Narcolepsy 360

Latest Episodes:

Narcolepsy 360: Betsy Ashcraft Apr 25, 2019

Show notes

This is this second of a two-episode series in our deep dive into idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Betsy Ashcraft.

Betsy Ashcraft is a retired lawyer who practiced law for over 20 years specializing in securities and corporate litigation, and capital markets. She is also the mother of a person with idiopathic hypersomnia.

In this episode, Claire and Betsy discuss the journey to get her son properly diagnosed with IH and how originally doctors believed he had narcolepsy. Betsy details the symptoms that she saw in her son that didn't line up with narcolepsy symptoms and how an article on Dr. David Rye helped her realize he had IH.

Betsy also shares about the programs, awareness work and resources the Hypersomnia Foundation provides to those who are seeking out more information about idiopathic hypersomnia.

To find out more information about Idiopathic hypersomnia go to www.hypersomniafoundation.org. You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on 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 iTunes.

Narcolepsy 360: Dr. David Rye Apr 11, 2019

Show notes

This is this first of a two-episode series in our deep dive into Idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Dr. David Rye.

Dr. David Rye is Professor of Neurology at Emory University, board certified in Neurology and Sleep Medicine. Dr. Rye is also chair of the Scientific Advisory Board for Hypersomnia Foundation.

In this episode, Claire and Dr. Rye discuss Idiopathic hypersomnia, another complex sleep disorder that often takes people with Idiopathic hypersomnia years to get properly diagnosed. He details the differences between IH and narcolepsy and current treatments for Idiopathic hypersomnia. He also shares the good work that Hypersomnia Foundation is doing to inform and spread awareness about Idiopathic hypersomnia.

Narcolepsy 360: Anna Leigh Marr Mar 30, 2019

Show notes

Anna Leigh Marr is an actor, writer, voice-over artist and a person with Narcolepsy. In this episode, Anna shares her diagnosis journey whereupon it took 4 years to get properly diagnosed and all they while she completed her BA at Northwestern University. Claire and Anna discuss our culture's glorification of the overworked/underslept lifestyle and how it might confuse those experiencing symptoms of narcolepsy.

Anna also shares her experience of being an actor and writer with a focus on comedy and improv while her cataplexy was slowly developing. Anna is determined to be an advocate for others with narcolepsy and spreading awareness through comedy that doesn't perpetuate stereotypes or spread misinformation. Currently, she is developing a web series about a comedian trying to make in NYC while coming to terms with their narcolepsy and cataplexy. She is highlighting the funny and potentially awkward things that narcolepsy brings out in life.

Anna also is the co-founder of Bluelaces Theatre Co. which creates immersive, multi-sensory theatrical experiences specifically designed for audiences with autism and other developmental differences.

You can follow Anna at @marrzipanna on Instagram and Twitter. You can find out more about Bluelaces Theatre Co. at www.bluelaces.org/. She recommends participating in the Project Sleep's Rising Voices of Narcolepsy program. She also recommends doing CBT (cognitive behavioral therapy) as part of your symptom management and find a behavioral sleep specialist in your area.

Narcolepsy 360: Sara Kowalczyk Mar 14, 2019

Show notes

Sara Kowalczyk is a mother and women's health patient advocate, clinical researcher, regulatory writer and person with Narcolepsy. In this episode, Sara shares her diagnosis story but also her decision and experience in becoming a mother.

Claire and Sara discuss how Sara developed an expertise on narcolepsy and women's health while going through two pregnancies with narcolepsy/cataplexy. She conducted a survey and has led support groups surrounding narcolepsy, pregnancy and motherhood.

Sara earned 2 masters-level degrees from Boston University in medical science and public health (epidemiology and biostatistics). She has conducted independent survey-based research studies on pregnancy perceptions and experiences, cognitive-related symptoms, and patient reported outcomes (the latter is called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). When Sara isn't working on her passions related to patient advocacy, she is enjoying time spent with her family and adorable children, Brendan and Julia.

Sara recommends the following Facebook Groups: Xyrem Support group, Pregnant people with narcolepsy and mothers, Narcolepsy/cataplexy education focused group and BUNIHPPS.

Narcolepsy 360: Andre Royal Feb 28, 2019

Show notes

Andre Royal is a father, chef, entrepreneur, and person with Narcolepsy. In this episode, Andre shares his complicated journey to get properly diagnosed since he was living with multiple complicated medical conditions.

Getting diagnosed created a career crossroads for Andre. Since then, Andre has worked to find a career that will best support him and his schedule but also fulfill him in the work that he is doing. Feeling inspired by the power of social media, Andre began posting food creations on Instagram which built his reputation in his community. This has led him to be sponsored by food companies but also launch a non-profit!

Suddenly Sleepy Sleepwalk is an annual 5k that raises awareness about narcolepsy in Eugene, Oregon. It is a fun-filled family event and if you are close by please come out on March 10, 2019, and participate. This next year Suddenly Sleepy will become a non-profit and continue to expand its opportunities to raises awareness about narcolepsy.

You can follow Andre at @chef_andre_royal on Instagram and @chefandreroyal on Facebook. You can also learn more about Suddenly Sleepy Sleepwalk here and follow along at @suddenlysleepysleepwalk5K on Instagram.

Narcolepsy 360: Tara Stuart Feb 14, 2019

Show notes

Tara Stuart is a mother, teacher, daughter of a person with narcolepsy and currently training for the Boston Marathon. In this episode, Tara shares her memories of growing up with her father having narcolepsy and how it affected their family.

Tara's dad wasn't properly diagnosis well into his late 20s early 30s. He worked for his family's construction company where he was able to accommodate his need to take naps. Tara's dad is turning 90 this year and she decided to join Wake Up Narcolepsy's 2019 Team for the Boston Marathon in honor of him. This opportunity has opened up her family to reflect and dialogue about their childhood. Her dad has even taken to writing down his memories. It is a sweet treat to hear their story through Tara.

You can follow Tara and support her in her marathon training by donating here.

Narcolepsy 360: Erin Carey Jan 31, 2019

Show notes

Erin Carey is a mother of five girls and two are CWN (children with narcolepsy). When Kyla started showing symptoms of narcolepsy Erin initially thought it was diabetes. When Kyla communicated she was falling asleep at school, Erin knew due to her sister's own diagnosis of narcolepsy, that Kyla most likely had narcolepsy as well.

In this episode, Erin shares how once Kyla was properly diagnosed she knew that Kendall, Kyla's younger sister, also had narcolepsy. Erin had her family get genetic testing to see if any of the other kids had the genetic marker. Kendall did and shortly after was diagnosed with narcolepsy.

As a mother two children with narcolepsy, Erin details how she works to allow her family to be able to do what they love. When it comes to medication, schedule and schooling Kyla and Kendall have differing plans, but the entire family has adapted to the Keto diet. Erin now is a keto coach and also started a non-profit FACES (Families and Children Experiencing Symptoms) of Narcolepsy.

You can follow Erin and learn more about FACES at https://facesofnarcolepsy.org/ and @FACESofNarcolepsy on Facebook. You can also learn more about keto on Keto with Erin Facebook Group

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

Narcolepsy 360: Kelsey Biddle Jan 25, 2019

Show notes

Kelsey Biddle is a PWN (person with narcolepsy) that was diagnosed, just over a year ago, with Type 1 Narcolepsy. In this episode, Kelsey shares the unique journey of being diagnosed within six weeks of the onset of symptoms.

Kelsey has taken this past year to fully transition into her "new normal" by finding the right medications and creating a supportive schedule that allows her to do her job well as a clinical research coordinator in an Alzheimer's research group in the Psychiatry & Neurology department at Brigham & Women's hospital.

Kelsey shares with Claire how she has allowed herself to grieve since coming to terms with her narcolepsy, but also she hasn't given up hope in becoming a doctor. Kelsey offers great advice on self-care and how she schedules her days to promote wakefulness. Oh, and Kelsey is currently training for the Boston Marathon! Kelsey is part of Wake Up Narcolepsy's 2019 Team for the Boston Marathon and is working to raise $50,000 for narcolepsy research.

You can follow Kelsey at @biddlekd on Instagram and Facebook. You can also follow her @kbiddle616 on Twitter. If you are interested in Kelsey's "coming out" story click here. You can also support her in her marathon training by donating here.

Narcolepsy 360: Dr. Brian Murray Jan 17, 2019

Show notes

Dr. Brian Murray is an Associate Professor, Neurology and Sleep Medicine at University of Toronto Department of Medicine, Chair of Royal College Specialty Committee in Neurology and Head of Division of Neurology & Chair of Research Ethics Board Sunnybrook Health Sciences Center. Dr. Murray cares mostly for adult people with narcolepsy and also, young adults with narcolepsy transitioning from pediatrics into adult care.

In this episode, Dr. Murray shares his expertise and approach to supporting the young adult patients who are transitioning into adult care. Claire and Dr. Murray discuss college accommodations, medication responsibility, life & family planning, and sleep hygiene.

Dr. Murray also offers insight into how treatment may change or rather be fine-tuned with the digitization of sleep studies. He also shares simple ways you can utilize health tracking apps on smartphones to better gather data on individual's daily symptoms and management of those symptoms.

We are grateful for Dr. Murray's insight and passion for treating PWN's and supporting them to have a full life.

Narcolepsy 360: Gina Dennis Jan 11, 2019

Show notes

Gina Dennis is a PWN (person with narcolepsy), but is also an FWN (family with narcolepsy), since her mother, son and ex-husband all have narcolepsy. In this episode, Gina shares the decades-long journey to be diagnosed with narcolepsy. She remembers having narcoleptic symptoms as early as 5 years old but wasn't diagnosed until her thirties.

Once her son was diagnosed, she deep dived on the internet to help finds ways to mitigate his symptoms. In her research, she found adapting to a low-carb eating lifestyle could mitigate symptoms. Naturally, she experimented with herself first and convinced her family to try this eating habit as well. Gina, her mom and son all are keto and it has brought greater energy and outlook to them all.

Gina has since shared her findings with the narcoleptic community, became a Certified Health Coach, and launched a website called Madcap Narcolepsy. In her free time, she coaches others on holistic approaches and lifestyle changes to live a more wakeful life.

You can follow Gina @madcapnarcolepsy on Facebook, Instagram, Youtube and @MadcapMiss on Twitter. Interested in learning more about Gina and her work? Go to madcapnarcolepsy.com. Interested in learning more about Keto? Join her Madcap Keto for Narcolepsy Facebook Group.

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