The TyePod

The Tye Pod guest for this episode is fellow podcaster Kaitlyn Rohde who hosts Sick, I Swear. We dive into what it’s like to deal with chronic illness whether visible (Tye with Muscular Dystrophy) or invisible (Katlyn with Ehler’s Danlos).Kaitlyn also shares her experience with ableism from every level including from some family and relationship partners. I loved discussing both of our journeys es...

Today I am joined by Caden Nelms who is a digital creator living with SMA type 2.He discusses his journey and advocacy navigating life with a progressive neuromuscular diagnosis. We also talk about some of the difficulties in securing insurance for necessary treatments, including Spinraza injections and physical therapy. Caden’s advocacy efforts while attending college led to significant accessibi...

Hope you all are having a great start to the week!  This episode of The Tye Pod features a conversation between the PhD host and Daniela, a disabled model and content creator, about disability, intimacy, and dating.  Daniela shares her life with spinal muscular atrophy (SMA), her treatment with Spinraza, and challenges with insurance, along with her background in music. She discusses navigating da...

Today’s guest is Tony Jacobsen who is a coach, author and disability advocate! He discusses his journey with osteogenesis imperfecta (OI), a genetic disorder causing brittle bones. Diagnosed at 18 months, Tony has experienced over 75 bone breaks and undergone 12 surgeries. He emphasized the importance of nutrition, fitness, and mindset in managing OI. Tony's coaching program, Unbreakable Body, hel...

In today’s episode of the TyePod I had a great conversation with the hosts of the @OtheringPodcast Mike and Dory! They highlight stories of the marginalized with a focus on LGBTQ+ and disability. One of my favorite parts of being a podcast host is learning about other shows and the voices behind them! I appreciate both Mike and Dory for sharing their thoughts and insights on the disabled community...

Happy Thursday! This episode of the TyePod features Bryanna who is a disabled mom living in the New York area! I chat with her about her experience with raising a daughter, ableism, and use of prosthetics among other topics. Bryanna and her daughter were really enjoyable to talk with and I appreciate the opportunity to share this conversation with everyone! ✨ Next time on The TyePod I am joined b...

Happy Thursday! I’m excited to have Shaniece on today’s episode of the Tye-Pod! Shaniece is a nurse from Canada who has experience on the Covid front line in addition to maternity and IVF clinics. First off, I am always happy to find a fellow Swiftie to talk to about Taylor’s extensive music library. The conversation between the two of us was enjoyable and eye opening! Shaniece is the first nurse...

Your Tuesday episode of the Tye-Pod is live! Marissa @DisabledGhoul is my guest this time! Marissa is a digital creator and purveyor of all things spooky with her own sweet market with polymer clay artwork which you can explore @ marissa.maries.market! We chat about her experience with EDS, POTS and related diagnoses. In addition, we discuss Halloween costumes and the real life nightmares about st...

Time for the latest edition of The TyePod from your friendly neighborhood PhD with guest Clarissa Thomas who lives with Premenstrual Dysphoric Disorder and celiac disease.  Clarissa talks about the evolution of her symptoms and learning to adapt with the help of her family and extended support system. She discusses some of the specific aspects of planning ahead for hard days while maximizing her g...

This episode features Danielle Connolly (@_daniellevates) who is a disability and rare disease advocate. She shares what it feels like to manage her disabilities with adaptive transport devices. We also talk about Danielle’s use of humor and travel reviews that she has prepared over time! I really appreciate her feedback on cruises as well and I think we all could use one at this point! ✨ Next ti...

I’m so appreciative to be joined by Hollis Peirce on this episode of the TyePod! Hollis is a disability advocate and podcast host of 21st Century Disability. Hollis talked about higher education support for people with disabilities and his efforts to set up an endowed bursary at his Alma Mater Carlton University! He also shares a similar healing journey to my own following a lengthy stay in the IC...

Nicole Benish joins me as a guest on this TyePod episode to talk about her diagnoses including fibromyalgia during COVID and navigating amplified stress levels due to symptoms and relationship trauma/abandonment. Something that resonates with me from our conversation is her take on suffering: “One thing that makes suffering bearable is being able to use that suffering to help somebody else.” I rea...

The episode for this week’s TyePod features Julianna who was involved in an underwater diving accident that left her with a severe spinal cord injury during a trip to Hawaii. She talks about her efforts to remain independent including physical fitness activities and living in Arizona for part of the year. One thing I think is important to consider from Julianna’s story is that any of us can become...

One of my friends in the awesome community of Instagram joins me to share her journey with diagnosis, the origins of her online persona Cutie with a Cane and more! She shares so much insight on things like differences in state to state medical care and her approach to remaining positive without toxicity. Thank you so much to @Cutie_with_a_cane for coming on! ✨ Next time on The TyePod I am joined...

In today’s episode of the TyePod, I talk to John Scurto about living with SMA and advocating for people with neuromuscular diagnoses. We also talked about his passion for Florida sports and video games with adaptive controllers! John and I both have had the opportunity to work with @LaughingAtMyNightmareInc and share their passion for assisting the disability community! LAMN’s efforts to provide s...

It’s great to share my conversation with Kaitlyn Staten in the newest TyePod episode now available on YouTube and Spotify! She shares her experience going through a car accident that caused her spinal cord injury and pathway to universal design advocacy! Kaitlyn also talked about her starting to dance with the group that eventually became @Rollettes_LA! 👉 Follow Kaitlyn on Instagram @KaitlynState...

Angelea is my guest on this episode of the TyePod! She is a photographer living with VACTERL syndrome. She shares her journey including a move to Nashville while managing her daily living activities. I love the work she is currently doing by creating books telling stories of kids and adults with disabilities through pictures! 👉 Follow Angelea at @AngeleaPhoto to follow her journey and see samples...

Today’s episode of the TyePod features Jesse Bascle who creates reviews focused on providing accessibility information for restaurants and attractions in the New Orleans area! Jesse and I chat about some of the challenges of travel accessibility with public transportation and the dreaded Hannibal Lecter aisle chair many of us wheelchair users have experienced. 👉 Follow the Nola Rolla on Instagram...

In the weekly Thursday edition of the TyePod, Mandy Salas joins me to share her story as resilience advocate living with quadriplegia. We chat about her journey adapting to a new life, processing grief, and being a wife and mother. One thing that stayed with me following our discussion is the relationship between Mandy and her former host family in Argentina who lost a loved one and the same accid...

Rachel (@RachelsCCIPath) joins me in this episode to talk about living with CCI and her experiences with regaining function. I really enjoyed and learned a lot from our conversation! I found several “Ah ha” moments including Rachel’s thoughts on each of us climbing our own Everest when navigating chronic illness and rehabilitation! 👉 Follow Rachel on Instagram at @RachelsCCIPath! ✨ Next time on...

In this episode of the TyePod, digital creator Lo (@WouldYouKindly) shares her unique journey from teaching to content creation, discussing her experiences with mental health, her creative endeavors (including an impressive Lord Sauron costume!), and the importance of advocacy for autism awareness. She reflects on her injury and recovery process, the role of humor in coping with challenges, and th...

Tye here with a new episode of the TyePod! Kae (@LetterEleven) joins me to talk about her journey living with Limb-Girdle Muscular Dystrophy (LGMD) and her experiences as a digital creator and advocate.  The discussion explores the complexities of navigating life with a disability, the importance of representation, and the intersectionality of being a woman of color with a disability. Kae emphasiz...

A new episode of The TyePod is available featuring Jose Flores who is an author and model living with muscular dystrophy! My conversation with Jose touched on a number of moments of adapting and evolving through some of the mental and physical challenges he’s overcome. One thing that resonated with me was the number of people he has crossed paths, which is one of the most impactful parts of life w...

AKA “I still have the ability to love.” TyePod Thursday is back with special guest Avery (@EndometriosisAve) who talks about her experience with endometriosis and finding a good health team. I really appreciated Avery going into some of the “taboo” areas of disability conversation including intimacy and how different this can look depending on each person. She also talked about her moving to a new...

A new episode of The TyePod is now live with guest Annie Heathcote! Annie is a Disabled Advocate and Speaker living with Spinal Muscular Atrophy (SMA). I first reached out to Annie when I came across a reel of her sharing her feelings about physical touch through hugging. It resonated because I too feel that friendly physical contact can mean a great deal when you have a severe physical disability...