Lately for physical therapy, I pack up my toys and meet my physical therapist at the beach.

We throw frisbees and a football. We work on my balance, hand-eye coordination. The sand is a special challenge. The crashing waves, the smell of the ocean, so soothing. All good for my brain and nervous system.

My left hand has become much more agile. Yay!

Intermittently, we take a break from the playing and run on the sand. Not something I ever could do in my life, or ever thought I could do. 

In junior high school, I got into adaptive PE without a diagnosis, because my knees (and everything) hurt so much, I couldn’t run. Growing up, I did the LA County Junior Lifeguards program for many years, but had to skip running on the sand because my knees hurt so much. Then I gave up on the program entirely. Every year as I got older, my EDS symptoms got worse, especially ages 13 -17. I had been a small, scrawny, fatigue-prone child, and as I grew I lacked the muscle power to move my heavier, taller body. 

I could never get back the athletic prowress I had at six years old, until now.

Many years ago, before I was getting any ascorbic acid injected, when I was fully disabled by Ehlers-Danlos Syndrome, I would come to this beach in the summer to feel the sun and listen to the ocean. Then, I could not swim in the ocean because I was so fragile that the force of the swells and waves against my body ran me over like a truck. My spine would be so destabilized I could not lie down to sleep, no matter how many drugs I took.

Back then, even the walk across the uneven sand was too much for my loose body. I would go home and start with the Vicodin. I would be in agony for days from the pain of just walking across the sand. Despairing, I would wonder if my life would ever get better.

It did. 

Five years into injecting vitamin C every day, plus lots of exercise, lots and lots of exercise to stimulate collagen repair and strengthen stabilizing muscles, now, my feet and knees and hips love the sand. Now, neither the sand nor the ocean destabilizes my spine (unless the ocean is very rough). 

I am an excellent swimmer, but I only swim for fun, not exercise. And not a lot. Why?

The range of motion in stroking is too big. Throwing my kettlebells around, lifting free weights and working my ballet moves, my joints do not go as far as arms do in swim stroking, and so many reps when you swim! No thanks. My bones will ride on my tendons in the shoulder joint and that is not fun later.

While stroke swimming, kicking torques the low back (ouch), unless you have abs of steel and can keep them firmly engaged to immobilize it. My neck will be super mad after all the head turning to breathe. No thanks. 

What about other kinds of water exercise? Problematic.

I have poor motor unit recruitment. Something about the musculoskeletal disaster that is Ehlers-Danlos, it is hard for me to do a good muscle contraction. What stimulates my muscles to engage are external forces such as resistance (weight), instability, impact, vibration plus gravity, an important factor missing in water. Perhaps poor muscle engagement makes water exercise seem easier when you have EDS. Perhaps in water, you are doing more flinging of limbs around than productive exercise. This has been my experience.

I have poor proprioception. Where are my joints and what are the doing? I lack the ability to sense that. To know, I need my eyeballs, a mirror and hopefully a good physical therapist to spot me.

Water shoves joints around unpredictably from every direction, and I cannot see or sense well what I am doing. In water, I will reinforce my poor muscle patterns and imbalances and have little control over my wandering joints. Water exercise may have other uses, like for someone who is a falling risk, but overall, exercising in the water is not the place for a contortionist to get strong and stable. Also, exercise in water will not stimulate bone strengthening. That takes force.

Over time, with precise practice, I built habits of healthy joint function and better length-tension of my muscles to keep my joints in the best place I can. I must have excellent habits because I cannot sense where my joints are and what they are doing. Oh, and I must mention the greatest book on posture ever. It is the foundation of how I move.

Just yesterday, I got a ride on the research machine that will one day replace the DEXA. The DEXA is not a very accurate way to estimate bone strength, especially on my people. The coming machine is able to evaluate bone quality. Per the scan yesterday, my bone quality is EXCELLENT. As it should be. I inject myself with glue, run forces through my skeleton and get intense circulation every single day.

Want to be strong like me? I highly recommend body weight exercises on land. No equipment needed. Every morning, I roll out of bed, start my stove-top percolator (takes a while, but I enjoy the ritual of it) and do 10 minutes or so of bodyweight exercises. Such a nice way to start the day.

Another reason to do real exercise and get strong: Dropping and doing 15 pushups is a useful trick when you are having an autonomic surge. Metabolize the adrenaline right on out.

Take baby steps, baby steps!!! A good physical therapist or trainer can show you regressions of exercises that are too difficult, which means simpler versions to build strength so you can work up to a more challenging version. It’s probably going to hurt because rehab when you are very weak is painful even for normal people.

Running on the sand has been a wonderful addition to my regimen. In our society we walk on too many flat surfaces with overcorrecting shoes. There are so many muscles in the feet and they simply don’t get a chance to work. The challenge of pushing the weight of my body in the loose sand with my bare feet has been the best rehab I ever did for my feet and knees. 

Trotting backward to activate and work the posterior chain, those are the neglected muscles along the backside of your body. Very important to get those strong in order to have whole body stability. Work that posterior chain to end spine pain and stabilize hips.

On the beach, in the sand, I run until I cannot run anymore. Doesn’t take too long. Running on sand is hard, hard work. 

Then back to playing catch until my pulse comes down.

Then, run. Repeat. Repeat. Until I drop.

Dramatically fake flopping just like a real NBA player trying to get a free throw, and trying to make my PT laugh.