How to Extending Shoe Life

img_8177Public enemy number one for your shoes is without a doubt, your ExoSyms. Great mother of all that is holy, this is a tough one. I’m used to $50 shoes lasting about three months before the side sole breaks down. Having $175 shoes blow out in three months tends to bring on serious colorful metaphor use in my house.

I had a heart-to-heart with Dominic at Wide Shoes Only (aka, Shoe God) about this as I coughed up $220 for waterproof hikers. He said in all his years in this business, he’s not seen an AFO (ankle and foot orthosis, of which the ExoSym is one) that doesn’t destroy its shoes before the shoe really has worn out. He did have a tip though.

The Leather Reinforcement

Dominic suggested buying buckskin leather (soft thin and flexible leather) and gluing it to the inside parts of the shoe where the ExoSym rubs. This, he said, would certainly extend non-leather shoes’ life (like mesh-top athletic shoes) as well as others.

He also shared a cobbler trade secret. He said the best way to do this is put rubber cement on the inside of the shoe where the leather will go and on the leather. Then let the two sit for about 15 minutes to get tacky. Once the glue is tacky, put the leather into the shoe and rub well to assure it’s on good. That extra waiting step makes for a stronger bond!

Money-saving tip: You don’t need to go out hunting or to a cobbler for the leather. Hit at thrift store and buy an old leather purse or jacket with this leather and you’ll have enough for several shoes.

I must admit I’ve not tried this because, like other Clubbies, I have WIDE feet. The problem with my feet blowing out of shoes is on the sides because the shoe is already tight. Imagine what putting more leather in will do? Going up another size will increase the unused front of the shoe even further and assure I trip more often (and most certainly in front of someone famous I admire when I’m wearing a skirt and no leggings underneath).

Athletic Tape

img_8178My physical therapist gave me a mile of this stuff when I was having bad tendonitis prior to my ExoSyms. That stuff is tough! I’d used duct tape already in my shoes and was disheartened to learn that the one thing that does break through duct tape is the ExoSym. Lots of people swear by it, so don’t disregard it right away. It just didn’t work for me.

So I pulled out the athletic tape.

I’m here to tell you guys, that there stuff works! I put it on a brand new pair of shoes, about three layers thick. I started doing this about two months ago and I’ve yet to have the stuff rip through. I did have it start to roll up on itself in a couple of places at the ends of the taped on section (no where near where I blow out). I cut off the rolled up edge and apply another layer if needed. Like everything else, I’ve had to reinforce it ever month or so.

Gorilla Tape

 

Honorable mention goes to Gorilla Tape. This is recommended by Ryan Blanck, ExoSym creator and maker of the magic bionic things. He suggested this to me last week so I went out and got some and am putting it to the test in a pair of shoes.

His recent inspection of my athletic tape solution was a thumbs up, but it’s worth mentioning he recommended I try Gorilla Tape if it started to fail. He said this worked better than duct tape. I have one pair of shoes now in Gorilla Tape and will let you know how it goes.

Fit and Material

As a final thought, when trying on the shoes, take a moment to assure the fit is correct. If the ExoSym is busting through the sides from the get go, you might have an issue sooner rather than later. I know this is hard for us clubbies who tend to have wider feet than others who use the ExoSym. However, at the same time, you don’t want them so loose your heal comes out on every step. Be mindful of fit and you can extend the life of your shoes.

Also, mesh shoes will wear through faster than leather, so consider this when buying. Extra reinforcement out the gate on the mesh ones will help. However, I use my athletic tape on all kinds, as even the leather ones have nice soft fabric interior you don’t want to wear away.

I’d love to know what you think. Do you have a trick to keep your ExoSym or AFO from blowing out the sides or toes of your shoes? Please tell me what that is in the comments below for others to see. Thanks so much!

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The Good, Bad and the Ugly – 6 Months of ExoSym

As Jared of Jared’s House of Pain told me in my first days with my ExoSyms, “These devices are perfect for you, when we get your body in the right shape for them.”

He wasn’t kidding. Looking back I can say in all honesty that I’m stronger and am getting the hang of what these babies can do. I had physical therapy for five months after getting them and my PT told me on the last day that she still sees improvement every time I come in. I’m getting stronger and better with every month, though some days it feels like it’s not fast enough for me.

I’ve seen a lot of questions on the Club Foot and ExoSym Facebook pages, as well as questions from folks who’ve read this blog. I thought I’d share answers to some of the most common for you all. Here are some observations of what has transpired and what life with ExoSyms includes:

The Good

I’m stronger. The day I came home with the devices, I couldn’t make it up the steep slope of my friend’s driveway when I stopped by to pick up my kids. I needed her help as without the movement of my ankles, my muscles couldn’t get me up the hill. I do that now so easy without thinking. I still notice I’m getting stronger every day by just staying active.

img_7966New Life. I can go for walks, keep up with the kids, play in the snow (went sledding for three days), hike, play tennis, and stand for longer periods of time than I did before these devices. This is what they’re for. And they work, getting even more valuable every day.

Clothing choices. I was worried I’d have a hard time finding clothes that worked with them. Truth is, because I’d already had small calves, they’re not that thick around the base of my knee and as such fit just fine under work slacks and loose-fit jeans. I’ll also wear them over leggings and add a skirt if I feel like it. In the summer, it’s shorts. They fit fine under my snow pants for winter play. (Individual results may vary. Avoid where prohibited by law.)

Airports. You don’t have to take your shoes off anymore!! I’ve been to several airports in the US and Canada. They see the devices. You get your legs patted down and they wipe them with the explosive detecting swab which they run through the machine, and off you go. Sweet relief from the pain, literally and figuratively, of taking my shoes off every time.

The Bad

Shoe Finding. Damned if it isn’t still hard to find the right pair of shoes. Dominic at Wide Shoes Only shared a number of things we ExoSymers need to keep in mind when purchasing shoes. I shared those tips here. I drool when I see folks posting photos of shoes they’ve found that work for them. My feet aren’t big enough to fit the smallest men’s shoes, which closes many doors for me.

Shoe Life. These babies are tough enough to go to war with soldiers. And they go to war with your shoes, ripping through the sides of them well before you’ve worn out the tread. Spending $175 on shoes every three months is driving me to the crazy. Though I think I’ve found a way to slow down the process. I share some shoe life extension solutions here.

Patience. I put this in the bad category because I’m woefully deficient in this particular character trait. I want to be done and I want to be done now! So, you can imagine the frustration I go through when I struggle up a steep hill, have a sore back because I’d not been paying attention and fell into old walking habits during a hike, fall face first into a foot of snow much to the glee of children around me, etc. You absolutely HAVE to be patient with yourself. Retraining yourself to walk properly (or in my case, learning to walk properly) takes time. Especially when you’ve been doing it wrong for so long. Old habits and all that. Working out, when you would rather poke yourself in the eye, takes discipline. Building muscle takes time. Stretching out tight tendons takes time. Pushing yourself faster than nature can go causes injury and pain. Be patient with yourself. Take your time to build up to your potential. Reward often with chocolate…

The Ugly

Weight Gain. And not from the chocolate rewards. I was shocked when I stepped on a scale a few months after getting the ExoSym and discovered I’d gained four pounds. I’d been walking and working out more. How am I gaining weight? Then it hit me. MUSCLE! Yuppers, you get to gain muscle as a clubbie with ExoSyms. But you have to admit you weigh more, if that’s something you care about. I’ve gained hamstring, thigh and core muscle.

Calf muscles. Bye-bye. I wear my devices all the time, from the time I get up and get dressed to the time I get ready for bed. I’ve not found slippers that work with them, but I imagine there must be something out there that does, like Uggs, which are fine for puttering around the house. So, with virtually no use of my calf muscles, I’ve lost a little mass there. I needed to have the devices adjusted to make up for it. That’s one question I get from folks considering the ExoSym. What happens to my calves? You lose what you don’t use. I consider losing some calf muscle (which is pretty skimpy to start with for a clubbie anyway) a small exchange for gaining mobility.

Looks and Questions. People stare and some will ask questions. I keep an upbeat attitude and tell them these are my exo-skeleton that lets me be bionic. Sometimes folks are just curious. Other times they’re thinking of themselves or others that might benefit and want to know more. It can be uncomfortable when I’m having an introverted kind of day.

Adjustments. You have to budget time and money for adjustments. (While getting them adjusted is a part of the price, getting them and/or yourself to Hanger is where you spend the money.) I’m very fortunate that I live so close to Gig Harbor and Hanger. I can drive in and hang out for a couple of hours while Ryan works his magic to tighten things up and add more padding where padding has worn down. Folks further away send theirs in or fly out for the adjustments. It’s par for the course with these devices and I’m told the longer you have them, the less adjusting you’ll need. As your body strengthens and adjusts, so will your ExoSyms need to be slightly tweeked to match your growth.

And that’s about the long and short of it from the 25,000-foot level. If you have questions or have found other things in your experience you’d like to share, please do add them in the comments below. Thanks!

Life Changing Hike

It’s now been a month since I received my ExoSyms and I can say with utmost certainty that these babies have made a huge difference, and will continue to do so.

This past month I’ve walked thousands of more steps than I used to and done things I wasn’t sure I’d be able to do again.

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At the top of Tunnel Mountain.

Last week I celebrated my 10th anniversary with my husband. We honeymooned in Banff, Alberta, Canada in the Canadian Rockies and have made it a special tradition to go back every five years. On our honeymoon, we did some hiking and I don’t remember it being too terribly rough other than my feet hurt a lot at the end of each day and I limited my hikes to a mile or so each way. My new husband did go on more strenuous hikes alone.

On our fifth anniversary, it was harder. By then I’d had my two kids and my feet hurt a lot more. My husband had to push me to make the hike to the top of Tunnel Mountain in Banff. I remember we only did a few hikes, and they weren’t that long. I spent a lot of time in hot springs and by the pool.

On our 10th anniversary, I blew those two trips away.

Despite only having the ExoSyms three weeks, and knowing full well I was still building muscle, I stood at the bottom of Tunnel Mountain on the first day ready to put these babies to the test. And test it was.

The hike is a little under three miles round trip from where we started, and has an elevation gain of 950 feet. And while some serious hiking guides, sites and apps call it ‘easy,’ I’m here to tell you if an out of shape, sea level dweller in new ExoSyms learning to climb inclines feels this is an “easy” hike, then “hard” would be comparable to burning in hell after being stung by a hive of angry wasps.

For me, inclines are difficult. My glutes, hip flexors, hip abductors, abs and quads (an just about everything else in between) are so very weak from walking different my whole life. Trying to keep my knee bent just enough to dig in with my toes and not snap back and hyper extend for 1.5 miles straight up was rough. I wanted to really bend my knees, which is also wrong. I was sure I’d be suffering knee pain the next day from all the times my knees snapped back.

Add to that when it got really steep my foot would slide out of my shoe randomly, and we had ourselves what we call a challenge.

Luckily I had my trusty walking stick and husband. With breaks to catch my breath, occasional leaning on his arm, the stick for more support, and taking it slow to try to focus on doing it right to save my knees, I made it to the top. It wasn’t pretty, but it was success. And I’m here to tell you every single hike after that was a lot easier.

And for you fashion watchers, notice having small calves means you can wear your ExoSyms under loose fit bootleg cut jeans! Yay for middle age modesty!

I walked all over Banff and on several trails around Banff National Park that week, burning up my activity app. According to it, I walked a total of 31 miles in six days. I’d say that’s a bump up from two miles a day.

I must admit though, the ability to wake up and stumble like a Walking Dead extra to the hot tub every morning was a big help. A good 20-minute stretch in the hot tub, 20 minutes swimming in the pool, another 10 in the hot tub then a hot shower worked out the kinks and any residual stiffness worked out in the first half mile of the hike the next day. I wonder if my insurance would accept a prescription for a hot tub…

What I noticed during all of this was:

  • My muscles hurt, but they hurt in different places each day, illustrating that I was building muscle, not seriously hurting myself.
  • I stood longer, not feeling the need to sit down as much.
  • My feet did start to hurt, but not like they used to and it took much longer before they hurt.
  • I really need true hiking boots as the lift in my left shoe puts my heel too close to the top, making it easier for my shoe to slip off on inclines.
  • Changing up the types of hikes each day helped build endurance without hurting any one muscle group.
  • I felt a lot stronger on the last day. I actually got stronger! On vacation. Without a gym!
  • Despite several hyperextensions, I didn’t hurt my knees.

It was a massive personal achievement for me to be able to enjoy the Canadian Rockies. I wish we’d had more days to hit more trails. I’ll just have to start hitting the Cascades here in Washington as summer begins to wind down.

The icing on the cake was coming into the Hanger Clinic the next Monday for my sixth visit. After working on a few things with me, Jared commented he noticed a big change. I had gotten stronger and it showed. I’m on the right track.

If only I could get excited about this working out in a gym thing. So not my thing.

IMG_7331
Chairs placed in random and sometimes remote areas around the Canadian National Parks this year to celebrate 125 years. We found these at a secluded overlook of Howse Pass, miles from the road. Perfect spot to have a quiet moment on our actual anniversary day.  

UPDATED: The Mighty Shoe Dilemma

UPDATED: Added more input from Ryan in February 2017.

Almost anyone who has had an ExoSym will readily tell you, finding the right pair of shoes is a long and sometimes financially agonizing process. Anyone with painful degenerative foot problems will laugh through their tears while wisecracking “tell me something I don’t know.”

I’ve been on the search for the perfect comfy shoes for close to 20 years. As my feet hurt and further degenerate, this perfect shoe became more and more elusive. In all that time, I didn’t find one person – doctor, podiatrist, shoe sales person – anyone who could tell me what I needed to look for in a perfect shoe. Until now.

This past weekend, I took a trip to Wide Shoes Only in Renton. There I met Dominic, the shoe angel. The son of cobblers who has inherited the store and now runs it as president, Dominic not only knows shoes, he knows foot issues and what shoes are best for your situation. And he knows the ExoSym as well as other AFOs.

In fifteen minutes he’d educated me on what my weak, unstable club feet need and what the ExoSym requires to perform at full potential. He then showed me how to look for those things in every shoe I considered.

Stability

Dominic told me the ExoSym, and other AFOs, require a stable shoe. That means it is stiff in the bottom, not squishy to allow rolling right or left. The ExoSym doesn’t allow for the ankle to roll, so a shoe that does that will throw you off balance and be “like walking on a soft mattress,” Dominic said.

SquishyShoe
See how I can squish it with my fingers? Not good for ExoSym.

For example, New Balance has a number of shoes with roll bar technology as well as newer technology, not allowing the heal to roll in either direction. The shoes the Hanger Clinic gives out with ExoSyms (New Balance 1540) includes this technology.

RollBarTech
Roll bar technology.

When I shared this information with Ryan Blanck, creator of the ExoSym, he agreed to a point. However, the design of the ExoSym, unlike other AFOs, he said could handle a little squish in the sole. He suggested trying to twist the shoe in your hands (one hand on the toe and one on the heal and turning your hands in opposite directions). If it twists easily, don’t buy it. He said look for a solid sole (not the new trendy style of flexible soles pictured below).

skechers-sneaker
These shoes have the worst kind of soles for your ExoSym. Avoid these types of sectioned soles.

Both Ryan and Dominic agree that you need a stiff forward part of the sole. A shoe that doesn’t bend so easily at the ball of the foot will provide more stability as your foot doesn’t bend at all in the ExoSym.

Width

Shoes come in all kinds of verbiage for width – wide, extra wide, extra extra wide, 2E, 4E, 6E, W, WW, etc. Generally, these are determined from the base of the heal up to the ankle. Imagine the letter V with the point at the bottom gone. The wider the V shape between the sides of the heel and the top of the shoe is used to determine width. It’s not simply horizontal width, Dominic explained. Every shoe manufacturer has their preferred width measurement and quite honestly, said Dominic, the width designation doesn’t matter anywhere near as much as the “last.”

Last

Drawn from the old cobbler word for the “last block,” or the block of wood that was whittled from drawings of a customer’s foot then used to design the shoe around, today’s “last” is the volume inside a shoe.

WideShoePhilos
This is on the wall in two places at Wide Shoes Only.

An extra extra wide in one shoe, for instance, doesn’t have as much volume as an extra wide in another shoe.

TwoShoes
The one on the left is a W while the one on the right is a WW. Yet, clearly, the one on the left is physically wider. Beware of only looking at width designation. Look at the last. (Neither of these shoes work with the ExoSym, however…)

I discovered for me I needed more last, in terms of physical width for my wide foot plus the ExoSym, but also the cone (top of the foot) needs to be higher than typical or the pressure down on my foot causes my toes to fall asleep. This is what the New Balance 1540s I got from the clinic were doing – too tight and putting my toes to sleep.

With Dominic I found three amazing shoes. A (sadly, this is the story of my life) discontinued New Balance 1123, in size 5 ½ 4E. It allows me to put in a little extra height in the right and both feet fit snug and with circulation (we ask so little at this point, don’t we?). And they discontinued it for the 1540 that hurts my feet. Boooo!

He also found me a Cambrian casual sandle that fit the ExoSym and had good stability for a sandal (hello summer) and a gorgeous Drew Geneva dress shoe in taupe that is so very comfortable with soft leather uppers and a stiff sole for support. Extra Wide Shoes can order any size and even some shoes they don’t have in stock for you to try.

In the end it was hard to swallow the almost $375 for three pairs of shoes. That was, until I went home and cleared out all the shoes that don’t fit any longer or hurt my feet. For years I spent $30-$50 a pop on New Balance shoes that felt amazing, for about two months. They didn’t have the stability, so they broke down for me once they were broken in. And they hardly look worn.

This here represents $1,000 wasted on shoes. Suddenly, $375 for shoes sounds very reasonable. With the right last, they’ll last.

PileOshoes
This is $1,000 of shoes, all of which don’t fit with the ExoSym or they hurt my feet. Luckily, many can go to my kids for them to grow into while the rest get donated.

So, the moral of my story is, do your research, visit Wide Shoes Only when in Washington for your ExoSyms (seriously, make this a requirement because no one I’ve met, not even the mighty Ryan, knows shoes like Dominic), and understand that one person’s perfect shoe may not be perfect for you. You can only try them on to know, and it’s best to try them on with someone who understands your condition and knows shoes. Like Dominic!

And on a final note, I’ve started a page here on Going Bionic dedicated to shoes and shoe tips, so as I learn things from trial and error, advice or tips from others, we can all find them in one place. May the odds be ever in your favor as you hunt for your perfect shoes.

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.

FlexorStretch
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.

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.

IMG_7153
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.

IMG_7107
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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