had alluded to in my previous post I've had it with CPAP headgear, I had ordered the CPAP Pro....wishing I had gone with 2 now.

The mask arrived on March 15th, but then sat around waiting for a good moment where I could do the boil and bite fitting.  Some stretch of time where I would feel up to be vertical for a sufficient stretch and have flossed and brushed my teeth.  A side effect of using such a mask, is making sure that I've flossed before going to bed now (something I've been known to put off until morning when I'm too sleepy or rushed.)

During this time, I had switched to using a different backup mask....my EasyLife Nasal mask....a weird mask that creates suction to stick to my face while delivering pressure, though the headgear soon started in aggravate my problems and I was starting to develop a sore on the bridge of my nose.  The night before finally starting the CPAP Pro, I end up going back to the Bravo II for one last night.

Meanwhile, later on March 15th, I finally got around to ordering the TAP PAP, which I had somehow hoped would be the better mask given the direction of tubing....but I'm getting ahead of myself here.  I ordered it from CPAP.com, and had them ship it to my personal mailbox at the UPS Store to avoid any chance of a repeat of the problems I had with USPS on my previous order.  Though it came in a box that probably would've fit in a parcel locker this time.  (though I've been left delivery notices for boxes that would've fit, lately...so it might've been at risk.)  The order arrived on March 22nd, another shipment had arrived earlier that week....so it was going to make a challenging grocery/UPS store trip on March 23rd.  And, it was.

Especially with the one last hit of winter that weekend.... I only did a quick pick up of a few items, like bananas, donuts and oatmeal....breakfast, intended to make normal grocery run on Sunday, but the weather didn't permit it.  So, another week of delivery.  Just as well, standing and moving about is getting to be a real challenge these days.  And, it was still a tight cram to get the items into my duffel bag, and balance the cpap.com box on top as I walked home.  But, glad I had still done the quick grocery store trip in hindsight.

But, before that journey...I had finally gotten around to doing the boil and bite of the CPAP Pro on March 20th.  The mask only comes with one size pillows, where standard size fits 99% of users.  Except I'm almost always the outlyer, rarely ever been in the 99% of any other mask that I've tried...and evidently that's the case with CPAP Pro.  While testing the fit of the pillows waiting for the water to boil, I found that the standard pillows barely made contact with the edges of my nares...suggesting that it was going to be a problem once I laid down and more so as the night progressed.  At it was very exact on alignment to make the seal, which would add to the challenge in bed.  Well, it took a couple of tries to do the boil and bite...the first time I had bit down too soon, second time I still didn't get as close as possible to the front, but thought that it would do.  I had let the bite piece fully harden before remembering that I should trim....which now fully hardened wasn't possible to do.  Decided that the excess wasn't bothering me, that it could stay.  I also didn't get the back all the way down, so I thought that might cause problems....seems the main one is that it doesn't hold onto my teeth as well as it could.

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