AFOs

[Suzannah]

Hi all,

So I met with an orthotist person, and he said I need an AFO for my right leg. It's the kind that goes all the way under the foot, and all the way up the back of the calf and velcros below the knee. Due to spasticity issues, my foot rolls under and turns in, so I end up walking on the side of my foot.

Anybody want to tell me about their AFOs? Like ... do you have them for one or both legs? How much of the day do you wear them? Can you drive in them? Climb stairs? What do you do about shoes? And socks? How did you get used to wearing them in public? Do they hurt? Do they help?

I'm trying to figure out the logistics of how this is going to work. I'm in and out of shoes 5-6 times a day and am barefoot most of the time, except when at work. I hate socks. I hate shoes! I live in really hot South Texas! And I live upstairs. And I need to dress decently for work. And I'm nervous about "announcing" my disorder (HSP) since up till now I've been able to keep it relatively on the DL. My friends/family know, but my clients/teammates/classmates don't.

I know these really are small issues in the greater scheme of things, and I'll get over 'em. But if anybody has any advice, I'd love to hear it!

Thanks,
--Suzannah

 

[Vincent]

I wear AFOs on both legs for foot drop. Got the 1st one 2 years ago, the second one a couple of months ago. I wear mine all day, They help me walk more efficiently and taking them on and off is a bit of a production. I drive completely normal with a bit of getting used to. Unless you wear really skinny pants they are basically invisible under your clothes. Skirts can be an issue. As far as shoes go pick a heel height and stick with it, any higher and they pitch you foreward, any lower and they pitch you backward. Actually going to a lower heel can be accommodated by putting a wedge under the heel of the AFO. As far as socks go I use soccer socks. They usually are made of coolmax, so they wick moisture and are tall enough to fold over the top of the brace. I hate plastic up against bare skin. If they aren't working for you, take them back to have them adjusted. They should make your life easier not harder. And if your orthotist complains, tell him this is coming from someone who worked the past 30 years making artificial limbs and braces.
Vincent

 

[Trixie80]

I use a dictus brace AFO on my tight foot. In order for it to work it has to be attached to a shoe so i wear shoes all day. I find running shoes to be the best, under armour are the moat comfy.

 

[GregK]

Hi Suzannah,
I know of two styles of AFOs: clunky white plastic ones and somewhat less clunky carbon-fiber ones. I have the latter; drop "toe-off AFO" into goggle to see.

I have them for foot drop and initially only had one on my left foot. When the foot drop kicked in on my right foot I got one for that side too. I wear them full time if I'm going to be walking about, I'd trip otherwise. I quite eagerly shed them when I get home and hit my recliner.

Socks are no issue except in that they should be high enough to be a buffer between the upper support and leg as the straps can chafe.

Shoes _are_ an issue as these take up space in the shoe. Some folks seem to have no issues, some folks go up a shoe size. I have had poor luck finding shoes that fit and usually wear mine with a pair of over sized hiking shoes. Out of all existing my shoes I found two pair that sort of work, but for a limited wear

Driving with an AFO on the right foot will be an issue. These things are designed to hold the foot in a fixed position which means that pushing the gas pedal by extending your foot is impossible.

This fixed position also means that there is no "push off" when using stairs.

 

[Suzannah]

Hi, thanks for the responses.

Vincent, it's funny that you mention skirts, because that is precisely my problem. All of my work clothes are knee length skirts that I have traditionally worn with sandals (which I can't safely wear anymore). Other than my tennis shoes, I don't even have any closed shoes. I live in a pretty causal area, because it is so darn hot. It is 90-105 degrees a pretty good chunk of the year. I am going to need to be able to wear shorts and skirts, but am having trouble envisioning that with knee socks for the rest of my life. And thanks for the advise about the adjustments. I'm a little worried about that. I had another brace made originally (a UCLB or something like that), and it cut the heck out of my foot despite repeated adjustments.

Trixie, do you still work? If so, do you wear your tennis shoes with your work clothes?

GregK, I tried out one of the carbon fiber ones at physical therapy and liked it, but the orthotist guy said no way. He said that my spasticity level would overwhelm it and break it. So clunky one it is. Good to know about driving. Since I can't flex my foot very well, I have been driving with a completely pointed foot and mostly straight leg and just shifting my whole leg to move my foot from pedal to pedal (I didn't even know until just recently that that wasn't how everybody else drives!) Am worried about driving and stairs, since I have a lot of both.

Thanks for the replies!

 

[azgirl]

My afo is the same as you described. It helped me tremendously in the beginning when I could still easily walk a mile or more. I found that my gait was better with it and a walking stick. I got a pair of Brooks shoes one size bigger that work with the brace.

I could not have driven with it on my right foot.

Now, it's a year later and I mostly go barefoot and use a walker. I did get good use out of the brace before, though. Much safer when dealing with foot drop.

 

[AKmom]

I got one on the right foot in 2010 and on the left in 2011. I had to buy tennis shoes that were extra wide. My afos are bulky and black and go up both sides of my legs with two Velcro straps to attatch. They have rods down at the anles that attach the molded bottom which had to be fitted for my feet. They helped with me not tripping so much or stubbing my toes on the ground. As for driving, at the time we only had one car and my husband was working out of the home, so he drove me everywhere. Now he is no longer working out of the house and we purchased an accessible van for me. This van has come with hand controls, but I am not using them yet. I do not wear my afos as often. I am finding that when i do wear them, i fatigue faster in the legs to the point of not being able to lift them off the ground, thus shuffling. When I drive, its just to do little errands and I certainly do not have a led foot! The gas peddle seems a little difficult to push down. I think soon I will be using the hand controls.

 

[Trixie80]

I no longer work in an office but wear my runners with all of my outfits, however they are mostly casual. Tights/leggings and a loose tank or blouse. I get a lot of compliments on my shoes. They are hot pink and black and the second pair is blue orange and gray so i try to coordinate my outfits with the bright colours. I was hesitant at first about wearing runners all the time, especially with dress clothes but then i figures it was better than falling and ending up with my skirts around my waste. I am still bumbed that i cant wear most of my shoes and boots.

 

[Mike in Maine]

Suzannah,
Great question, I'm also getting fitted for one at the end of the month. Looking forward to hear how your fitting goes and what to expect



Mike

 

[texastracy]

I didn't have a lot of success with mine. Hard to find shoes - have tiny feet, and it made my foot sweat so bad. I had better luck wearing my tall boots and leggings. They were new and had a stiff foot area. Now I have a chair and wear what I want.

 

[Suzannah]

For those of you who wear/have worn them, did you wear them all the time, even at home? Or only when you were out in the world?

When I was having the cast made the other day, the orthotist guy gave me a choice of colors and designs. I was going to pick boring white so as to minimize attention. But then I decided that wearing a leg brace at age 35 is going to draw attention anyway because it's too hot in Texas to try to hide it all the time. So I might as well have an interesting one. So I picked a purple camo design. Why not?

And this makes me laugh ... I've been doing lots of internet searching lately to try to find some dress shoes that might work. When I log into this site on my tablet (which doesn't have adblock), the ads are all now targeted towards ugly diabetic and orthopedic shoes. So on this site, there are ugly shoes, shoes shoes, everywhere that I look. Thanks, Google.

 

[Nikki J]

Suzannah the ugly shoe issue is a big one for most women. My sister struggled with it. So did Elaine. We emailed about it with pictures! And I remember emailing her when I got my first ugly pair.
You might enjoy reading this
ISSUU - The Vain Girls Guide to ALS by Carla Zilbersmith
But I hope the " bright side " of being able to wear the cute shoes again when in a chair full time does not apply to you!

 

[Gembead]

Thanks Nikki, had a read and a good laugh at some of her suggestions.
Love Gem

 

[TxRR]

Get a Dynamic AFO. It's flexible and fits right into any shoe. It pivots at the ankle so it's easy to drive with.

 

[Suzannah]

Hi TxRR, thanks for the suggestion! I really wanted that kind, and my physical therapist lent me one to try out. Unfortunately, the orthotist guy said no way. He said my spasticity level is too strong for a carbon fiber type brace and that I would eventually break it if I tried to use one. Also, my foot rolls to the side so badly that I need something around it to keep it from doing it. Too bad, because that would have made things easier.