Floppy feet

[BarryG]

Hello friends,

As many of you know I have bulbar ALS and my difficulties to date have been with my speech and eating. Lately when I walk my feet, especially the left one, feel very sloppy and I tend to slap my shoes down. Is this "foot drop"? I have a clinic visit in a few weeks but I kind of want to know before then. I haven't fallen yet but today when I was walking the dog I felt very wobbly and because it was snowy and icy we came come early. Anyway, I would appreciate any advice that anyone can give me about what may be next.

 

[joelc]

Yes, that sure sounds like foot drop. Just be careful not to trip and hurt yourself! When you are at the clinic ask them about a brace to keep your foot from dropping. The ALSA loan closet should be able to provide you with one.

As far as what is next? That is anyone's guess, just keep enjoying each day!

 

[rose]

Barry.... (I'm really not hijacking your thread)

Honest.

I just wanted to slip a question in here of my own. Has anyone else who uses AFOs found that wearing them tires the rest of the leg more? Its such a catch22 for me. If I wear them, I propel better, but I fatigue more easily and my legs ache more (the post-work out feeling)

My cane helps keep my balance better than the AFO's too. .... any thoughts?

 

[DgtofTNfan]

My Dad just got is AFO last Monday. The PT noted that he swung his hip out to keep from dragging his foot because he has weakness in his R ankle. She put something like this one (scroll down to plantar leaf spring AFO) on and told him it would protect his foot/ankle and likely relieve some of the hip pain he has been complaining about. It fit in his shoe well and he said he hardly noticed it was there. He has only had it a week though. There are other AFOs on this ALS-NYC site.

http://images.google.com/imgres?img...+ALS&hl=en&rlz=1T4DKUS_enUS288US288&sa=N&um=1

 

[BarryG]

Thanks Joel, I know better than to ask what's next. Full speed ahead and damn the torpedos! Every day's a good day!

Ok Rose, I've heard of UFOs but what are AFOs? Just a newbie here!

Barry

 

[brooksea]

I would be interested in everyone's thoughts also about AFOs. My husband has an rx to get one, but he hasn't done it yet.

 

[joelc]

Barry, if you click on the link above your post you will see in detail what they are.

I used them for about 6 months before becoming wheelchair bound.
They were wonderful and quite comfortable.

Get them and use them in good health!

 

[ZenArcher]

CJ, I have two Ottobock Walk-On AFOs. I am able to walk much farther and I am much more stable with them on. I have two issues with them. First they make the stairs more difficult for some reason. Second I haven't been able to find a pair of shoes which are comfortable for long periods with the AFOs and my feet. One other thing, it makes getting up off of a couch or chair ... different. I have to get my butt forward on the chair more with the AFOs on than without.

For me, if I'm going anywhere other than in the house I wear them and find that they help quite a bit. I know another pALS that has been using these same AFOs for three years now and loves them (well you know what I mean).

 

[sharonca]

I've used "Toe Off" brand AFOs for about a year. Even though I'm in a wc now I still wear them. The stability of the AFOs help with transfers. Mine are comfortable and I love 'em!

Sharonca

 

[rose]

Barry,

AFO just stands for ankle foot orthotic, less typing to just put "AFO"

CJ i have carbon (very light and thinner than fiber glass) spiral style. I was told that the drawback to this type is it does not have as much ankle support (but, as causes a neutral foot position, also places less work on the knee). Carbon has the potential as an "energy return" material, to stimulate clonus, so if your husband has clonus, the bulkier fiberglass type would probably be better.

Finding shoes which work well is a challenge, high top athletic shoes (modern, not old style ones) seem to work the best. I have a pair of winter boots, which they work fantastic in, but the boots are heavy, so that's a problem. The guy who fitted me said that they should fit in the person's normal shoe size, not to go up in size, because that extra length can cause tripping too. I think that's why my winter boots work so well for comfort, because they're roomier inside without being longer. I wear thick socks, or sometime just two pair of socks with the AFOs, and this helps with the cushioning.

 

[rick/Wpg]

Hey Barry...this is one strange disease isn't it? Symptoms vary so much! My first symptom (in hindsite) was a feeling of slightly heavy feet or as I called them...Mickey Mouse feet...kind of a sensation that I needed to flip my feet out at the end of a stride like wearing flippers...and first noticed it while taking one of my wife and my usual long walks. That was the late summer 07. Got diagnosed Feb 08 with limb onset....speech and breathing and swallowing still ok.

Am now in power wheelchair full time and arms starting to go. . I didn't use the afo's but did find that I needed REALLY light shoes. Last summer I became addicted to crocs...light and gave me enough support...I wore them till freeze up....then found these winter slip on boots from North Face.....they are good to -40(I tested them...not a problem here in Manitoba! They are VERY light as they were developed for mountain climbers to wear in camp and are waterproof as well. Only about 50 bucks too. I can highly recommend them to anyone in the northern half of the continent
Here is alink to them...trust it is ok for the link...

http://www.thenorthface.com/webapp/...bCat&parent_category_rn=11706&variationId=87D

Rick

 

[thelma313]

Barry I must commend you. Your positive attitude is always impresses me. As for AFO's my Dad has had one for his right ankle for a few months now. As you know he spent the winter in Florida and rarely wore it there since he spent most of his days in sports sandals by the pool. He relies on his cane for balance though. Tonight he did put on his AFO and I asked him how he felt about it. He said he didn't find it very comfortable. Like Rose, he felt that it tired his leg muscles but he did admit that he needs it and it does make walking easier. He has one that closely resembles the ones in the link that DgtofTNFan provided in her post.

P.S. My parents returned from Florida safe and sound thanks to my great cousin who did most of the driving. My Dad was very emotional when he saw me and was even emotional to see my dog, Chico, which is pretty surprising since he is not exactly a dog person. Chico was pretty touched.

 

[GlenBrittle]

Hey Barry,

Rock on Dude ... its all about the attitude.

I have a AFO , like in the pictures from that link (Fig 4). Mine was custom built to match my left leg. They casted my leg for a mold. I found it much more comfortable with a stretch sock that reaches my knee. If it hurts when you use it , it means its not strapped on properly, or it doesnt fit. Make sure you get one that fits. I use mine every day.

The flop of your foot means that your muscles are weakening for the calf and foot. Use extra caution that you do not catch-a-toe and fall. The AFO , as terrible as it looks , gets rid of that problem.

Glen

 

[BethU]

Saw a new (resident) doctor at my clinic Thursday, as I've been laid low by the mother of all colds ... was afraid maybe it was pneumonia (it's not) but they did chest x-ray anyway. I also have a prescription for a leg brace, and wanted to get a referral to a PT.

I know I'm the first PALS this resident had ever seen, and he was baffled by the leg brace. "Why would you need something like that with ALS?" Alas, all my witty retorts are only in my mind now, since I have no speech, so had to type straight out, "to help with walking?" He seemed amazed by it all. He must have missed the ALS day in "rare diseases 101" in med school.

Had another bad fall Friday and whomped myself but good on the left side of my skull and ribs again. If I keep this up, somebody's (me) going to get hurt. Everything in my house is starting to look like a giant booby trap.

 

[rose]

thelma313,

LOL Chico was pretty touched!

Beth, Quite another amazing time you've had with the medical profession (what was it that Brenda said in one of her posts... that's why they call it "practicing" medicine? I"m very glad it was not pneumonia!

...those AFO's are going to be more trouble for you than their worth around the house probably. I've found shoes when the AFOs are in them, take some tugging to get on and off, but again, not sure I've got it right anyhow. I'm hoping you're using a walker or cane, and you keep one with you, like as in ALL of the time! Plus, in my limited experience, the cane helps a hell of a lot more than the supports do with balance. So, even though your hands are weak, the cane if you can hold onto it, is more for balance than to prop yourself up. (if you guys could see me, I'm sitting here typing with my experimental chin/lip strap doohickey thing on, along with my bipap headgear ~ not attached to the hose, to see how it feels and works ~ and ~ the cat laying on half of the keyboard.)

I agree with Rick, light shoes are the best!