Leg Brace

[KJRS]

I was measured today for bilateral ankle foot orthodics (leg braces) which will counteract the foot drop I'm experiencing due to ALS. Is anyone using these -- and what ae your opinions of them?

I won't have the braces for another week, but the models I was shown today seemed bulkier and covered more of the leg than I had anticipated. There will not be a joint in the ankle, so I'm envisioning a clomping, Frankenstein-like walk -- charming, I'm sure.

I'd love to hear from someone who has these and has discovered that they are helpful and valuable -- and that they prolonged the time during which walking was possible. (Actually, I'd love to hear from anyone about these, even if your experience wasn't positive.)

Thanks!

[Boots]

Hello-my husband picked up his AFO's a couple of weeks ago. His most severe foot drop is on his left side but was starting to feel a little of the other side too. His do have a hinge at the ankle to give him a little more movement. Yes his are also bigger than he had expected. He is just using them when he feels he needs them right now depending on what he is doing each day and getting used to them a little at a time. He mainly uses them right now when he was out in the pasture (helps keep him from stubbing toe on grass clumps, etc) or on un-even terrain. He did admit they helped him to have a more normal gait and I think that benefits your muscles/joints by working them the correct way. He didn't seem to kick out so bad since he wasn't having to lift his leg higher each step to compensate for the footdrop. Hope this helps and that you have good results with yours. Boots

[Al]

Good and timely question as I was given a prescription on Tues for the same thing. Welcome KJRS to the forum. I haven't got mine yet either but was told that it would be a little thinner at the ankle to allow some movement. I was also told not to use it all the time because of the use it or lose it theory. The doc recommended it for uneven ground walking and for going longer distances. It'll take about 10 days to 2 weeks to get mine and "ll let you know how it goes. AL.

[MaggyQ]

I may have mentioned before that I've been using an AFO on my right leg since last
September. I've found it to be very helpful and not uncomfortable. I never leave the house without wearing it. I do take it off when I get home, which helps to stretch out the calf.

Mine is not hinged at the ankle. It is constructed of white milky looking plastic. There is a ball on the heel and the portion under the foot goes up to the ball of my foot. The front is basically open. The back is curved around my calf. It extends up to a few inches below the knee and is secured with a velcro strap across the front at the top.

I don't think the bilateral braces should cause a "Frankenstein" kind of walking feeling.
The AFO gives a lot of support, even to the back of the calf, and actually improves the gait. It imparts a sense of security, at least for me.

One of my concerns at the outset was the type of shoe into which the AFO would fit.
I didn't want to be in a position to wear tennis shoes or big clodhopper looking things with my business suits. ("Vanity, thy name is woman.") Happily, I've found several flat shoes that work and don't look too bad with dresses or skirts.

These are the ones that saved the day for me:

http://www.naturalizer.com/shop_online/item_detl.asp?CID=casual&PID=felipe&variant_id=875N67&Size=%25%25%25%2D%25

They come in black and brown, are very light, and stay on the foot really well, even with the AFO. I bought them in wide instead of medium, just in case the brace took up
too much room, and they're perfect.

Perhaps this find will help someone else.:)

[rickmcmahan]

I just received one of these braces for my right foot drop. It was custom molded to fit my calf and foot. But to me it is too big. Expecially around the ankle area. You can almost stick your finger between the brace and my ankle on both sides. Is this a normal fit? I assumed a "custom molded" brace would fit like a glove. This extra width makes it hard to find a shoe to fit. I wear a size 11. But it takes a size 14 to fit the brace! How can my good leg/foot which is a size 11 handle the size of a size 14 shoe? You cannot buy mixed shoe sizes at the shoe store. So how do you handle the difference in the shoe size to address the needs for the brace to fit? Any help will be appreciated. Hope you have a great day. Rick

[MaggyQ]

Rick, if the brace doesn't fit properly, you should go back to the orthotist.
They can be reshaped.

[Countrycouple]

Mom got her brace a few months ago.. At first she didn't want to wear it, cuz it was obvious she was wearing it.. and then she started to wear it..and it bothered her to wear it.. I would take her to doctor's appointments, and she would stop.. take it out of a bag.. and put it on.. But she is wearing it alot more often now.. They are now talking about measuring her up for a full leg brace.. Everything helps in braces.. The hard part is.. It took her awhile to get over her pride to use it.. But now that she is over it.. she walks a little easier..
Mike

[MarkNH]

I've had one for severe left foot drop for a couple of years. I've tried it twice and within hours lost all strength in that ankle absolutely and completely. so I won't use it. I fall more but am able to retain that 3% of the strength I have in that ankle. Just me...don't follow my lead, try it and see what you think.
Mark

[KJRS]

Hi, all --

About two weeks ago I asked about AFOs. I got them last week and want to report that (so far, anyway) I love them. I've been able to do two 1-mile walks and a couple hours of gardening -- two things that had become too difficult and tiring for me, even with a walker.

I found some shoes that fit, but I'm also going to check out MaggyQ's Naturalizer shoes -- they look like a better option for work than the ones I found (which will be fine with trousers but less good with skirts).

I leave tomorrow for a week-long trip to Glacier National Park. Before the AFOs, I was planning to be content to view the grandeur from a car or a lodge porch -- now I have some hope of doing a few of the shorter trails. I'll let you know how it goes.

Sincere and heartfelt thanks to all of you who shared your stories on AFOs.

KJRS

[MaggyQ]

I just received one of these braces for my right foot drop. It was custom molded to fit my calf and foot. But to me it is too big. Expecially around the ankle area. You can almost stick your finger between the brace and my ankle on both sides. Is this a normal fit? I assumed a "custom molded" brace would fit like a glove. This extra width makes it hard to find a shoe to fit. I wear a size 11. But it takes a size 14 to fit the brace! How can my good leg/foot which is a size 11 handle the size of a size 14 shoe? You cannot buy mixed shoe sizes at the shoe store. So how do you handle the difference in the shoe size to address the needs for the brace to fit? Any help will be appreciated. Hope you have a great day. Rick


Rick, today I was talking with a guy who is a shoe sales department manager at Macy's.
He's been selling shoes for several decades and used to work for Nordstrom as well as the Walking Shoes store and similar outlets. He told me that Nordstrom has a policy whereby they would sell to a person with a handicap two different size shoes. Basically,
they make 100 % on each pair of shoes. Selling one of two different sizes just means they break even on the transaction with the odd mismatched pair being essentially tossed. So you might check a Nordstrom to see whether this would help. Beats buying 2 pairs of the same shoes. The only drawback is that Nordstrom carries higher end products in the first place so your net savings might not be so great, depending upon what kind of shoes you were contemplating.

[MarciaA]

I haven't posted for a while, but HAD to tell all of you how much my sister, Kathy, loves her leg braces! I talked to her on the phone the other day and I hadn't heard her sound that happy in a very long time! I could picture her beautiful face just beaming on the other end of the line as she told me about the braces! She was all set to hate them before she actually had them. But now that she has them, she's been able to take long walks that she couldn't take before. She didn't even have to use her walker (just a cane) when on these walks! Before the braces, it was a huge struggle for her to walk a distance even with her walker...but now...just try and stop her! :-) The only gripe she's told me is that they're sort of hot. Evidently she needs to wear longer socks with them (I suppose so that the plastic doesn't irritate her legs) plus the plastic itself is hot. Any suggestions or things that any of you have tried that help with this?

Marcia

[Lisa Lane]

When I wore my leg brace I bought mole skin in the foot section of the drug store. and lined the back of my brace with it. I took an exacto knife and cut out the vent holes to match my ones in the brace. This allowed me to wear my brace without long socks. I just used the no show socks with my tennis shoes and didn't wear any with my sandles. It did start to wear a blister on my ankle once so I just used large bandaids on that spot. We went to Thialand in May and the last thing I wanted to wear was a long sock. I hope this helps.
Lisa

[Judith]

I got a prescription for a leg brace. I went to the orthotist last week and he had one that fit me, but it didn't seem to make any difference in the way I walked.
He said he didn't think I had "drop foot", cuz I can move my foot up and down.
He thought the problem was in my hip. (I swing out my hip, so I won't trip over my toes.)
He said he would do more research on ALS. I gave him my neuro's phone #.
Has anyone had similar responses with their orthotist?
I am falling more frequently. I wonder if a custom made AFO would work any better than the one he had me try.

Judith

[jimercat]

Ron Schaffer (North Carolina I think), a pALS, has designed a leg brace. He is an engineer with ALS. You can look it up on ALSTDF forum for more info and the write up in the paper.

I can't get the link to work right now. Maybe that will be helpful. It seems someone with the disease would know more about it I suppose.

[sharonca]

Hi Judith - I got my AFO's (carbon fiber) at Coachella Valley Orthopedic in Palm Desert. I LOVE THEM! They are like second skin to me. Walked great with them right away and drove with them for 8 months. Of course, I had to wears socks and tennis shoes through the summer but didn't fall much. I wear them with Simple brand tennis shoes. Of course I never wore tennis shoes or anything except sandals in the desert heat and even in the winter. Oh well. Better clunky shoes than a clunk in the face. My brand of AFOs is Toe-Off - you can google it to get a picture.
Sharonca

[ZenArcher]

I think I have the same ones sharonca does. When I went they wanted to fit me with a molded brace similar to what some of you mention but I told them no. I had met a PALS with leg onset that had been wearing AFOs for 3 years and he recommended these.

http://www.ottobockus.com/products/shelf_orthotics/lower_extremity_28u11.asp

[tmasters]

I tried the carbon fiber type but they rubbed hard against my ankle bone. These are off-the shelf items and they can't be customized. Bending them compromises the structural integrity of the material.

So I ended up with the low-tech white plastic AFOs instead.

They're heavier and uncomfortable. But I still love 'em! The ability to actually walk again instead of whatever it was I was doing before is amazing! I really didn't expect much. I know it's all in my head, but I actually feel better all over as I don't focus so much on my arm weakness, etc. :smile: The euphoria will probably wear off but for now I'm enjoying it.

I recommend for anyone out there with early walking difficulties to try an AFO leg brace. You can get a prescription from your Physical Therapist. Go with the carbon-fiber type if you can, but do something.

-Tom

[sharonca]

Nope, mine are different. I don't know how to add a picture - darn. The web site I found shows great pictures.

It is www.campscandinavia.se/pdf/toeleafeng.pdf

What I think makes mine so comfortable is that it rests on the shin bone and is padded. Nothing touches the ankle.

Sharonca

[sharonca]

tried to post a reply with a connection to a picture of the Toe-Off AFOs I use. Of course, it is being held up.

My AFOs are different.

Sharonca

[PDaddy]

I have a "Walk-On" model for my left leg, but I don't wear if often - I am still wearing shorts and sandals - its 90F here!

[Judith]

Sharonca,
I went to the website you posted and that brace is entirley different that the one the Orthotist had me try.
I went to "Desert Prosethics and Orthotics Group". Their main office is in Coachella Valley.
Is this the one you went to?
I'm going to email the Orthotist back and ask him about the "toe off" brace.
I'll include the camp scandanavia website.

Judith

[MtPockets]

Wow, all of these are so much better than the clumsily one I have. Thanks for the info. I do not walk anymore. so I do not need it now. I just wish I had known about these before.

[sharonca]

Judith - I went to Coachella Valley Orthopedic - it is on Hwy 111 heading east past Monterey right before you get to the KFC! 760-345-4779.

They didn't offer any other kind and I am so grateful.

MtPockets - I have been told that wearing this type of AFO helps with transfers since your foot and ankle are locked in place.

My friends say I'm just overly afraid of falling. Yep, that's me. One big scaredy cat. Don't care - how hot it is. I was hooked on them right away. Just to walk almost normal - I was practically skipping.

Sharonca

[Judith]

Sharonca,

Thanks for the info. I will try to get my PCP to give me another prescription to Coachella Valley Orthopedic.

Judith

[Judith]

Sharonca,
What's the name of the Physical Therapy Facility you went to that referred you to
Coachella Valley Orthepedic? What city are they in and do they specialize in ALS?

Thanks,
Judith

[sharonca]

Judith - I was being treated at UCLA ALS Clinic with Dr. Graves at the time. The PT there gave me the Rx and I just picked the place that I had use before. Also they are in network for my ins. Where do you go for ALS clinic? Now I'm at Loma Linda due to travel concerns to UCLA. I just saw that you are getting your Rx from your PCP. PCP can sometimes give an Rx when you cannot get back in to a ALS clinic.

Sharonca

[Judith]

Sharonca,
I went to Dr. Graves also at UCLA for a 2nd opinion. My Neuro is Dr. Laura Nist at Loma Linda. I don't have an ALS clinic that I go to. At my last EMG with Dr. Nist, she suggested I go to a PT to get a referral for a leg brace. She did mention that she could refer me to their PT, but I didn't want to drive that far. So she said my PCP could refer me to somewhere up here in Yucca Valley. I have an appt. with my PCP today to see if she will bypass the PT and give me a prescription to go to Coachella Valley Orthopedic. (She bypassed the PT for the 1st Orthotist I went to.)

Thanks,
Judith

[sharonca]

Judith - what a laugh - I go to Dr. Nist also. They have ALS Clinic on Thursdays - same day as support group - 3rd Thursday. Didn't you go to the clinic to see the PT, OT, Wheelchair guy, etc.? I did my first visit and now I just go to see Dr. Nist every two months. If I need to see any of the therapists she will have me come back to the clinic. It is held just right there in her offices. I sent you a PM giving you my private e-mail. You only have to go to the PT one time for the referral. They can give you the Rx and then you take that to Coachella Valley. The PT at UCLA gave me my Rx for the braces. I use one on both legs.

Sharonca

[Judith]

Hi Sharonca,
I looked in my PM, but didn't see any mail from you.
Yes, that is funny that you go to Dr. Nist too. The reason I never went to a therapist when I first started going to Dr. Nist is because I only had bulbar symptoms. It stayed in the bulbar area for 4 years. Now, since January of this year, it has gone into my left leg and left arm. When I went in Sept. to Dr. Nist for another EMG, she then suggested I go to the PT there. I opted to try to find one closes to Yucca Valley. When I went to my PCP for a referral to a PT, she bypassed that and wrote a Rx and sent me to an Orthotist. Now, I've gone back to the PCP & got another Rx and will go to Coachella Valley Orthopedic on 11/19. Hopefully he can see the way I walk and set me up with a brace that will work for me.
When I went to Dr. Nist in Sept., I was ignorant of the process of the PT (that it would have been a one time visit to get a Rx) or I would have taken Dr. Nist up on her referring me to the PT at L.L.
I thought I would have to keep going back for therapy.
How do you send a PM?

Judith

[sharonca]

Hey Judith - The ALS Clinic starts at 1:30 and they have you see therapists one after the other. You stay in the same room and they come in. I don't think I will be going back to clinic for some time so I don't know how they keep the contact going. I saw a respiratory therapist for a full FVC test over at the hospital last week. This was necessary since they don't have the capability of doing a test while laying on your back at the ALS clinic. No problem to drive over since it is just a few miles for me. I am waiting to hear from Dr. Nist on getting my peg. It is a drive for you but not bad on the freeway.

When you go to the PT this week - there are two brothers who work there. Both great. Just remember the Toe-Off AFO. My PT at UCLA requested this specific one - carbon fiber AFO. Good luck with that.

I sent a PM through this site - there is a place up under the "welcome" that shows how may messages you have. If you have not posted enough to get this previledge maybe it didn't go thorugh. I was trying to send you my private e-mail and phone number. Don't want to put it here!

Sharonca

[Al]

The PM system should work for you guys. Try again. Let me know if there's a problem.

AL.