The Desperate for a Diagnosis Podcast with Laura Nozicka

Who Takes Care of the Caregiver? How Love and Loss Inspired a Mission to Support Caregivers with Paul Kidwell

In this heartfelt episode, Laura Nozicka sits down with Paul Kidwell, a veteran caregiver, author and advocate, to share his profound journey caring for his wife, AiBai, who battled Parkinson's disease for over 18 years. Their story highlights the emotional, physical, and societal challenges of caregiving, especially from a male perspective and explores innovative projects aimed at supporting caregivers. In this episode: * Paul’s personal story caring for AiBai and her life beyond Parkinson's * The unique experience of caregiving for a loved one with a progressive illness * How caregivers often feel isolated and how to combat loneliness * The importance of inclusion of caregivers in medical conversations and decision-making * Details about Paul’s upcoming "Butterfly Season" project—bringing opera and caregiving together * The role of masculinity and societal perceptions in caregiving roles * Practical resources and strategies for new caregivers to navigate their journey * The transformational power of grief, love, and storytelling in healing * In Sickness Men in the Culture of Caregiving Podcast [https://open.spotify.com/show/35OfIb0FQlXw0q4ReVxHOU?si=2oOEh-ppSfyyo4W2Xldsgw&nd=1&dlsi=b38003e7c76846fa] * PBS Caregiving Documentary [https://www.pbs.org/show/caregiving] * Paul on LinkedIn [https://www.linkedin.com/in/paul-kidwell-84ab364/] Timestamps: 00:00 - Introducing Paul Kidwell and his caregiving journey 02:20 - Current weather in Boston and Chicago - going with the flow 05:02 - Paul’s deepest condolences on his wife’s passing 05:40 - Understanding Parkinson’s disease and her diagnosis 07:20 - The progression of AiBai’s illness and dementia aspects 09:45 - Celebrating AiBai’s life, her passions and her love for mechanical tinkering 10:42 - Heartwarming stories of her love for fixing things and community connections 15:14 - Paul’s touching final moments with AiBai and reflecting on her legacy 16:38 - Connecting their love for ballroom dancing and opera 18:42 - Paul’s own journey with opera, from childhood to recent projects 32:49 - The upcoming "Butterfly Season" tour and engaging local caregivers 35:22 - Using storytelling and grief processing through the arts 40:11 - Addressing the isolation of caregivers and the importance of community 45:24 - Gender roles in caregiving and the importance of sharing men's stories 50:30 - Strategies for new caregivers and the importance of resources 58:29 - How healthcare can better support caregivers at appointments and in daily life 63:15 - The societal gaps in caregiver support and workplace accommodations 65:45 - Loving memories and how AiBai would support Paul’s advocacy 68:36 - Closing thoughts and Rosalind Carter's wisdom on supporting caregivers Connect with Laura Nozicka Email: lauramarie@desperateforadiagnosis.com Website: www.desperateforadiagnosis.com ⁠⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/DesperateForADiagnosisPodcast] YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] TikTok @desperateforadiagnosis

A Scleroderma Warrior’s Journey: From Diagnosis to Advocacy with Falguni Desai

In this powerful episode of Desperate for a Diagnosis, Laura sits down with Falguni Desai, a scleroderma warrior, advocate, and survivor who nearly lost her life after a rapid progression of this rare autoimmune disease. Falguni shares her path from early misdiagnosis to a life-threatening renal crisis, the reality of living with a complex chronic condition, and how she rebuilt her life, voice, and purpose through advocacy. This conversation explores the importance of early diagnosis, self-advocacy, collaborative care, and the emotional resilience required to navigate rare disease. If you or someone you love is searching for answers, support, or hope — this episode is for you. Resources:1. Scleroderma Research Foundationhttps://srfcure.org/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__srfcure.org_&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=JIRsSAuFt8fbj1YuQRihP28DxCOrbqAfrGbsyNdvaiw&e=] 2. Steffens Scleroderma Foundationhttps://www.steffens-scleroderma.org/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__www.steffens-2Dscleroderma.org_&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=Hx8eDHzlTveVhUYTXwX5vh43k7dbCXiklUPm-XA0Xn8&e=] 3. National Scleroderma Foundationhttps://scleroderma.org/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__scleroderma.org_&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=jSTKeyKoMHjglQBG9jnyivPtb_QX_X8xVRRLpi1m0p8&e=] 4. Scleroderma Foundation of Californiahttps://myscleroderma.org/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__myscleroderma.org_&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=-Jm5nWSqSCjNADgLPaJUtwa2xV_tZZm0_PU9-_EG88g&e=]  5. Scleroderma Newshttps://sclerodermanews.com [https://urldefense.proofpoint.com/v2/url?u=https-3A__sclerodermanews.com&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=wFFCRzxNU26bN_g5MaIh37KzeAOiIhP1Vep5pxkphLI&e=] 6. Instagram - Dr Volkmann the_holistic_rheumatologist 7. Checklist [https://drive.google.com/file/d/1UKIzeGIxlBa1zWKZJcGOdi-hoRECV9st/view?usp=drive_link]created by Dr Volkmann when visiting a doctor. Contact Falguni: Linkedin https://www.linkedin.com/in/falgunidesai13/ [https://urldefense.proofpoint.com/v2/url?u=https-3A__www.linkedin.com_in_falgunidesai13_&d=DwMFaQ&c=euGZstcaTDllvimEN8b7jXrwqOf-v5A_CdpgnVfiiMM&r=JZbvzRmceijtK3S7td0q-_GUcXTNFyekAHdpqWvcNvE&m=Jdr3UKEcUJ4BqIySqEeyB7fPWqqfKrqq14QZfUm6l2gWZ4ig5Pwhzi5HyEEuI7Zd&s=Ki8woAbXu3r6jcUBIYZ56zh01fPc1goBNXV9dQXyrbE&e=] Connect with Laura Nozicka Email: lauramarie@desperateforadiagnosis.com Website: www.desperateforadiagnosis.com ⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/DesperateForADiagnosisPodcast] YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] TikTok @desperateforadiagnosis

LIVE RECORDING: Unheard & Unhealed: The Silent Epidemic of Dismissed Patients and Broken Trust in Healthcare

Recorded live at the Illinois Society for Healthcare Marketing and Public Relations (ISHMPR) annual conference on September 18, 2025, this presentation by Laura Nozicka, founder of Big Idea Tango and host of Desperate for a Diagnosis, takes a bold look at one of healthcare’s most unspoken challenges...what happens when patients feel dismissed, disbelieved, or left without a diagnosis. With over 30 years of experience in healthcare marketing, branding, and market research, Laura brings both professional insight and personal passion to the stage. Through patient stories and physician perspectives, she uncovers the deep emotional and systemic roots of medical gaslighting, communication breakdowns, and eroding patient trust. You’ll hear how real people — including patients who saw dozens of doctors before finding answers — navigated years of misdiagnoses and disbelief. You’ll also hear from physicians like Dr. Alan Rapoport, Dr. Joan Naidorf, and Dr. Colette Edwards, who share their own revealing perspectives from the other side of the bedside. Key Themes: * What medical gaslighting sounds like — and how it feels * Why women and marginalized groups face greater diagnostic delays * The ripple effects of physician burnout on patient experience * Systemic blind spots that cause trust breakdowns * How hospital marketers and communicators can help restore trust * The power of storytelling, empathy, and co-created communication Laura closes with a call to action for healthcare professionals: to elevate patient experience by moving beyond promotion and toward trust-building — one honest conversation at a time. About Laura Nozicka: Laura is a healthcare marketer, facilitator, and podcaster dedicated to elevating the human experience in healthcare. Through her company Big Idea Tango and her podcast Desperate for a Diagnosis, she helps systems, teams, and patients find their voices, bridge communication gaps, and rebuild trust through empathy and storytelling. Stay well—and keep pushing for answers. Connect with Laura Nozicka Email: lauramarie@desperateforadiagnosis.com Website: www.desperateforadiagnosis.com ⁠⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/DesperateForADiagnosisPodcast] YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] TikTok @desperateforadiagnosis

36 procedures, 26 doctors and a 30-year search to solve a medical mystery with NYC writer and producer, Nika C. Beamon

In this episode of the Desperate for a Diagnosis podcast, host Laura Nozicka welcomes Nika Beamon, an accomplished writer and producer in New York City. Nika shares her inspirational story of navigating nearly three decades of misdiagnosed symptoms and her relentless pursuit of a diagnosis. From experiencing spontaneous fevers and joint pain in her college years to being diagnosed with a rare autoimmune disease, IgG4-related disease, Nika discusses her journey, the impact on her life, and how she turned her struggles into a message of advocacy. The conversation also delves into her advocacy work, her achievements in journalism, and the importance of being your own health advocate. With a mix of humor and resilience, Nika's story is a testament to living life fully despite chronic illness. Connect with Nika C. Beamon https://nikabeamon.com/ Connect with Laura Nozicka Email: lauramarie@desperateforadiagnosis.com Website: www.desperateforadiagnosis.com ⁠⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/DesperateForADiagnosisPodcast] YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] TikTok @desperateforadiagnosis

What Happens After the Diagnosis? Inside the AYA Cancer Experience with Ambreen Maan, MSW, LSW

In this episode, I interview Ambreen Maan, a dedicated cancer advocate and licensed social worker. Ambreen shares her harrowing yet inspiring journey from being a young cancer patient, initially misdiagnosed with potential malaria, to becoming a champion for the adolescent and young adult (AYA) cancer community. She discusses the uniquechallenges faced by AYA cancer patients, the importance of self-advocacy, and the critical need for support tailored to the AYA demographic. Ambreen also delves into her experiences with healthcare disparities and how they influenced her shift from aspiring to be a doctor to focusing on social work and advocacy. Through her story, Ambreen highlights the significance of finding one's voice and support network during and after a cancer diagnosis. Connect with Ambreen American Tumor Board Association - info@atba.org Connect with Laura Nozicka Email: lauramarie@desperateforadiagnosis.com Website: www.desperateforadiagnosis.com ⁠⁠⁠⁠⁠Facebook⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://www.facebook.com/DesperateForADiagnosisPodcast] YouTube ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠@desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] Instagram ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ @desperateforadiagnosis ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://studio.youtube.com/channel/UCNhBRoFqbaP0q_GyGSa8wgA] TikTok @desperateforadiagnosis