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.
"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."
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.
Thanks for publishing this Bruce, I know these work for me. - Murray Katy TX
ReplyDeleteMurray, thanks for sharing your experiences with all of us living with the disease. It is always good to hear of something that works.
ReplyDeleteMy brother Billy who has Kennedy's Disease got these braces about 8 weeks ago. His wife and I have both called them "a miracle." I have seen my brother literally demonstrate incredible balance (and mobility) since obtaining these. He is quite willing to show anyone how improved his balance is by kicking his legs (one behind the other) while jokingly snapping his fingers. He is so proud of them and SO grateful for them. He absolutely could not do this without his braces; for those of you with KD, you will understand that he could not previously have done this. No matter how many times I've seen him proudly demonstrate this to folks who have yet to see him with his new braces, I still hold my breath afraid he will fall - with his braces, he does not have that fear. He says at the end of his day when he takes his braces off, his legs are extremely heavy - he realizes now they were that way all day and that's why he was always exhausted and vulnerable to falls.
ReplyDeleteWhen the specialist suggested braces the first thing Billy told him was "absolutely not" - he could not possibly bear more weight on his weak legs; the doctor assured him they were extremely lightweight. Billy had originally gone to the podiatrist because his feet hurt so badly and were turning colors; the podiatrist referred him to this specialist. Billy was completely a non-believer that these braces could help, but he said the specialist was so positive they could, that he relented and ordered them. Billy says they are indeed light - a filled salt shaker weighs more.
Recently on vacation at a family beach house, for the first time Billy was able to walk down to the beach and watch his children play. Recent years past Billy always stayed behind because he could not get down and back up the beach path.
Billy said the braces make bending (for stairs) or slopes difficult but the doctor assured him that with practice he would even be able to handle those. He said he has indeed already improved on those.
Lastly, in my brother's estimation, the braces have turned the clock back for him for about 15 years.
My brother doesn't have email nor know how to even use a computer :) but if anyone wants to get a message to him, or ask a question of him I'll be happy to be the conduit.
Louise, thanks for taking the time to comment. It is indeed wonderful to hear stories like this.
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