Learning the Ropes

Back at the Hanger Clinic for my third visit since getting the ExoSym, I was ushered into the routine of the place. Once you have been casted, tested the test device and received your ExoSym, the next step is to get you going on a training routine unique to your own needs to get the most out of the device. As Jared of Jared’s House of Pain fame put it, “These devices are perfect for you, when we get your body in the right shape for them.”

During my last visit, Jared worked with me on a number of core exercises, demonstrating them then putting me to work. His secret number is six. You do however many reps of each exercise (varies based on the exercise) six times. I have eight exercises I must do with progressively harder work for each. My routine is two days a week, with four of the exercises each day. Doesn’t sound like much, right? Well, I was inches away from buying an “Everything Hurts and I’m Dying” t-shirt after day one. It’s not easy, especially if you’re not one of those people who lives for going to the gym. I abhor boring routine workouts. I don’t find them fun, invigorating or in any other way enjoyable. It takes some deep discipline to ignore those “we can skip today” and “I don’t need any more of this crap” internal conversations, I tell you what.

After receiving your exercise demonstration, every visit after that is basically a visit to the gym where your personal trainer checks in on you, as does the magician who created the devices that allow you to be bigger, stronger, better for considerably less than $6 million. You sign in and go to work independently at the gym, working through your assigned exercises.

The Hanger physical therapy process is set up as a group atmosphere. There are several people doing their exercises and getting training from the same person all at the same time. It’s both a way for the good folks at Hanger to help as many people at once and also for us to mix and mingle, spot and support, and basically get to know our fellow ExoSym-ers. We’re scattered around the globe. This is the one place where we’ll always find each other. Kind of our own special Pokémon Stop of awesomeness.

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Stretching that flexor.

As I started through the House of Pain Day Two routine, Jared checked in on me and I had the wonderful opportunity to meet a new ExoSymer, Lucy, who was out from England for 10 days or so to get her device. Another four device owners were mingling about doing their workouts with Jared. Once I’d warmed up properly, Jared decided to add some spice and get me working on balancing exercises. With both feet being so bad and my center of gravity so off, balance is not my friend. However, in trying a few things we discovered the pelvic tilt I’ve had in my right hip so long has caused a tightened hip flexor. Jared added daily stretching exercises for that muscle to add to my routine.

Then he set up an obstacle course with a balance beam. The very name “balance beam” gives me the willies. Yet, I pulled it off. It wasn’t pretty, but it worked. My 7 year old caught me doing the double beam it on video. After that I did it on one beam and then a few other obstacles, which impressed me.

One thing that was mighty helpful was learning how to step down hard. Unlike how I used to, land on both or the best foot at the time, with the ExoSym, you land in the middle of your foot and keep going to dispense the force. The harder you land, the bigger the next step. Practicing that caused a few jarring experiences, but I got the hang of it.

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Day 2, or maybe 5: Adjustments and Physical Therapy

Today was my first visit back to the Hanger Clinic since getting my ExoSyms last Wednesday. I was so looking forward to this visit as I discovered the morning after receiving my ExoSyms that there was a very real reason for feeling so uncomfortable the day before – the left one needed some adjustments. It was rubbing in a couple of places and causing pain.

When I put them on Thursday morning my foot really barked. I had a couple of tender spots where the device was too tight or rubbing. I wore them for a couple of hours, but took them off for some relief from the tender spots. Thing is, the other pain was gone with them on, so it was a trade off as it came back when they were off. I didn’t wear them Friday and the pain was less when I put them on Saturday.

I spent all day Saturday moving into the new addition and unpacking the kitchen. By mid-afternoon the tenderness was back and I had to take them off. My feet screamed at having the pressure of my weight back, but I pushed through. When I couldn’t take the foot pain anymore I put the ExoSyms back on and got a second wind. It was like that all weekend.

So today I was thrilled to see Ryan and couldn’t wait to hand them over for adjustment. I resisted the urge to rip them off and run at Ryan with them in my hands. That would have been a little weird, even for me.

Truth be told, Ryan had been on vacation since my last visit, but texted me no less than six times over the weekend to see how I was doing and offer support. This is so much more than good customer service. This is someone who truly cares about the comfort and increased ability of his patients. In all my years of seeing medical professionals, and there have been many, mind you, I have NEVER had a medical professional check up on me like that. Sure, nurses have called to see that I’m not dead the day after I’ve gone home from surgery, but the doctor himself (or in this case, the very person who designed, fitted and sent me home with the device) – never.

Needless to say, Ryan met me right as I arrived and offered to get to work on the adjustments. As Ryan worked on the ExoSyms, Jared met me with his list of exercises he feels will help me develop my core in 12 weeks. Or as I’m want to call it, Jared’s Special Recipe to Make You Call out for Mommy. While my two kids spent quality time with Saint Steve Jobs (the iPads), Jared put me through the paces for about two and a half hours with exercises that pushed me pretty hard.

Adjustments, adjustments, adjustments

Almost everyone needs several adjustments to their devices until they’re perfect. Ryan came back a couple of times and I tried on the devices until we got all the spots addressed. He took a bit off the toe end, widened the foot plate, cut away the spot that was rubbing on my ankle bone and tightened the knee cuffs (that last one he said is very common to do in the first weeks of an ExoSym). He also helped correct my difference in leg length with a little extra padding in the right shoe.

OK, so it doesn’t show as much in the before and after photos above, but in the end, it was so very worth it. The left one felt so much more comfortable, and fit better in my shoe. I did some walking, took a stroll around the outside of the building, and even took on the stairs.

When I left, I didn’t want to lay down and sleep like I did on the first day. I wanted to WALK! I took the kids to a park and we played in the playground. Then we drove home and I stopped off at my husband’s office to visit. When I got home, I stood in my new kitchen and made a nice dinner and even cut up the ingredients and did some pre-prep for tomorrow’s breakfast. THIS is what it was supposed to feel like. I’m feeling a million times better about my ExoSyms now.

Oh, and remember that drawing of Jared’s I forgot to take a picture of last time, the one about how our body mechanics are like a clothes rack. Guess what he had on his board today? Here it is for your viewing pleasure.

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The blue on the left is the clothes rack. The two bodies to the right are showing the wrong way to stand and the right one with the red being the force distribution from steps, jumps, etc. It starts from the foot and is supposed to zig zag evenly up the body. In this one he’s showing distribution with and without the ExoSym. In my case, the red lines go WAY out to the front and are small in the back, thus the need for my core workouts to push that force back.

Day 1: ExoSym Delivery

Day 1. The day everyone who has decided to take the leap of faith to the ExoSym looks forward to with anticipation, hope, anxiety, a host of “what ifs” and belief. It was an emotional and completely overwhelming day for me, both physically and emotionally. While the entire process of getting my ExoSyms and beginning my physical therapy was only three hours, I left feeling I’d been going all day.

It began at noon when I signed in, joking I was there to hand over my suitcase full of cash. Ryan met me at the counter and laughed. I could hand that over at the end, he said. Not to be out done, as we walked to the room he turned with a straight face, “So, what are we doing today?”

Touché, heir miracle worker, touché. He knows how to work with us nervous first timers and I love him for it. That was the laugh I needed.

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Ryan does his Vanna White with my devices and stuff.

In the room, he’d already had my ExoSyms, a bag of knee sleeves, and those spongy heal lifts ready to go, spread out all Vanna White style. I have to admit, my heart skipped a beat as I saw my familiar foot shape, finally on a pair of ExoSyms. It was about to get real.

Ryan held up one of the devices and told me straight, “These are the perfect devices for you, in a year to 18 months. You’ll need to work to strengthen yourself to get the most out of them and they’ll serve you well. You have to remember it takes time and effort, and you have to go easy on yourself. Remember, one day at a time.”

I took a deep breath and reminded myself, I can do this.

I’m terribly skinny in my legs thanks to very under-developed calves. The knee sleeves Ryan had lent me when I tried on my test devices, and what we need to wear with the devices to protect our knees, slid down pretty quick. I asked him if he had something smaller. He brought me some flesh-toned sleeves with gel in the inside. They fit great, but on an 80-degree day, man did they make me sweat. It was a pick your poison kind of choice. I’m saving those for the cooler days (something like 80% of days in Seattle).

The first thing I noticed after I put them on was my shoes weren’t going to make the cut. They’d barely made it with the test devices, but they were not happy with the real thing, especially the right where I needed to add a lift. Unfortunately, Ryan didn’t have a size that fit me perfectly. I am a size 4 regularly. He put me in a Size 6EEEE (meaning it was wide and deep). It felt tight, and HUGE. Maybe it was just the new shoe needing to break in.

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My feet, the ExoSyms and my super huge new shoes.

Ryan had me walk a little in the room holding onto the bars for support, but quickly moved me out to the gym. There I wandered a bit before being introduced to Jared, an ex-Army doctor of science with some serious understanding of rehabilitative physical therapy. I’ve been through my share of physical therapists, and I have to say I was incredibly impressed with Jared right away. He really knows his stuff. He’s been helping all kinds of people strengthen for the ExoSym for almost three years now. I felt pretty quickly that if anyone would get me there, he could.

Jared took a few minutes to give me the best lecture I’ve ever had on why my body hurts like it does. I wish I’d thought to take a photo of his white board drawing. I was too enthralled. (I did take one on my next visit if you’re curious.) Basically, he compared body mechanics to a folding clothes rack. That diamond pattern of the two sides of the rack illustrate the forces that go through our bodies as we move – zig-zagging their way up from foot to calf to thigh to pelvis to abs to lower back on up. If we don’t do it right (think landing with straight knees from a jump that rattles your teeth), or one of those points is weak (like, say, half my body), the rest are out of balance. His job is to get me, and the rest of us, in balance.

With that he had me walk and focus on straightening my pelvis, tightening my abs and tucking in my butt (which he refers to as “pinching the penny.”) Right away my gait improved. With that, he had me pull some large ropes around, practicing my new walk. That’s about the time my dad arrived and started filming. Yay Dad.

Then Jared put me through some serious ab exercises. In one I laid on my back with my feet in loops hanging from a pole, so my feet were suspended. Then I had to use only my ab muscles to straighten my back and lift my butt off the ground (no pushing down with my feet). Once I got it, he said, “Great. Now, do that 60 times.” I almost choked. His rationale is he’s training me to althletic ability, which is what I’ll need to be to learn to walk correctly. I’ll have to do that three times a week for at least 8 weeks, but most likely longer.

After that, Jared had me stand with a bar to my side. Around the bar was another huge rubber band. A three-pound weight went through the loop of the band and I held the weight vertically in my hands. I had to pull the weight away from the bar, but not twist my body in the process. That was the hardest. I needed a mirror to see what I was doing wrong so I could correct it. I’m to do it 40 times on the weak side, 20 on the strong. Ryan walked by and asked how I was doing. “Kill me now,” I joked.

After I was good and sweaty, Jared took me over to try stairs. In the ExoSym, you need to step up on toes, and down stairs on the middle of your foot. Down was super easy. That’s how I do it already so I don’t hurt my ankles. But up, that was another story. I do it with my butt sticking out and leaning for leverage. We went outside to stairs going up from the street to practice. This, I’ve decided, is my biggest challenge. I’m so very weak on the right I can’t step up with my right foot without a railing, ever. We’re going to fix that.

At the end of the appointment I walked across that mat again, the one that tested my gait before, with the test devices and now with the real ones. There was even more improvement. I’m excited to see my progress again after more strengthening.

Throughout it all, though, my left foot ached. I’d really hoped I could stand longer than usual, but that wasn’t the case. My feet felt squished and my left one in particular was not happy. I knew it wouldn’t be perfect, but while the old pain was gone, I had different pain. That can’t be right.

I drove home questioning if this was the right decision (driving being another challenge as I’m so short and you can’t move your ankle in the ExoSym to move between the gas and break, but lifting my whole leg made the top of the device hit the seat below my knee). I called a fellow Clubbie with two devices for support and advice. She talked to me straight as she always has, reminding me that it takes us Clubbies a lot longer than others. Many of us have always walked wrong or had weak muscles. We need to make them strong to have the device work properly. In just her first month she’s seen huge improvement. She reminded me to have faith.

That night when I took them off, it wasn’t more than 20 minutes before the old pain was back and I was walking like a 70-year-old. This was going to be worth it. Maybe I just needed better shoes.

The next morning when I tried them on, my left foot barked. I had a sore spot on the inside of my left foot and on the ankle bone. That’s it!! The device simply needs to be adjusted – stretched a bit in one place, ground away in another – to better fit my foot. Unlike folks who come out for intensive 10-day or so visits for their devices, I have to space mine out. And Ryan is out of town on vacation now. So instead of give myself bruises and blisters in places where I know the device needs to be adjusted, I’m wearing it a couple of hours each day to practice my walk. My next appointment is Monday and we’ll get it all sorted then.

This was a long day coming, 44 years to be exact, and I can say with total certainty that this day was made possible thanks to the incredible support of other Clubbies who have gone before me into the world of the ExoSym. Through their honest advice and sharing of their experiences, my expectations were kept realistic and what I thought was a defeat, getting braces, has turned into a supportive elite club of dedicated folks who just plain get it – whether they have the ExoSym or not – because we all refuse to give up.

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Visit Two: Test Devices

ExoSym Test DevicesToday was my second visit and my first taste of what the ExoSyms will be like as I tried on my test devices. I went in with an open mind, but well armed with advice from fellow Clubbies – don’t expect the angels to sing and sudden freedom from all past issues the moment you put those babies on. Good advice. And dead on.

Last Thursday, I was casted for the test devices. Today was the appointment where I’d try them on and Ryan would adjust them as necessary (until today, a rather ambiguous process).

The kids and I drove out to Gig Harbor and I met my dad in town for lunch. He took the kids so I could go to my appointment.

The first piece of advice I’d like to impart from today’s experience is “bring reading material.” This is the second meeting where there was a lot of alone time as I waited for a very busy Ryan. I worked on my ruthless solitaire skills and made a mental note to never forget my book again.

When I was first escorted to my exam room, I saw two women testing out their brand new ExoSyms – one each. One lovely lady from Albuquerque stopped to talk to me briefly. She was still getting used to it, but said she was walking with no pain. She was really pleased, which gave me hope. She wasn’t a Clubbie, but had been dealing with a deteriorating ankle and past surgeries, so she was so pleased to experience walking without pain. “The doctors told me my next step was surgery with a cadaver bone. That didn’t sound good,” she joked with me.

Not long after, Ryan arrived with my test devices. They’re basic clear plastic outlines of what the ExoSym will be, without the strut and far more plastic than there would be fiberglass in the final devices. Ryan gave me some knee sleeves and had me try on the devices. The right one fit so nice, but the left one was way too narrow.

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The device with my shoe on.
Ryan had me put on my shoes. I think my shoes yipped, I’d stretched them so to get my feet in. When I stood, I noticed if I relaxed I hyper extended me knees. It felt more natural to try to stand on the balls of my feet.

Ryan took them in the back and “adjusted” them. When he came back, the left one was warm (he’d heated and expanded it). It was closer, but still no cigar. Off he went to do it again. This was when I became convinced I could beat solitaire.

The next time he came in, I tried them on and Ryan put in the world’s most comfy wedge lifts. I kid you not. So soft and spongy, and just the thing to level my feet. A little extra lift in the right shoe and off I went.

First he had me walk with parallel bars on either side of me. He noticed my left toes pointed out and he corrected me. I got that down right away and suddenly, I really was more stable. I think I might have impressed Ryan. He seemed surprised I’d gotten it so quick and had me head out into the gym to walk around. He was pleased with my form and I walked back and forth for a bit. I pointed out where my right kneecap was rubbing and my left outside ankle bone was rubbing. He make a mark on the devices in each place in Sharpie and had me take them off. Back to solitaire.

When he came back the final time, I put them on and strutted around. Yes, the sky didn’t open with sunbeams and the angels didn’t sing, but I certainly felt far more comfortable than I thought I would. The bone pain wasn’t there. However, the left foot tendonitis was still a little bit annoying, but not as bad as without.

Ryan pointed out my ExoSyms will have a strap around the ankle for more support (these test devices didn’t). That will help, he said. Also, the ExoSyms only correct everything knee down. It will help me isolate what I need to work on knee up, such as my weak hip and core, he said. While I wait to take delivery of my devices in 16 days, I’m to work on a number of exercises he’ll send to me. I hope with 16 days of core and hip exercises I’ll be able to hit the ground running, literally, when I take delivery on July 27.

Before I took them off, Ryan had me walk across the mat I’d walked across on my first day that measured my gait and steps. He showed me how the device had corrected some of the issues already. “This shows me we are on the right track, which is really good,” Ryan said. Core strengthening will only do more.

Then, at my request, he took a video of me walking with them so I could compare with my “before” walking. I sure felt more stable, but I make a point of not watching video of myself walking. This time I needed to so I could see for myself. That’s Ryan at the beginning, telling me to “hit it.”

I’d taken the devices off just before my dad and kids arrived. They all asked to see the video. My dad remarked right away that my gait was much more stable, with less limp. Later, when I showed it to my husband, he said the same. So, for just a test device fitting, I can say that the devices will definitely be a positive improvement for me.

It sucks to now have to wait two weeks, but I’ll focus on strengthening and keep up the count down. It will be here soon! Thanks you Ryan, for your dedication to making these kinds of options for better lives available for us.

My First Visit to the Hanger Clinic: Casting

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At the Hanger Clinic before stepping inside.

Today was my first of many appointments at the Hanger Clinic and it was pretty awesome to finally meet the team.

When I arrived, they photocopied my driver’s license and had me sign releases to use my image in photos and video. I had the option to opt out as well, but figured, “What the hell.”

As I waited, I encountered the ExoSym in action for the first time. A good-looking young man in great shape walked by and out the door with one on his right leg. I stared like a preschooler encountering an animated monkey for the first time. I was in awe. He had the slightest limp but strode with confidence. It made a small squeak noise in his shoe as he stepped and I wondered if that was my future – squeaky shoes. It didn’t matter. It looked cool. In fact, all the guys looked cool.

I snuck a peek at the guys standing around in the “gym” area sipping coffee (they have free coffee!). They each had one. They looked as normal as can be and comfortable in their skin. Yet I was entirely intimidated. I wanted to talk to these fellow ExoSym folks, but I suddenly couldn’t think of a thing to say. “Hi, I’m Jen and I’m getting a couple of those. What do you think about them?” seemed so lame. I was nervous, way out of my comfort zone (this talking about and admitting my need for these devices is still so new to me), and uncharacteristically shy.

My daughter chimed in, “Mommy, are those the things you’re getting?” Suddenly, it was very real. I looked at her and remembered all the things I’m excited I’ll be able to do with her once the foot pain is gone and I’ve built up my strength using the devices.

image2When my appointment time arrived I was taken back through the “gym,” where there were several hot, bad ass military guys chewing the fat, and into to Ryan Blanck’s office, the director of the clinic and the inventor of the ExoSym. As I sat waiting for him I was in awe with all the notes, thank you plaques and recognitions on his walls, highlighting the number of lives he’s made better with his work. I was in the company of good people.

July is crazy time at the clinic. They’d worked to get me in, but patience was needed as Ryan worked with a double amputee then a wounded ExoSym patient, both of which who’d flown in from far across the country.

When Ryan came in, he asked a few vitals – height, weight, age, etc. – then asked how I heard of the ExoSym (through my doctors at Harborview Medical Center in Seattle). He was surprised it wasn’t through the clubfoot Facebook group. He said he thought I might be one of the first clubfoot patients to come to the clinic that didn’t hear about it from the group. That says so much about my new tribe!

Typically he shares all kinds of information on the device, he said, but he quickly ascertained I’d done my homework. I did admit I was nervous and it took me two doctor and physical therapy appointments, and finally a meeting with my doctor and the physical therapist together to convince me to consider the ExoSym. He knew right away why. Pointing to his head he told me its normal to have to get past yourself. He told me the good news is these devices aren’t like other braces, and don’t look like them. They’re like an exo-skeleton. “They’re made for that guy to go back to work,” he said as he pointed to a photo of a combat soldier in full combat gear.

I smiled. “So if I imagine I’m more a Halo warrior than a Clubbie who was so bad off I needed help from a device?” He smiled, “Exactly.” I like that analogy.

He had me walk across a mat that recorded how I walked, stepped and moved. He showed me I step with my whole foot, not heal first (knew that) and that I list to the starboard. (Yup, know that too.) We talked about my limp and the mechanics of my body. He said if I was normal from the knees up he knew the devices would be great for me, but not knowing how the rest of my body will strengthen, he said we’ll take it one step at a time. The cost includes up to eight physical therapy appointments and we’ll use them all so we’re both happy with the results. “I certainly see you can benefit from them,” he smiled. “You will see improvement, I promise. All your nerves will turn to excitement when you try on the test device on Monday.” I have faith in my body. It’s assimilated so many times, it will do it again.

We then went in for casting. I put on these light stockings and he wrapped my feet in black plaster then left as it dried. He came back a few minutes later and cut the plaster off. My sensitive feet didn’t enjoy that feeling, and seeing a plaster cutter brought back some tummy clenching memories of my hospital visit filled childhood. I cowgirled up and pushed through, focusing on the fact these casts will be the mold for my new devices.

 

That was the end of the first appointment. Before I left, Ryan surprised me. He took out his phone and asked for my number. He put my cell into his phone then texted me. “There you go. Now you can reach me if you need to.” That really made me feel special at a time when I really needed to feel supported.

Ryan knew I was feeling nervous and out of my comfort zone. He assured me again that this was going to be great and he looked forward to seeing me experience the devices on Monday. I’m looking forward to it too.

Determining if I’m a “Good Candidate”

Once I decided I’d move forward with getting the ExoSym devices, I reached out to the Hanger Clinic. They told me the first step was to fill out a number of forms including a questionnaire to determine if I was a good candidate for the devices. It asked things like what I could and couldn’t do, knee rotation, pain levels, past surgeries and interventions, and such.

They also asked for me to send in a video of me walking to help Ryan in his decision on my candidacy. Below is what I sent in. I was hurting that day so this really shows how I walk on the bad days. With shoes on, and my orthotics in with the lift in the right shoe, it’s not quite so bad. (Please forgive the mess in the background. House remodeling causes for stacks of stuff in the rest of the house…)

I have to admit, it was such a leap for me to decide to go for these devices, I was so worried after all that psyching myself up I’d be denied. I sat on pins and needles waiting for a response. The truth is, you don’t want to pay for these things and have them not be any help at all. It’s hard to wait for that email, but I knew if I got it there was no turning back.

Two days later, the email came: “Ryan has reviewed the questionnaire and feels you would be a good fit for the ExoSym device.”

Oh, happy day.

Then started the process of getting insurance approval.