Frustrated AFO user needs advice

[didedi]

I have the typical MS foot drop and suplination in my right foot. The first custom AFO bit into my arch, causing  a severe spasm and it was very bulky. The second AFO was the super lightweight carbon "Walk-On" brace that was a relief from the first but became too rigid for my 120lb frame. Using my power tools, I modified an off-the-shelf plastic AFO but it is becoming worn out. My ankle begs to flex and my calves beg to re-build. Has anyone tried the Richie Dynamic Assist Brace or can recommend another lightweight (non-bulky) assist/articulating type AFO? Additionally, a good source for experts that are willing to work with the end-user? Thanks!  Di

[didedi]

Hello DJ,

Thank you for sharing your experience with MS. I am fasinated to learn from our "veterans" with MS so I love the details.

I was diagnosed 7 yrs ago at the age of 49 but had signs a few years before then, following a hard bout with pnuemonia. Since my '02 one sure attack in the upper left extremity, it's been a slow progression in my right lower extremity. My top notch MS nuerologist thinks I have the secondary progressive. The good news though, based on my latest MRI, I've been taken off the interferon injection. I will continue with alternative approaches, bio-identical hormone therapy, thyroid med., & histamine disk, to name a few. I have stopped taking any muscle relaxants and sleep aids. If my MRI is still stable in 6 months, I will not have to get on any different MS treatment...hope..hope.

Meanwhile, I am trying to improve my walking with a better brace. I was a mechanical engineering designer for many years before my disability, so I tend to get frustrated with devices that seem to be somewhat antiquated. Perhaps I just need to design and build my own! LOL And yes, I will try to find the right Orthopedic specialist but always like to hear from those actual AFO users.

Thanks again and you have lighthearted days ahead! Di



Hello Michelle and LA,

Glad to know the Walk-On worked for you! I am curious to know if the foot plate extends the full length of your foot or if not, how long does it extend? Thanks for your reply, Di

[LATW]

I have had really good luck with the Walk On.  I have them on both legs.

I originally had a pair that fit on the front of my leg and strapped around the back.  

I liked them better but I have too much knee hyper extension and broke them within a month.  :-(

LA

[michelleric]

Just wanted to welcome you to the forum. I don't have any info for you regarding the AFO situation. I wear the exact one as you had before, the Walk-On, and so far for me it is a huge help.

I wish you luck and also, like your science project!
Michelle

[ShadowsSister]

Good Morning it is 1:36 AM and my Friday has started... No more sleep tonight /Morning I reckon.

Di Sweetie, welcome to our Group, which is NOW YOUR Group.. We are all here for you, So Sorry I didn't catch your post sooner.. I can be slow at times..
Again so sorry ;-(

Di about the item # 1, I wore this type for about three years, because my right foot & leg were turning so that the foot was actually pointing towards the left one  it was twisting at the hip also. Needless to say the long bone in the right leg felt like it was breaking as well as my ankle. because my foot had flipped over on it's side, this was proven to be caused to MS Spasticity and Dystonia underlining cause MS.

Of course I also have the foot drop in both feet now. I can not longer use a brace due to the awful bone pain and very bad spasms. But the effects of wearing this style brace for three years, helped me so much for quite some time.. But it never cured the bone pain. Nothing has.

I don;t know if you can use any of this info. For many years, as Lulu can tell you I wouldn't talk about how the MS effected me. I didn't want to scare people. Believe me I have done that in the past. That's why I am always saying "MOST WON'T END UP LIKE ME", My Doctors say that I have a rare form of Chronic Progressive MS  or as they refer to it today PP MS, That they have rarely seen some have never seen it. Which is why they have a hard time treating all the areas effected.. The medications are in conflict with each other
Lulu and Debi have both helped me to understand, that after living with Chronic Progressive MS for almost 24 years now. I have a whole lot of information that I was keeping to myself. That I could help people in our forum if I was only willing to open up about myself. So that is what I am doing. Now I try to be very detailed in how I respond, which explains why my post tend to be rather long.

But I figure you can all pick and chose what you want to read, I am just putting it out there for all of you... Even I will admit most of what I write tends to be pretty boring LOL  ;-)

I hope your P/T and Doctors can come up with the right one for you, just don't give up yet, I ended up going to an Orthopedic Doctor and he found the answer for me. This is what I do now rather than deal with a Neuro, I go to the doctor who specializes in the area that is causing me the problem... For me this works out quite nicely.. To each their own when it come to picking doctors.

Lulu, my fingers haven't followed my directions for decades now.. THANK GOODNESS for "google spell check." if you have google bar, than you should have google spell check, it makes my life so much easier when I am posting.. I use it before I hit the send button, unless I am having a " Butterfly moment and forget" LOL ;-) It works in most "web sites". Such a Blessing ;-)
Every one have a Love Filed Day and a Restful, Relaxing week end {{{{~!~}}}} DJ

[Lulu54]

I really should proof read before I hit that send button because my fingers type entirely wrong words all the time - I really meant good LUCK and not good LIKE.  They always seem to be slips that make a weird sort of sense though.

And I give you an A for the project presentaiton.

[didedi]

Thanks Lulu. Yes, I am new to this forum and am looking forward to responses from people who have "been there and done that".  A few years back I did try the WalkAide and loved it. However, since then I have developed a need to have actual support with the foot suplination (turning down & in). I do have a muscle stimulator which hopefully "with more devotion to its use", I can increase the strength in this area. It cannot be used when I am wearing the AFO though. Glad you liked the science fair project....Di

[Lulu54]

Hi Di,  Welcome to the forum here at medhelp - I don't remember crossing paths with you yet.  Sorry if we did and I'm not remembering.

I have absolutely no experience with AFO's but others here do - hopefully they will see your post and jump in and talk about their experiences.

Your visuals are great -  I love the display board of the different AFO's. Its like looking at a science fair project! :-)

A while back I saw a demonstration of the walkaide system - you might check their website and see who the local distributor is and go in for a trial fitting.  Its pricey at around $5,000 and not all insurance companies will cover it.  But from what I saw, it looks like something worth trying if the money isn't an object. their website is walkaide.com

welcome again and good like with finding a good fit for you!

be well,
Lulu