It’s Almost World Narcolepsy Day, Are You Ready?

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The week leading up to World Narcolepsy Day has quickly become one of the most surreal weeks of my life! Seeing posts, articles, videos and radio segments from around the globe honoring World Narcolepsy Day, wow!

World Narcolepsy Day Activities:

I will travel to Vancouver, Canada tomorrow to celebrate World Narcolepsy Day at World Sleep 2019, an international congress on sleep medicine. Join myself and Project Sleep virtually or in-person, here are some opportunities:

World Narcolepsy Day Pronouncement:

Tune in on Sunday, Sept. 22, 2019 at 12:00 noon ET for the World Narcolepsy Day Pronouncement – broadcasting via Facebook Live. Narcolepsy and idiopathic hypersomnia experts and community leaders gathered at World Sleep 2019 will discuss the importance of World Narcolepsy Day, raising awareness and advancing research to improve outcomes for people with narcolepsy and IH around the world.

To watch the live broadcast, simply go to Project Sleep’s Facebook page on Sunday 9/22 at 12noon ET and as soon as we “go live,” the video should show up in our newsfeed!

World Narcolepsy Day #NChat on Twitter

#Nchat is a monthly Twitter conversation that connects people with narcolepsy worldwide. Join in this special #WorldNarcolepsyDay #Nchat on Sunday, Sept. 22nd at 5:00 p.m. ET!

If you’re in the Vancouver area or attending World Sleep 2019, join us in-person for these opportunities:

  • World Narcolepsy Day “Selfie-Station” on Sunday, Sept. 22, 2019 from 10:00 a.m. – 4:00 p.m. PT in the Public Foyer, Vancouver Convention Center
  • Julie Flygare’s Author Table on Sunday, Sept. 22, 2019 from 12:15 – 12:45 p.m. PT in the Public Foyer, Vancouver Convention Center
  • Inaugural World Narcolepsy Day Forum on Sunday, Sept. 22, 2019 from 5:30 – 6:30 p.m. PT in Room 109, Vancouver Convention Center
    • Speakers: Matt O’Neill, Narcolepsy UK, Julie Flygare, JD, Project Sleep, Claire Crisp, Wake Up Narcolepsy, Eveline Honig, MD, Narcolepsy Network, Rebecca King, Hypersomnia Foundation, Mark Patterson, MD, Day4Naps
    • Session description: To mark the inaugural World Narcolepsy Day, Sept 22, 2019, leaders of narcolepsy non-profit patient organizations will share programmatic highlights, best practices and key insights from the front lines. Clinicians, researchers and patient community members will learn about
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Living One-Third of My Life with Narcolepsy

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Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis).

For fun today, I searched my emails from that fateful day, Sept 18, 2007, and interestingly, I didn’t mention “narcolepsy” once via email that day, but I did send a lot of writing samples and cover letters for law firm job interviews… Interviews for fancy jobs I would never secure, and visions of “success” I would never realize.

“Futures have a way of falling down in mid-flight.” ~Veronica Shoffstall, After A While

It took a while for me to realize I wasn’t going to “get better and go back to my life as planned” after starting treatment. The emails to my dad proclaiming: “I HATE narcolepsy” started a few months later. For me, the hell of the next several years was a lifetime low.

“Innovation doesn’t happen because there’s some person who’s in some great circumstance and everything is going well and they get on a roll and they make something for the world. Innovation happens—art happens—because of suffering.” ~Claire Wineland, Klick MUSE New York

So here I stand, just four days away from the inaugural World Narcolepsy Day on Sept. 22, 2019. This week, I’m seeing posts from Japan, Australia, Brazil, Myanmar, Argentina, Spain, Finland, the UK, Ireland, and Israel. It’s totally surreal.

This is one of those moments that have made the past one-third of my life the richest years, with lessons learned about pushing beyond my comfort zone, letting go of other people’s expectations, standing up for what i believe in even when its not popular, and finding the courage to build my dream organization Project Sleep to align with like-minded people who want to disrupt the status quo and innovate for a brighter future.

No matter where you are, I want you to know that it is temporary and will not last forever. It’s …

Listen: Julie Flygare on Present Not Perfect Podcast in honor of World Narcolepsy Day

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Two people with narcolepsy. Double the insight!

A few minutes into recording, I realized I’d never recorded a podcast with a fellow person with narcolepsy before. This interview with Leyla Sarper for the “Present Not Perfect” podcast was such a neat experience. I’m super excited to share this with you today!

Listen now on Spotify here. Also available on Apple Podcasts, Stitcher, Google Podcasts and more! Just search “Present Not Perfect.”

What did we discuss?

  • being present,
  • letting go of self-guilt,
  • what is sleepiness?
  • coping with invisible illness,
  • Wide Awake and Dreaming: A Memoir of Narcolepsy,
  • cataplexy from Celine Dion,
  • nap rooms at work,
  • awesome dads,
  • building my “no” muscle,
  • learning the world doesn’t revolve around me,
  • re-arranging my life around my passions,
  • finding the courage to START, and
  • and of course, World Narcolepsy Day!!

To listen: Apple Podcasts, Spotify, Stitcher, Google Podcasts and more! Just search “Present Not Perfect.”

I hope you will enjoy and share. Thank you for your support!

from Julie Flygare http://julieflygare.com/listen-julie-flygare-on-present-not-perfect-podcast-in-honor-of-world-narcolepsy-day/…

Study Questions Routine Sleep Studies to Evaluate Snoring in Children

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A new finding suggests that the pediatric sleep study, used to diagnose pediatric sleep apnea and to measure improvement after surgery, may be an unreliable predictor of who will benefit from having an adenotonsillectomy.

About 500,000 children under age 15 have adenotonsillectomies every year in the U.S. to treat obstructive sleep apnea. The American Academy of Pediatrics (AAP) recommends the surgery as a first-line therapy to treat the condition, which can cause behavioral issues, cardiovascular problems, poor growth, and developmental delays. The premise is that surgically removing or reducing the severity of the obstruction to the upper airway will improve sleep and reduce other problems caused by the disorder.

In 2012, the AAP recommended that pediatricians should screen children who snore regularly for sleep apnea, and refer children suspected of having the condition for an overnight in-laboratory sleep study. The group also recommended an adenotonsillectomy based on the results of the test. But results from the new UMSOM study, published in the September issue of the journal Pediatrics, call into question those recommendations because the data they analyzed found no relationship between improvements in sleep studies following surgery and resolution of most sleep apnea symptoms.

“Resolution of an airway obstruction measured by a sleep study performed after an adenotonsillectomy has long been thought to correlate with improvement in sleep apnea symptoms, but we found this may not be the case,” said study lead author Amal Isaiah, MD, PhD, an Assistant Professor of Otorhinolaryngology — Head and Neck Surgery and Pediatrics at UMSOM. “Our finding suggests that using sleep studies alone to manage sleep apnea in children may be a less than satisfactory way of determining whether surgery is warranted.”

Get the full story at sciencedaily.com. 

from Sleep Review http://www.sleepreviewmag.com/2019/09/routine-sleep-studies-snoring-children/…

Staying on Track During Your Bedtime Routine

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A predictable, consistent bedtime routine is vital to helping your little one get a good night’s sleep. But usually, somewhere around the toddler years, they tend to start pushing for that extra story, another few kisses goodnight, or some other excuse to delay bedtime by a few extra minutes.

If your little one is testing the bedtime boundaries, I’ve got some tips for you today that will keep the routine on track and make sure they’re happily in bed and ready for sleep right on schedule without having things turn into a battle.

Rather read than watch? Click here.

If your baby, infant or toddler is having trouble sleeping through the night, help is just a click away! The Sleep Sense Program has helped over 57,00 parents to get their kids sleeping 11-12 hours through the night AND taking long, restful naps during the day. If you’re ready to get started today – I’m looking forward to helping you!

The post Staying on Track During Your Bedtime Routine appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/staying-on-track-during-your-bedtime-routine/…

Great Lakes Releases the New Medley Sleep Oral Appliance

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Great Lakes Dental Technologies has announced the release of a new oral appliance for obstructive sleep apnea and snoring.

The new device, the Medley Sleep Appliance, features a platform with dual configuration options that can accommodate different advancement mechanisms including; rigid nylon links, elastomeric (EMA) straps, or telescopic Herbst rod sleeve arms. Medley offers personalized advancement options without treatment delays or the need for multiple appliances, according to a press release from the manufacturer.

“The Medley Appliance serves the needs of a vast majority of my patients who suffer from sleep apnea and nighttime snoring. I have used this appliance almost exclusively for five years. I am also thrilled to partner with Great Lakes Dental Technologies as the sole laboratory to manufacture my sleep appliances for distribution in the United States and Canada,” Robert Rogers, DMD, DABDSM, inventor of the Medley, says in a statement.

This appliance offers three different design applications to treat a variety of patients.

from Sleep Review http://www.sleepreviewmag.com/2019/09/medley-sleep-apnea-oral-appliance/…

Snoring: From An Engineer’s Point Of View

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Snoring is often talked about by doctors. Well, that makes sense. After all, snoring is a health issue that deserves medical attention. That puts doctors in a very good position to impart critical information about snoring. Needless to say, they’re the best people who can help cure it as well.

It’s seldom that we hear engineers talk about snoring. So, when they do, our ears are open.

Haibo Dong is an associate professor of mechanical and aerospace engineering.

Dong and Ph.D. students Junshi Wang and Pan Han are gaining new understanding of the fundamental science behind sleep apnea by using CT scans and MRIs to image the mouth and nose and the full airway – the “windpipe” – during snoring and apnea, and then computer-modeling the actions that cause vibrations of the uvula and obstructions. They are looking for the changes in the shape of the airway during sleep that cause perturbations in airflow. Those perturbations are the vibrations of snoring and the often-resulting breathing difficulties.

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Snoring can be treated. Unfortunately, some treatments fail.

“Treatments often fail because there is a knowledge gap of the fundamental science behind the reasons for this health issue,” said Haibo Dong, a University of Virginia associate professor of mechanical and aerospace engineering who specializes in fluid dynamics research.

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Understanding how snoring is produced can help bridge the gap. Research that puts together engineers and doctors can hopefully solve that.

If Dong’s team and his research colleagues, including Dr. James Daniero, a head and neck surgeon in UVA’s Department of Otolaryngology, can understand the basic mechanics of sound produced during normal breathing, then perhaps better treatments and longer-term solutions for abnormalities may be possible.

“This work is highly interdisciplinary and involves scientific problems in the fields of biology, physics, physiology and engineering,” Dong said. “By studying biological fluid dynamics, we are trying to predict and eventually control sleep apnea and snoring.”

(Via: https://news.virginia.edu/content/when-snoring-goes-annoying-dangerous-engineer-studies-sleep-apnea)

Read on to see how they’re trying to do it.

Dong has now modeled both normal breathing and the breathing conditions of sleep apnea for

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Switching From Two Naps to One

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Around the time of your baby’s first birthday, they’re likely to start needing slightly less daytime sleep. This usually means they can switch from two shorter daytime naps down to one longer one.

This can be a very tough transition to make. Pushing their nap time later in the day can lead to overtiredness, but letting them sleep too early in the day means they’ll be awake for too long before bedtime.

In today’s video, I’ve got a few tips to help you find the balance between these two undesirable scenarios and get your baby down to one nap a day without messing up their schedule.

Rather read than watch? Click here.

If your baby, infant or toddler is having trouble sleeping through the night, help is just a click away! The Sleep Sense Program has helped over 57,00 parents to get their kids sleeping 11-12 hours through the night AND taking long, restful naps during the day. If you’re ready to get started today – I’m looking forward to helping you!

The post Switching From Two Naps to One appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/switching-from-two-naps-to-one/…

Back to School Sleep Tips

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Getting the kids back to school can be a bit of a mixed blessing, but one thing’s for certain. It means returning to a nice, predictable schedule. The only problem is that after two months of freestyling their sleep schedule, it can be tough to get things back on track.

In today’s video, I’ve got a few easy steps you can take to solve this situation in just a few nights and get your little one back into the groove, so they’re feeling ready for sleep come bedtime.

Rather read than watch? Click here.

If your baby, infant or toddler is having trouble sleeping through the night, help is just a click away! The Sleep Sense Program has helped over 57,00 parents to get their kids sleeping 11-12 hours through the night AND taking long, restful naps during the day. If you’re ready to get started today – I’m looking forward to helping you!

The post Back to School Sleep Tips appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/back-to-school-sleep-tips-2/…

New Snoring Mouthpieces Review Post On Getting A Good Night’s Sleep Released

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The Snoring Mouthpiece Review, which is based in Long Beach, California, has recently published a blog post that offers a simple way to get a good night’s sleep. The article is titled, “A Simple Way To A Good Night’s Sleep.” It explores the various ways of preventing snoring in order to allow a person to sleep tight at night.

“While getting a good night’s sleep is important for good health, unfortunately, it’s not easy to get a good night’s sleep,” says Steve Walker, a spokesperson for The Snoring Mouthpiece Review.

He adds, “There will be some nights when your sleep is good and there will be some nights when your sleep is bad. If you’re a snorer, you probably have more nights of bad sleep. If you’re hardly getting any good night’s sleep, you’re going to get sick. And, if your partner says you snore, accept it and decide to do something about it. Don’t even attempt to deny it because the sooner you deal with your snoring, the better it is for your health and your relationship. Keep in mind that sleep apnea is a serious health problem.”

Sleep apnea is a disorder where the breathing of the affected person stops and starts several times during sleep. It causes momentary oxygen deprivation during those times when the person stops breathing and this particular disorder has been linked to stroke, heart disease, diabetes, high blood pressure, and even depression. It has even been found to be the cause of 38,000 deaths every year.

There are many ways to prevent sleep apnea. One possible solution is the Continuous Positive Airway Pressure (CPAP) machine. However, the CPAP machine may not be a convenient solution because the person has to wear a mask that will cover the whole face. It is not exactly a comfortable thing to wear while sleeping. That is why people are looking for some other alternative, such as an oral appliance or mouthpiece that fits the mouth comfortably while being effective in preventing snoring and sleep apnea.

One example of a good mouthpiece is the SleepTight. This is a …