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!


2 thoughts on “The Good, Bad and the Ugly – 6 Months of ExoSym

  1. Over a year later, how is it going?

    Thank you for posting this, it’s really been the most honest and full story about these braces I could find. I was torn up in the Army, and finally, 20+ years later, a smart guy at VA heard about these and is hooking me up. I had asked for an amputation, he said, let’s try this, instead. I;m hoping. Again, thank you for doing this.

    Jenn Whiting


    1. Hi Jenn,

      It’s actually been a couple of years now and these things are great. As long as I keep up with core strength, I’m golden. I notice in the winter when I’m not working out or being as active then go on a romp in the snow or long walk my back will be a bit sore. It’s because my core gets weak. I don’t go anywhere without them now and am pain free in my feet and ankles.


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