The Neurological Disorder Podcast (Mridula Bharathi)
Explorez tous les épisodes de The Neurological Disorder Podcast
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| 30 Dec 2022 | Welcome to The Neurological Disorder Podcast! | 00:01:15 | |
This is some background as to what this podcast will be about | |||
| 13 Mar 2023 | 1. Here's a Warrior: Friedreich's Ataxia ft Hasitha Illa | 00:17:38 | |
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. | |||
| 26 Mar 2023 | 2. Here's a Warrior: Functional Neurological Disorder ft Jess Clough | 00:47:09 | |
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. Follow me on Instagram- @neurologicaldisorderpodcast | |||
| 10 Jun 2023 | 3. Here's a Warrior: Stiff-Person Syndrome ft Jennifer Trujillo | 01:35:40 | |
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- neurologicaldisorderpodcast@gmail.com Follow Jennifer on Instagram- @jentru_mom6_sps_warrior
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| 23 Jun 2023 | 4. Here's a Warrior: Type 1 Narcolepsy ft Matthew Horsnell | 00:34:37 | |
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- neurologicaldisorderpodcast@gmail.com Links Matthew Mentioned: | |||
| 21 Jul 2023 | 5. Here's An Ally: Huntington's Disease ft Ashley Clarke | 01:02:22 | |
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! Follow me on Instagram- @neurologicaldisorderpodcast Links Ashley Mentioned | |||
| 04 Aug 2023 | 6. Here's a Warrior: Alice in Wonderland Syndrome ft Robin Powers | 00:32:00 | |
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.
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| 18 Aug 2023 | 7. Here's a Warrior: Another Perspective on Type 1 Narcolepsy ft. Tara O'Connor | 00:28:27 | |
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
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| 03 Sep 2023 | 8. Here's an Ally: Headache ft Dr. Aniket Natekar | 01:02:35 | |
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.
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| 17 Sep 2023 | 9.Here's a Warrior: Neurological Perspective to Ehlers-Danlos Syndrome ft. Carter Hemion | 00:26:41 | |
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.
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| 15 Oct 2023 | 10. Here's an Ally: Parkinson's Disease ft Dr. George Ackerman | 00:35:18 | |
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. Follow me on Instagram- @neurologicaldisorderpodcast
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| 13 Nov 2023 | 11. Here's an Ally: Vistim Labs ft. James Hamet | 00:43:31 | |
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. Follow me on Instagram- @neurologicaldisorderpodcast
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| 07 Jan 2024 | 12. Here's a Warrior: Idiopathic Intracranial Hypertension, Neuro-Behçet's Syndrome, Parkinson's Disease ft. Levi Peterson | 00:48:09 | |
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. Follow me on Instagram- @neurologicaldisorderpodcast
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| 28 Jan 2024 | 13. Here's a Warrior: LGI1 Autoimmune Encephalitis ft. Lisa Lauter | 00:39:43 | |
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.
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 Helpful Links Lisa Mentioned
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| 20 May 2024 | 14. Here's an Ally: Syngap1 Foundation ft. Monica Dudley-Weldon | 01:00:54 | |
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!
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| 04 Jun 2024 | 15. Here's an Ally: The Spero Clinic ft. Dr. Katinka van der Merwe | 00:36:58 | |
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!
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| 03 Jul 2024 | 16. Here's a Warrior: Autism Spectrum Disorder & Type 1 Narcolepsy ft. Rachel Nesmith | 00:32:03 | |
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. Follow me on Instagram- @neurologicaldisorderpodcast
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| 16 Jul 2024 | 17. Here's an Ally: Patient Helpline + Patients Rising ft. Samantha Sauer | 00:36:24 | |
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.
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| 30 Jul 2024 | 18. Here's an Ally: Foundation to Fight H-ABC ft. Michele Levoir Sloan | 00:20:02 | |
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.
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| 11 Aug 2024 | 19. Here's a Warrior: Tuberous Sclerosis Complex ft. Nic, Elizabeth, & Beckett Brown | 00:25:54 | |
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.
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| 21 Oct 2024 | 20. Here's a Warrior: Traumatic Brain Injury ft. Erica Renee Walker | 00:22:37 | |
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. Follow me on Instagram-@neurologicaldisorderpodcast
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