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Post by rowland on Jan 6, 2020 18:28:58 GMT
Try Lumbar Plexopathy. Best find out about it. The side effects are usually gradual, e.g. drop foot needing AFO, weak thigh needing KAFO, instability at hips needing weight-bearing KAFO with ischial support. I would be glad to exchange experiences or answer questions.
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biene
New Member
Posts: 8
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Post by biene on Jan 8, 2020 18:58:00 GMT
Goodness, I think the spammers have misinterpreted the title of this thread as "How to earn 60,000 dollars by posting nonsense". I suppose I could use the two pages of Cyrillic as a chance to dust off my rudimentary Russian, but I doubt they have any interesting insights into KAFOs or medical conditions that would require braces.
Like probably most everyone here, I've thought a lot about what possible explanation I could offer about my reason for needing any unusual "accessories". I've concluded the following:
- Strangers are unlikely to ask too many prying questions, except possibly if they have some experience with similar disabilities themselves. In any case, my tendency is to avoid discussions of this sort because of my own uncomfortable awareness that it's not "real" so to speak. Anyone familiar with paralysis would surely recognize pretty quickly that I'm not paralyzed: I can't entirely avoid using leg muscles because I lack sufficient upper body strength.
- If I were to meet someone I knew, my response would depend on what kind of assistive devices I was using. At present, my wheelchair skills aren't great and I'm not likely to be out alone without a more experienced person accompanying me. So I could make some excuse about "showing solidarity" with my disabled friend or that they convinced me to give it a try and "see what it's like".
- I don't at present have KAFOs that fit. If caught out at some future date with KAFOs, it's hard to think of any plausible medical explanation I could offer, at least if it were clear that I was wearing full length custom leg braces (rather than just "knee brace for a flare-up of an old injury"). So probably I would have to confess on some level. I really hope this never happens.
Right now I can manage my needs fairly well by using braces/mobility aids while at home and going on outings with friends in a different city several times a year. If that changes and I decide that I want to gradually transition to life as a brace wearer, the most realistic "diagnosis" -- for me -- would probably be something related to repeated injuries/problems resulting from hypermobility syndrome, since I'm somewhat hypermobile anyway, albeit not to the debilitating degree experienced by some folks with Ehlers Danlos, for example.
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rk52
Junior Member
Posts: 79
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Post by rk52 on Jan 11, 2020 18:40:12 GMT
Anyone familiar with paralysis would surely recognize pretty quickly that I'm not paralyzed: I can't entirely avoid using leg muscles because I lack sufficient upper body strength. I think I'm right in thinking that polio doesn't necessarily cause complete paralysis but can leave some residual muscle strength (paresis), but insufficient to support the leg properly and reliably. In which case you might get away with it! I find it very difficult to relax my legs completely when wearing braces too, especially ankle and foot muscles. The knee is not so hard to avoid using but I have to think about it.
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Post by rowland on Jan 12, 2020 21:24:26 GMT
My earliest childhood friend wore metal and leather AFOs on both legs. Other encounters with brace-wearers over the years made me willing to wear them when by chance I needed to. Nowadays I wear a KAFO on one leg. I have been through the process of using a succession of AFOs as each became ineffective or uncomfortable. Six years ago I got my first KAFO. I am now on my third as my leg has deteriorated.
My diagnosis is lumbar plexopathy. Early on I was relieved to be told I wouldn't die of it. It can develop swiftly or slowly but it gradually gets worse. Some people have a great deal of pain. I have very little: soreness in particular places and occasional sharp pains. You never know how people see you but I have some clues which might be helpful.
The need to wear a brace began with people noticing I had a drop foot. Friends noticed it. The first doctor I saw told me I needed an AFO and that I would easily find out about it on the internet. I am not able to describe what people saw when they noticed my drop foot but, soon after that, a doctor said I was dragging my foot. Then I had a session with orthopaedic consultants who said I had a weak thigh. I found it necessary to support my leg by putting my hand on my thigh. This is a give-away for the condition. First of all I could get away with putting my hand in my pocket and putting pressure on the top of my thigh. You can find this in accounts of people in the third world, where the cause is often polio. I have not had polio but, although the causes behind the symptoms are different, the orthoses I have had might well be used by polio survivors. Nowadays the possible causes include spinal injury, nerve damage resulting from radiotherapy or diabetes. So people who know might be guessing at these or other causes. I have found it extremely rare for people to ask what is wrong with me. For a few years I could honestly say, "I don't know". Only in the last couple of years am I able to say with confidence that it was caused by radiotherapy. (The best neurologist I have seen said that even a post-mortem would not confirm it!)
When my leg is unsupported, at night or at the gym when I have put my crutches aside, my hand goes automatically to my thigh, just above the knee because the thigh is weaker. Another ploy is to give even more support by putting my elbow in at the hip joint and my lower arm along the front of my thigh.
My orthotist when I got the first KAFO told me to let my leg swing forward as a pendulum. He told me some time ago that I have weak hip flexors. This has recently been confirmed by muscle strength tests. This means that I cannot bring my leg forward except by letting it swing with gravity.
I hope these observations are of use to some of you. It is now over twelve years since I started tripping up. So it has been a long-term project and continues to be.
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Post by rowland on Jan 20, 2020 19:10:21 GMT
If you search on line for KAFO Indications you should find food for thought. It is worth grappling with the terminology. When I was first told that I needed a KAFO I soon found the American Academy of Orthotists and Prosthetists. The GP who told me I needed an AFO told me to search on line and my present orthotist expects me still to educate myself. Recently he proposed I should have an SCO but we both concluded it wasn't for me because I have weak hip flexors. Confidence in your history comes from acquiring knowledge from trustworthy sources.
What I have just written is close to my own experience. When using a series of AFOs I got to a stage when the orthotists seemed unsure what to do. One said, "We shall have to bridge the knee," and seemed to panic. I was referred to the more senior orthotist, who eventually said, "There's no scientific evidence." I was shattered, "Was I kidding myself?" Some time later I got a KAFO because the orthotist could see I was not walking properly. Later still an excellent GP sent me to a hospital out of our area where they gave me a diagnosis of sorts- " it might be this, it might be that, or it might be the other," adding that even a post mortem would not definitely say what was wrong!
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