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.
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.
Highlights of this episode include:
00:00 Introduction to Zebra Talks
00:35 Meet Lauren Brown: A Journey with EDS and POTS
01:44 Early Signs and Misdiagnoses
04:13 High School Struggles and a Breakthrough
06:29 College and Beyond: Continued Challenges
12:45 A Lifesaving Diagnosis
13:46 Ongoing Health Battles and Advocacy
19:11 Finding the Right Doctor
19:45 Sharing the Journey
22:02 Medical Gaslighting and Bias
23:11 The Importance of Diagnosis
27:19 Building a Support Network
30:10 Starting a YouTube Channel
33:11 Resources and Support
36:02 Final Thoughts and Community
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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.
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.
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.
Highlights of this episode include:
00:00 Introduction to Zebra Talks
00:35 Meet Dena Mellick: Strength Coach and Lifter
01:47 Dena's Journey to Lifting
03:30 The Importance of Strength Training
06:19 Powerlifting and Olympic Lifting Explained
09:04 Training Hypermobile Clients
16:26 Finding the Right Coach or Trainer
19:46 Resources for Training with Pain
22:30 Training with Hand Injuries
23:26 Green Flags in a Strength Coach
23:50 Red Flags to Avoid in a Coach
25:07 Importance of Proper Equipment
28:32 Personal Experiences with Coaching
30:08 One-on-One vs Group Training
32:25 Adapting Training to Life Stressors
35:17 Encouraging Barbell Use at Home
38:12 Getting Started with Resistance Training
40:43 Final Thoughts and Contact Information
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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.
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.
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.
Highlights of this episode include:
00:00 Introduction to Zebra Talks
00:40 Meet Dr. Derik Anderson
01:34 Dr. Anderson's Journey with EDS
05:40 Understanding Fascia in Bendy Bodies
16:23 Heart Rate Variability and Energy Management
28:08 Tools and Techniques for Fascia and Muscle Health
34:40 Nutritional Insights for Bendy Bodies
36:51 Conclusion and Contact Information
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40:21
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).
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.
Highlights of this episode include:
00:00 Introduction to Zebra Talks
00:35 Meet Rob West: Physical Therapist and Strength Specialist
02:58 Understanding Blood Flow Restriction Training
05:37 Applying BFR in Clinical Practice
08:29 BFR for POTS Management
27:22 Patient Success Stories with BFR
31:15 Closing Thoughts and Contact Information
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35:16
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.
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.
00:00 Introduction to Zebra Talks
00:35 Meet Dr. David Saperstein
01:45 Dr. Saperstein's Journey into EDS and POTS
03:47 Challenges in Diagnosing and Treating POTS
10:00 Understanding POTS and Its Complexities
18:29 Diagnostic Criteria and Testing for POTS
31:06 Treatment Strategies for POTS
36:54 Managing POTS with Lifestyle Changes
41:36 Conclusion and Contact Information
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