Leg Brace

[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 them.

 

[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.

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