Movement: A Webinar Series

Updated: September 21, 2020

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The Ehlers-Danlos Society and our network of Allied Health Professionals want to continue connecting with our community around the world at this time, to offer support, guidance and education. Our new webinar series, focused on movement, shows the approaches of different health professionals around the world in continuing to keep active while in self-isolation.

Disclaimer

The authors and The Ehlers-Danlos Society request that you carefully follow all instructions given. It is your responsibility to ensure that you are capable of doing the exercises. If you have any doubt about your level of ability to undertake any of the exercises or advice offered you should not do those exercises, and if possible, seek health professional advice. Please participate at your own risk. The authors and The Ehlers-Danlos Society accept no liability for personal injury related to participation in this exercise or activity.

Webinars

All webinars from our movement series are recorded, and will be uploaded here and to our Youtube channel in the near future.

It is important that we keep moving on a daily basis even when we are in isolation or are social distancing.

Hypermobility Movement Therapist, Jeannie Di Bon, is offering 50% off her hypermobility movement program until December 25, 2020.

‘Strengthen Your Hypermobile Core’ is Jeannie’s successful home Pilates-based movement program for people with hypermobility, hypermobility spectrum disorder (HSD), EDS, and chronic pain.

It is also currently being used as part of a research project with Dr. Russek of Clarkson University in the United States and Jane Simmonds of UCL in the United Kingdom.

The program was written and designed by Jeannie, who also has hEDS, and all the exercises are modified for hypermobility. Click here to access today – use code Special50 at the checkout to receive 50% off the program. Over 8000 members of our community have joined the program between April and June 2020 which is incredible!

Jeannie Di Bonn’s Movement Mini-Series:

Join Ann Rodiger to explore how your body parts relate to each other and how you relate to the space around you. We will start with internal body awareness and move to include the environment. You will explore your thinking about yourself and your body and learn to improve your perceptions of who and where you are.

Physiotherapist Rowan Pearce from Western Kids Health in Perth Western Australia joins us to host a webinar that will introduce parents to the upcoming 12-week online exercise program. This webinar covers the following topics:

  •  How to help your child keep active at home.
  • What happens when kids with EDS & Hypermobility reduce activity levels.
  • What you need for the 12-week exercise program.
  • EDS & Hypermobility relevant tips for parents on how to make the 12-week exercise program as fun, engaging and beneficial as possible.
  •  Q&A time

Western Kids Health Online 12 Week Program

Join Senior Occupational Therapist Tiffany Edwards from Perth, Australia for a live 60-minute webinar designed for teenagers aged between 14–20 years with EDS, HSD, and hypermobility. The webinar is interactive, informative, and fun! It will include the benefits of yoga, adaptations for teens with EDS and hypermobility, a 30-minute guided yoga class, mindfulness, breathing techniques, calming strategies, and Q&A.

What you need: Yoga mat or carpet/rug, water bottle, pillow, enough space to move around and be able to lie down.

Tiffany is a qualified child’s yoga instructor with experience working with teens with chronic conditions and mental health.

These days come with challenges due to the corona virus spread: limited access to health care services, social isolation and generally limited options for physical activity. These challenges can test your ability to find “stability” in order to maintain your activity levels as well as your physical and mental health. In addition each individual with Ehlers-Danlos is different and has their own environment which has their own advantages and disadvantages.

Dr. Mark Scheper joins us, to help you find stability in your own living environment and will give you a set of basic principles that enable you to tailor any remote training program that you want to do while having fun with it. This webinar is intended for families (children and parents) as well as individuals with EDS that live solitary.

Dr. Mark Scheper is a physical therapist and clinical movement scientist working as an associate professor at the University of Applied Sciences in Rotterdam, the Netherlands, and Macquarie University Sydney. He specializes in the mechanisms that underlie disability in chronic pediatric diseases with a special interest for hereditary diseases of connective tissue and other rare diseases.

 

This webinar has been recorded and will be added to our Youtube channel in the near future.

Marcia C. Perretto, PT, DPT: “Actify Physiotherapy and Wellness”

Join Dr. Marcia Perretto, Founder and CEO of Actify Physiotherapy and Wellness, as she discusses the Actify Approach to pain management and reduction in patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). This webinar is for both patients and healthcare workers alike who would like to learn more about this holistic approach to reduce pain and improve joint stability.

Patients with hEDS and HSD are prone to developing long term pain and fatigue. Sound like you? A well-rounded physical therapy program designed especially for this population can help treat joint instability, pain, and fatigue by focusing on closed-kinetic chain (CKC) exercises along with other targeted trainings. The Actify System is an evidence-based treatment that incorporates CKC exercises, multi-range isometric contractions, and proprioceptive training with sling training and neuromuscular re-education. The method uses a specific and gradual exercise progression in a pain-free approach, always keeping in mind each patient’s tolerance to activities. This holistic treatment has proven to help our patients in reducing their daily pain and improving their joint stability.

This webinar has been recorded and will be available on our YouTube channel in the near future.

Additional Resources

We all have our different levels of ability. Don’t over-work your physical activity, but also don’t stop activity that you can do from home. Here is a list of activities that may be of interest. Check out the Kitchen Fun, and other activities listed in “Activities To Do From Home” Happy Moving!

  • Free at-home kids yoga lesson plans
  • At home OT, PT, and ST resources designed to build skills in children through movement and play
  • Kid-friendly workouts — choose from Strength for Kids, Agility for Kids, Flexibility and Balance for Kids, Warm-Up for Kids, Cooldown for Kids, Stand Up and Move for Kids, OR create your own custom kid workout
  • Educational brain breaks to help students review essential literacy and math skills, while getting in some exercise. Find over 900 videos to help your child keep learning at home and burn off some extra energy. Best for ages 4-8
  • Movement and mindfulness videos created by child development experts
  • Guided movement, relaxation exercises, and deep breathing exercises
  • Zumba or Dance-along videos on YouTube 
  • Hypermobility Movement Therapist, Jeannie Di Bon, has decided to gift her online hypermobility movement program for the next 3 months.  The program will now be free of charge to help keep our community moving, pain-free.

Outdoors

  • Use sidewalk chalk to draw wonderful pictures outside
  • Go for a walk – if you can and are allowed
  • Have the kids / family do races of various kinds in the backyard (hopping on one foot, crabwalk, walking backwards, etc.)
  • Inventory the plants & wildlife (from bugs on up) in your yard / garden / park
  • Learn the parts of plants/flowers & how they function (bonus if they learn the Latin names)
  • Have the family help with yardwork, tidying the garden ready for the next season
  • Guide to gardening for kids

NYC-based care access project, Hyp-ACCESS, is offering pay-what-you-can/free-if-you-need online resources to hypermobile folks in response to COVID-19.

Starting in April, and for as long as the need lasts, they will hold four group classes each week via Zoom – two accessible movement/dance classes, and two body education classes in their made-for-hypermobility somatic practice, Awareness-Based Neuromuscular Re-patterning (ABNR). Sliding scale private sessions in symptom management strategies and emergency care plans are also available. You can read more about their offerings, research, and practices at hyp-access.com/online.

Contact hypermobileaccess@gmail.com with any questions!

This 75 minute Pilates-based movement class is geared towards individuals with Ehlers-Danlos Syndrome or any Hypermobility Spectrum Disorder. With many years of teaching experience, Dianne and Ashley have teamed up to address the ever growing need for more specific movement based strategies for this community. The class will begin with a brief explanation of their three prong method and then progress into a hypermobility focused Pilates mat class with an emphasis on helpful strategies for dynamic strength rather than creating limits and restrictions around hypermobile joints.
For more information on Ashley and Dianne, read their bios here.

NOTE: Please ensure you are cleared for physical exercise by your physician prior to attending class.

Join physiotherapist Rowan Pearce of Western Kids Health in his movement series, designed to keep your children moving safely at home. For an introductory webinar from Rowan about Western Kids Health, visit the link listed above.