Wearing KAFOs

[addiesue]

I am very frustrated. I don't know that anyone can help with this, maybe I just need to vent. I spend more time putting on KAFOs than I ever spend wearing them. I can barely get them on alone because my ankles are so spastic, not to mention the rest of my legs. I have a baclofen pump that doesn't need to go higher because then my hips and muscles in my thighs don't work. I have to push down so hard on my knee to get my leg to straighten so that the knee will lock on the KAFO that at times my chair will flip up behind me or I fall forward. I just have a lot of tone. My legs are so stiff and uncooperative that my arms hurt by the time I get them locked. And I have awesome arms. I won't even get into fighting the tone to try to buckle the many many straps. We basically have to tie my feet in them to get them to stay in position.

I swear by the time I get them on I am too tired to even try to stand. I am usually pretty tough but I'm telling you it is exhausting trying to get my legs to cooperate. Anyone have any tips on getting them on independently? Leg positioning? Tricks? After I get them on I can hop drag myself across the room with a walker while hanging on for dear life. So 30 minutes to put them on for 5 minutes of standing. Then forever to get them off. I can not let go of the walker, this is not functional and I have doubts it ever will be. I mainly do it for exercise and because at home it is the only way I can stand. The standing helps my ankles a bit. I had hoped to be able to eventually at least stand in them and do dishes but for now I just want to get them on without calling my physical therapist to come over. Not that he would but anyway.

For anyone who thinks I should be glad I can get them on at all and that this is a pitiful whine please see another thread.

[bcsimpsons]

Addie,
I'm sorry you are having such a rough go with the KAFO's. Unfortunately, I don't have much advise since I had a fairly similar experience to yours. It is very frusterating and disheartening. I wish I had answers or advice but know that you aren't alone in the KAFO adventure!! Hang in there.

Becky,
Chicago

[gpbullock]

I had a similar problem. However, over time and at least 2-3 hrs. a day standing in them, bending over at the waist to stretch out my legs, weight lifting, transfering on and off weight equipmentand the floor, leg lifts, etc. my legs finally relaxed to the point to where I could put the KAFO's on without my heels trying to lift out of the heel beds and shoes. It's a lot of work but problably worth it to not have tight legs.

[addiesue]

Thanks for the replies. I'll just keep at it.

gp - Do you use yours to get around or just for exercise, strenghtening.

Hey becky I was wondering where you had been.

[atvnut]

the best thing to do is to wear your legs out before putting on your kafo's what I mean by that is to ride and ergys or even paddle a motomed you have to figure out how to tire your legs out so that your legs are to tired to fight you try that and stretch as much as you can even if it means standing in a standing frame for half hour before trying to put your kafo's on that is going to be the best way !!

[addiesue]

My legs are never too tired to fight.
I wish I could get an ergys. I rode that rti at SCI Step and it did wonders for me. I'm about 15000 short right now though.

[gpbullock]

I was using them for both. Unfortunately, I broke one of the foot beds off of mine (snapped the rivits) and it took me about 6 months to get them back together so now I have to start over again from the beginning.

[sjean423]

I have only used them in PT .... can;t imagine getting them on alone unless I cranked the pump WAAAYYYY up. And then I would probably blow out another ACL!

[addiesue]

I was using them for both. Unfortunately, I broke one of the foot beds off of mine (snapped the rivits) and it took me about 6 months to get them back together so now I have to start over again from the beginning.

How far could you go with them? What muscles do you have innervated? With walker or canes? I ask because we are both T12.

[atvnut]

Hello again I went to sci- step for four years my name is Tim maybe you heard of me or we have met, but any way if you were their why don't contact Matt to help you with that ?

By the way sci-step was the best thing thats happen to me since i've became paralyzed and i wish everyone could go their cause without them I would not be walking today without sci-steps help !!

asia a complete t11 t12 walking with for arm crutches one mile a day