What happens when people with Parkinson’s disease (PD) use storytelling to share their lived experiences? Can telling their own stories spark connection, confidence and even hope? In this episode of INside the OUTcomes, we explore how the simple, creative act of storytelling can have a profound impact.

Join us as we step inside Tellin’ Tales of Parkinson’s Disease, a unique storytelling project of the Parkinson’s Disease & Movement Disorders program at Shirley Ryan AbilityLab. Led by Tekki Lomnicki — founder and artistic director of Tellin’ Tales Theatre — the program helps participants turn personal experiences into meaningful stories that build community.

Listeners will hear from Tekki, along with Marty Maibuecher, a participant in the PD storytelling group, and Eric Espinoza, program and outreach coordinator, who leads the hospital's PD support groups.

This podcast is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (grants 90DPKT0007, 90RTGE0004, 90SIMS0015, 90DPHF0012).

On this episode of INside the OUTcomes, we talk with Viraj, 29, about living independently in Utrecht, the Netherlands, after a spinal cord injury. Viraj shares his journey from a life-changing accident in India to intensive rehabilitation and returning to work in Utrecht, highlighting the unique support system that allows him to live independently in fully accessible housing.

Find the podcast on ⁠Spotify⁠, ⁠Apple Podcasts⁠ or ⁠YouTube⁠ and browse the podcast archive for past episodes.

For more than 50 years, the National Spinal Cord Injury Model Systems Database has been the cornerstone of spinal cord injury (SCI) research in the United States. Since 1973, it has captured detailed information from thousands of people with traumatic SCI, helping researchers track long-term outcomes, improve rehabilitation care and guide new discoveries. In this episode, we explore how the database works, what makes it unique and how its insights continue to shape the future of SCI care and recovery.

Our guests are:

• Anne Deutsch, PhD, RN, research scientist, Shirley Ryan AbilityLab and co-principal investigator, Midwest Regional Spinal Cord Injury Care System
• Yuying Chen, MD, PhD, director, National Spinal Cord Injury Statistical Center, University of Alabama at Birmingham
• Jennifer Coker, PhD, MPH, co-director, National Spinal Cord Injury Statistical Center, University of Alabama at Birmingham
• Trevor Dyson-Hudson, MD, co-director of the Northern New Jersey Spinal Cord Injury System at the Kessler Foundation

This special episode is co-hosted with David McMillan, PhD, host of the American Spinal Injury Association podcast, SCI Science Perspectives.

Find the podcast on ⁠Spotify⁠, ⁠Apple Podcasts⁠ or ⁠YouTube⁠ and browse the podcast archive for past episodes.

This podcast is supported by the National Institute on Disability, Independent Living and Rehabilitation Research (grants 90DPKT0007, 90RTGE0004, 90SIMS0015, 90DPHF0012).

#spinalcordinjury #rehabilitationresearch

On this episode of INside the OUTcomes, we’re discussing the Model Systems Knowledge Translation Center (MSKTC) and its role in translating complex health information into accessible and useful resources for people living with spinal cord injury (SCI), traumatic brain injury (TBI) and burn injury.

Our guest is Cindy Cai, PhD, a researcher at the American Institutes for Research and the principal investigator and project director of the MSKTC. The MSKTC works with model systems researchers — including researchers in the Midwest Regional Spinal Cord Injury Care System at Shirley Ryan AbilityLab — to create easy-to-understand resources about SCI, TBI and burn injury for patients, families and caregivers.

Transcripts are available.

Listen on Spotify, Apple Podcasts or YouTube.

This podcast is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. (Grants 90DPKT0007, 90RTGE0004, 90SIMS0015, 90DPHF0012).

On this episode of INside the OUTcomes, we're exploring the challenges people with disabilities face when it comes to air travel, and opportunities to enhance accessibility.

Mike Whelan, one of our guests, is a member of several Shirley Ryan AbilityLab spinal cord injury research advisory councils and counts himself as a "million miler" -- logging more than a million miles in the air as he travels the world with his manual wheelchair. Our other guest, Eric Lipp, is a former Shirley Ryan AbilityLab patient who turned a frustrating experience into a mission to make travel, transportation and tourism more accessible for all. Eric is the founder and executive director of the Open Doors Organization, a nonprofit that trains transportation staff, leads accessibility advocacy, and collaborates with scientists at Shirley Ryan AbilityLab and Indiana University on research to improve air travel for people with disabilities.

This podcast is supported by grants from the National Institute on Disability, Independent Living, and Rehabilitation Research.

When Thea Flaum suddenly found herself caring for a family member with a spinal cord injury (SCI), she quickly discovered a lack of resources and support for the loved ones faced by this unexpected challenge. To address this gap, she created FacingDisability.com, a comprehensive platform offering valuable information on everything from medical care to a video series featuring the firsthand experiences and insights from people living with SCI.

On this episode of INside the OUTcomes, learn about Thea’s journey and how she created one of the most extensive, free resources for families of people with SCI. Also, hear about her new podcast, “I Was A Wheelchair Kid,” aimed at children and teens with SCI.

Transcripts for all episodes are available here.

INside the OUTcomes is supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (grants 90DPKT0007, 90RTGE0004, 90SIMS0015 and 90DPHF0012).

On this episode of INside the OUTcomes, we're discussing the value of rebalancing long-term services and supports (LTSS) — away from institutional care and toward community-based services.

We are joined by Courtney Priebe, MPH, a policy associate at ADvancing States, an organization that works to design, improve and support state systems that provide LTSS for older adults, people with disabilities and their caregivers. Courtney is one of the authors of a policy brief on rebalancing LTSS developed in collaboration with the Rehabilitation Research and Training Center on Home and Community-based Services at Shirley Ryan AbilityLab.

A transcript of this episode is available.

INside the OUTcomes is supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (grants 90DPKT0007, 90RTGE0004, 90SIMS0015 and 90DPHF0012).

#HCBS #LTSS #Rebalancing

On this episode of INside the OUTcomes, we’re diving into the powerful role of peer mentoring in supporting employment for people with disabilities.

In rehabilitation, peer mentors are individuals who provide guidance and perspective to others who may be recovering from an illness or injury or living with a chronic condition or disability. The critical, ongoing support of a peer mentor helps others navigate life after injury, offering practical advice rooted in lived experience and opening doors to new possibilities, including employment.

One of our guests is Linda Ehrlich-Jones, PhD, RN, associate director of the Center for Rehabilitation Outcomes Research and an author on a recent paper about what makes employment-focused peer mentoring programs successful. We are also joined by Rob Kozarek, a long-time peer mentor in the Shirley Ryan AbilityLab Henry B. Betts, MD, LIFE Center, who brings a wealth of real-world experience to the conversation.

Transcripts of all our episodes are available.