Zebra Talks: Living Your Best Bendy Life

Bendy Bodies Need a Unique Approach to Exercise

For this episode of Zebra Talks, I got to chat with Jeannie DiBon about the unique needs of the bendy body when it comes to exercise. Jeannie's contributions to the hypermobility community have been huge for me and many other bendy people the world over, so we are fortunate to have her with us on Zebra Talks! 
 
Some highlights of this episode include:
Jeannie's personal story about managing life with hEDS and regaining health after a low point
The central role that meditation and daily rest have played in Jeannie's self care
Insight into some of the key principles of Jeannie's Integral Movement Method
The importance of starting any movement practice by cultivating a sense of safety
How pain science informed Jeannie's to working with hypermobile clients
The challenge of not having a whole lot of evidence on "best practices" for hypermobile exercise
The importance of working towards heavier loading of tissues at the right time
Why the standard approach to exercise doesn't usually work for bendy people
Tips on avoiding the common "boom and bust" exercise cycle
Why Jeannie is hopeful about the future of research into hypermobility syndromes 

The Genetic Mystery of Hypermobile EDS

In this episode, Libby talks with Victoria Daylor from the Norris Lab at the Medical University of South Carolina, where she and a team of researchers have identified candidate genes that may explain many cases of hypermobile EDS. Since their research is currently in the peer review process, Victoria can’t spill the beans. But she sheds light on what we know about the various subtypes of EDS and why this one has been so tough to nail down. 
 
Some highlights of this episode include: 
The prevalence of the various subtypes of EDS
What we understand about the genetic basis for all EDS subtypes except hypermobile EDS 
Why you can’t just get a genetic blood test to diagnose hEDS
How the Norris lab is developing research models to help understand hEDS and HSD
The process that has led to discovering some potential genetic variants to explain hEDS 
What the scientific peer review process looks like and why it takes so long
What a day in lab life is like for Victoria 
The summer internship program at the Norris Lab
Some other research projects happening at the Norris Lab including one related to tethered cord syndrome
A questionnaire-based research project for anyone with an EDS or HSD diagnosis currently underway
A discussion about the differences and similarities between hEDS and HSD
The wide variety of symptom presentation among people with hEDS and HSD
How increased diagnosis rates can drive improvements in resource allocation for research 

Journey to Diagnosis with Lisa Sherman

In this episode, Libby talks with Lisa Sherman about the long journey to diagnosis that many people with HSD/hEDS undertake. They explore barriers to diagnosis, the pros and cons of diagnosis, why the medical system hasn’t done a great job identifying and treating this patient population, and how things might be changing.
Some key points discussed in this episode:
How Lisa began her journey of specializing in the treatment of people with hypermobility syndromes 
How Libby and Lisa started collaborating through their personal and professional overlaps
How common hypermobility syndromes are currently diagnosed
The nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severity
The history and limitations of the Beighton Scale as an assessment for generalized hypermobility
The imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolving
Why HSD/hEDS present a confusing clinical picture for many medical practitioners
Some systemic barriers within the medical system that prevent early diagnosis and treatment for this patient population
The unfortunate experience of medical gaslighting 
A silver lining of the covid crisis for people with complex chronic conditions 
What it’s like wandering in the wasteland of non-diagnosis
Why medical appointments are often so anxiety-provoking for bendy people
The validation and empowered action that can stem from diagnosis 
How having a clear diagnosis can help reduce anxiety and support nervous system regulation
The overwhelm that can stem from diagnosis
How a good working hypothesis can be just as good as a diagnosis for some people
How focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep. 

Bendy People Have Weird Fascia

Connective tissue or fascia plays a major role in the differences between bendy people and their non-bendy counterparts. But what even is fascia and why does it affect so many systems of the body? In this episode, Libby & Dr. Tina Wang discuss her fascinating research into the qualities of fascial tissue in people with hypermobility syndromes. She provides insights into why bendy people’s fascial tissue is different from “standard issue” fascia, how this impacts force transfer and structural support, and finally, why bendy people benefit so much from manual therapy techniques.  
 
The important structural and sensory roles fascia plays in the body
Why the term 'fascia' is difficult to define
Why bendy people display decreased force output and how that relates to fascia differences
Why bendy people’s fascial layers don’t glide as well as standard issue fascia
The “diagnostic odyssey” that so many bendy people experience
Systemic barriers to high quality medical care for people with HSD/hEDS
How movement practices to help our fascia make positive adaptations and function better
Why manual therapy techniques such as dry needling and myofascial release are often so effective for people with HSD/hEDS.
Reasons to be hopeful about all the patient experts and practitioners working to improve quality of care.

Is Yoga Bad for Bendy People?

Ever been told that hypermobile people shouldn’t practice yoga? In this episode Libby shares how different ways to practice yoga can be helpful or harmful for bendy people.
Episode highlights include:
Hypermobility basics – what does it actually mean to be bendy?
Unique needs for bendy people in Asana practice
Alternatives to passive stretching that work better for bendy people
What yoga practice injuries are telling us
An overview of Libby’s book; Yoga for Bendy People
-----
Purchase Libby's book: Yoga for Bendy PeopleSign up for free hypermobility-friendly movement practices.

Jill Miller On Nervous System Regulation for Bendy People

Hypermobility syndromes often include an extremely sensitive nervous system. This makes nervous system regulation an essential skillset for bendy people. Jill Miller is a pioneer in forging relevant links between the worlds of fitness, yoga, athletics, massage, and pain management. In this episode, Jill describes specific practices that can help people with hypermobility learn to regulate their nervous systems. 
 
Here are some highlights of the episode:
Jill’s personal experience with hypermobility 
Why learning to feel and identify body sensations is such a key skillset for bendy people.
How self-massage can help you explore sensation and learn about your inner emotional experience
Breathing mechanics for nervous system regulation
Exploration of the three zones of respiration 
Why breathing dysfunction can contribute to neck and shoulder pain, thoracic outlet, carpal tunnel and other complaints
Why resting can sometimes feel uncomfortable for bendy people
The 5 P’s of the parasympathetic nervous system and how to work with them.
The Hypermobility Hub Waitlist
Yoga Tune Up
 

What to Expect on Zebra Talks

Zebra talks is a podcast dedicated to helping you live your best bendy life. Join host Dr Libby Hinsley and guest experts for in-depth conversations about hypermobility syndromes.