AFOs

[KimT]

Can anyone tell me the first step in getting AFOs. I obviously need them because I keep turning my ankles and one (good leg) is badly sprained.

Thanks, Kim

 

[Nikki J]

I got a prescription and a recommendation for an orthotist with MND experience from my neuro. I asked for it over the phone and they emailed the prescription. I recommend going to an orthotist rather than buying an afo yourself. Mine was ready made not custom but the padding needed adjusting and I have gone back twice as my leg atrophied. You would think you could pad it yourself but what I needed was counterintuitive Mine is almost 2 years old and still working for me. I think it helped having someone with MND experience because he said at the beginning that it would help through a couple of stages and it has.

 

[soonerwife]

Our neurologist sent a prescription to a orthotist. My PALS went in and got measured. When they came in, he went in and got them and they made sure they fit properly. They help him so much. He was using a cane before he started wearing the AFOS. Now he doesn't feel the need for the cane. I am sure this won't last forever but for now, they are working great.

 

[KimT]

My problem is that I was walking fine and fast until I sprained my good ankle. Then favoring the bad ankle for two months has made my bad leg worse. Even though I can walk on both heels and toes, I cannot move my right ankle at all. It is so painful it causes me to cry. My left ankle is a little stiff and weak but it doesn't hurt 24/7. I cannot fathom anyone touching my right ankle. Even a sheet on it hurts. The only relief I get is to wrap it in an ACE bandage and stay off it. It isn't broken but I think I need some kind of air cast from someone who knows what they are doing. It has made my back much worse and I'm sick of hearing myself complain about it.

 

[affected]

I'm so sorry this has gone on so long Kim.

Sadly, with ALS injuries often just do not heal properly.

It was a bit similar when Chris fell and ruptured the tendons in his good shoulder. It never came back to what it had been pre-fall, and he had pain the rest of his time.

I hope an AFO can assist get you safely mobile, and reduce the pain by giving that support.

 

[Nikki J]

It sounds like you need an afo for your "bad" leg. You likely will need one for your currently injured leg but you need something different right now. Were you given a traditional air cast after the injury? That you could order online to try if not. Are you using a walker when you are not in a wheelchair? And have you had the ankle reevaluated since the day of the injury? 2 months is a long time to have that much pain though your special circumstances no doubt meant you could not do the traditional treatment.

I am really sorry you are suffering like this

 

[gooseberry]

Hi Kim, This seems to happen at the grocery store the most. I am using Shipt and it works great. They are selecting good produce, getting everything on my list, and have even brought the occasiomal jot or cold meal I have ordered. Just a thought.

 

[KimT]

Steph, I haven't been out of the condo since I moved in over two weeks ago except for one doctor's appointment. I tried the heated pool and hot tub and they both felt good but the next day my back was in agony and my injured ankle hurt worse. All I did was no resistance floating. I basically stood in chest deep water and it took all the pressure and pain away but, I guess getting in and out and dressing and undressing made my back worse. My back had completely healed from repetitive motion issues in July. I was walking and swimming with no pain. I went off the small dose of pain meds and had a good August and September. When I bought the new condo I was on the computer bending over, printing, and packing for a month and my back starting hurting again. Then I fell. That's when it all went downhill.

I'm sorry for the constant *****ing. I'm thankful I had one year pretty much free of pain and very mobile.

I can't find the right help. This horror is taking me to a low I don't like.

 

[edschia]

Kim, I have afos for both legs. I had drop foot in both and my ALS clinic nurse called a local (local to me) orthotist and I went in to be fitted. I have to admit t's much better for me as I too was stumbling and falling. Good luck and hope you can find some relief.

 

[Vincent]

If you can stand on your heels and toes an AFO will not do it for you. With a sprain a simple sub talar brace will fix things for you. They are available at most sports medicine stores for about 100.00. Way better than 1200.00 for an AFO. Just so you know I made artificial limbs and braces for 30 years. I've also had a bad sprain before, so I've been there.
Vincent

 

[KimT]

Vincent, should I just Google sub talar brace? Thank you so much! You'd think my PT niece would have told me that. She said get an air brace from amazon.

 

[Vincent]

Air Cast is a company that sells sub talar braces. You can just go to your local drug store and find them in most places. But if you like Amazon.....
Vincent

 

[azgirl]

I think you should still get the prescription for one or both afos.. it takes a while to get the appointment, be measured and fit for them. Medicare and my supplemental covered the entire cost.

 

[affected]

Amazon is sure wonderful when you are not getting out of the condo at all.

I agree, get what Vince recommended, but also the prescription for both so that you can have the orthotist look at you and work out what you need going forward, especially if it can be something that takes a while.