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

Originally at: http://julieflygare.com/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 see how Martin Freeman might act out cataplexy on camera. Cataplexy is such a unique form of muscle weakness/paralysis that can be so sudden and jerky, even I find it hard to “re-enact” on purpose, even having lived with it for over 14 years now.

The physical manifestations of cataplexy in Ode to Joy ranged from accurate (i.e. a knee-buckling and crumbling inward/downward to the ground) to inaccurate (i.e. rigid plank tumbling backward). I would love to know how Freeman prepared for this role – what examples …

A Simple Way To A Good Night’s Sleep

Originally at: https://snoringmouthpiecereview.org/sleeptight/a-simple-way-to-a-good-nights-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 machines are the most common equipment used to cure sleep apnea. Wearing this particular machine can help stop snoring. However, it’s not the most convenient way to get a good night’s sleep. You might even find it uncomfortable to wear.

A CPAP machine comes with a mask that’s attached to a machine. When you wear the mask, it’s going to cover your whole face. It’s not exactly the sexiest thing to wear in bed but it’s going to help lessen, if not, stop your snoring.

There’s an …

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

Originally at: http://julieflygare.com/celebrating-20-years-since-narcolepsys-big-breakthrough-hypocretin-orexin/

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 caught up with Dr. Mignot to ask him how he felt about the 20th anniversary of his discovery.

“The ride has been spectacular,” described Dr. Mignot. “From isolation of the hypocretin/orexin receptor gene in dogs, to the autoimmune basis of narcolepsy and the implication of the H1N1 flu as a trigger and now hypocretin/orexin agonists to treat patients, it has never been as exciting.” 

Personally, I wasn’t part of the narcolepsy world in 1999, as I still had my hypocretin. My “grand entrance” came a few

How Sleep Affects the Brain at Every Age – Warning Signs to Look For

Originally at: https://doctorstevenpark.com/functional-oral-and-airway-health-summit

Watch My Interview on the Functional Oral and Airway Health Summit

Register now to watch my interview titled “How Sleep Affects the Brain at Every Age – Warning Signs to Look For” on the The Functional Oral and Airway Health Summit, August 19-25, 2019. There will be 28 experts over a course of 7 days. 

Who is this Summit For?  

It’s for YOU, if…

  • You worry that maybe you “don’t know what you don’t know” about your health
  • You worry that you snore – or wonder if you do.  
  • You worry about proper nutrition and eating for a healthy mouth – and body. 
  • You have kids with crooked teeth and wonder are braces the answer?  
  • You worry that you are always tired. Is it your sleep or a breathing issue?  
  • You’ve had heart problems and want to minimize your risk in the future.  
  • You’re worried about Alzheimer’s  
  • You’re worried about the cost of dental (and medical) care and the changes in insurance
  • You want to learn from experts who treat patients every day 
  • You want to learn from experts who teach in dental and medical schools
  • You’ve heard that ADHD is the result of a sleep breathing disorder 
  • You want all this information in easy-to-understand terms  

You will learn from 22 New + 6 past favorite expert speakers more about:

  • How sleep affects the brain through all ages and what warning signs to look for 
  • Why cancer patients should see a dentist before treatment to lessen side effects
  • How humming can reduce insomnia, depression, anger and much more
  •  Why your mouth may be giving you Alzheimer’s
  • The facts about oral cancer, what you can do and what your dentist should do 
  • Tips for dental office visit safety from an OSHA expert
  • What dentists and patients can do to combat antibiotic resistance
  • How to fix your gut microbiome, starting with your mouth 
  • Watch the documentary film Say Ahh- The Cavity in Health Care Reform 
  • And much more!  

Click here to register for free.

 

 

The post How Sleep Affects the Brain at Every Age – Warning Signs to Look For appeared first on Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring.

from Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and SnoringBlog – Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring https://doctorstevenpark.com/functional-oral-and-airway-health-summit…

Sleep Talk: Episode 44 – Alcohol and Sleep

Originally at: https://sleephub.com.au/podcast-44/

Episode 44: Alcohol and Sleep

Alcohol is commonly used as a sleep aid, but does it really help sleep? We talk with Dr Rowan Ogeil about the impact of alcohol on sleep as well as other health effects.

Dr Moira Junge (Health Psychologist) and Dr David Cunnington (Sleep Physician) host the monthly podcast, Sleep Talk, talking all things sleep.

Leave a review and subscribe via Apple Podcasts

Audio Timeline / Chapters:

  • 00:00 – 02:33 Introduction
  • 02:33 – 26:28 Theme – Alcohol and Sleep
  • 26:28 – 27:22 Clinical Tip
  • 27:22 – 29:50 Pick of the Month
  • 29:50 – 30:46 What’s Coming Up?

Next episode: Sharing a bed

Links mentioned in the podcast: 

Presenters:

Guest interviews:

Dr Rowan Ogeil’s research has centred on understanding the impact that behaviours, particularly shift work and drug use, have on psychological outcomes, chiefly health and sleep states. Rowan’s research has employed translational methods across genetic, behavioural, and population levels to deliver significant impacts. To date he has published more than 50 peer-reviewed papers and book chapters, many in leading journals. Rowan’s work is highly regarded both in Australia and internationally, and he has previously held an NHMRC Peter Doherty Fellowship, and an Australia-Harvard fellowship. Rowan coordinates a unit in the Monash University Masters of Addictive Behaviours, and contributes to other undergraduate and postgraduate courses.

Regular hosts:

Dr Moira JungeDr Moira Junge is a health psychologist working in the sleep field, who has considerable experience working with people with sleeping difficulties in a multidisciplinary practice using a team-based approach. Moira is actively involved with the Australasian Sleep Association (ASA) and a board member of the Sleep Health Foundation. She has presented numerous workshops for psychologists and is involved with Monash University with teaching and supervision commitments. She is one of the founders and clinic directors at Yarraville Health Group which was established in 1998. In addition to her expertise in sleep disorders, her other areas of interest and expertise include smoking cessation, psychological adjustment to chronic illness, and grief and loss issues.

 

Dr David CunningtonDr David Cunnington is a sleep physician and director of …

Sleep Talk: Episode 43 – Sleep Research Update

Originally at: https://sleephub.com.au/podcast-43/

Episode 43: Sleep Research Update

Hear the latest updates on sleep research from the Sleep 2019 meeting. In this episode we talk with Dr Simon Frenkel about the latest research in sleep.

Dr Moira Junge (Health Psychologist) and Dr David Cunnington (Sleep Physician) host the monthly podcast, Sleep Talk, talking all things sleep.

Leave a review and subscribe via Apple Podcasts

Audio Timeline / Chapters:

  • 00:00 – 02:50 Introduction
  • 02:50 – 26:14 Theme – Sleep Research Update
  • 26:14 – 27:14 Clinical Tip
  • 27:14 – 31:29 Pick of the Month
  • 31:29 – 32:30 What’s Coming Up?

Next episode: Alcohol and Sleep

Links mentioned in the podcast: 

Presenters:

Guest interviews:

Dr Simon Frenkel is a Respiratory and Sleep Disorders Physician with more than 10 years experience. In addition to working at the Western Hospital in Melbourne, he is one of the Directors at Lung and Sleep Victoria where he consults in Respiratory and Sleep Medicine. His Sleep Medicine interests are diverse, with particular emphasis on non-respiratory sleep disorders and multidisciplinary models of care. He is actively involved in sleep education and is co-chair of the Sleep Physicians Council of the Australasian Sleep Association.

Regular hosts:

Dr Moira JungeDr Moira Junge is a health psychologist working in the sleep field, who has considerable experience working with people with sleeping difficulties in a multidisciplinary practice using a team-based approach. Moira is actively involved with the Australasian Sleep Association (ASA) and a board member of the Sleep Health Foundation. She has presented numerous workshops for psychologists and is involved with Monash University with teaching and supervision commitments. She is one of the founders and clinic directors at Yarraville Health Group which was established in 1998. In addition to her expertise in sleep disorders, her other areas of interest and expertise include smoking cessation, psychological adjustment to chronic illness, and grief and loss issues.

 

Dr David CunningtonDr David Cunnington is a sleep physician and director of Melbourne Sleep Disorders Centre, and co-founder and contributor to SleepHub. David trained in sleep medicine both in Australia and in the United States, at Harvard Medical School, and is certified as both an International Sleep Medicine Specialist and International Behavioural Sleep Medicine Specialist. David’s clinical practice covers all areas of sleep medicine and he is actively involved in training health …

How To Find The Right Sleep Professional [Podcast 69]

Originally at: https://doctorstevenpark.com/sleepprofessional

One of the most common questions I get asked is, “Where can I find someone like you in my area to help me with my sleep problem?” Even in big cities like New York and Los Angeles, people are frustrated by not knowing where to even start.

In this episode, Kathy and I will give you my long answer, including who, why, how, where and what to look for when starting or troubleshooting your sleep-health journey.

Download mp3  |  Subscribe  |  Transcript


Shownotes

Sleep Interrupted: A physician reveals the #1 reason why so many of us are sick and tired 

Cognitive Behavioral Therapy for Insomnia 

Totally CPAP: A Sleep Physician’s Guide to Restoring Your Sleep and Reclaiming Your Life

Inspire hypoglossal nerve pacemaker

Academy of Orofacial Myofunctional Therapy

Myofunctional therapy for OSA meta-analysis

Dr. Melvin Moss

Paula Fabbie, myofunctional therapist 

AHI < 5 sleep endoscopy study

American Academy of Dental Sleep Medicine

American Academy of Sleep Medicine Oral Appliance guidelines

Interview with Dr. Bill Hang

Interview with Dr. Kasey Li on maxilla-mandibular advancement

 

 

The post How To Find The Right Sleep Professional [Podcast 69] appeared first on Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring.

from Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and SnoringBlog – Doctor Steven Y. Park, MD | New York, NY | Integrative Solutions for Obstructive Sleep Apnea, Upper Airway Resistance Syndrome, and Snoring https://doctorstevenpark.com/sleepprofessional…