9.Here's a Warrior: Neurological Perspective to Ehlers-Danlos Syndrome ft. Carter Hemion

Today's episode is with Lisa Lauter, a nurse and public health advocate, raising awareness for encephalitis and promoting holistic and conventional medicine approaches to recovery. When she received a devastating diagnosis of autoimmune encephalitis (AE), Lisa deliberately began implementing changes to her diet and mindset and started utilizing holistic health practices, intensive rehabilitation therapy, and conventional medicine approaches to achieve recovery. By making changes one step at a time over a five-year journey to health, she achieved a remarkable recovery. In this episode, we talk about Lisa's diagnosis journey and specifically focus on the devastating seizures she experienced. She then shares the lifestyle changes she implemented to recover from her encephalitis and talks about the book she is writing to help all seeking to improve their mental and physical well-being. We also discuss the difference between holistic health and Western medicine, and she offers her unique perspective on the two as a nurse and public health advocate. Lisa's strength to recover and create a healthy lifestyle for herself is awe-inspiring, and she continues sharing her health tips through her blog and work with various organizations.Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcastEmail me at- [email protected] Links Lisa MentionedHer blog: https://www.lisalauter.com/bloghttps://aealliance.org/patient-support/treatment/https://www.encephalitis.info/

This week's episode is with Levi Peterson, a fighter of Idiopathic Intracranial Hypertension, Neuro-Behçet's syndrome, and Parksinon's disease. Levi has also experienced 10 major brain surgeries, resulting in her becoming an expert on shunting technology from past complications. In the past, she was an EMT, and currently, she is a patient navigator, which we expand on in the episode.In addition, Levi shares ways she maintained hope and remained strong through her 10 brain surgeries and how she is using her experiences to help other patients currently. We also talk about the numerous complications Levi endured after her invasive surgeries and how artificial intelligence could play a role in the future of shunts. We later discuss the stigma behind IIH and how new research and technology are playing a role in reducing this stigma and increasing awareness of rare neurological disorders. Levi's bravery and strength are incredible, and her humor makes this episode an entertaining listen! Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me - [email protected] Levi Mentioned/helpful resources:https://rarediseases.org/https://my.clevelandclinic.org/health/diseases/21968-idiopathic-intracranial-hypertensionhttps://www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326

Today's episode is with the CEO and founder of Vistim Labs, James Hamet. In addition to building mind-controlled wheelchairs and ice sculpting, Mr. Hamet focuses on tracking cognitive decline in individuals with neurodegenerative diseases, accelerating diagnosis while allowing for effective disease management in the future. This is done with a technology his company created, which we explore further in this episode. Currently, treatment for Alzheimer's, Parkinson's, and other neurodegenerative conditions is based on preventing symptoms that arise as the disease progresses. However, Mr. Hamet shares why this approach is inefficient and why early detection of neurodegenerative conditions can significantly improve patients' course of treatment and quality of life. In this episode, we also discuss how visuospatial deficits impact those with Alzheimer's and how Vistim Labs utilizes these to track cognitive decline. Mr. Hamet additionally shares Vistim Labs' goals for the future, as well as his ambitions and past setbacks. With partners from all over the globe, Vistim Labs seeks to expand its clinical utility to other disease categories, like Traumatic Brain Injury and Schizophrenia!Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Mentioned links:https://vistimlabs.com/

This week's episode is with Dr. George Ackerman, an attorney and Parkinson's Disease advocate. After being the primary caregiver for his mother, Sharon, who sadly passed away from Parkinson's, Dr. Ackerman strives to help other families experiencing similar struggles. In this episode, Dr. Ackerman starts by sharing heartfelt stories about his mother and the dreadful toll Parkinson's took on her independence and well-being. He later shares the struggles he faced as his mother's primary caregiver and the hardships he and his family experienced, knowing there was no cure for Parkinson's. This leads into our discussion about his inspiration to create Together For Sharon, his website with his mother's story, Parkinson's legislation, and interviews with families and Parkinson's organizations from all over the world. Dr. Ackerman continues to advocate until there is a cure for this terrible disease. Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Email Dr. Ackerman at- [email protected] Dr. Ackerman mentioned:https://www.togetherforsharon.com/https://www.michaeljfox.org/

This week's episode is with Carter Hemion, a public speaker, legislative advocate, and fighter of EDS. Carter shares his long journey with EDS and all the painful experiences and uncertainties he endured before and after diagnosis. We also explore the range of symptoms accompanying EDS, specifically focusing on the neurological symptoms that Carter experiences. Carter is also a dedicated legislative advocate and frequently meets with government officials to raise support and awareness for EDS--we discuss how he recently got May to be EDS and HSD awareness month in Washington state! He is currently advocating for the HELP Copays Act, and we talk about why it is necessary for this bill to be passed.Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Links Carter mentioned:https://clinicaltrials.gov/  https://www.ehlers-danlos.com/ https://rarediseases.org/ https://www.edsers.com/  

This week's episode features board-certified neurologist and headache specialist Aniket Natekar, MD, MSc. After completing his undergraduate degree at the Western University of London, Ontario, he pursued medical school at the John A. Burns School of Medicine in Hawaii. He later completed a residency in neurology and a fellowship in headache medicine.We all get headache, but does having a headache physically alter your brain? Does following a vegan or vegetarian diet make you more prone to headache? Does consuming alcohol recreationally intensify your headache? And the question that most of us want answered--can we prevent headache? Dr. Natekar addresses all of these questions and explains the science behind how numerous drugs and substances --caffeine, marijuana, alcohol, hallucinogens--lead to headache. We also discuss the difference between a headache and a migraine, and he clarifies common misconceptions about them both. We later talk about the importance of prioritizing health and sleep and how Dr. Natekar is able to do this in his busy life as a Neurologist. He also shares useful tips on how to put both your physical and mental health first! Get ready to learn all about headache! As a disclaimer, we mention the names of various drugs and substances, and this episode is not meant to influence anyone's choices--it is simply to explain how different substances can affect headache. Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts. Follow me on Instagram- @neurologicaldisorderpodcast Email me at [email protected] Resources Dr. Natekar mentioned:https://www.milesformigraine.org/

In this week's episode, I spoke with Tara O'Connor, dog mom, aunt, EMG technician, and warrior of Type 1 Narcolepsy (Narcolepsy with Cataplexy). Tara and I talk about the importance of self-advocacy--especially in the school setting--to receive proper accommodations. Unfortunately, Tara talks about how she was denied accommodations for Narcolepsy by her sleep technology teacher in college! How unbelievable is that! Tara also shares the numerous rude remarks she has received due to her condition, but we talk about how she uses these experiences as motivation to advocate for Narcolepsy and improve the experiences of others with sleep disorders--she was even on the local news for World Narcolepsy Day! Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Follow Tara on Instagram- @sleepygal_96Links Tara mentioned to help those with Narcolepsy or any sleep disorderhttps://project-sleep.com/https://www.wakeupnarcolepsy.org/https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497

This week's episode is with Robin Powers, a warrior of Alice in Wonderland Syndrome. In her free time, she also loves to write and recently published a book about her other rare condition: Ehlers-Danlos Syndrome (EDS). After experiencing multiple hardships in her childhood, Robin became a young advocate, giving a voice to others with rare conditions who cannot advocate for themselves. She truly turned her pain into motivation and continues to make a significant impact in the rare disease community.In this episode, we talk about the bizarre symptoms that accompany this incredibly rare neurological condition, the medical paper she co-authored and presented, how she remains positive despite societal judgement, and all the legislative advocacy she is doing on Capitol Hill. She even got to speak with the Senate majority leader!Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Follow Robin on Instagram- @robinalexixpowersambLinks to help those with Alice in Wonderland Syndrome:https://my.clevelandclinic.org/health/diseases/24491-alice-in-wonderland-syndrome-aiwshttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302569/#:~:text=Alice%20in%20wonderland%20syndrome%20(AIWS,common%20perceptions%20are%20at%20night.

This week's episode is with Ashley Clarke, a devoted advocate for Huntington's Disease in Northern Ireland! After watching her father experience this terrible condition, she started to educate others about Huntington's Disease and research to create a safe and inclusive community. In this episode, she shares the numerous ways in which she advocates for Huntington's globally and continues to make a positive and supportive environment for all. She is also very involved with the HDYO (Huntington's Disease Youth Organization) and recently gave an amazing speech at the opening of the HDYO congress in the Glasgow City Chambers in front of hundreds of people!In this episode, me and Ashley talk about drugs that are currently being developed and tested to cure Huntington's in the near future, the positive shift in awareness for Huntington's and other neurological disorders in the past 10 years, and the amazing work organizations like HDYO are doing for Huntington's to raise awareness and help diagnosed individuals and loved ones feel comfortable and supported!Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Follow Ashley on Instagram- @imnotdrunklifestyleblogLinks Ashley Mentionedhttps://en.hdbuzz.net/https://www.hdyo.org/https://hdsa.org/

This week's episode is with Matthew Horsnell, a dedicated advocate and father of 3 with Type 1 Narcolepsy or Narcolepsy with Cataplexy. He is also a researcher and has co-authored 3 papers and is the lead author of 1 other! During our conversation, we talk about the changes Matthew has made to accommodate Type 1 Narcolepsy, the importance of legislative advocacy, how social media is affecting the portrayal of narcolepsy, and how we all can make a difference to raise awareness for narcolepsy and help raise government funding for sleep research. We also touch on his research on narcolepsy and how interested individuals can get involved with narcolepsy research! Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Links Matthew Mentioned:  https://project-sleep.com/category/narcolepsy-nerd-alert/ https://www.wakeupnarcolepsy.org/https://www.hypersomniafoundation.org/