AFO use...anyone else out there?

[Kj9681]

I was placed in an extremely useful, yet bulky AFO in Jan '16. It gave me some peace because I'd no idea that I'd be dealing with foot drop. Over the months, I began researching braces and wanting to challenge myself by walking in a brace that didn't provide as much support. That and, of course, I get tired of the stares...the questions!! My word!! I actually would tell people I stepped on an IUD in Iran...Small joke!! I'd tell the truth when the "really?" was asked! Anyhow, I wanted to share this brace with any of you who may be dealing with foot drop and would like to come out of your bulky AFO. I hope this helps...

[Jesmcd2 CommunityAmbassador]

Hi Kj9681 l was told l had foot drop about 7 yrs ago. They say it's unrelated to my MS. But they sent me home from the hospital with these huge boot type things on each foot and a walker. I got home and tossed the walker down the basement steps and proceeded to fall on my face, ugh

At that time l had a pup that loved to play with a rope and he would wrap it around my foot and it would slip off, then he would put it higher. I realized then that l could judge the ground with my ankles. After ALOT of work and ALOT of falling lm in smaller support braces in the summer and much stronger ones in the winter. Hang in there! And don't let the stares get to you!

[Kj9681 in reply to Jesmcd2]

Thank you! It's odd this MS. I was fine...for years. The meds worked and I'd been able to live with MS for around 13 yrs successfully. Now, the past 2 yrs have changed my life...MS has been a real booger. 35 next week. RN...single mom of 3...still I'm blessed. Still wrapping my brain around all of this...

*sigh*

Hope it's ok to vent. There's really no one to talk to who gets it in the "real" world. #reality

[Jesmcd2 CommunityAmbassador in reply to Kj9681]

This monster they call MS is very strange and confusing. Being dx last l still don't have a clue what's going on. I went to a support group meeting and they yelled at me because they all thought l had optic neuritis. Ugh l had no clue l just figured my crossed eye would go away. Called my neorolgost and he put me on the steroid infusions right away. How was l supposed to know? Lol

Its way to confusing and sneaky and just ticks me off. So yes this is a good place to vent l think

[Vlbrown57 in reply to Jesmcd2]

Oh I am so sorry you were berated for having an obvious symptom of MS! I quit the support group due to the group leader constantly berating us when we brought up real life concerns and situations. She just wanted to treat us like ignorant children. Tired of people who believe they are experts and telling us to shut up about our real lives. God bless you.

[Jesmcd2 CommunityAmbassador in reply to Vlbrown57]

Oh no it wasn't like that, they were just concerned about me and since l had been seeing cross eyed for a wk they were more concerned about me losing my sight. They also brought home the point that that l HAVE ms and l just can't take this monster lightly anymore. I need to be more aware and ask the stupid questions. Really think if it's normal or ms ugh

[Jesmcd2 CommunityAmbassador]

Kj9681 no one told me what to expect with this just my neorolgost said yes you have it. I'm lucky to have an amazing support group and they answer the questions that l do have. About the heat the fatigue and they helped my with little hints about taking the steroids. I'm sorry your support group wasn't as supporting for you. I hope you can find that here.

[Kj9681 in reply to Jesmcd2]

As so I. I'm, currently, giving it my college best to NOT isolate. I know it'll get better. I'm still so stunned! Thanks!

[Kj9681]

^As am I...sorry

[Elle61]

I could use an ankle brace but I don't have a lot of money. Where did you get yours?

[Kj9681]

I ordered if off of Amazon. It uses your shoe laces to life the foot.

Ossur Foot drop brace. I paid around 40.00. I think it's worth every penny. Blessings!

[Elle61 in reply to Kj9681]

Thanks for the info

[Kj9681 in reply to Elle61]

Anytime!

[jimeka]

Hi, new to the group. I have primary progressive ms. When I was diagnosed 6 years ago they provided me with an AFO, but you could only use it when wearing lace up shoes. They gave me a couple of years later an ankle to knee one which I find great for riding my trike but this summer has been too hot to have lace ups and socks on all the time. I get a lot of looks when I wear the brace with shorts, but it works, so I don't care any more what people think, it improves my quality of life. I just wish they could come up with something you could wear with slip on shoes.Cheers Jimeka

[agapepilgrim in reply to jimeka]

Did you know MSAA gives away free cooling garments that one set includes cooling ankle wraps that are WONDERFUL over my compression socks that I must wear in the dead heat of summer for other health problem? They are such a blessing. Check it out: Cooling garments!! I have my neck scarf cooling garment on now. I can never get cool enough because we can't afford to keep house at 70 degrees!

[Kj9681 in reply to agapepilgrim]

That's awesome! My body has a hard time thermaregulating in extreme heat, and cold. I tell you, winter is the worse!! I can't get warm to save my own life!! Any tips for getting through winter?

[agapepilgrim in reply to Kj9681]

OH NO, NO, NO, NO!!!! I didn't need to read that!! Here I was looking forward to winter so I could stay cool and be done with sweating and screaming and cooling garments!! It is reversed in the winter months??? I quit!! I give up!! I'm taking this back to the doctor and telling him the MRIs belong to someone else!!! (But I did used to live in the north and I do have lots of thermal undergarments, Thorlo socks, and electric heated throws for TV time). Guess I will be wearig gloves and hats inside!

[Kj9681 in reply to jimeka]

Me too! I often wish the same thing! I think that in time, we'll get our wish granted!

[Kj9681]

Awesome! I'm glad you were able to get something that works. The only one I had, at first, was the one that takes up my entire calf. It works...I just didn't want to have to rely on it. One day at a time. I'm praying the new med that getting all the buzz for PPMS works!!! Blessings

[Kj9681 in reply to Kj9681]

Amen! God makes us win!! Keep fighting the good fight! Blessings

[CherieMSCN]

I have a carbon step off AFO that I have used in the past. Very light weight and comes to just under the knee. Not bulky. Also have used foot-flexr which velcro's around your ankle and is tied into the top grommet of your shoelaces. They are not covered by insurance but a pair costs around $30 and are quite comfortable to wear. To check them out go to speedfitness.com and click on the "foot-flexr" tab.

[Kj9681 in reply to CherieMSCN]

Awesome! Thanks

[Kj9681]

It has worked well for me, and I hope it help you. My AFO sounds the same as yours...bulky, yet better than nothing. 🙂 Let us know how it goes! Blessings