My Experience with the Body Braid System
Lessons from the Ehlers-Danlos Syndrome Community
This is part of a series of posts about lowering the boundaries between communities who have been given different diagnosis labels by the medical system, and instead looking more at what we can learn from each other by focussing on the commonalities, and synthesizing our knowledge and research across these artificial boundaries.
For example, we demonstrated what could be gained by bringing together the Fibromyalgia and Parkinson’s diagnosed communities:
We also considered what can be learned from the Parkinson’s diagnosed community by the Ehlers-Danlos Syndrome diagnosed community:
In this article, we complete the circle and give an example of an intervention that the EDS diagnosed community has discovered and advanced, that could also have significant benefits for folks given a PD diagnosis.
In particular, here we look at the Body Braid System, which works on the fascia and improves proprioception - the sense of where our body parts are, and how they are moving. This intervention was pointed out to me by a reader who has been given an EDS diagnosis.
The Body Braid, is a stretchy [but latex free!] wearable intervention, that a medical doctor invented based on his understanding of fascia health. See
for background information on fascia and connective tissue, and how addressing it has already helped me enormously.
Apparently, the Body Braid, works by helping folks activate their proprioception, and be in better touch with their bodies, in a gentle way, helping with posture, and movement, and so forth, by supporting the functions of, and working with, the fascia. Recall from my article on EDS, that proprioception going awry, becoming atrophied or going offline, is a very major part of EDS type conditions.
Indeed, although the system was not designed for EDS per se, the inventor, Blair Voyvodic, says
“Body Braid as a business took off when some people with Ehlers Danlos found it and since then it has spread entirely by word of mouth recommendations. We have never pursued any marketing or advertising other than presenting at EDS conferences. “
So this is a very good example where a community with a given chronic illness diagnosis, has done its own research, found its own solutions, and shared experiences with others in their community.
Due to my own experience of the benefits of working on my fascia, I could immediately intuit in my body that this could also have significant benefits for folks with a Parkinson's diagnosis too, not least due to the considerable overlaps in symptom presentation between EDS and PD. Especially because folks with a PD label also have severe issues with proprioception, and are largely exiled from feeling their body.
So I emailed the inventor of the system, to see if they had already tried it for folks with PD. He replied:
“One of the founding partners in Body Braid has been doing dance and movement classes specifically for people with PD and found the Body Braid helpful, as have some customers.”
He also gave me a significant discount to get one for myself and trial it for my form of PD.
My Body Braid arrived early October. I am taking it really slowly, and titrating and building up very carefully. Yet, so far, it does feel comforting and supportive to wear. I am getting very good relief from stiffness/rigidity/pain during the "off" periods where the Parkinson's meds stop working. I started by putting it on as soon as a dose of the drugs wears off, and getting into the standard sitting position.
While it does not switch my movement back on immediately or anything like it [but it may get more interesting with the full body system, including the leg extensions] I am able to sit out a lot of the "off" period without the usual chronic neck and shoulder pain/stiffness/rigidity/general discomfort/difficulty breathing. I am also finding the next dose of meds is more likely to work and, if so, more quickly.
I have tried sitting like this up to 30 mins so far [titrating carefully], and even after I take it off, the relief is then lasting.
When
visited me this autumn, she helped me work out how to put the Body Braid on in the “everyday” or “any activity” position, in which you can walk around as well as sit. I found this helped take the “edge off” of the sense that we folks with PD feel like gravity has been turned up, or that we are being crushed to the ground, and hence that it does make moving around easier and less fatiguing. I have yet to try it with the full leg extension pieces, but my intuition is that this will be further helpful.I will keep you informed of progress.
A reader also highlighted a versatile product called TTouch Body Wraps, which look similar in function and application, and which have apparently been used successfully on companion animals and horses, and now on humans.
“Body wraps, in practically any combination you can dream of, help to; enhance body awareness, increase proprioception and passively release tension patterns in the body, reminding the nervous system of postural habits that have become normal – in our animals and in humans.”
To learn more about fascia, connective tissue, and proprioception, and their vital roles in health and wellbeing, take our online course Emotional Trauma, Fascia And Breathing.
Fascinating - all the many helpful approaches that exist - and people diagnosed with PD are not referred to them!!! It is a kind of murder. In fact, so many do die, and before dying, lose so much of the possibility of their lives.
Thank you Gary. The issues are in our tissues, as they say! I hadn't come across the body braid and the way it is described does resonate with me. I look forward to hearing more about your experience. I know so many people with fibromyalgia. Perhaps body braid could offer an opportunity for a group to trial it.