Episodes
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This week's episode is with Erica Renee Walker, a TBI survivor and coach who is dedicated to raising awareness and helping others navigate life with brain injuries.
In this episode, Erica opens up about her experience with traumatic brain injury (TBI), discussing how she sustained her injury, the hidden symptoms she manages, and how she stays positive and hopeful throughout her journey. We also talk about the advocacy work she does through her Instagram and YouTube channels, where she shares shares vlogs, documentaries, and messages of encouragement for other TBI survivors. Additionally, we touch on the importance of finding community and support for those recovering from brain injuries, and Erica concludes with some inspiring advice for anyone going through similar challenges.
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
https://www.ninds.nih.gov/health-information/disorders/traumatic-brain-injury-tbihttps://www.cdc.gov/traumatic-brain-injury/index.html#:~:text=A%20traumatic%20brain%20injury%2C%20or,disability%20in%20the%20United%20States.
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This week's episode is with Nic Brown, father of Beckett. After their 2-year-old son Beckett was diagnosed with Tuberous Sclerosis Complex, a rare genetic disorder, Nic and his wife Elizabeth became dedicated advocates for the cause.
In this episode, Nic shares their long journey to obtain a diagnosis for Beckett and their challenges in navigating the healthcare system for his condition. He then discusses the various symptoms associated with TSC and the complexities of managing them. We also explore how Nic and his wife, Elizabeth, ensure Beckett enjoys a fulfilling childhood while balancing the need for medical treatment—a challenging yet crucial balance for many families to maintain. Additionally, we delve into their advocacy efforts for TSC, their collaborations with organizations like the TSC Alliance, and the promising research currently underway to improve treatment for TSC symptoms. Nic concludes with some powerful and inspiring advice for parents of children who are just beginning to navigate a complex diagnosis.
https://www.tscalliance.org/Instagram: @becketts.beehive
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This week's episode is with Michele Levoir Sloan, co-founder of the Foundation To Fight H-ABC. Michele and her husband started the foundation in 2015 after their daughter was diagnosed with H-ABC. Since then, they have supported families affected by this condition worldwide, collaborated with numerous nonprofits, and worked alongside biotechnology companies to support research for a cure.
https://www.h-abc.org/
In this episode, Michele and I discuss her inspiration for creating the Foundation to Fight H-ABC, its mission, and its initiatives/fundraisers. We then dive into current research focused on finding a cure for H-ABC and the ASO treatment in clinical trials. We later focus on the necessity of raising awareness for rare conditions, especially H-ABC, as there are only about 200 diagnosed cases, making this condition mainly unknown to the public. She then shares her goals for the future and an inspiring message to families affected by H-ABC.
Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
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This week's episode is with Samantha Sauer, a patient navigator and the Director of the Patient Helpline at Patients Rising. Patients Rising is an organization that aims to empower patients in America to advocate for reforms, placing them, alongside their doctors, in control of their healthcare choices. The Patient Helpline, a nonprofit program associated with Patients Rising, provides direct and personalized access to needed resources. Samantha and her team help patients navigate challenges in their healthcare journey, including transportation, insurance, and medicinal access issues.
https://patienthelpline.org/https://www.patientsrising.org/
Today, Samantha shares the initial purpose of the Patient Helpline and its remarkable growth and evolution through the challenges of COVID-19. In fact, Samantha and her team have helped around 10,000 patients in just 4 years, which is truly incredible. We discuss how her team is structured and what issues they commonly address. She later shares where the Helpline is heading in terms of growth and impact, and we touch on Patients Rising's current policy initiatives and programs.
Samantha truly shows an unwavering enthusiasm and deep passion for helping others get the resources they need and encouraging them to advocate for themselves in healthcare settings. We share a few laughs as we talk about the necessity of 'googling workshops' while also exploring the nuances of Medicare's failure to cover medical transportation.
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
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This week's episode is with Rachel Nesmith, a singer-songwriter, mother, and advocate. Rachel has Autism Spectrum Disorder and Type 1 Narcolepsy, so today, we begin by discussing the setbacks she has faced and overcome living with ASD and then transition to her Narcolepsy.
Rachel and I start by talking about the misconceptions behind ASD, how she experiences and manages sensory overload, and how she advocates on her behalf in social settings. We also discuss her diagnosis journey with Type 1 Narcolepsy, how she adjusted her life and education after receiving her diagnosis, and how she works relentlessly to advocate for others with Narcolepsy. Rachel also talks about how her diagnosis of Type 1 Narcolepsy led to her redefining her goals and altering her ambitions to continue leaving a significant impact on society. Additionally, she shares some valuable advice at the end of the episode to anyone who has just received a new diagnosis.
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
https://www.wakeupnarcolepsy.org/https://narcolepsynetwork.org/https://www.hypersomniafoundation.org/
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This week's episode is with Dr. Katinka van der Merwe, a Doctor of Chiropractic who focuses on nervous system rehabilitation to help those suffering from chronic pain. She grew up just outside of Johannesburg, South Africa, and immigrated to the United States to receive her Doctor of Chiropractic degree. Since then, she has received numerous awards for her work, including the prestigious Global Chiropractor of the Year award in Atlanta, Georgia, and the Award of Innovation for her ongoing work with RSD/CRPS patients in Los Angeles. In addition, she is a successful author and has recently published a new book, A Paradigm Shift in Treating EDS/POTS, which focuses on the connection between EDS/POTS and other diseases to improve treatment.
Dr. Van der Merwe is also the CEO and founder of The Spero Clinic in Fayetteville, Arkansas, which treats patients from around the world. To date, she has treated patients from 47 US states and 34 countries! She has great success in treating non-retractable pain syndromes and chronic pain.
In this episode, Dr. Van der Merwe and I start by exploring the Spero Clinic's Nervous System Rehabilitation program and the variety of unique therapies her clinic offers. She then shares information about Complex Regional Pain Syndrome (CRPS), what makes the condition difficult to diagnose, and the approach she takes to treat the pain. We then dive into her goals for the clinic in the upcoming years, her new book, and how she builds close relationships with all her patients. We also briefly touch on numerous interesting topics, such as medical kidnapping, Long COVID, and hypnotherapy!
https://www.thesperoclinic.com/More about CRPS
Additionally, she shares the mental health and psychological support her clinic offers, as mental health is often intertwined with chronic pain. So, as a warning, there is a brief mention of suicide near the end of this episode.
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]
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Today's episode features Monica Dudley-Weldon! Not only is she the founder and CEO of the Syngap1 foundation, but she also has a background in biology and teaching and attended Law School. Her son, Beckett, was the 6th person in the world and 3rd in the United States to be diagnosed with Syngap1-Related Disorder, an intellectual disorder often accompanied by autism, epilepsy, and other behavioral abnormalities.
In this episode, Monica delves into the relatively unknown symptoms of this condition and treatments, such as ASOs (Antisense Oligonucleotide Therapy), that are currently being researched. When Monica embarked on her journey to learn more about Syngap1-Related Disorder and advocate for others with this condition, there were only 3 Google pages present, which were solely focused on animal models. Since then, her tireless advocacy has significantly contributed to the plentiful information available on this condition.
In this episode, we dive into Beckett's story and how her son's diagnosis pushed Monica to find more answers to this rare condition. She elaborates on current research on Syngap1, and we also talk about the importance of increased access to genomic testing and newborn screening. Of course, change happens with the legislature, so we talk about her work with Senator Braun on the Promising Pathway Act and the necessity of patients' and caregivers' voices when designing clinical trials. Monica has ambitious goals for extending Syngap1 research to a broader spectrum, so she shares her future plans to expand the world of neurology!
Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
https://syngap1foundation.org/https://everylifefoundation.org/
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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- @neurologicaldisorderpodcast
Email me at- [email protected]Helpful Links Lisa Mentioned
Her blog: https://www.lisalauter.com/bloghttps://aealliance.org/patient-support/treatment/https://www.encephalitis.info/ -
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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
https://rarediseases.org/https://my.clevelandclinic.org/health/diseases/21968-idiopathic-intracranial-hypertensionhttps://www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326
Email me - [email protected]
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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
https://vistimlabs.com/
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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
https://www.togetherforsharon.com/https://www.michaeljfox.org/
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Email Dr. Ackerman at- [email protected]
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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.
https://clinicaltrials.gov/ https://www.ehlers-danlos.com/ https://rarediseases.org/ https://www.edsers.com/
Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
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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.
https://www.milesformigraine.org/
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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
https://project-sleep.com/https://www.wakeupnarcolepsy.org/https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497
Email me at- [email protected]
Follow Tara on Instagram- @sleepygal_96
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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.
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.
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- @robinalexixpowersamb
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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 Mentioned
https://en.hdbuzz.net/https://www.hdyo.org/https://hdsa.org/ -
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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/ -
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This week's episode is with Jennifer Trujillo, an inspiring woman and warrior of Stiff-Person Syndrome. She loves to sing, spend time with her family, and was also featured in Céline Dion's music video! In this interview, we talk about Jennifer's long and terrible experiences with the US Medical System, the necessity of research and advocacy for Stiff-Person Syndrome, the benefits of Alternative medicine, and ways we, as a community, can help people with Stiff-Person Syndrome feel more comfortable and safe. Her story is truly heartbreaking and inspiring, as she details how neighbors and even caregivers have made her feel inadequate. However, as a trigger warning, today's episode covers some heavy topics such as suicide and mentions of specific addictive drugs.
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 Jennifer on Instagram- @jentru_mom6_sps_warrior
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This week's interview is with Jess Clough, from Australia! She has Functional Neurological Disorder, which affects how the nervous system sends and receives messages. In this interview, we talk about the stigma that Freudian psychology has brought to FND, the importance of modern perspectives in medicine, and a term I have never heard before--medical gaslighting.
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 Jess on Instagram- @functionallyjess
Website Jess mentioned for FND- https://neurosymptoms.org/en/ -
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This week's interview is with an amazing woman named Hasitha Illa who is a fighter of Friedreich's Ataxia. She is also an avid blogger and passionate writer who has just released a children's book on disabilities! In this episode, we talk about Hasitha's experience with FA, the importance of inclusivity, the value of advocating for neurological conditions, and much more.
Be sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Episodes will be posted biweekly.
Follow me on Instagram- @neurologicaldisorderpodcast
Email me at- [email protected]
Follow Hasitha Illa on Instagram- @lifewithhasi
Website Hasitha mentioned for FA- https://www.curefa.org/ - Show more
