The 2.5 Year Update

While it’s been a bit since I’ve checked in and updated about bionic life, please file this under the “no news is good news” category.

In the past two years since getting my ExoSyms, my physical abilities have been fabulous. I can still do so much more than I’ve been able to do in years. Here’s a look at just a few things:

• Walked all over Disneyland, all day long, enduring standing in lines a million times better than I have ever been able to in the past.
• Walked an average of 7-10 miles each day of a five-day vacation to London to visit a fellow bionic ExoSym friend.
• Camped several times and can keep up with the Girl Scout Troop I lead.
• Became an archery instructor and teach archery to Girl Scouts and other youth groups.
• Walked all over my beloved red rock country of Utah, again, this time going off trail in Arches for the first time!
• Gone on multiple snowy mountain visits to play in the snow with the kids, and can keep up with the best of them.
• Continued to attend the annual Heli-Expo, the helicopter industry convention, walking 15,000+ steps a day for four days (tons more than I’ve ever been able to do) and my feet don’t hurt a bit! My back, yes – that’s cement flooring. But my feet are great!
• Took on Emerald City Comic Con (bigger than Heli-Expo).
• Walked all over the Oregon Coast in the sand on vacation.
• Walked with my Girl Scout troop in the Fourth of July Parade. Twice.
• Gone our countless hikes.
• Logged 10-15,000+ steps a day for a two week vacation in San Diego – zoo, safari park, museums, beaches, and old town.

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  Disney California Adventure

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  London

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  Cliffs of Dover

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  Girl Scout Camp

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  Hiking

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  Bike Riding

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  Arches

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  5K with Ryan and Lucy

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  With the Winter Soldier at Comic Con

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  Learning to teach archery.

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  Teaching archery.

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  Snow sports.

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  Double fisting it at Heli-Expo.

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  Whistler

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  Flying airplanes.

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  Disney

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  Horseback Riding.

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  Walking the beaches.

That’s a lot of stuff, but one thing has become abundantly clear through it all: You. Must. Keep. Up. Your. Exercises. As warned by Ryan, and somewhat forgotten about by many: https://www.facebook.com/groups/exosym/permalink/2131046657008882/

Remembering to Exercise

I’d been bad. There were weeks or months when I’d be at my desk working all day, not getting any exercise. For me, it wasn’t enough to just go on vacation or walk from time to time. Your core, like everything else, gets weak if you don’t work it. Oh, and your sorry middle age body gains weight, and not the good “it’s all muscle” kind.

Noticing I wasn’t as good as I’d once become in my ExoSym during the early days, things like rough ground or steep inclines got hard, I resolved to get this sorry butt back into shape. And lose the extra “baggage,” so to speak.

I started by creating a list of exercises–a mixture of those I got from the Hanger Clinic when I first got my ExoSym and some special exercises from my physical therapist designed to strengthen my very weak right hip flexor and abductor due to my birth defect and subsequent surgeries. Knowing I can’t stand to do repetitious gym-like work for more than 20 minutes a day, I broke them into fine doable workouts, Day 1, Day 2, Day 3, Day 4, and Day 5. Days 1-4 work different muscle groups, and Day 5 is a lot of stretches and yoga moves.

No longer paying for gym membership, I took inventory. I had the exercise ball. I didn’t have a kettle bell or any resistance bands. A quick trip to the store and two-day wait for Mr. Amazon Delivery Dude and I was set.

Pole for pull ups, ball, resistance band (with handy door stopper so I can use the office door as an anchor), yoga mat, and kettle ball. That’s it.

Each morning I do one of the three exercise sets. They take about 20 or so minutes depending on how distracted I get from my four-legged moral support network that sees me being on the floor as a sign I want to be their personal masseuse.

Then I go for a 1.5 mile walk. I live in a hilly neighborhood, so these aren’t strolls in the park. I try to keep the beat of the dance music in my headphones and am usually rewarded with some good calorie burn. My walks typically take about 25-30 minutes. Once home, it’s a protein-filled breakfast to start my day.

Granted, I need to get up an hour earlier to make this routine happen before I have to get to the rest of my day, but I’m feeling more energetic throughout the day since I started this. I’m tracking my progress on the MyFitnessPal app, which also suggests caloric intake for intended flabby stomach and butt flesh loss (my term, not theirs) as well as portions of carbs, protein, and fat to hit my goal. I’m also drinking a ton of water and have cut out caffeine and, for the most part, alcohol. Believe it or not, the caffeine was not hard (as I’m getting energy boost from the exercise and better nutrition). Keeping the drinks to a glass of wine every few days is not so bad. My body doesn’t seem to like me drinking more than that now anyway, which is a good thing, right?

I walk every day, only taking one to two days off a week from the morning exercises.

In my first week, I lost about 2 pounds and am finding it easier to get up those hills only 8 days into the routine!

ExoSym Integrity

One thing we all ask is “how long will this last before I need to get another one?” Since I’m not running, jumping, doing cross fit, lifting incredible amounts of weight or otherwise putting lots of strain on them, my devices are as good as new at 2.5 years of age. Other than a couple of tweeks to the foam padding in the first year, they’ve needed nothing more than my ever-lasting devotion. I still wear them from the time I get up until I get into my comfies to catch up on Game of Thrones at night. My feet never hurt. They’re worth every last penny (which I understand I’ll be shelling out when they do wear out as insurance companies have gotten wise to the ExoSym cost and have started refusing to pay.)

They really have changed my life, and the only thing standing between me and perfect fitness is, well, me.

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How to Extending Shoe Life

Public 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

My 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.

UPDATE: Gorilla Tape for the WIN! I only use this now on my shoes and have had no wear through. The soles wear out from use and the sides are no worse for wear on the inside due to the Gorilla Tape!!

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!

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.

New 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.

At the top of Tunnel Mountain.

Last week I celebrated my 10^th 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 10^th 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.

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.

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.

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).

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.

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.

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.

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.