The Neurology Lounge

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.

In this brief podcast, I count down 10 unusual but unique headaches that may be perplexing for patients, and challenging for doctors to diagnose.

In this episode, I explore the intriguing condition of amnesia, the isolated loss of memory with the preservation of other cognitive disorders.

I use remarkable patient anecdotes, such as those of musician Clive Wearing, and of Jimmie G, a patient of neurologist Oliver Sacks, to illustrate the diverse causes of amnesia, from herpes virus encephalitis to chronic alcoholism.

I also narrate the clinical spectrum of amnesia with an emphasis on Korsakoff’s syndrome and transient global amnesia or TGA.

The podcast also goes back in time to review the case of Henry Molaison, the man whose profound amnesia, the consequence of experimental surgery for epilepsy, opened the way to our understanding of how memory works.

In this podcast, I am joined by Susan Mockler to discuss her harrowing experience of traumatic spinal cord injury, which she narrated in 'Fractured'. This is her memoir that detailed her experiences with acquired disability following a car accident which left her with a spinal cord injury.

She recalls how she sustained a cervical spinal injury as the front seat passenger of a car that hit a moose, and the devastating near-total paralysis that followed. She also explored her emotional response to the injury, and the mental attitude she adopted to help her through a reasonably successful, and on-going rehabilitation.

Susan Mockler is a writer and retired clinical psychologist living in Kingston, Ontario, Canada. Her essays and stories have a appeared in a range of American and Canadian publications.

In this episode, I explore the two catastrophic forms of traumatic neurological injury, brain and spinal cord. I discuss the life-changing physical consequences of traumatic neurological injury, and the equally harrowing but often invisible emotional fallouts.

I particularly highlight the often incomprehensible ways by which neurological injuries result – from riding horses and diving into pools, to boat and road traffic accidents. I illustrate the diverse features of traumatic brain injury with prominent historical cases which highlight its causes and manifestations and complications.

One is the case of Phineas Gage, as described by Antonio Damasio in his classic book 'Descarte’s Error'. Damasio narrated the astonishing head injury Gage sustained when a tamping rod penetrated his head when he was setting charges as part of his railroad work, a case that demonstrates the impact of traumatic brain injury on personality and judgement.

I also use more recent graphic patient memoirs, such as those of Cathy Crimmins titled 'Where is the Mango Princess', to portray the diverse dimensions of traumatic brain injury, and that of Melanie Reid titled 'The World I Fell Out Of', to show the mechanism and devastation of traumatic spinal cord injury.

I also discuss the modern acute management of neurological injury, the short- and long-term complications, and the arduous rehabilitation process that follows.

In this episode I count down 10 top causes of insomnia, and these range from the habitual to the pathological. I also highlight the treatment approaches to these.

I am joined in this podcast by Randye Kaye to discuss the patient and family perspectives of schizophrenia as she narrated in her memoir titled Ben Behind His Voices. Randye is a radio and podcast host, actress, singer, teacher, mental health advocate, and motivational speaker who speaks to groups of doctors, nurses, medical students, families, providers, and legislators regarding the family experience when mental illness hits.

Our conversation chronicled her experience of witnessing and managing her son’s struggles with schizophrenia. She highlighted the long prodrome of adolescent behavioural and mood changes which she pointed out typifies the onset of the illness in boys as opposed to girls. She discussed many of the other early indicators of the illness which the family and his teachers normalised and explained away as adolescent adjustment, and these included social isolation, paranoid and grandiose ideas, odd behaviours.

We also discussed the progression of Ben’s illness as he performed poorly academically and dropped out of school, and as he struggled to maintain his family relationships and friendships. Randy also explored the long journey they took to getting a diagnosis, and longer still to get effective treatments, delays she argues contribute to poorer outcomes in schizophrenia. She discussed his different treatments, and his struggles to adhere to them.

Other themes we covered are the familial and environmental vulnerabilities to schizophrenia, its social triggers, the stigma of mental illness, how to support families coping with schizophrenia, and the importance of maintaining hope.

Randye also leads fun and interactive workshops on teamwork, customer service, self-esteem, presentation skills, and humour, and gives inspiring keynotes about connection and communication. She has narrated almost 190 audiobooks to date.

In this podcast episode, I explore the diverse facets of the debilitating mental illness schizophrenia. I particularly highlight its varied manifestations such as delusions, hallucinations, disorganised thoughts and abnormal behaviours.

I illustrate these concepts with insightful illness memoirs, such as the classics Is There No Place on Earth for Me, by Susan Sheehan, The Centre Cannot Hold, by Ellen Saks, and A Beautiful Mind by Sylvia Nasar'. These especially demonstrate the frequent manifestation of the disease as paranoid schizophrenia with grandiose and paranoid delusions. I use these memoirs to explore the genetic, environmental and maternal risks factors of schizophrenia, the long-term and frequently relapsing course of the disease, and the requirement for treating with a combination of drug and psychological therapies.

I also use illness memoirs to highlight other dimensions of schizophrenia. For example, I use the memoir by Lori Schiller titled A Quiet Room, to show how schizophrenia can present first with mood changes, the book by Patrick Cockburn titled Henry’s Demons, to illustrate the extreme behavioural abnormalities that can accompany the illness, and the story of Douglas Goncalves titled A Journey Through a Psychotic Breakdown, to show how a confluence of life events serve as a trigger for the disease to emerge.

I also explore the mimics of schizophrenia, and I illustrate these with such memoirs as that of Esme Weijun-Wang titled The Collected Schizophrenias, to illustrate schizoaffective disorder, and Inferno by Catherine Cho, to demonstrate post-partum psychosis.

Other relevant themes of the podcast are the impact of the diagnosis on family and careers, the risk of suicide, and the importance of admission to hospital in recovery.