Navigating Life with Hypermobile Ehlers-Danlos Syndrome: Lauren Brown's Journey
In this episode of Zebra Talks, host Dr. Libby Hinsley discusses the challenges and experiences of living with hypermobility syndromes with guest Lauren Brown. Diagnosed with hypermobile Ehlers-Danlos Syndrome and POTS, Lauren shares her long and complicated journey through a diagnostic maze, frequent medical gaslighting, and the significant impact of finding knowledgeable and empathetic healthcare providers.
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Despite her struggles, Lauren started a YouTube channel, POTS Zebra, to raise awareness and support others facing similar conditions. This episode highlights the importance of community, persistence, and self-advocacy in managing chronic illnesses.
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Highlights of this episode include:Â
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00:00Â Introduction to Zebra Talks
00:35Â Meet Lauren Brown: A Journey with EDS and POTS
01:44Â Early Signs and Misdiagnoses
04:13Â High School Struggles and a Breakthrough
06:29Â College and Beyond: Continued Challenges
12:45Â A Lifesaving Diagnosis
13:46Â Ongoing Health Battles and Advocacy
19:11Â Finding the Right Doctor
19:45Â Sharing the Journey
22:02Â Medical Gaslighting and Bias
23:11Â The Importance of Diagnosis
27:19Â Building a Support Network
30:10Â Starting a YouTube Channel
33:11Â Resources and Support
36:02Â Final Thoughts and Community
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37:51
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37:51
Green and Red Flags: Strength Coaching for Bendy People with Dena Mellick
In this episode of Zebra Talks, host Dr. Libby Hinsley, physical therapist and author of 'Yoga for Bendy People,' talks with guest Dena Mellick, a barbell coach and founder of Strength Equity.Â
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Dena shares her journey from chronic illness and pain management to becoming a strength coach. They delve into the intricacies of training clients with hypermobility syndromes (HSD) and Ehlers-Danlos Syndrome (EDS), emphasizing the importance of resistance training and collaborative approaches for managing pain and improving quality of life.
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Dena explains the benefits of strength training, particularly in combating age-related muscle loss, and offers practical tips for finding the right coach, avoiding common red flags, and accommodating individual needs. They also discuss the significance of progressive overload, appropriate equipment, and the critical role of protein in muscle recovery and maintenance.
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Highlights of this episode include:Â
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00:00Â Introduction to Zebra Talks
00:35 Meet Dena Mellick: Strength Coach and Lifter
01:47 Dena's Journey to Lifting
03:30Â The Importance of Strength Training
06:19Â Powerlifting and Olympic Lifting Explained
09:04Â Training Hypermobile Clients
16:26Â Finding the Right Coach or Trainer
19:46Â Resources for Training with Pain
22:30Â Training with Hand Injuries
23:26Â Green Flags in a Strength Coach
23:50Â Red Flags to Avoid in a Coach
25:07Â Importance of Proper Equipment
28:32Â Personal Experiences with Coaching
30:08Â One-on-One vs Group Training
32:25Â Adapting Training to Life Stressors
35:17Â Encouraging Barbell Use at Home
38:12Â Getting Started with Resistance Training
40:43Â Final Thoughts and Contact Information
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41:51
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41:51
Heart Rate Variability: a Tool to Manage Spoons with Dr. Derik Anderson
In this episode of Zebra Talks, Dr. Libby Hinsley hosts Dr. Derik Anderson, a chiropractor and expert in soft tissue research and treatment, to discuss various facets of managing hypermobility syndromes.
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Dr. Anderson shares his journey into treating Ehlers Danlos Syndrome, insights on fascia differences in bendy bodies, and the role of heart rate variability (HRV) in energy management. They also delve into the importance of joint stabilization, nutrition, and innovative approaches like vibration therapy to improve the quality of life for those with hypermobility.
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The episode emphasizes the significance of a holistic and individualized approach to care, reflecting on the need for managing systemic inflammation and energy levels to enhance recovery and overall health.
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Highlights of this episode include:
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00:00Â Introduction to Zebra Talks
00:40 Meet Dr. Derik Anderson
01:34Â Dr. Anderson's Journey with EDS
05:40Â Understanding Fascia in Bendy Bodies
16:23Â Heart Rate Variability and Energy Management
28:08Â Tools and Techniques for Fascia and Muscle Health
34:40Â Nutritional Insights for Bendy Bodies
36:51Â Conclusion and Contact Information
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Enhancing POTS Management with Blood Flow Restriction Training Featuring Rob West
In this episode of Zebra Talks, host Dr. Libby Hinsley speaks with Rob West, a physical therapist and board certified orthopedic specialist. They discuss the use of blood flow restriction (BFR) training as a tool for improving strength and managing symptoms in patients with Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
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Rob shares his journey from learning about EDS through a classmate to becoming a specialist in treating this population. He provides insights into how BFR works, its benefits, and necessary precautions. Rob also highlights the positive impact BFR and trunk compression with weightlifting belts can have on cerebral perfusion and symptom management for POTS patients. Additionally, he shares inspiring case studies of patients who have significantly improved their quality of life through these training methods. Listeners will gain a deeper understanding of these innovative approaches to physical therapy and their practical applications.
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Highlights of this episode include:
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00:00Â Introduction to Zebra Talks
00:35Â Meet Rob West: Physical Therapist and Strength Specialist
02:58Â Understanding Blood Flow Restriction Training
05:37Â Applying BFR in Clinical Practice
08:29Â BFR for POTS Management
27:22Â Patient Success Stories with BFR
31:15Â Closing Thoughts and Contact Information
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POTS Diagnosis and Treatment with Dr. David Saperstein
In this episode of Zebra Talks, Libby welcomes Dr. David Saperstein, Director of the Center for Complex Neurology, EDS, and POTS in Phoenix, Arizona. Dr. Saperstein shares his journey into specializing in EDS and POTS, the complexities of diagnosing and treating POTS, and the importance of staying curious and open-minded in medical practice.
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They discuss the challenges of diagnosing POTS, the importance of thorough testing, and various treatment strategies, including the critical role of salt and water intake. Dr. Saperstein also emphasizes the need for flexibility in treatment plans to better meet individual patient needs. Tune in to gain valuable insights into managing these complex conditions and hear about Dr. Saperstein's innovative approaches.
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00:00Â Introduction to Zebra Talks
00:35Â Meet Dr. David Saperstein
01:45Â Dr. Saperstein's Journey into EDS and POTS
03:47Â Challenges in Diagnosing and Treating POTS
10:00Â Understanding POTS and Its Complexities
18:29Â Diagnostic Criteria and Testing for POTS
31:06Â Treatment Strategies for POTS
36:54Â Managing POTS with Lifestyle Changes
41:36Â Conclusion and Contact Information