Life with ExoSyms Day 3: Training Week at Hanger Clinic

Training Day Three: Wednesday, 17 June. 10:30–12:30, 3:15–4:15.

Today was a day.

The hoped-for, early morning knee sections delivery does not happen, so we go to the clinic for my regular PT session with Jared. I “warm up” in a room with parallel bars, while Jared finishes up with someone else in the gym. Ryan stops in and tells me the knee sections aren’t ready yet, but he hopes they will be in the afternoon.

With Jared, I start with the ab work that we figured out yesterday. Three sets. At the parallel bars, Jared puts a rectangle of cardboard under one foot. It has carpet on the bottom, so it should slide easily on the linoleum. The goal is to slide the rectangle backward without bending my knee. I do not understand how this is possible. My right foot gets it sometimes, but my left foot can’t quite do it. My right glutes/piriformis area cramps up with the effort, and I start to beat on it with the side of my fist. Like I do. Jared disappears and returns with a massage gun. After I say I’m willing to try it, he puts it right where I point and turns it on. It sounds like a jackhammer. It feels like way too much, but it is more effective than my fist.

Next, Jared gets another carpet, so I have one under each foot. As I grip a parallel bar with both hands, I try to move my toes out and toes in. I can hardly move the carpet, and I feel it in my glutes and inner thigh. “Do thirty,” he says.

Right now, my left knee collapses inward quite a bit. These rotation exercises are to help strengthen the outer hip so that my knees won’t tangle with each other. In the CP world, this is called a “scissor gait.” With the knee sections on, there will be bulky equipment there to exacerbate the issue. Jared warns me that many patients are surprised at how heavy they are, how much equipment it is to get used to, and that people can sometimes feel emotionally weighed down as well. “We call these devices instead of traditional braces because it’s a whole system. The knee sections, the hamstring assists are optional. You might wear just the left until that side is stronger like the right, and then wear both.” He’s trying to prepare me, wants me to know it doesn’t have to be all at once. I appreciate that. And I wonder what hamstring assists are? I’m ready to come back and find out in the afternoon.

The last thing I do with Jared is stepping over “hurdles.” I say “hurdles,” because you will see in the video that the hurdles have been completely flattened. I practice taking bigger/higher steps, supposedly using my abs and doing my squish. I really don’t know how to coordinate hands, feet, abs. Up and back six times, never really getting the hang of it.

 Ryan takes my ExoSyms to prep them for the knee sections and tells us to come back at 3pm.

At the hotel, we eat lunch and I take a nap. When I wake up at 2:30, the muscles between my shoulder blades are extremely tight. The pain is quite strong, quite bad. I’m used to having neck and shoulder tension, but pain like this, right between the shoulder blades, is new to me. I take some deep breaths and ask my dad how to stretch that area. He shows me how to raise my arms up by my ears, cross my hands, and intertwine my fingers while keeping my head up. When I try it, I just can’t do it. It burns so much. I’m crying now, taking huge, deep breaths not really on purpose. My arms and hands tingle. My heart pounds. I take an ibuprofen while Dads rolls a frozen water bottle over my back. Still gulping air. Feeling shaky, a little ill. It’s time to go back to the clinic, but Dad tells me to lie down so he can do the ice treatment a little longer. We won’t be keeping Ryan waiting; he has plenty to do.

We walk the few blocks back to the clinic. (My mom has the car in Seattle.) I wonder if I’m going to make it. Still taking huge breaths, but my heart rate is down now. After we get there and get on our masks and gloves, the ibuprofen seems to be kicking in. I love how sometimes medicine seems to actually help now. What a concept.

I feel a lot better, though still quite tight, by the time I sit down next to my devices. Ryan says there’s “something weird” going on with them. 

Ryan has added a layer of dense foam padding on the inside of the knee cuffs. This is much better, feels firmer holding me up. I had been wondering why the cuffs had so much space between them and my shins. They now also have metal pieces coming out of them in a few places on the outside. I assume for the knee sections to attach to somehow. 

But he takes a knee section, puts the top part over my thigh, and just looks at it. Says he’s never experienced anything like this in ten years. A “knee section” is two pieces that connect at a hinged knee. Everything is made in-house at Hanger. But he sends the knee parts to California to get riveted together because he doesn’t have a riveter at the clinic. Whoever riveted my pair has connected the left bottom piece to the top right piece and vice versa. A human error. And there’s nothing Ryan can do about it except overnight them to California to get fixed and have them overnighted back. Which means I will have my complete devices on my last day. One day of training instead of three. Great. It’s not his fault, and he’s very apologetic. It’s frustrating, but we can’t do anything about it.

I tell Ryan about my muscle tension and he puts me on the vibration plate for a couple minutes. He has me practice walking for a bit and gives me some stretches for my back. Then I change back into my regular shoes and we walk back to the hotel. 

I think Ryan has a more incremental approach than Jared. Ryan: “Go slow. Rest. Get used to them.” Jared: “Do thirty, please.” We really don’t know what my limitations are. I had no idea I was straining my back so much. I need to ease up tomorrow because this is awful.

Food, more ibuprofen, more ice, journal, meditation, sleep. Day three complete.