An AFO that might be of interest

Murray, a past member of the KDA's board of directors, and someone living with Kennedy's Disease was concerned with his loss of mobility. He recently learned through a friend of an orthopedic device that could possibly help him walk safely again. The orthosis device is one of the newer designs of leg braces.

I followed up today to see how the leg braces were working. This was Murray's response.

"Bruce, these are great!  I have the Allard ToeOFF® but you need to see a Podiatrists specialist so you get the correct brace for your gait. I have mine in my sneakers under my inserts and I leave them there. Makes for putting them on a little more difficult but not too bad.

The other day while putting my chair in my car I actually could relax my butt & thigh by leaning against these. I can now walk from the back to the driver's door without hanging on to the car for dear life. I still use my chair in the house only because I wear slippers and spend most of my time in my recliner.

I would recommend these to all KD'ers. I could only stand for ~10 seconds unassisted and now I can walk 30 feet without grabbing on to something."

Murray mentioned that when he first tried the AFOs, he walked down between two parallel bars using them for support. By the third time around, he was walking without holding on to the bars. He could not believe it. It has been three-or-four years since he could do that. Murray also commented that he has a SUV with running boards. The last few years he had to place his butt on the seat and slide in because he needed both legs on the ground to keep the knees from buckling. Since he started using the ToeOff device, he can now lift the right leg up and step into the vehicle without worrying that his left knee will buckle.

In reading the owner's manual, the device seems fairly simple to put on and remove. The manual begins by stating: "Your Orthotist has selected the ToeOff Family Product, the original and highest quality carbon deposit AFO available to meet your specific needs. Carbon deposits offer durability as well as decreased weight and bulk as compared to traditional braces. ... Like a new pair of shoes, orthesis have a break-in period."

At one time I tried an AFO and did not like it at all. It was not comfortable and difficult to put on and take off. This device looks substantially less intrusive, lighter and easier to handle. Technology has come a long ways it appears. If interested in learning more, you should contact a Podiatrist in your area that is familiar with neurological conditions. If you would like additional information on the device, Murray said you can email him and he would be happy to answer any of your questions or refer you to someone that can.

Does anyone else have any experience (positive or negative) with AFOs? If so, please share them and include the type of device used and any specific issues. I look forward to hearing your stories.