“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy

Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy.

I was not involved in the development or filming of this movie, but I’ve been interested since the film was announced in 2011, based on the This American Life segment “I’m Fallen In Love and I Can’t Get Up.” This past April, I attended a showing of Ode to Joy at the Phoenix Film Festival, with Project Sleep board member, Ed Sweet.

As President & CEO of Project Sleep, seeing the film as soon as possible was important to me. Representations of narcolepsy in film provide valuable insight into public perceptions and understanding of the condition. For many individuals, cinematic depictions of narcolepsy may be their only exposure to the symptoms. Thus, patient-driven organizations like Project Sleep, along with narcolepsy advocates and medical professionals, will all benefit from being aware of movie portrayals and joining the conversation as much as possible.

As a person living with narcolepsy with cataplexy myself, I was nervous to see the film. Generally, I close my eyes when clinicians play videos of cataplexy at conferences. Also, I have a short YouTube playlist of other people’s cataplexy episodes and inevitably, tears stream down my face watching these.

Going into seeing the film for the first time, my burning questions were:

1.) How will the movie depict and describe cataplexy? 
2.) How will the movie depict and describe narcolepsy?
3.) How will it depict treatment?
4.) How will it depict the condition’s impact on life? 
5.) Will there be resources exemplified during the film or offered at the end?
6.) Will the film help to raise awareness and/or reduce stigma?
7.) Will I find the movie funny?

Here are my responses. WARNING: from this point on, this post contains spoilers.

1.) How will the movie depict and describe cataplexy?

Physical manifestations: 
I was curious to …

A Simple Way To A Good Night’s Sleep

A good night’s sleep is a necessity. It’s not a luxury. You deserve to get a good night’s sleep every single night. It’s the only way your body can rest and rejuvenate for the next day.

Unfortunately, it’s not easy to get a good night’s sleep. There will 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.

Snoring at night can not only be annoying but also health threatening and sometimes fatal. Many people don’t even know that they snore. Therefore, they are never diagnosed with sleep apnea, a disorder in which breathing starts and stops during sleep.

(Via: https://www.abc4.com/gtu/a-cure-to-help-you-get-a-good-nights-sleep/)

The best way to really know if you snore is to ask your partner. Your partner is not going to lie about it. No one lies about snoring, especially if it’s loud and annoying.

So, 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 has been connected to heart disease, stroke, high blood pressure, diabetes and also depression. It even causes about 38,000 deaths each year. This is a serious disorder …

(Via: https://www.abc4.com/gtu/a-cure-to-help-you-get-a-good-nights-sleep/)

Don’t let snoring get in the way of a good night’s sleep. A good night’s sleep is the key to an awesome day ahead. Don’t miss out the opportunity of facing it.

A good night’s sleep is also good for your health. If you ignore your snoring, your health can suffer.

Most importantly, your snoring might ruin the loving relationship you have with your partner. Don’t let it reach that point.

Don’t let sleep apnea scare you. Yes, it is a serious health problem but it can be cured. Continuous Positive Airway Pressure or CPAP …

Encouraging Healthy Eating Habits

There’s only one thing I know that compares to the feelings of frustration and powerlessness parents experience when their kids won’t sleep, and that’s when they won’t eat.

Or maybe they’ll eat, provided they’re given exactly what they want, which usually involves those trademark “beige foods” like chicken nuggets, goldfish crackers, toaster waffles, and a variety of similar high-carb, low nutrition options.

What I discovered after a lot of trial and error with my first-born was that there’s a pretty effective way to get your kids to eat nutritious foods provided you understand a little about why they’re so reluctant to try them in the first place, and have a low-pressure approach to introducing them.

I’ll tell you everything you need to know about this simple but effective strategy in this week’s video.

If you’re having issues with your child’s eating habits, whether they’re not eating enough healthy food, have no interest in trying new things, or are engaging in a battle of wills every time you sit down to the dinner table, try The Food Sense Program. It’s a complete system designed to end the mealtime headaches, get your child eating healthy, and help them develop a positive relationship with food!

The post Encouraging Healthy Eating Habits appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/encouraging-healthy-eating-habits/…

Celebrating 20 Years of Hypocretin/Orexin: Narcolepsy’s Big Breakthrough

LET’S PARTY LIKE IT’S 1999:

Twenty years ago today, a dog named Kahlua was on the cover of the journal Cell. Kahlua was a doberman pinscher with canine narcolepsy and an important piece of history.

Today marks 20 years since Dr. Emmanuel Mignot, MD, PhD, and his team at Stanford University published their key paper in Cell on the genetic mutations responsible for canine narcolepsy. The paper identified that mutations to the hypocretin (orexin) receptor 2 gene caused canine narcolepsy in Kahlua and the Doberman colony at Stanford, a discovery that had important implications for sleep science and humans with narcolepsy.

Mignot’s breakthrough was part of an amazing flurry of scientific discoveries, each building on one another. In 1998, Luis de Lecea, PhD, while at Scripps Research Institute, first discovered that hypocretin existed. Building on this, Mignot’s team published their key paper on August 6, 1999 and just two weeks later, on August 20, 1999, Masasi Yanagisawa and his group at the University of Texas also published in Cell implicating hypocretin (orexin) in mice with narcolepsy-like symptoms.

In Sleepyhead: The Neuroscience of a Good Night’s Sleep, author and fellow person with narcolepsy, Henry Nicholls eloquently tells the riveting history in Chapter 5: Sleeping Dogs Don’t Lie. My summary doesn’t do this story justice, I highly recommend Nicholls’ book!

In 2000, further research suggested that hypocretin was not present in the cerebrospinal fluid of people with narcolepsy. That same year, two groups, Mignot’s team and another led by Jerome Siegel, PhD at UCLA found that the lack of hypocretin in humans with narcolepsy was not due to gene mutations (as was the case with the dogs) but due to hypocretin cells actually being missing in their brains.

So while August 6, 1999 was not the beginning or the end of the hypocretin(orexin) story, it was a huge leap of progress and a moment with celebrating today. This discovery flurry spurred many more questions like: How did hypocretin go missing in the brains of people with narcolepsy? Could targeted treatments be developed to address this deficiency?

1999 – PRESENT:

Recently, I

To Compete With Startups, Old-School Mattress Makers Plug Into Data

Tempur Sealy announced its latest bid to win back your bedroom: a smart sleep “system” called the Tempur-Ergo Smart Base Collection with Sleeptracker technology. It uses an array of sensors to monitor heart rate and respiration, plus environmental conditions in the bedroom, like temperature, humidity, and air quality.

The real clincher, though, is the new “snore detection technology,” which leverages all that sensor data to detect the faintest whiff of a snore and gently reposition your head to make you stop.

“It automatically elevates the head of your bed, between 11 and 13 degrees,” says Tom Murray, Tempur Sealy’s senior vice president and marketing officer. “For many people, that inclination can help to alleviate the snoring. It will be the first product to market that does that automatically.”

from Sleep Review http://www.sleepreviewmag.com/2019/08/mattress-makers/…

Listen Now: CALM + COZY podcast interview

Apparently I felt comfortable and a bit snarky on the day that I recorded this CALM + COZY podcast interview with the amazing host, Beth Wyatt (@sleepcoachbeth on IG), because I’m pretty honest and animated here!

Beth asked great questions that led to unique conversations not part of my usual “talking points” repertoire. My favorite discussion came after Beth asked:

“What advice would you give someone approaching their primary care doctor about a possible sleep disorder?”

I’d love to hear YOUR thoughts on this topic too. It’s not always easy to get primary care doctors to consider a sleep consult. 

Beth: Thank you for this terrific opportunity to share my story and my passion for Project Sleep. I’m forever grateful to call you my friend and fellow sleep advocate!

Listen to the podcast interview now and let me know what you think in the comments below!

from Julie Flygare http://julieflygare.com/listen-now-calm-cozy-podcast-interview/…

Bedtime Routines

We’ve all got a little ritual we go through when we’re putting our kids to bed. We obviously need to get them into appropriate sleeping attire, get their teeth brushed, change their diaper and so on, but what a lot of people don’t realize is that a bedtime routine is a really effective tool for getting your baby to sleep.

When done right, the bedtime routine helps baby’s brain to realize that it’s almost time for bed, which prompts melatonin production and helps get your little one ready for a nice, easy transition into sleep.

In today’s video, I’ll give you a few tips for creating an ideal bedtime routine that will kick those sleepy hormones into gear and help set you and your baby up for a successful snooze night after night.

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 Bedtime Routines appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/bedtime-routines/…

Sleep Solutions You Can Try

We all want to get some sleep. We need it. There’s no way we can function well if we are sleep deprived. Sleeping is as important as eating. If we’re not getting any sleep, we are useless.

One of the common reasons as to why we cannot get any sleep is that we snore or we’re sleeping beside one who does.

Around 40% of adult men and 24% of adult women snore regularly. The odds are you or your significant other fall into this group of loud sleepers.

(Via: https://theurbantwist.com/2019/06/12/search-for-the-ultimate-snore-silencer-5-solutions-to-help-you-sleep/)

Snoring can really ruin the quality of our sleep. If you’re sleeping beside one who snores, you won’t even be able to get any sleep at all. Not a wink for you and that’s bad for you, your partner, and your health.

While you’ve promised to stay by each other’s side through thick and thin, the snoring may be testing your patience.

(Via: https://theurbantwist.com/2019/06/12/search-for-the-ultimate-snore-silencer-5-solutions-to-help-you-sleep/)

There are solutions you can try. If you’re not the snorer, you can certainly share these solutions with someone who snores. Chances are, that someone could be your partner. Sharing these solutions is a better way to deal with the situation rather resenting your snoring partner.

You can always try sleeping in separate bedrooms but that’s a very temporary solution. Sleeping away from your snoring partner is just going to help you. It will not, in any way, help your snoring partner. As a matter of fact, it might even hurt your snoring partner.

If your partner snores heavily, the more he or she will need you to stay close by. Heavy snoring is a manifestation of stoppage of breathing. As annoying as it may sound, you may need to wake up your snoring partner when you hear him or her struggle for air.

One solution that you can consider for your partner or for yourself (that is, if you’re a heavy snorer), is the CPAP machine.

First of all, you should check to make sure your snoring isn’t a result of something more serious, such as sleep apnea. This disorder can lead to

Why is My Baby Waking Up at Night?

Life would be a whole lot easier if babies came with an interpreter. Crying is basically their only way to let you know something’s bothering them, but it can mean anything from hunger to a wet diaper to tiredness, and everything in between.

And when they’re crying in the night for no apparent reason, that inability to communicate can be frustrating for both of you.

But take heart! In today’s video, I’m going to run through some of the reasons your little one might be waking repeatedly in the night, how you can determine which one is afflicting your baby in the moment, and how best to get them back to sleep and staying asleep through the night.

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 Why is My Baby Waking Up at Night? appeared first on The Sleep Sense Program by Dana Obleman.

from Blog – The Sleep Sense Program by Dana Obleman https://sleepsense.net/why-is-my-baby-waking-up-at-night/…

Say Goodbye To Snoring With Oral Appliance Therapy

There’s a solution to your snoring problem. It’s called Oral Appliance Therapy. According to dentist, Dr. Micheal Uzelac, Oral Appliance Therapy works.

Uzelac, who had been diagnosed with obstructive sleep apnea (OSA), had an oral appliance made to help reduce his disrupted breathing during sleep due to snoring. It worked.

“I slept soundly for three nights in a row, and I felt wonderful,” he said.

(Via: https://www.valpolife.com/health/specialty/73600-oral-appliances-help-reduce-or-eliminate-snoring)

Oral Appliance Therapy may not be the common solution to snoring. Dr. Uzelac states that using a CPAP machine is the most common way to treat snoring. A CPAP machine can help reduce disrupted breathing during sleep.

“The most common treatment for obstructive sleep apnea right now is the CPAP machine,” Uzelac said. Continuous Positive Airway Pressure (CPAP) involves wearing a mask or nasal cannula connected to a machine that delivers pressured air during sleep.

(Via: https://www.valpolife.com/health/specialty/73600-oral-appliances-help-reduce-or-eliminate-snoring)

CPAP machines may be popular but they’re not well-liked by snorers who are looking for a more comfortable and presentable way to solve their problem.

“The problem is, about 58% of people who are prescribed a CPAP machine don’t wear it,” Uzelac said. Some perceive the devices to be bulky, cumbersome, and uncomfortable.

(Via: https://www.valpolife.com/health/specialty/73600-oral-appliances-help-reduce-or-eliminate-snoring)

A better way to approach OSA and snoring is with the use of an oral appliance that could be custom-fitted to your mouth.

“With obstructive sleep apnea, the muscles in the throat relax and block breathing. Oral appliance therapy works like putting a door stop in a door,” Uzelac said. “The appliances help pull the jaw forward so the muscles can’t relax and block breathing.”

More than 100 oral appliances are approved by the Food and Drug Administration (FDA) for the treatment of OSA. They look like retainers or mouth guards, and simply fit over the upper and lower teeth.

(Via: https://www.valpolife.com/health/specialty/73600-oral-appliances-help-reduce-or-eliminate-snoring)

Take note that oral appliance therapy is best for folks who aren’t suffering from severe apnea. Here’s what Dr. Uzelac has to say about it.

Uzelac said those who tend to respond best to oral appliance therapy are those with less severe apnea, women ages