The Neurology Lounge

In this episode, I review the four main mimics of Parkinson’s disease, also called the Parkinson’s Plus syndromes. These are multiple system atrophy (MSA), dementia with Lewy bodies (DLB), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD). I explore the clinical manifestations, investigations, and treatments of these disorders, highlighting such striking features as autonomic dysfunction in MSA, unusual eye movements in PSP, fluctuating cognition in DLB, and alien hand syndrome with CBD. I also illustrate the patient perspectives of the disorders with such illness memoirs as those of Kimberly Bohannon titled The Beautiful Destruction of My Life, of Bill Sydnor titled Living Day by Day With MSA, that of Claire Verney titled Notes of a Love Song, that of Steve Dagnell titled You, Me & PSP, and that of Evelyn Walsh titled Parkinson’s Plus: A Woman’s Struggle Battling Alien Movements.

I am joined in this exploration of narcolepsy by Julie Flygare, an internationally recognized patient-perspective leader, and an accomplished advocate, to discuss her patient perspective of the disease as narrated in her award-winning memoir, Wide Wake and Dreaming. Julie has advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. Our conversation explored Julie’s onset of narcolepsy with excessive sleepiness long before she was diagnosed with narcolepsy after she developed cataplexy. She discussed her on-going struggles with the diverse symptoms of the disease, as well as here validating investigations, and indispensable medical treatments. Our conversation also covered what her diagnosis has taught her regarding prioritising time and appreciating the moment. Prior to accepting her current role as President & CEO of Project Sleep, Julie Flygare served as President of Project Sleep’s Board of Directors, while also gaining invaluable experience in marketing and philanthropy at the Pancreatic Cancer Action Network and City of Hope. Julie served on the National Institutes of Health’s Sleep Disorders Research Advisory Board from 2012 – 2015, and she delivered the TEDx Talk, “What Can You Learn from a Professional Dreamer? on March 22, 2022,

In this episode, I explore the curious sleep disorder narcolepsy. With apt patient memoirs, I describe its clinical manifestations, from sleep attacks and cataplexy, to sleep paralysis and sleep-related hallucinations. I also review its association with other sleep disorders, and its non-sleep related manifestations. The podcast also discusses the genetic and acquired causes of narcolepsy, its association with hypocretin deficiency, and its risk factors. I also explore the investigations of narcolepsy, such as multiple sleep latency test, and its treatments, such as modafinil and sodium oxybate. I also discussed the history of narcolepsy, such as anecdotes its discovery by Jean-Baptiste Édouard Gélineau. I also narrate the history of how sleep researcher Eugene Aserinsky discovered the two sleep phases, REM and non-REM. To illustrate the lived experience of narcolepsy, I cite such insightful patient memoirs as that of Corrina Wetzel titled The Journey Beneath Her Heavy Feet, by Henry Nicholls titled Sleepyhead, and of Claire Crisp titled Waking Mathilda. To support the historical themes, I cite such works as When Brains Dream, by Antonio Zadra and Robert Stickgold, and A Portrait of the Brain by Adam Zeman.

I am joined in this episode by journalist Lauren Aguirre, an award-winning science journalist, to explore the neuroepidemiology work of neurologist Jed Barash and colleagues which revealed the existence of a silent epidemic of what is now named opioid associated amnestic syndrome. Lauren chronicled the onset and progress of the epidemic using the two index cases she described in her book. She narrated the way Barash and colleagues went about convincing the public health authorities and the CDC about the existence of the epidemic, and how they got the neurology community to pay attention to it. We discussed the related anecdotes that Lauren used to complement her book, especially that of Patient HM, just as we explored the way that the research in opioid associated amnesia has progressed since it was established as a neurological entity. Apart from The Memory Thief, Lauren Aguirre is also the author of Secrets Behind How We Remember, a 2022 PEN/EO Wilson Science Literary Award finalist. And as a staff member for the PBS series NOVA, she produced documentaries, short-form video series, podcasts, interactive games, and blogs. Lauren Aguirre’s articles on memory and addiction have appeared in STAT, The Boston Globe, Undark, The Atlantic, The Scientist, and PBS. She is currently at work on a historical novel set in the early 1900s at a colony for epileptics in upstate New York.