AFOs Part 3: Accept failure as part of the process.
Mom taught us about plans. Lists, and plans. “Make a plan, and then work the plan” goes the adage. I had a plan, a mission statement –
be on DWTS find a pair of AFOs that work for me.
Now, I reasoned, I would make a list of every possible, person, practice, company and organization that could help me. I would find examples from others, I would scour the interweb. I would watch YouTube videos and read message boards. I would find blogs, and email people. I had a plan, and I was going to work it!
I started by emailing my physiotherapist. She had previously referred me to a place in an effort
like so many before her to get me to wear the braces I obviously needed. I wasn’t ready then, but this time around I phoned the company she had suggested here in Ottawa, and made an appointment for the next week. I checked out their Facebook page, and found pictures of pretty cool looking prosthesis. Prosthetic legs that looked like legit tattoos! Their stuff looked edgy, so logically I thought they catered to a younger demographic. Score!
I then set out to do the research. I found companies, and testimonials, and YouTube demonstrations. I printed out pictures, and bookmarked websites. I sifted through lots of info, some of it helpful, some not so much.
Here are just a few of the things I found:
I found a company in Las Vegas, Nevada that designed something called a Helios brace. At $12,000 a pair, I was intrigued but skeptical. I am blessed that I could find that kind of funding if it became apparent that they really were the best option for me. But, there were a few things that gave me pause. Nobody can fit, make, or repair these braces except for the company that designs them. I would have to spend a week in sin city to have them fitted (wait, maybe that’s a perk?), and would then have to ship them to and fro should I need them modified in the future. I did however; find an interesting article about a young woman’s experience getting the Helios braces.
WalkOn by Ottobock
I found these by wading through message boards for groups discussing Charcot-Marie Tooth (CMT). I realized part-way through my search that I got much better info from these sites, than from any of the CIDP/GBS groups. Just typing in “AFO” or “ankle foot orthotic” was also pretty useless.
The AFO Light seems to be what people talk about when they refer to a carbon-fibre AFO. Carbon fibre seems to be “the way of the future” in terms of AFOs, but if you ask me they don’t look terribly different from the plastic ones I have sitting in my closet. But I will keep an open mind. In this vein, this was another I found. Looks bulky, but purports to fit easily into shoes.
Armed with my print outs and talking points, I walked into the clinic for my appointment. I explained my condition, relayed my experience with my AFOs until that point, and I
passionately told my DWTS story. The fitter nodded sympathetically, and when I left, with a promise from her to call me once she had done some research and assembled some examples for me to try, I felt dare I say, hopeful.
Fast forward two weeks, and I went in to see what she had. I was presented with several different options, all kind of the same but also all kind of different. I began the process of trying them on. To my disappointment they were not all the correct size, and most were only for the right foot/leg. How was I supposed to get a sense of what would work if they didn’t even fit and on both legs?
Strike 1 They all felt awkward and no better than what I had sitting at home. The person I saw seemed fixated on cost, even though I had expressed several times that cost concerned me less than fit, by far.
I don’t know if devastated is the right word (feels a little heavy-handed, don’t you think?), but I was definitely disappointed.
The Step-smart brace, that I had specifically requested hadn’t even been ordered. The explanation given was that she didn’t have much experience with the Step-smart so she thought what was the point? The point, I thought? The point was that I specifically asked about them!
She agreed to order them and I agreed to come back. I didn’t express to her my disappointment in the poor selection of improperly fitting options, I should have. But I didn’t.
I found it difficult to communicate with her in a meaningful way, not a problem I usually have. This didn’t feel good. An off day? I wondered.
Another three weeks, and I went in to try the Step-smart. It turns out, she told me, that they had been ordered and then sold before I was called to come in to try them on.
Originally I had been told that I would be able to take whatever pair I wanted to try home before committing to the purchase. All of a sudden, I found myself having to persuade her to let me leave with them. “But we won’t be able to re-sell them” was the reasoning she provided. I finally was able to convince her to let me take them.
I walked in them, and I wore them to the dog park, twice. They did fit into my shoes (although snugly), they were comfortable enough, and they were low profile. BUT they didn’t have enough spring to completely correct the foot drop in my right foot. As I walked, you could still hear my right foot slap the ground.
I was frustrated, and disappointed, and the thought of going back to the office for more fittings made me cringe. I was done. I decided that I wasn’t going to spend my money there. It had taken more than a month, and I felt like I wasn’t much further ahead. I needed to regroup. So I returned them, and mentioned that I’d be in touch if I changed my mind. I would NOT be in touch, I thought. I wonder if they resold them? *smirk*
Just so you know…I am consciously choosing NOT to name this company. Maybe it was a miscommunication, a misunderstanding, or maybe they were indeed incompetent. Anyway, I’m choosing not to call them out. I did not tell them I was unhappy with the service, I just decided to take my business elsewhere. I didn’t give them a chance to “fix it” so publicly slamming them, doesn’t seem all together kosher. I share this story, only as motivation to others not to give up…even when sitting at home and being bitter would be way easier.
Back the drawing board.