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.
It wasn’t this exact one, but you get the idea.
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.
I am very good at stepping ON the hurdles, but not quite OVER them.
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.
I start the morning with a check-in/ pep talk from Ryan: The body, the mind, and the ExoSym are like three different sheets of music. They’re all doing different things and they need to come together as one. It’s a big ask for me to use muscles I’ve never used before.
While I wait for Jared, Ryan gives me the assignment of walking up and down the length of the gray walkway with poles, in front of a mirror to watch for hip drop. I’m looking forward to continuing to work on my squish and load the devices properly. I hope I get to use the pole-and corset combo again. But it turns out that I’m in for completely different stuff today.
Jared arrives and tells me to continue walking: 10 up-and-backs. Before I finish, he stops me and asks me to walk backward. I knew I’d be asked to do many things I am not comfortable with. That’s the point. I told myself before I came that I would attempt everything without making a big deal out of it. Walking backward first thing on day two is a big ask. I can’t help but remind Jared that I usually have a hand holding on to something at all times. That it feels very likely that I’ll fall over backward in these things. I’ve already had a few suddenly-off-balance, full-body clenches. Not to back out or protest, exactly. Just to let him know that this isn’t going to go smoothly.
My legs aren’t strong enough to step backward without my upper body leaning forward to try to help. “Try not to hinge at the waist,” Jared says. Yeah, no kidding. I put enormous pressure on my hands/wrists/arms leaning so much on the poles. Plus, these things are heavy. Jared tells me to put my hips forward. When I lean my upper body forward, I am not “loading” the devices anymore; my weight comes away from the knee cuffs instead of going into them. I need to do so much work on my core.
I have over two minutes on the vibration plate today. I feel it in my teeth. It’s so weird and exhausting. But nice? When I step off, my lower legs feel completely heated up. The synthetic sleeves under the braces are so hot.
Next, it’s time for balance work. I stand between two vertical metal bars (like for lifting a barbell while standing). Put my feet together and apart. Try to take my hands off the bars. Step up onto a small block. Jared brings over a mirror so I can see if I’m keeping my hips level. I am not. My body and brain do not know how to correct this. Now take one hand off the bar, then the other. My toes and calves clench and my knees want to buckle.
The only thing my body really refuses to do is let me raise my arms over my head or out in front of me. I’m not ready to let go of the bars for that long yet. Mental block or physical limitation? Both, I think. Perhaps I could have done it were I not on the block, or if I were between parallel bars instead. Next, we try the balance board, again trying to stand level and take one hand away.
Following that, I do some ab work on the floor. That means that I have to get down onto the floor. Jared uses a bench and shows me a couple different positions. One is spreading legs far apart and bending one knee. That one is definitely out. The other is going into a lunge position and bending the back knee to the floor. I try that one. Before my back knee is down to the floor, the ExoSym on the front leg bites into the back of my calf. Hmm. Once I’m kind of kneeling, I’m kind of stuck. I’m supposed to move one hand from the bench to the floor and lower myself down the rest of the way. I do it, ExoSyms clattering together as I position myself on my bottom somehow.
Clear view of the struts up the back.
We try several positions for me to engage my core well. I end up on my back with one leg bent, one straight, a folded yoga mat under the extended foot so it will slide even with my shoe on. I bring the extended leg in and back out, keeping my core engaged, trying to use my hamstring but actually kinda tweaking the front of my hip.
Jared has another patient, so he brings the bench and mat into a side room with parallel bars. He assigns me 9 more sets (eight on the right, twelve on the weaker left). In between each set, I am to stand up (haul myself up using the bench), walk up and down between the bars, and get myself back down onto my back with my foot correctly positioned on the folded mat. Nine times. Sure, no problem. Ryan pops his head in and asks how I’m doing. From the floor, I say I still have seven more. I mean seven more complete sets, but the next time he comes in, I’m up between the bars, and he plucks the mat off the floor and starts sanitizing it. I feel very relieved. My right side is starting to hurt anyway. You can see in the video that Ryan has me progress to only using one hand on the bars. He’s encouraging about my hip drop. Then he tells me he’ll see me tomorrow. I still had four or five more sets to go. Don’t tell Jared.
Walking with two hands and then one. In between sets of ab work on the floor.
I am supposed to come back early in the morning to get my knee sections. I am nervous because I know that they will add so much more bulk and weight. But I’m also ready because they keep telling me how much progress I will make with knee sections. They should be ready by 8am. I will wait for a text from Ryan to confirm.
Food, ibuprofen, journal, meditation, sleep. Day two complete.
Disclaimer: This post and the ones that follow are going to recount my ExoSym Training Week at Hanger Clinic in great detail. They are meant to be a record for me and provide an account for CPers who are embarking on their own ExoSym journey.
I’m back from the Hanger Clinic with my ExoSyms.
Burning question: Was I able to walk out of there, ready to start my new life wearing the devices all the time?
Short answer: No. It’s going to be a very long process.
Saturday and Sunday are travel days. When we left off, I was lamenting new arm/wrist/thumb pain. And then I was marveling at improvements after an OT session. I have kept up with my new stretches pretty well, even though it feels a little silly to exercise my thumb. I love that I can do these stretches sitting at a table. No getting onto the floor and contorting and straining. Just movin’ my thumb. During the long hours in the car from California to Washington, I am amazed that my shoulder blades feel somehow lubricated. That when I stretch my neck, I can feel the muscles stretch rather than stay clenched in tension. I just hope it will last.
As a point of reference, here is what I look like in mid-June walking on my own and with poles. (After seven months of trying to work on core and glute strength with a home program set up by my PT.) I don’t often see myself walking, and honestly, it doesn’t feel as tough as it looks. It’s my normal. But man, that looks laborious. With the poles, I can see that I’m standing taller, with less side-to-side sway.
Training Day 1: Monday, 15 June. 9:30–2:15.
Monday morning, I feel curiosity and a cautious anticipation. It’s just going to be how it’s going to be. Mostly, as I do my stretches, I am super happy that my body is feeling pretty good, that my neck still feels like the vise has loosened.
My parents and I (my husband stayed home working this time) walk the few blocks from our hotel to the Hanger Clinic, where we are required to don not only masks, but also gloves. I quickly realize my cloth mask isn’t going to work with my glasses if I also want to see, even though it was supposed to mold to my nose. So I switch to the disposable provided. Hands are immediately sweaty. Not the most fun way to begin, but I appreciate the extra caution.
Prosthetist and ExoSym creator Ryan Blanck begins the day reiterating everything from my first trip last November. I have some permanent limitations and I have some weaknesses that have occurred, not because of the original cerebral bleed at birth, but because of the resulting body mechanics and compensations. For example, I have spasticity (increased muscle tone) that’s not going anywhere. I also have a weak core, but I should be able to strengthen that. It’s nice to hear someone tell me a lot that I already know about my body because it’s rare to meet someone who really understands how CP works. The devices are designed for a stronger, future me. It will be tough in the beginning and it will take time. Ryan also emphasizes that we are partners in this, for years to come. He wants text updates and weekly videos showing my progress. He wants to be in contact with my physical therapist. And he really means it.
At 10am, he brings in my ExoSyms, real carbon fiber now, with struts and all. He also brings in my shoes and heel lifts that go inside them from last November. He helps me put the devices on and checks the fit. “I’ll be impressed if you get the shoes on,” he says as he walks out the door to another patient. Maybe he just likes setting people up for success. Shimmy the shoe back and forth until it goes over the heel of the device, and it’s not too hard. He did let me know that it’s easier to do one device and one shoe before starting on the other leg, otherwise your carbon-fiber covered feet just slip everywhere.
Putting on my ExoSyms for the first time
Ready to take my first steps
Yes, the devices are heavy and bulky. They still feel like ski boots, but this time I am prepared for that. Ryan is still not in the room, but I pull myself up between the parallel bars and start walking up and down. Heavy, awkward, loud. But now I know that I need to learn to use them and to build up muscles over time. I am not able to imagine, right now, what it will feel like to move in them more freely, but I believe that it will happen.
ExoSyms are clunky and loud. But you can see the heel-toe gait that I feel rather indifferent about in this moment.
When Ryan returns, it’s time to get casted for the knee sections. Aha, that explains why there is a cast cutting saw and casting supplies by my chair. Somehow it didn’t occur to me that the knee sections are just as customized as the ExoSyms themselves. Ryan starts by wrapping my leg in plastic wrap, starting at the bottom of the knee cuff on the ExoSym and going all the way to my upper thigh. It’s certainly an interesting, rather intimate experience. We roll the legs of my shorts up, with my consent. I can barely stand with my legs far enough apart for him to squeeze the roll of plastic between and around my thighs. After the plastic wrap comes the plaster. Then I have to stand there, keeping my knees as straight as possible while the casts dry.
The yellow strips that he uses to guide the saw are up the back of my leg this time, so I cannot see him as he cuts the casts off. I grip the parallel bars tightly as the saw starts up, and the noise of it cutting into the plaster, combined with the intense vibration, takes me straight back to getting casted for AFOs as a child. The dreaded “tickler.” It does actually tickle, because the back of my thigh is very ticklish. But not in a good way. At all. I breathe through it, and one and then the other are done. Ryan takes the casts away and I practice walking more, with my poles this time.
Trying to walk with poles
Next, we go out to the front desk to hand over the cashier’s check for half the total amount. (I chose the in-house payment plan of half up front and the other half spread over nine months.) Thanks, Mom and Dad. I sign some papers and receive a hard copy for myself.
Then we return to the gym area. During this time, because of COVID-19, they ask that patients only have one support person in the gym, so Mom and Dad take turns being the photographer/videographer.
Ryan introduces us to Jared, the physical therapist. He then introduces me and my cerebral palsy to Jared. Ryan recommends training on flat surfaces only until my knee sections are ready, and then he’s off to other patients. Jared tells me a little about himself and his approach. He lets me know that, though he may seem like a drill sergeant sometimes, he has enough in his repertoire that if there’s something I’m not comfortable with, he will be able to adapt it. He reiterates that these devices are designed for a future, stronger me. He realizes that sometimes our minds understand actions that our bodies don’t know how to do yet. He asks what I want out of training, and I tell him my three goals: walking, stepping up and down (as from a curb or bus), and getting down onto and up from the floor.
We go over to the parallel bars, and the first thing he teaches me how to do is “load” the devices. This means leaning into the knee cuffs, putting your weight into them and keeping it there throughout the step. First, he has me lean forward onto my hands until my heels come up. Then I take steps on the balls of my feet, trying to keep my shins into the cuffs and engage my core. Next I come down from the balls of my feet, and I’m supposed to do the same thing–no leaning forward. I’m doing better keeping my weight into the device with one side than with the other. Jared demonstrates what I’m doing wrong, and I try to fix it. Then he gives me a different verbal cue, and that works better. I am praised for being able to modify my gait successfully. Synthesizing verbal and visual instructions into a physical outcome is no joke.
After learning to load the devices, it’s time to work more on core engagement. Jared asks if I’m willing to try wearing a tight belt with a pole down my back. Sure. When he returns with the equipment, he asks my permission to put the belt around my waist. When I say yes, he does so, and tightens it. It’s REALLY tight. The pole goes between my shoulder blades and through the belt, creating a gap at my lower back. Jared puts a mini bottle of baby powder into the gap, telling me to squish the bottle using my core. Let me be clear. Intellectually, I understand the action. It’s a pelvic tilt. I have never been able to do this well, especially while standing. (My pelvis is busy when I’m standing, and you want me to tilt it?)
I don’t know that I actually squish the bottle, but my back contacts it, at least. As I “squish,” my heels come up off the floor. This is what everyone means when they say “engage your core” when walking. It actually helps power each step. Huh.
Jared tells me, “Do 100 please.” Then he amends, “You already did ten, so do ninety more.” So I stand there holding on to the parallel bars and do ninety more squishes. Jared had already let me know that he only counts to one, so I knew to keep track myself and never ask him what number I’m on. When I make it to 100, I walk. It takes several tries to put the squishes together with walking between the bars.
Next Jared gives me my poles and takes off my corset. I immediately feel like I’ve lost the squish, even though I’m keeping my weight into the knee cuffs. I ask if it’s possible to cheat somehow, because I seem to be doing it, even though I can’t feel it. Jared assures me that there are several indicators that I am doing it correctly and asks for one of my poles to demonstrate. I hand it over and I feel, right at that moment, as if I’m teetering on the edge of staying upright. I can barely listen and feel a little panicky. I want to reach out and take my pole back from him. Relief floods me upon its return.
I walk along the gray walkway really trying to load my devices, really careful and concentrating. Then he asks me to walk as fast as I can, without thinking about all that. It’s maybe half my typical speed? I don’t know. Extremely slow and laborious. And not yet possible at all without poles.
We return to the parallel bars and Jared has me step up onto a very low box and down. Up again and down backwards. You can see in the video that I do a double take at that. (Yes, we did discuss how Ryan distinctly said flat surfaces only.) I can do this, stiffly and slowly, as long as I am holding on tightly with both hands.
I tell him at some point, during some activity, that my toes are gripping and my calves are tightening up. Ah, he says, in recognition. He has me step up onto an electric vibration plate next to the parallel bars. I hold on to one bar with both hands, nervous. I have heard of these, but I’ve never used one. He asks whether I want him to start in at full speed, or go low to high. I say start low. He turns it on, and before I can process any sensations, it’s all the way up. Holy moly! Almost indescribable. My vision is vibrating. My brain. If I shift, I feel it in my vertebrae. By turns amazing and completely unpleasant. Jared leaves me there, vibrating for two minutes or more. This is a very long time. When he returns, I am more than ready to get off. I suppose it could relax me if it didn’t freak me out.
We try to do more balance work, like raising my arms above my head. My toes are relaxed for one or two seconds before they grip up again. Lastly, he tells me to grip a very thick band in both hands that’s looped around one bar and raise it straight up. This I cannot do at all, but I am stronger on one side than the other. Jared is noting how my body functions.
My first session with Jared is over! I practice walking some more while waiting for Ryan. When he asks how everything is going, I tell him that my right heel is burning, and my left a little, too. He has me take off my ExoSyms to make some adjustments. We wait a long time, about an hour. If Ryan tells you “a few minutes,” be prepared to wait longer.
He brings back my ExoSyms with more arch support, to offload the heel. When I put them back on, the arches feel very noticeable, hard and uncomfortable, but the heels are better. Soon, I don’t notice the arches so much. Ryan bids us goodbye, telling me to do ten good steps in the hotel room, without letting the left hip sink. “Ten good steps are better than 100 bad ones.” It’s 2:15 by the time we leave, and we’d been there since 9:30. Lesson: If something hurts, tell Ryan as soon as you realize it, just in case he’s less busy then. Also, if you have downtime and you’re mobile, use it for restroom/water/food, even if you think it’s just going to be a minute. You’ll probably have plenty of time.
Recall that we had walked to the Hanger Clinic from the hotel. Recall that I had just put on my ExoSyms again to check the heel/arch. Mom and I walk out of the clinic, so relieved to take off our masks and gloves and breathe freely again. I figure I might as well try walking back to the hotel. I don’t want to sit down and take everything off and switch to my other shoes. It’s not that far, and it’s flat. Sure.
As soon as we leave the building and reach the parking lot, I realize it’s a bad idea. I am tired. I can’t remember any of the pointers I’ve been given, and my gait feels so uneven. Like I’m lopsided. Then I reach the first curb cut–up–and I almost fall over backward. Unlike any experience I’ve had. No wonder Ryan told me to stay on flat surfaces. There is no ankle flexion when in an ExoSym, and inclines need a special technique. I haven’t learned to do that yet. There are several more curbs to come. I walk so slowly, inching along, trying not to panic at the course I’ve set myself on.
We make it to the hotel, finally. And I’m never doing that again.
I am very tired, and I have VERY sore glutes medius. Food, ibuprofen, journal, meditation, sleep. Day one complete.
We are in week…ten?…of state/county sheltering in place because of COVID-19. My March 30th trip to the Hanger Clinic was postponed. I can now say (again) that next month I get my ExoSyms. I am excited and nervous, exhausted and frustrated.
Remember back in December when I finally started making myself use trekking poles so that I could be used to them when I got my ExoSyms? It turned out I really liked using them, and I was walking more and feeling really good about it.
Middle of March comes around, and I realize that my right thumb and wrist are really bothered. The soreness even travels up my forearm. I had injured my hand last September/October by repeatedly lifting a heavy bin off a shelf one-handed, thumb stretched up over the lip of the bin. When I recognized this was causing a problem, I rearranged things and figured out how to use two hands without tipping myself out of my chair. But the pain lingered and showed itself in daily life. I had trouble opening jars. I love opening jars. I’m good at opening jars. It makes me feel strong and capable. Not being able to do it is scary because it’s tangible evidence that there’s really a problem.
So, I was used to my thumb hurting when I did something strenuous, but now it was hurting when I did nothing. And…my left hand hurt too. The backs of my hands ached as I fell asleep and the inside of my wrists hurt when I woke up in the morning. It had to be the poles. My unaligned posture and muscle weakness must be causing me to put extra strain on my hands and arms as I grip the poles, try as I might to use a light touch.
With sadness, I put the poles away to give my hands a rest. I used ice and heat and muscle rub and NSAIDs. I even bought a wrist brace with thumb support, knowing that it wouldn’t “fix” things, but that it would help me really go easy on my right hand. I knew I had to use the brace consistently for 4-6 weeks to expect any changes. It did seem to help with the pain sometimes.
I’m going to be honest. I left off writing the post at this juncture three weeks ago. I didn’t feel like recording the minutiae of my body and its pain anymore. But here we are, and it’s almost June so I’d better just acknowledge how things stand and be done with it.
I’ll say this: don’t google “burning forearms.” Doing so will make you worry that you might have MS. I don’t think I actually have MS, but I do probably have tendonitis in both arms. I have not made a video chat appointment with my doctor, and by now I could probably make an in-person one. I just kept waiting and hoping it would get better. Instead, both arms hurt about the same now, rather than the right being worse. And the pain has traveled up the forearms into the biceps and armpit. So, you know, I used to think I had rough days, and now I don’t have a single limb that I can trust to function properly and not hurt. It’s a lot to take mentally and emotionally. Pain is draining. New pain draining and unsettling. My nose feels good. My chin too.
I don’t know how the tendonitis will affect my use of trekking poles and learning to walk with ExoSyms. I don’t know how using trekking poles will affect my efforts to heal the tendonitis.
I would like this particular journey not to have been affected by first, a pandemic, and second, new and heretofore unknowable physical ailments. I would have liked to be able to go into my week at the Hanger Clinic energized, excited, in good shape, and in as little pain as is reasonably possible.
Instead, I am here. Tired, out of it, unfocused, sad. My eyeballs want to fall into my skull.
So, I am adjusting my hopes for the whole experience. The important thing now, I tell myself, is just to get the braces and get the training. We will work on all the rest as we can.
I love a good movie montage. An upbeat or inspiring song begins and our protagonists embark on a series of impressive and exhausting feats over a period of many days, weeks, or months. By the song’s close, gains have been made, goals achieved. Progress. Transformation. All within the space of a single song.
My favorite montages come from
Dirty Dancing. Johnny teaches Baby to dance. (“Wipeout” and “Hungry Eyes”)
The Cutting Edge. Doug learns to partner, and Kate and Doug push each other in training. (“Groove Master” and “Ride on Time”)
Girls Just Wanna Have Fun. Janey and Jeff learn to dance together. Janey teaches Jeff gymnastics. (“I Can Fly”)
Footloose. Ren teaches Willard to dance. (“Let’s Hear it for the Boy”)
Honorable mention:
The Mirror Has Two Faces. Rose makes a change. (“The Power Inside of Me”)
Are you seeing the theme here? Clearly, I love stories in which people learn to dance. I’ll save writing about dance for another day. Today’s topic is time and progress.
With fewer than thirty days until my second trip to the Hanger Clinic, where I will receive and be trained in my new ExoSyms, now is my time for a montage. Time for an uplifting beat to float out of the ether and start me off. Or, if source music works better for you, time for me to pop my earbuds in and get to work:
Cut to me getting up early to stretch and strengthen.
Cut to me attempting to plank, and side plank.
Close up on my determined face.
Cut to me walking with my trekking poles.
Cut to me stretching out my calves while I microwave my lunch at work.
Cut to me at my PT appointment.
Planking at home.
Using my DIY balance board.
Sleeping.
Waking early to stretch again.
Making smoothies. Eating vegetables.
Planking again.
Planking again–and succeeding?
This is where the vision falls apart, with the progress and transformation. Once February arrived and I had about two months to go, I knew I needed to buckle down and really be dedicated. But I was working, and editing, and tutoring. Cooking and cleaning and laundering. Reading and sleeping. Spending way too much time online. Living my daily life. Can any regular person, who isn’t an athlete as their life’s work, maintain enthusiasm, drive, energy, commitment for so long? Well, yes. Of course there are people who do. Not montage-level dedication, sure, but there are people who set goals and reach them. I am not one of those people, historically speaking.
I’ve always found January and February more challenging motivation- and healthwise than November and December. With the holidays approaching there’s excitement and anticipation, activity. With the holidays past, there’s winter and work, and several breaks from work which are full of Netflix and the mountain of chocolate and treats resulting from Christmas, birthday, and Valentine’s Day. There was also cake. And ice cream. As there should be. I savored the gluttony and the slothfulness, but I can’t be surprised I’m having to claw my way out of it now.
Not gonna lie–the first three weeks of February were rough for my body. It’s always an interesting exercise to try to quantify and describe pain. Last month, my piriformis and SI joints were making themselves known. I go through some periods of time when that’s not the case. When my hips just feel tight and achy, but not in pain. So when one is set off, in that sharp, strong way, it feels like, “Oh, right, there it is. What I was feeling before wasn’t really pain at all.” And I remind myself that even though I never know quite how to get things to calm down again, they eventually do. The trouble is, once these areas are aggravated, so many movements throughout the day keep them aggravated, and after one week, two, three, I was beginning to wonder if this was the time that they were just going to stay angry forever. Usually if both sides are upset, one side hurts, and then the other, throughout the day. And I’m so grateful for that. I think I might lose my grip if both hips were screaming at once. But then they did (in different ways and to different degrees) and I still have my grip.
The pain is dynamic, changing from minute to minute. Sometimes it’s sharp, almost burning. Sometimes it feels muscular, sometimes it doesn’t. It travels down my IT band. It pulls at my inner knee. It moves down to clamp onto everything that meets at the head of my femur. Occasionally it throbs. Or it feels like a bit of stabbing, quick jolts cutting through the rest. Once or twice it has felt like what I can only describe as a second of gurgling, or a gargling. And I wonder what the heck is going on in there.
Mostly, I stretch it and I stretch it and I breathe. The pain itself is not so bad. Never would I rate it an 8 or a 9 or a 10. Because pain can always be worse. What’s bad is that it does not stop. That I cannot help it ease. No heat, rest, NSAID, muscle rub, or stretch will provide relief. I’m very aware that I could be stretching incorrectly, and that lying in bed is sometimes the exact wrong thing to do. Sometimes I start pounding on it with the side of my fist, hardly realizing I’m doing it. I want to drive a hot poker into the pain. I want to pop my leg out of its socket and put in a new one.
Meanwhile, I have new PT exercises (that are probably aggravating things) that I am supposed to be doing twice a day (ha!) in order to make the most out of what might possibly be the most important and most challenging five days of my life. I skip them a lot.
Here are some images just so we all have an idea of what I’m dealing with. On my body, obviously, there’s spasticity and lack of control. Several of these muscles have been lengthened (weakened), and there’s been a muscle transfer as well. Check out all those muscles under the gluteus maximus! Much of my pain is in that mess.
So, with March looming, I cut back on sugar, and on screen time, and I finish my editing project. I meditate and I stretch and do my exercises the best I can. One day (Sunday, February 23rd), I found a stretching position that I could manage to relax in while still maintaining it, that felt like it was hitting the spot. And it felt better. Noticeably better. I almost cried with relief and gratitude. Excitement. Triumph. Hope. Hope that I could keep these muscles and joints happy until I made it to Washington and the Hanger Clinic. Of course it hasn’t exactly gone that way. But my muscles and joints are still noticeably better than they were before. When I stretch lately, it feels like the muscles are actually stretching, instead of me fighting a brick wall. One morning after stretching, I took up my poles and did a turn about the neighborhood. As I walked, I felt a tingling at the back of my neck and down into my shoulders. Unlike anything I’ve ever felt. What is this magic? I wondered. Is my neck actually relaxing? While I’m walking? Will my neck feel less tight? Am I currently receiving the amount of blood flow to my head that I’m supposed to? There was no momentus decrease in overall neck tension, but it was a lovely moment.
The montage is a fabulous storytelling device, but real life is not a montage. I know I’m not the only one who’s ever wished to speed through (to a motivating tune) the daily grind and just finally be there–wherever the there is. Day by day, I’m nearing my “there.” And I am getting stronger. I am making progress. It’s tiny, but it’s there. My stint at the Hanger Clinic will arrive. In the meantime, I’m not living in a constant state of motivated, dedicated, driven, inspirational activity. I’m incorporating a reasonable–for me–amount of daily preparation. Could I do more? Absolutely. Will I wish I had? Don’t know. Would it really make a difference if I did? Perhaps.
Here is a truth I’ve learned. I frequently make judgements and assumptions, and discover quite often that I am wrong. Even about myself (whom I presume to know quite well).
The past five weeks since my first trip to the Hanger Clinic have been a time of experimentation and discovery. I left Washington having been introduced to my gluteus medius and knowing that I needed to learn to use trekking poles and to strengthen my core.
One assumption I had (born of experience) was that, when walking, I was too busy staying upright and moving in a forwardly direction to change anything about my body or gait. But when I returned home, on my mile walks to work, I tried to keep engaging those gluteus medius. I tried to engage my core. I found that I’m not yet able to start off that way, nor do both at once, but I can do one of the things some of the time. Huzzah!
In fact, I succeeded in achieving and maintaining a soreness in my gluteus medius for a couple weeks straight. This may not have been ideal, and I did tweak the left a bit too much sometimes. But it’s fascinating. If I try to engage my core, my shoulders drop down and back. If I try to bring my pelvis and backside under me more (instead of crouching/shuffling), it changes my whole alignment. Just slightly, but I can feel it. If I shift my weight back on my feet a bit, different muscles engage. And I can feel it. This is big. Physical therapists have been trying to get me to use these muscles via clamshell exercises since I was about eleven. I hate clamshells. I try, I strain, it hurts, and I am not successful, only demoralized and exhausted. But after using the test devices at the Hanger Clinic, and feeling that new bilateral ache, it’s like my brain finally has a connection to these muscles. Amazing.
I made a second incorrect assumption as well, this time about trekking poles. They’ve been suggested to me before, but I had never tried them. I didn’t want to have my hands full. I didn’t want to kick them or trip on them. How much stability could two sticks really give me anyway? So against trekking poles was I, that I was researching walkers and knew exactly which one I wanted, should that become necessary. I’ve used walkers, I know them, I remember what it feels like. Safety in the familiar; fear in the unknown.
I was handed a pair of poles at the Hanger Clinic and expected to use them. With a light touch. Clearly, this was not going to happen, especially with mock ExoSyms on my legs. I’m going to have to use poles for a while after I get the real devices, so I have no choice but to learn to use them now, take one element of newness out of the equation.
Trekking poles and a DIY balance board
Years ago, before we were married, my husband won a pair of trekking poles at a fundraiser. They’ve sat unused at the back of a closet ever since. Until now. I walked across the living room, feeling stiff and awkward, robotic, like the Tin Man, trying to coordinate all four limbs. Put them away for a while, concentrated on my posture while walking, did my strengthening exercises every morning (okay, most mornings).
On a sunny Saturday two weeks ago, I took my poles to a very smooth stretch of bike path and practiced for a few minutes. My husband said I swayed less and stood straighter. Just like when I was wearing the test devices. Wouldn’t it be ironic if trekking poles already take me halfway to where I’ll get with the ExoSyms… Sunday we did the full mile loop around our neighborhood. So far I haven’t kicked the poles or tripped over them. Although my husband graciously volunteered to kick one out from under me when I didn’t expect it, so I could practice for unexpected occurrences. That day, it still felt awkward. Sometimes I’d take a few steps without the poles keeping up and just lift them. And I definitely list to the left sometimes. The posture feels exaggerated, like I’m some kind of marching soldier. I realize of course that it is not exaggerated, but actually a shade nearer to typical.
Monday, I took them to work with me. By the time I got there, I could feel a soreness starting between my shoulder blades. Maybe that’s good, I thought. At least I’m using additional muscles. After work, I walked half the distance to home and went grocery shopping. Put the poles in the cart. Then I stood out at a bus stop that has no bench, or tree or fence to hold on to. Without poles, I would have been holding on to the bus stop pole itself. Getting on and off a bus with poles will definitely take practice, as I need to use both hands on the bus’s handles to pull myself up into, or lower myself down out of, the bus. Didn’t go smoothly, but I did it.
Tuesday, I was VERY SORE. Shoulders, obliques, whatever the muscles around the back of my ribs are, quads, gluteus medius. Well. Okay then. These poles are definitely helping me use my body in a new way.
I also made my own balance board. Cutting board, pool noodles, and some duct tape (won’t last long). I’ve only used it a couple times so far. Once, just for a minute to try it out. The second time for longer, really trying to engage that core and glutes. It works. When I was done I sat down at my laptop, and not long after found myself loudly complaining about my sore glutes. Yikes! Small increments will be the key on that one.
I’ve continued to use the poles for long-distance walks. One woman who smiles and greets me every morning as we walk in opposite directions applauded me: “Easier! Good!” One student asked me why I have those sticks. I do feel they lend me an extra small protection on the bike path–they are a visible cue to people that I need assistance, and perhaps a wider berth when passing. I would think that my walking itself provides this cue, but I have to remember that although people can see I walk differently, they don’t know that my gait is the result of a lack of strength and balance.
Although I was wrong about walking with poles, I was also right. I dread having them while using the bus again. And yes, I have caught the tip in the gap between sections of sidewalk, and yes the plastic cap on the end stuck in the gap and came off. Yes, I did try to stick the pole back in the cap and succeed only in knocking it sideways, still stuck. Yes, I did have to turn full around and bend down and get the cap and stick it back on by hand. And, yes, I did have an audience. No, I have not practiced getting up from the ground with the poles. I know a fall will happen sometime. No, I don’t put my hands through the straps when I’m walking, because that seems like a disaster waiting to happen. But I can get a pole caught in overgrown shrubbery, and not be pulled off balance. I can pull the pole free without breaking stride. So far. It turns out that using poles can be both helpful and troublesome simultaneously, with helpful winning out overall.
This morning I used my poles to trek to a doctor’s appointment a mile away. I realized I no longer feel so awkward and robotic. I’m getting used to the incessant tapping sounds. When it gets too loud, I’m reminded to use a lighter touch. I tried not to feel embarrassed using them when I walked down the hallway with the nurse (tech? assistant?), tips loudly tap-tapping on the linoleum.
She let the doctor know that I do feel unsteady. “She has her poles with her. But she can walk short distances.” I didn’t bother to let her know I only just started using them to “train” and can walk a mile unaided. It wasn’t important. I can be someone who needs to use poles. It’s okay to own that. Many people with disabilities who eventually start using mobility aids feel that they are giving up their independence when they no longer walk by themselves, because family/society have surrounded them with that ideology. But what they discover is that they have greater freedom and more independence with that assistance. And maybe even more energy and less pain.
I will not jump that far ahead for myself, but I can say that I’m surprised in a really good way. First, that I can think about and purposefully use muscle groups while walking. Second, that I’m using trekking poles with relative ease after only two weeks–and liking it. I walked the mile home from that doctor’s appointment as well. And I did not immediately take a nap.
There’s something else. All this core work these past five weeks? Not only does my torso feel different, I can see a difference. I have no delusions of achieving some kind of ripped, athletic physique with my ExoSyms, so I did not expect a visible change in so short a time. By myself, without anything extreme or a personal trainer. I think I can see, when I engage my core in front of the mirror–dare I say it–a whisper of definition along my obliques. I keep checking to see if I can still see it, if it’s a trick of the light.
These small changes feel so big to me, so full of possibility. I’ve learned that we are not stuck in an inevitable decline. We can change our bodies for the better. Even this body. Even my body.
Three months until my second trip to the Hanger Clinic. What more will I discover before then?
I’m back from my trip to Washington. My husband and I had a wonderful time. If you’re ever in Tacoma, I heartily recommend the Washington State History Museum and the food at Viva.
You’re never too old to enjoy an interactive museum.
“Nooo!” We learned where the phrase “Your number is up” comes from.
Our road trip to Port Townsend was beautiful and the food at Owl Sprit Cafe was delicious. I also heartily recommend heated seats if you rent a car in November.
Monday, 25 November 2019. Hanger Clinic Day One: Casting
After I checked in at the Hanger Clinic, we were shown around. The main room is a gym, lined with doorways leading to offices, a casting room, a walking room, an adjustments room, and a closet full of shoes. There’s also a little snack/break room for everyone in training where they can store their belongings and stay hydrated and fueled. And coffee, several coffee stations throughout the building. A map of the world hangs on the wall with pins in it, representing ExoSym patients.
Here’s what an ExoSym looks like.
For casting, I sat in a chair at one end of a set of parallel bars. I got to hold and explore an ExoSym. It was way heavier than I thought it would be, big and bulky (probably for a grown man). I tried not to worry yet about getting used to wearing two of them.
On the floor at my feet were a container of water and a cast cutting saw. The “tickler” of my childhood. This nickname was supposed to make the noise and the blade moving toward my skin less scary. The vibrations from the saw “tickle,” get it? This thing terrified me as a kid, and I can remember crying in a panic when it was time to remove the casts for my AFOs, even though Ray (my orthotist) assured me that the saw would not cut me.
Ryan, the prosthetist at Hanger, came in and did a few quick (seated) strength tests. It goes something like this: “Bring your knee up into my hand. Push hard. Harder. Okay, now don’t let me push your knees together…” He asked me to stand up on my toes. Which I can totally do when I’m hanging on to parallel bars. A few minutes after these tests, I could feel pain settle into my right piriformis/SI joint area.
Then a woman came in with a laptop and asked me questions about pain and activities and what I wanted to be able to do. These are the same questions from the application, and she added to/revised my responses. I told her that I would like to be able to get back to where I was at about age twenty-five, before all the chronic pain started presenting itself. Also, I would like to have the confidence that I can get up from a fall by myself. (I’ve recently discovered that it is now VERY difficult to get up from the floor without something to pull up on, and that’s scary.)
The ExoSym program has been serving civilians since 2013, with about 4,000 patients so far. I asked how many applicants are not accepted. Somewhere around ten. Ten people who used wheelchairs most of the time and/or who didn’t have enough function to be able to really use the brace. And how many people try it out and then decide it’s not for them? I didn’t get an exact number, but sometimes a condition requires further surgery. Annika the Amputee, for example, tried the brace but was still in pain from the tumor in her foot.
First, I had to put two nylon socks on each leg. Ryan was very quick with casting.
Two layers of nylons socks. Ready for casting. Cast cutting saw–the tickler–is the blue thing on the right.
He did my right side first, while I was sitting, and then I stood up while he did the left side. This surprised me a lot, especially since he could tell when I looked up or down while he was working. If the position of my head makes a difference, isn’t one cast seated and one cast standing going to be very different? My legs certainly felt very different.
Thought I’d be sitting down after these adjustments, but I continued to stand for the second cast.
Casts are drying now.
Then it was time to cut them off. “Oh boy,” I said. “This was called the tickler when I was little.”
“Trauma?” Ryan said sympathetically. “Now we have these thicker plastic strips, which are probably a lot different than what you had.” It’s true. Instead of small rubber (?) tubing, he used strips that were flat on one side, with a groove on the top, and quite rigid. He made quick work of getting the casts off, “unzipping” them with the strip when they were nearly cut through.
After I put my socks and shoes back on, Ryan took us on a tour of the back, where the braces are made. Everything from start to “finish” is onsite. There really is no end, because we can order replacement wedges and sleeves as necessary and Ryan will make adjustments over months or years if needed for any issues, like “changes in mass” (weight gain/loss). He made sure to give me his number and take mine so I can text him with questions and updates.
So the first day was fine. Afterward, we went to Kopachuk State Park and I tried not to stress too much about what was to come.
Kopachuk State Park
Tuesday, 26 November 2019. Hanger Clinic Day Two: Test Devices
The next day, we are put into the same casting room so I can change into shorts. Ryan asks about shoe size. And then we wait. Finally we’re led across the gym to the walking room. There seems to be only one patient in the gym. He has two devices, one with the knee joint. I want to watch his workout. The PT sets up obstacle courses, and there’s a rope hanging from a track on the ceiling to hold on to; I can hear the rope slide along the track, but I can’t see what he’s doing.
Ryan has fitted “hundreds” of CP patients with the ExoSym. He tells me I will feel weaker in the beginning. I will need to strengthen my core and my glutes, use muscles that I don’t engage with my current gait pattern. It will take two years for me to achieve full potential function. This comes as a slight shock because other ExoSymers–with congenital conditions–have been told one year. Two years of working really hard. Okay.
My two test devices.
He brings me a pair of new shoes and asks if we could lace them up. A full size bigger than my usual shoe, and extra wide. Then he leaves again. As I read on another blog: Ryan is busy. Seeing patients off who have completed their training, taking calls. He brings me a pair of sleeves to put over my knees. We put the braces on and he marks where to cut the excess off at the toes. Disappears to the adjustments room. I wonder if I have time to use the bathroom before he returns again. Just walking to the bathroom in the tight synthetic sleeves feels weird. Finally, he brings in heel wedges to put in the shoes, straps me into the braces, and finagles my feet into the shoes.
Putting on the knee sleeves after lacing up some giant shoes.
I pull myself to standing using the parallel bars. I let Ryan know it feels like there’s more room around my left calf (the cast I was standing for) than my right. He checks it and says it looks good, but adds that my body is valid in perceiving that sensation, or some such diplomatic acknowledgment. Perhaps it doesn’t matter that much because the area around the calf will be open on the real devices.
I take a step. Two. Heavy. Bulky. Cumbersome. Stiff. Like casts. Or ski boots. Like trying to walk in flippin’ ski boots–with cerebral palsy. No magic. No amazing shift or change. I had hoped I would feel the “energy return.” But the test devices don’t have struts, so that part is not there yet.
Very quickly, Ryan prompts me to take one hand off the bars, to try to glide the other hand. Hand gliding is not possible. He says he can see that I’m standing up straighter. Really? Isn’t that maybe because I’m holding on? He tells me to try walking heel-toe, use my core, take bigger strides. I clomp forward. I try. “Can you tell she’s straighter? Have you ever seen her walk heel-toe before?” he asks my husband. “Now this is only about thirty percent of what they can do,” he tells me. This doesn’t mean anything to me. I do not feel that they are doing anything but weighing me down. I feel, not just weaker, but more disabled, not less. I do not want seventy percent more of this.
He gets me a pair of trekking poles. I stay between the parallel bars as he adjusts the poles and tells me to try them. It’s not that I’ve never thought about using poles before. I’ve always hesitated because–how much stability can they give me if I’m the one holding them? They seem to just complicate things.
So I stand there in my mock braces, holding these poles, and I can’t move. “I don’t even know how to start,” I say. But somehow I do, I take steps toward the door. I have to turn around when the bars end. Turning is ridiculous. Ryan watches and says he has pointers, but he wants to see how my body responds, how my brain problem solves. He says I’m doing better than he thought I would. I don’t know whether to feel flattered or insulted. I ask him if he says that to everyone. He doesn’t.
Every time Ryan leaves the room, I try to explain to my husband what moving in these braces feels like. Everything is stiff and robotic, but also unsteady. “How does anyone learn to walk in these things?!” I wonder aloud. Let alone do anything else?
I’ll probably need to use the poles for the first few months, Ryan tells me. How do they feel, he wants to know.
“Right now, it feels impossible to function,” I answer truthfully. Ryan might have been surprised at my bluntness (perceived negativity?). He tells me to take them off and see what it feels like without them.
It feels lighter, roomier, like I no longer have casts on my feet. It’s a relief. Am I shuffling and swaying again? Apparently. But I can’t tell because it’s the way I’ve always moved.
“You’re here for a reason,” Ryan says. “Because you want something different. I’m trying to give you a different way of moving. It’s going to take time.”
I know all of this, but I cannot see years into the future. How am I supposed to decide whether or not to move forward and get the real devices based on this? I will have five days of training upon “device delivery,” when I come back to the clinic. How much can my body learn in five days? Before they send me back home to my own physical therapist who’s never heard of the ExoSym?
I get myself back into the braces. Walk up and down, trying to move faster, take bigger strides, remember my core. Everything is loud and clunky. Very aware that my feet are not on the floor, but inside a layer of hard plastic, I do not feel grounded, literally. I take a moment to just stand, handsfree. I can lean into the braces, into the cuffs below my knees. They hold me up, and I do not start to bend toward the ground. I lean forward, side to side. I do not lose my balance. “I’m standing,” I acknowledge. “I can’t do this without them, right?” I wonder, continuing to lean and experiment. “But how do you move? How do you pick something up? Or get up from the ground?” I try taking steps without the poles, but my body isn’t strong enough. My thumbs/hands are already starting to hurt from how much I’m gripping the poles, depending on them. I make my way outside the parallel bars and my husband holds my hands, higher up than the poles. This feels better. He is strong and stable, so much better than a pair of wobbly sticks.
I’m wearing my Kindness Elephant shirt designed by FootlessJo for some good vibes today.
Ryan encourages me to go out into the gym. I walk up and down a textured mat-pathway once or twice. “You should use a light touch with the poles,” he says. “Can you do a light touch?” I know I’m not supposed to be gripping them so hard. I cannot do a “light touch.” He can tell I’m trying. I am tired. My right heel is starting to hurt/burn. I feel done.
I make my way back across the gym into the walking room. I’m proud of myself for going out there. No one else was there. But I had elected to stay in the walking room the first time Ryan asked if I wanted to go out into the gym. I know if I’m going to do this that I’ll be facing lots of uncomfortable moments.
Safely seated, I tell Ryan about the painful callus on the bottom of my left big toe. Yes, he could put padding there in the real devices. “It should slowly disappear over several months, but we want it to be comfortable until then.” A $20,000 fix for toe pain? Sign me up! But really. My toe becomes excruciating because I land on it foremost, with every step. When he says the callus should resolve itself, what that means is that I will be walking differently. My gait will be different. I cannot say how that will affect the rest of my body, but it will. So I have to do this. I have to find out.
Here is my favorite moment. I told him my right heel was feeling pain and pressure. I pointed out where it hurt. He felt it and then he felt inside the brace. “Oh, there’s a little bump here. I can smooth that out for you. Feel it.” Sure enough, there was a tiny, but significant, bump in the plastic that I had been standing and walking on for two hours. Triumph! A pain, a reason for the pain, and a solution to the pain. Do you know how rare that is? How satisfying? How reassuring?
Just an hour or two after we left the clinic, I felt a new soreness that I couldn’t remember feeling before. Same amount on both sides. I thought it might be the gluteus medius, the ones that I needed to strengthen. I looked it up, just to make sure. Yes, these muscles were sore, but not in pain. Just using the test devices for two hours had forced my body (without my conscious effort) to use the new, “correct” muscles.
So here I am. Knowing that I have years of work ahead of me. No way of knowing the outcome. Right now, I feel more disabled in the things, yet I am supposed to believe that they will help me feel more able than ever before.
Goals before trip number two, when I will receive the real devices (in a few months):
-Learn to use trekking poles (with a “light touch”)
My first trip to the Hanger Clinic is coming soon. I will be casted on day one, and try out mock-ups, or “test devices” on day two. My last post included a list of actions or activities I used to be able to do. Now, let’s take a quick body scan and assess some chronic pain, shall we? Listening to someone’s aches and pains is not interesting. I know that. This catalogue is so I have my own “before.”
Feet: my left big toe started to send me sharp pain somewhere around…two?…years ago. About a year ago, I realized I was unable to step on it walking barefoot on my laminate flooring. This year, I went to my first podiatrist. He told me to wear stiff-soled shoes and thick, soft insoles. And don’t walk barefoot. I do not walk heel-toe; rather, my whole foot comes down at once, mostly on the big toe. So, I’m grinding the bottom of my toe into the ground with every step. After 38 years, I guess it’s had enough.
Ankles: these are mostly fine, unless I walk too much at once. Hooray!
Knees: One or the other of these aches often. The right started clicking and aching in June 2014, and the left followed in July. A doctor told me to ice them, twenty minutes on, twenty minutes off. What, forever? When I got referred to PT, I asked the therapist if some kind of knee support would help. She had me stand up and put her hands firmly around my knee. “Does that help?” she asked. I almost laughed. You mean if a knee support were going to help me, the pain would lessen right now? Just from that?
Hips and legs: Hips are always very tight. Sometimes I have strong, almost burning, pain in my right IT band. Other times an inner quad might hurt. Often, my right SI joint will give me sharp pain. It changes day to day, sometimes hour to hour. Sometimes I know what set it off; usually I don’t. I know I should avoid twisting while standing. Trying to do anything while bent over, wiping up a spill on the floor for example, is a really bad idea unless I take the strain off my hips and legs by holding onto something.
Back: I do not think of myself as having back pain. But sometimes at the close of a long walk, there is a pain and stiffness in my lower back that makes it hard to breathe. I stagger to a seated position and bend over my lap. A few cracks and a deep breath and I can straighten up again. I realized the other day that I “don’t have back pain” because I can make it go away. Apparently, I only count chronic pain as real pain.
Trapezius: If you’ve never looked at an image of the trapezius, check it out. It’s a giant muscle from the base of the skull, out to the shoulders, tapering to the middle spine. Since 2016, my neck and shoulders have been painfully tight. I know I have terrible posture. Telling me to sit up straight isn’t helpful. It takes a tremendous amount of energy to maintain good posture. Certainly while walking, it’s nearly impossible for me. Is PT helping? Can’t say for sure.
Jaw and ear: Yes, my jaw and ear hurt sometimes, just the right ones. It’s all connected. I think the constant neck tension is pulling my jaw and ear out of alignment. The years of extra strain on my stronger right side as it compensates for the left is taking its toll. If you’ve never had sharp, intense pain in your ear, be grateful.
This is the state of things. Pain from head to toe. Perhaps not all directly related to cerebral palsy, but definitely indirectly affected by it. I have tried many modalities to address the issues.
The ExoSym is life-changing. All the people in the videos say so. But what about all the people who aren’t in videos? How many try out the test device and decide not to move forward? Maybe it won’t be life-changing for me. Maybe I’ll still have chronic pain and very limited balance. It won’t do a thing for my muscle spasticity. It won’t make cerebral palsy disappear. The people who put on the test device and are “pain free” right then and there are usually people who were able-bodied before having some kind of foot or ankle injury.
My pain comes from a lifetime of atypical body mechanics. It’s going to be a different kind of experience for me. How can an hour or two in the test devices show me how they might affect my body long-term? I don’t expect any of my chronic pain to be immediately relieved. I’ve never felt an immediate improvement in anything physical in my life. Never have I been able to report back to a doctor or therapist, “Yes, _______ definitely helps.”
So what will the ExoSym do for me? What is a realistic hope? I hope that I feel lighter, that I can feel the “energy return” that the brace is designed to provide.
I hope that I feel something. That I can tell the devices are doing something.
Do that bridge thing where you lie on your back with your knees bent, hands by your ears, and push up off the floor
Jump rope. Kind of.
Touch my toes (sitting with legs out straight)
Play “tennis” at summer camp / be a batter during PE baseball
Pick up nickels from the sidewalk
Sit cross-legged on the floor
Step up curbs. Even down!
Walk up stairs without a railing. Sometimes.
Walk down a stair or two with my hand hovering over the railing, just to see if I could.
Handcycle for miles
Walk without pain
Travel solo, knowing that I would be okay
Live without constant neck tension and pain
A little hiking, with help
Climb ladders
Jump off a diving board
Look over my shoulders
Walk comfortably in bare feet, without my left big toe trying to kill me
Know that I could get up off the ground if I fell
Carry groceries for blocks
Some changes happen so slowly we don’t even notice them. Now, I need to walk out of my way to get to a curb cut, because I can’t trust my body to take me safely up a curb (and certainly not down!). Now I walk on by nickels and dimes on the sidewalk; might just tip right over if I tried to pick them up.
I know that most every adult can look back on themselves as children and ponder their lost agility. I don’t expect that I should be able to do pull-ups the way I did when I was eight. I would like to feel confident that I can step over an obstacle in my path or pick up something off the floor. Full disclosure, I can sometimes pick stuff up without needing to hold on to something. If I’m in my own home and I give my back enough time to slo-o-o-wly bend forward, I can do it. But if I’m walking to work and someone drops something, I don’t pick it up for them. Not with my backpack on. Not when it needs to be quick. Rather than moving them out of harm’s way, I simply apologize to the worms and snails in the middle of the path, who will soon be flattened by oblivious cyclists’ tires.
It’s difficult for me to acknowledge that some of these changes have been over, not decades, but only a handful of years. I’m not doing enough, right? I’m not being consistent enough with my physical therapy, nor do I push myself enough to stay active. But sitting on the floor, on the rug in the living room, or in my bedroom. In the past, that’s where I liked to be. Didn’t I do it every day? When did I stop?
I first heard about the ExoSym device from CerebralPalsyStrong, a website that started out as Teen Cerebral Palsy, run by a young woman with hemiplegia, Katy Fetters. The video of her experience and the links she shared convinced me to contact the Hanger Clinic in September 2019. There are Hanger Clinics all over the place, but the only one that does the ExoSym is in Gig Harbor, Washington. That’s where the guy who invented the device works, and he reviews every case himself.
Prosthetist Ryan Blanck designed the ExoSym in 2009. His goals were to reduce pain and restore mobility to active-duty and retired service members with limb salvage conditions as a way to avoid amputation. The device provides increased dynamics and energy return. In 2013, Ryan joined Hanger Clinic to bring the ExoSym to civilians with severe lower-extremity conditions or injuries (info from Hanger Clinic).
I emailed them expressing interest, and they responded with the application, instructions, and a long list of articles and video links about others’ experiences. Suddenly, I’m learning about a woman from New Zealand who was born with clubfeet, now walking miles, and a man with spina bifida now going hiking. And they all say the same thing: the ExoSym is life changing.
I got started on the paperwork, which was a series of PDFs I needed to print, fill out, scan, and email back. One document was a four-page questionnaire about my abilities, similar to a PT intake form where I rated my ability to perform various tasks from “extreme difficulty” to “no difficulty.” Rolling over in bed? Moderate difficulty. Squatting? Unable to perform. Sitting for one hour? That I can do. After another twenty questions about strength and range of motion (limited and limited), it was time to record a video of the way I walk. I’ve included it below so you can see it in all its glory.
Let me say this. I know that I look different than those with typical gait. Obviously. But to me, I’m just walking. I can feel that I’ve got a significant side-to-side sway if I pay attention. Do I make myself feel a bit seasick if I walk around after eating too much? Yes, yes I do. But do I really know what it looks like? No. I think many ambulatory cerebral palsians out there will relate when I say I’ve been startled by my reflection when I walk past a store window. So there’s nothing quite like walking for the camera and then watching it back. I mean, geez! Do you see that right hand? So helpfully flexing at the wrist while the fingers point? This is what I look like. It looks rather laborious, doesn’t it? It is.
I sent all my questionnaires, and my insurance info, and my photos and video. And I waited. What would Ryan say? Could the Exosym help me? Would I be a good match? Would I have one on just my left leg, the more affected side? Or both? Or would he say no, it’s not for me?
Finally, I hear back. I’m a good candidate! Excitement floods through me. But my insurance doesn’t cover it. Here is what I understand from the explanation given to me: the ExoSym has been coded by the insurance company as a regular AFO, which are much less expensive to make than the ExoSym device. If Hanger Clinic were to accept my insurance, then they, the Clinic, would be on the hook for most of the cost. Which they cannot afford to do. The woman from Hanger assured me that I could come to Washington, get casted and try the test devices, just to see if it’s worth it to move forward, at no cost. Then I could take time to save or raise money, use their in-house payment plan, and make my first payment only upon receiving the real devices.
Okay, don’t panic. Maybe I could get a different insurance? We were just in the enrollment window for me to be added to my husband’s insurance for next year. When I email Hanger and ask whether his insurance would cover it, I receive a form reply in bold, all caps, and underlined:
The ExoSym® program is a PRIVATE PAY PROGRAM; the current description and associated reimbursement from insurance companies does not correctly describe nor compensate for the Program. As such, we are no longer able to provide the ExoSym® Program through any private or commercial insuranceswith the exception of Worker’s Comp, Standard Medicare (not replacement plans), Cigna, United Healthcare Commercial Plans, our local Premera (WA/AK) only.
Now I feel that I have been yelled at. I wonder why she hadn’t just explained this to me in the first place. I understand that they don’t want to scare potential patients away. But I also think that people need to be prepared and not have their hopes for, literally, a better (quality of) life dashed because of money. If they know the facts going in, they can start planning, saving, crowdfunding.
I know you’re wondering. How much is it? I will need two devices, and mine will come with the addition of knee joints. As of September 2019, each device (no knee) is $9,000. That’s $18,000, plus $1,704 for two knees. A grand total of $21,408 for the devices and several days of training at the clinic. Not to mention travel and lodging. No big deal for some. A very big deal for most.
With the in-house payment plan and some very generous family members, I will be able to afford my ExoSyms, and I am so grateful.
What Happened to Your Legs? 