Narcolepsy 360

TW: This episode discusses sexual assault and rape, which may be triggering for some individuals.

Lauren Thomas is a person with narcolepsy, a narcolepsy advocate and works in the champagne business.

In this vulnerable and candid episode, Lauren shares how she was diagnosed with narcolepsy just a little over a year and a half ago, but recounts how narcolepsy symptoms were part of her childhood. Lauren also shares her journey with mental health issues, which she now considers were linked to narcolepsy and directly contributed to her delayed diagnosis. After college, she finally saw an endocrinologist, who was helping her with weight loss and recommended a sleep study. This was a pivotal experience that led to a diagnosis of Type 1 Narcolepsy at the age of 28.

Despite Lauren's long journey to diagnosis, she's taken time to fine tune her medication and adapt her life to support her symptom management, and during this period began to work for her family's company, Cheurlin Champagne, the 1st African American-owned Champagne Company.

Lauren also tested positive for COVID-19 this past March. She shares her experience fighting the virus and how her symptoms weren't necessarily the standard symptoms being communicated.

You can follow Lauren at @lmt826 on Instagram and her family's business, Cheurlin Champagne, @cheurlin1788 on Instagram. If you are interested in finding out more information about Cheurlin Champagne go to www.cheurlin.com. Lauren recommends Wide Awake and Dreaming by Julie Flygare. She is on the planning committee for World Narcolepsy Day with Project Sleep. She also recommends an alarm clock called MedCenter. She says, " I am obsessed with my talking alarm clock. I can set up to 4 different alarms at a time and it literally says 'the time is .... this your reminder to take your meds..' relentlessly, it's annoyingly efficient!"

You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Dr. David Ingram is a pediatric sleep physician at Children's Mercy Hospital. In addition to caring for children with sleep problems in clinic, he is the founding editor of the ATS Pediatric Sleep Case Series and is adjunct faculty in the department of psychology where he teaches a college Sleep & Dreams course.

In this episode, Dr. David Ingram shares when he first learned about sleep medicine and why he chose to become a sleep medicine clinician. Dr. Ingram also shares how he approaches his pediatric treatment of children with narcolepsy. Claire and Dr. Ingram discuss transitional care for CWNs, assessing driving readiness in adolescents with narcolepsy and current research he is conducting in collaboration with Wake Up Narcolepsy. Dr. Ingram shares what surprised him about his findings in the recent research study. Its purpose is to better define the delivery of comprehensive care for children with narcolepsy, with a multidisciplinary approach to treatment.

Dr. Ingram will be presenting "Care for the Child with Narcolepsy: A Survey of Families and Providers" at our upcoming WUN Narcolepsy Webinar on July 18, 2020. This WUN Education Day is free and can be attended from the comfort of your home! Click here to register for the webinar.

We are grateful to Dr. Ingram's dedication to pediatric sleep medicine and his work to help expand the field's understanding of effective treatment for CWNs and their families.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Shannon Burkoth is a person with narcolepsy, mother, and narcolepsy advocate in the rare disease space.

In this episode, Shannon shares how she was diagnosed with narcolepsy when she turned 30, but since then has realized she experienced narcolepsy symptoms since she was a child. Shannon also offers her journey to finding the right doctor and medication. She highlights how people with narcolepsy often deal with multiple comorbid issues which can be exacerbated with the wrong medication.

Shannon also shares her journey to becoming a narcolepsy and rare disease advocate. She highlights the grief experience after being diagnosed and no longer able to do the activities she once enjoyed. Through conferences, meeting other advocates, and participating in the Rising Voices of Narcolepsy program, Shannon is empowered to share her story to educate and create awareness.

Shannon thank you for your advocacy! You can follow Shannon at @shannon.burkoth on Instagram and @sburkoth on Facebook. You can learn more about Shannon's advocacy work at shannonburkoth.com. Shannon says, "I want all people with narcolepsy to know they are not alone and there is an incredible community waiting to embrace them!" Shannon recommends Project Sleep's Rising Voices of Narcolepsy program, Wake Up Narcolepy's Online Support Groups, Narcolepsy 360 podcast, Wake Up Narcolepy's Family Camp for CWN and Narcolepsy Network Annual Patient Conference.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Kelly Main is a person with narcolepsy, studying law, and expert sailor living in New Zealand.

In this episode, Kelly shares that she struggled with narcolepsy symptoms since her childhood, but because she was so active in sports her diagnosis was delayed. Doctors believed she was tired from growing and her very physical activity. Kelly has had a passion for sports and found herself excelling once she discovered sailing. She was on a competitive school sailing team, they ended competing in New Zealand & Australia Secondary School Championships. Her team won ALL the races that day.

Kelly also shares her experience navigating friendships and social life while undiagnosed and how she struggled with people not understanding her sleepiness. In university, Kelly began researching her symptoms and found information on narcolepsy. She took the evidence to a doctor, conducted a sleep test and was diagnosed. This was less than a year ago.

It was a pleasure to hear Kelly's story. You can follow Kelly at @kelimain on Instagram.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.

We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Wake Up Narcolepsy's Executive Director, Claire Wylds-Wright talks with Lindsay Jesteadt, Director of Development at Wake Up Narcolepsy. Claire has experiencing homeschooling and Lindsay has a PhD in Educational Leadership with an emphasis on Special Education Policies and Procedures. She has held an assistant principal position and teaching graduate-level students online. Both Claire and Lindsay are parents to children with narcolepsy.

In this discussion, Claire and Lindsay share their current experience homeschooling their kids while working a fulltime job while safer at home protocols are in place. They share insights about the main issues the educational system is facing during the mandated homeschooling. They discuss from their experience the potential positives and negatives for CWN being educated at home. They share resources that may be helpful for students and parents who are experiencing homeschooling during this time.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.

We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our fifth episode in our Doing Life During COVID-19 miniseries is addressing trauma, grief, isolation during the time of a global pandemic. Wake Up Narcolepsy's Executive Director, Claire Wylds-Wright has a conversation with Dr. Cynthia Eriksson, Associate Professor of Clinical Psychology and Chair the PsyD Program at Fuller Theological Seminary and Dr. Alison Wong, Assistant Professor of Marriage and Family Therapy and Director of Research of Fuller Psychological and Family Services at Fuller Theological Seminary.

Claire, Dr. Eriksson and Dr. Wong cover how to recognize the emotions you are feeling during a traumatic global pandemic, tips on how to acknowledge your feelings, how to reduce stress, how to grieve and finally ways to find support. This conversation specifically focused on people with narcolepsy and families with PWN.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.

We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our fourth episode in our Doing Life During COVID-19 miniseries is addressing food + nutrition during the pandemic. Wake Up Narcolepsy's former executive director, Claire Wylds-Wright, has a conversation with Andre Royal, chef, entrepreneur, author and PWN. They discuss what food to focus on to boost your immune system, to give yourself grace, tips on how to meal prep, and staple pantry items to have.

Andre and Claire also talk about Andre's new coloring book that he authored and his son illustrated- The Hippo Critic. It may be a great way to relieve stress while practicing safer at home protocols.

Here are some websites he recommends you check out to help you with cooking at home!

• AllRecipes.com
  • ( tip: check the ratings and the comments of recipes you are interested in cooking)
• Cookie + Kate
• Serious Eats- Corona Virus Cooking Guide on Beans
  • (Excellent tips overall, even on technique)
• MadCap Narcolepsy
  • (Narcolepsy Dietary & Lifestyle Changes)

You can follow Andre on Instagram and Facebook. You can learn more about his new book The Hippo Critic on Instagram, Facebook and Twitter.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.

We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our third episode in our Doing Life During COVID-19 miniseries is addressing pediatric care during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Wylds-Wright has a conversation with Dr. Kiran Maski, Director of Sleep Clinic and Department of Neurology at Boston Children's Hospital, about pediatric treatment during the time of COVID-19. They discuss symptom management, the effects of homeschooling, what over the counter medication you should consult with your doctor about if your child is showing symptoms of the virus, and what research Dr. Maski is currently focusing on.

Please see details below if you would like you and your child would like to participate in her current focus group.

Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS)

Narcolepsy is a chronic neurologic condition that tends to occur most frequently during childhood and adolescence. Currently there is no tool to assess the symptoms of narcolepsy that most significantly impact daily functioning of children with narcolepsy.

We are conducting a study to develop a clinical tool health care providers can use to assess pediatric narcolepsy symptoms.

Pediatric patients with narcolepsy and their parent/guardian are invited to take part in a 90 minute on-line, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. As a thank you for participating in the focus group, you will receive a $50 gift card.

Who is eligible for this study?

• Patients between the ages of 8-12 years with a diagnosis of narcolepsy AND one parent/guardian
• Participants must be able to understand the purpose of the study

If you would like more information on study requirements, compensation, or eligibility, please call the Neurology Sleep Research team at 617-919-6212 or email us at [email protected]

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our second episode in our Doing Life During COVID-19 miniseries is addressing exercise and movement. In this episode, Wake Up Narcolepy's Executive Director, Director, Claire Wylds-Wright interviews Belle Hutt, a personal trainer, author and PWN about the importance of exercise and movement for PWNs.

You can follow Belle at @bellehut on Instagram and you can get her book #EnergeticNarcoleptic on her website www.bellehutt.com.

You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

Part of Wake Up Narcolepsy's mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our first episode in our Doing Life During COVID-19 miniseries is addressing mental health and mindfulness practices. In this episode, Wake Up Narcolepy's former executive director, Claire Wylds-Wright, has a conversation with Dr. Jason Ong, Associate Professor in the Department of Neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with narcolepsy, especially during this time of safer at home.