Big thank you to everyone who has supported #GlassBodySteelSoul so far. We have raised (profit) a little over $2,000 through our first event! THANK YOU!
Our goal is $10k. Why?
We are raising $10k in order to begin testing yoga as physical therapy on Dysautonomia patients of Duke Syncope & Dysautonomia Clinic.
We are testing yoga as physical therapy due to the effectiveness of yoga as treatment in my personal case. When I entered under Dr. Frazier-Mills’ care, she worked wonders in my pharmaceutical treatment. This enabled me to dedicate more time and energy towards physical therapy. I considered enrolling myself in one of the popular physical therapy protocols for Dysautonomia, but after reading the evidence to support such methods, I found it logically flawed (for treating my type of Dysautonomia), so resigned to researching alternatives.
You see, I am also diagnosed with a connective tissue disorder called Ehlers Danlos Syndrome (EDS). The type I have is not life threatening, but disabling. In layman’s terms, the connective tissue of EDS patients is more “elastic” in comparison to the average person. This causes a host of problems, but the kicker for those who also have Dysautonomia is that blood vessels are in fact, connective tissue.
So when blood vessels are too elastic, blood, carrying vital oxygen, cannot be adequately pushed up towards the heart and brain. This is why EDS and Dysautonomia bodies can be described as having lost their ability to adjust to gravity. Without proper blood vessel tone and constriction, gravity wins, forcing blood to pool in the lower half of the body.
At best, this makes someone severely disabled and weak through a long list of symptoms (most of these symptoms cannot be seen visually). At worst, the patient passes out and suffers an anoxic seizure (convulsions from lack of oxygen- not epileptic in nature). What I just described has essentially been the daily battle of my life since I was a teenager.
Unfortunately, the most well known Dysautonomia physical therapy protocol is being used on these types of patients, but it does not adequately address lack of blood vessel tone when caused by genetics rather than physical deconditioning.
It was that realization which led me to pass on participating in the existing protocol and develop something specifically for patients with Dysautonomia compounded by EDS (although at the time, I only had my own needs in mind). And bonus, what I developed theoretically should be beneficial for POTS only patients as well.
What led me to yoga?
I looked back on my own case, asking which exercises I found most effective and why. When I was 16, I spent a few weeks at the Mayo Clinic. They explained to me the importance of blood vessel tone through the analogy of a fighter pilot.
G suits are used to prevent pilots from blacking or passing out as I do here on the ground. My body, simply standing upright, experiences what a fighter pilot would experience if he was not wearing a G suit.
When activated, a G suit presses firmly on the abdomen and legs to prevent blood from pooling in the lower half of the body. The goal of my physical therapy with Mayo was to strengthen my core and large leg muscles to the point that I could intentionally contract them to push blood upward, just as a g suit does through pressure.
They assigned me to a physical therapist back in Raleigh to build up to high weights low reps, targeting large leg muscles in conjunction with deep core contraction. The goal was to teach me to intentionally elevate my blood pressure through core contraction.
I highly respect and value the theory and logic behind this method, so everything I explored added to the theory and improved the method. I developed my physical therapy by asking a simple question. Is there a more effective method?
Insert a lot of brainstorming + trial and error + reevaluating facts. Rather than taking you down that path, I’ll simply explain why yoga is scientifically unique as physical therapy for Dysautonomia EDS patients.
(Power Vinyasa) Yoga is one of the few forms of exercise that focuses predominantly on isometric contractions. It emphasizes isometric contractions by holding each pose for a certain amount of respiration cycles. Not only that, but nearly every yoga pose emphasizes a contraction of the core.
What are isometric and isotonic contractions?
Isometric contractions exist in static positions rather than through a range of motion. Every other exercise and physical therapy I participated in emphasized isotonic contractions: the joint moves as the muscle contracts (think reps). Many common gym exercises are isotonic: push ups, squats, leg press, sit ups etc. Pilates utilizes isometric contractions, but the predominant focus is isotonic. I found pilates to be effective as physical therapy, but due to the focus on isotonic contractions, it was not as effective (for Dysautonomia EDS needs) as yoga.
While daily isotonic contractions such as unloading the dishwasher and walking are difficult for patients, daily isometric contractions pose the most disabling obstacles. In fact, the standard diagnostic test, a head up tilt table test, is actually a simple isometric contraction. Patients’ most common complaints involve showers and waiting in lines. We tolerate these activities so badly that most of us isotonically shift our weight, bending and straightening our knees while waiting in lines to avoid isometric holds. Most of us have shower chairs so that we can take breaks from the simple isometric contraction known as, “just standing there.”
I concluded that we should be training and conditioning ourselves for our greatest challenge: isometric contractions.
Obviously, my yoga physical therapy required incredibly small baby steps. I never dreamed my practice would grow into what it has become.
Through yoga as physical therapy, I have increased my upright time from 15-25 hours per week to approximately 45 hours per week. On average, I have one day per month (sometimes per two months!) when I pass out almost every time I stand. Before yoga, I experienced several days per week when I would pass out frequently.
I am not cured and honestly, compared to a normal person, my quality of life is still pretty low. That’s not a complaint (no pity required); it’s an honest fact with which I’ve made peace. Compared to the last 10 years, I feel like I'm free as a bird. There is no cure for Dysautonomia. However, there are things we can do to help. We cannot currently be cured, but we can gain ground.
This potentially groundbreaking physical therapy is worth supporting financially and worth patients fighting for personally. My quality of life has drastically improved, and I have my doctor and yoga to thank for that.
Please see us. Please give to this cause. Please help me ensure that the Dysautonomia treatment path will be better for the patients who come after me.
If this method is effective when tested on patients, it will become the physical therapy protocol at Duke and hopefully other clinics.
If proven effective, I am personally committed to building an online platform for patients to practice this physical therapy in their own homes, regardless of location or income.
You may not be able to cure us through your giving. I wish I could promise you that, but I can’t. What you can do is no less valuable. You can change our world. To a Dysautonomia patient, the potential of this physical therapy is the difference between being unable to work, and working part time as a disabled person
We are “Dysautonomia Warriors.” We are fighting an endless battle without reprieve; yet, no matter how many times we pass out or are weakened beyond what we think we can tolerate- we rise to fight again.
Please celebrate our resilience and strength and join our fight. Spread the word. Let’s reach this $10k as quickly as possible. No matter how small, every contribution brings us closer to our goal.
If you donate even $5, please post a photo to instagram tagging #GlassBodySteelSoul and tell us why you were moved to join our fight. Find us on Facebook- Glass Body Steel Soul and post there as well!
Thank you. From the bottom of my heart. Thank you.