『Major Pain』のカバーアート

Major Pain

Major Pain

著者： Jesse Mercury
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The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at majorpainpodcast@gmail.com.Major Pain Podcast 衛生・健康的な生活
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  • The Knowledge to Live Better: ALS, Advocacy, and Acceptance with Mindy Uhrlaub

    The Knowledge to Live Better: ALS, Advocacy, and Acceptance with Mindy Uhrlaub
    2026/08/05
    How do you live with the ever-looming uncertainty of being a gene carrier for a fatal disease? Amyotrophic lateral sclerosis—better known as ALS or Lou Gehrig’s disease—was long believed not to be genetic. Today, however, research shows that 10-15% of cases are linked to the mutation of various genes. The journey of potential future illness is one Mindy Uhrlaub has navigated since 2018, when she learned that she carries the C9OF72 genetic mutation. Since losing her grandfather and then her mother to ALS, Mindy has navigated the precariousness of questioning every symptom she develops, the hard knowledge that her children are also carriers, and the decisions that come with any life-changing diagnosis: how will this knowledge impact my approach to the present and the future? In Mindy’s case, it has led her to advocacy and authorship. She is a founder of the End the Legacy community for carriers of ALS and FTD (frontotemporal degeneration) and the author of the Amazon bestseller, “Last Nerve: A Memoir of Illness and the Endurance of Family.” Everyone with chronic illness or the genetic potential to develop it must select a unique path. Mindy has chosen to immerse herself in the promise the future holds. She takes every preventative step available to her, including avoiding chemical exposure and inflammatory foods and taking an ALS drug prophylactically. Through End the Legacy, she and other community members pursue policy change and education through webinars and summits. She participates in numerous studies and shares the struggle of facing down the inevitable emotional triggers. For Mindy, this approach is not about fearlessness but about devoting her time, and her heart, to the life-affirming aspects of her unpredictable situation. Learn more about End the Legacy, a non-profit org for genetic carriers of ALS and FTD: https://www.endthelegacy.org/ Buy “Last Nerve: A Memoir of Illness and the Endurance of Family”: https://www.mindyuhrlaub.com/last-nerve https://youtu.be/l9w6YdTifVc Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: majorpainpodcast@gmail.comSUBSCRIBE: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain
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    1 時間 1 分
  • ‘Green Plastic Whistle’ Makes Music with Multiple Sclerosis as Disease and Direction

    ‘Green Plastic Whistle’ Makes Music with Multiple Sclerosis as Disease and Direction
    2026/07/09
    Pointing to Edward’s first symptom of Relapse–Remitting MS is tricky. From anxiety in his 20s, to poor sleep and numb hands, to back pain and difficulty walking, the road to diagnosis has been rocky. When he finally received confirmation—in the form of a terrifying MRI showing countless lesions on his brain and spine—Edward was a new father in his early 30s. Coming to terms with a lifelong condition that presents differently for everyone was a process that has slowly shifted his outlook on both his past and his future. In this episode, we speak with Edward about what his journey through symptoms and diagnosis looked like, and reflect on how facing down a debilitating illness can change your outlook on life if you let it. A musician from a young age, today Edward is exploring live performance with his solo project, Green Plastic Whistle, and facing an aversion to fame that derailed some previous opportunities. As he puts it, being told you have an unpredictable disease, that has the potential to impact anything from bladder function to your ability to see, really puts fear into perspective. With cautious optimism and a balanced take on the pros and cons of the medical system, Edward and Jesse delve into how you envision your future when you don’t know what your health will hold. They explore the promising remyelination medications that have the MS community abuzz and what it’s like to start a family in the midst of disease progression. Edward’s experience with Multiple Sclerosis has given him a new perspective on how we prioritize our lives and what’s possible when you begin to face the future without fear. Learn more about Edward’s solo project, Green Plastic Whistle: https://www.instagram.com/greenplasticwhistle/ Listen to Green Plastic Whistle on Spotify: https://open.spotify.com/user/0b6gv1y0qrwlp4bp3ztmusnsa?si=d557f3eb1a0947c2 https://www.youtube.com/watch?v=hV_reArTc7g Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: majorpainpodcast@gmail.comSUBSCRIBE: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain
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    1 時間 2 分
  • Long COVID to Long-Term Wellness: Katie Brennan’s Journey to Build ThriveNinety

    Long COVID to Long-Term Wellness: Katie Brennan’s Journey to Build ThriveNinety
    2026/06/26
    Katie Brennan’s experience with Long COVID began in the earliest days of the pandemic, while she was working with the UK’s National Health Service on data-driven policy changes to improve care for patients. Though her experience with the acute phase was relatively minor, instead of steadily recovering, she developed a range of ongoing symptoms—difficulty breathing, sudden heart rate spikes, dilated pupils, fatigue, brain fog, and difficulty focusing. Although she was still functional enough to work, everything felt harder, and she no longer felt like herself. Eventually, she realized she had Long COVID. Navigating the push–crash cycle is common for many people with chronic illness: Katie would push herself too hard, frustrated by what her body could no longer handle, then crash and face hours or days of exhaustion and other symptoms as she recovered. A second COVID infection eroded what gains she had made. Recognizing the need to try something new, Katie attended a fitness class run by former biathlon Olympian and world champion Andrea Henkel Burke. Andrea’s combination of gentle but purposeful movement and various nervous system regulation techniques gave her participants small, tangible ways to control the body’s shift out of near-constant fight-or-flight into essential rest-and-repair. Together, Katie and Andrea founded ThriveNinety, which aids people with Long COVID and other infection-induced conditions by translating science into simple, practical tools that help restore how their bodies function and help them rebuild capacity and performance. Their program provides movement and other sensory inputs that are accessible for anyone, wherever they’re at in their illness recovery or maintenance. They also guide participants through nutritional changes known to have a positive effect, such as anti-inflammatory diets. Throughout her journey, Katie has discovered the phenomenal impact of listening to her body’s cues and making proactive adjustments that enable her to live a healthy, happy, active life with Long COVID. ThriveNinety shows others how they, too, can improve and even thrive in the face of long-term illness. Learn more about ThriveNinety’s programs and mission: https://www.thriveninety.com/ Buy the book, Recovery Kitchen: https://www.thriveninety.com/recovery-kitchen PlayWatch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform. PODCAST LINKSWEBSITE: https://majorpainpodcast.comEMAIL: majorpainpodcast@gmail.comSUBSCRIBE: https://majorpainpodcast.com/subscribeSPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyNAPPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1 SOCIAL MEDIAINSTAGRAM: https://www.instagram.com/majorpainpodcastTIKTOK: https://www.tiktok.com/@majorpainpodcastYOUTUBE: https://www.youtube.com/@MajorPainPodcastFACEBOOK: https://www.facebook.com/majorpainpodcast AFFILIATE LINKSRARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcastAMAZON SHOP: https://www.amazon.com/shop/majorpainpodcastNEURAHEALTH: https://www.neurahealth.co/majorpain
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    1 時間 3 分
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