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Beyond the Diagnosis: A Caregiver's Voice in Facing the Wind

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Manage episode 479945023 series 3599540
Content provided by Dr. Renarda Jones. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Dr. Renarda Jones or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

"I didn’t choose caregiving—it chose me."

In this deeply moving episode of Voices of Inclusive Research, host Dr. Renarda Jones sits down with Carla Preyer, founder of From the Salon Chair to Self-Care and advocate for dementia caregivers. Carla shares the powerful story of caring for her husband, Patrick, through his eight-year battle with Lewy body dementia—a journey filled with misdiagnoses, delays, and the emotional toll of navigating a misunderstood condition.

Carla also opens up about her role in the acclaimed documentary Facing the Wind, the isolation of being one of the few women of color in support spaces, and the importance of bringing education and research opportunities to caregivers.

From advocating for earlier diagnoses to using walking and wellness routines to stay strong, Carla’s story is a reminder that caregivers need just as much care as the people they support.

🎧 Listen now to hear how Carla is transforming her grief into advocacy—and why community, support, and visibility in research matter.

Must-Hear Insights and Key Moments

  • Misdiagnosis Delays are Too Common
    Carla's husband went undiagnosed for four years, despite clear symptoms. Her story highlights the urgent need for early detection tools like PET scans—and for doctors to truly listen to caregivers.
  • The Power of Support Groups
    Finding a safe space through caregiver support groups changed everything for Carla. It not only led her to helpful resources but eventually connected her to a life-changing documentary, Facing the Wind.
  • Caregiver Wellness is Essential
    From daily walks to self-care routines, Carla emphasizes that caregivers must prioritize their health, too—because without them, their loved ones are left vulnerable.
  • We Need More People of Color in the Room
    Whether in clinical trials or caregiver spaces, Carla consistently found herself as the only Black woman. She’s now on a mission to change that through advocacy and storytelling.
  • Research Must Reach the Right People
    Carla learned about studies only through support groups—not doctors. It’s a clear call for more proactive outreach and culturally responsive education about clinical trial opportunities.

Words of Wisdom: Standout Quotes from This Episode

  • "I didn’t choose this journey. It chose me." – Carla Preyer
  • "You should never try to do this journey alone." – Carla Preyer
  • "Support groups became my lifeline. They changed everything." – Carla Preyer
  • "Being the only person of color in the room—again and again—was heartbreaking." – Carla Preyer
  • "We have to stop dealing with dementia in silence." – Dr. Ren
  • "The earlier we educate, the more lives we change." – Dr. Ren


Connect with Carla Preyer:

Follow Dr. Ren:


We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

  continue reading

Chapters

1. Introduction (00:00:00)

2. Carla's Caregiving Journey Begins (00:01:53)

3. Early Signs and Diagnosis Challenges (00:03:28)

4. Support Groups and Research Awareness (00:11:21)

5. The Importance of Data Collection in Dementia Research (00:15:56)

6. Introducing the Film: Facing the Wind (00:16:14)

7. Challenges and Stigmas in the Black Community (00:18:29)

8. Empowering Caregivers and Final Thoughts (00:24:48)

18 episodes

Artwork
iconShare
 
Manage episode 479945023 series 3599540
Content provided by Dr. Renarda Jones. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Dr. Renarda Jones or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://podcastplayer.com/legal.

"I didn’t choose caregiving—it chose me."

In this deeply moving episode of Voices of Inclusive Research, host Dr. Renarda Jones sits down with Carla Preyer, founder of From the Salon Chair to Self-Care and advocate for dementia caregivers. Carla shares the powerful story of caring for her husband, Patrick, through his eight-year battle with Lewy body dementia—a journey filled with misdiagnoses, delays, and the emotional toll of navigating a misunderstood condition.

Carla also opens up about her role in the acclaimed documentary Facing the Wind, the isolation of being one of the few women of color in support spaces, and the importance of bringing education and research opportunities to caregivers.

From advocating for earlier diagnoses to using walking and wellness routines to stay strong, Carla’s story is a reminder that caregivers need just as much care as the people they support.

🎧 Listen now to hear how Carla is transforming her grief into advocacy—and why community, support, and visibility in research matter.

Must-Hear Insights and Key Moments

  • Misdiagnosis Delays are Too Common
    Carla's husband went undiagnosed for four years, despite clear symptoms. Her story highlights the urgent need for early detection tools like PET scans—and for doctors to truly listen to caregivers.
  • The Power of Support Groups
    Finding a safe space through caregiver support groups changed everything for Carla. It not only led her to helpful resources but eventually connected her to a life-changing documentary, Facing the Wind.
  • Caregiver Wellness is Essential
    From daily walks to self-care routines, Carla emphasizes that caregivers must prioritize their health, too—because without them, their loved ones are left vulnerable.
  • We Need More People of Color in the Room
    Whether in clinical trials or caregiver spaces, Carla consistently found herself as the only Black woman. She’s now on a mission to change that through advocacy and storytelling.
  • Research Must Reach the Right People
    Carla learned about studies only through support groups—not doctors. It’s a clear call for more proactive outreach and culturally responsive education about clinical trial opportunities.

Words of Wisdom: Standout Quotes from This Episode

  • "I didn’t choose this journey. It chose me." – Carla Preyer
  • "You should never try to do this journey alone." – Carla Preyer
  • "Support groups became my lifeline. They changed everything." – Carla Preyer
  • "Being the only person of color in the room—again and again—was heartbreaking." – Carla Preyer
  • "We have to stop dealing with dementia in silence." – Dr. Ren
  • "The earlier we educate, the more lives we change." – Dr. Ren


Connect with Carla Preyer:

Follow Dr. Ren:


We Want to Hear Your Voice!

Your insights on how inclusive research impacts your life and community are invaluable. Share your experiences and thoughts on how we can bridge the gap between research and real-world needs. Your stories drive our mission and inspire the future of inclusive research!

  continue reading

Chapters

1. Introduction (00:00:00)

2. Carla's Caregiving Journey Begins (00:01:53)

3. Early Signs and Diagnosis Challenges (00:03:28)

4. Support Groups and Research Awareness (00:11:21)

5. The Importance of Data Collection in Dementia Research (00:15:56)

6. Introducing the Film: Facing the Wind (00:16:14)

7. Challenges and Stigmas in the Black Community (00:18:29)

8. Empowering Caregivers and Final Thoughts (00:24:48)

18 episodes

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