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Post by castmenow on Feb 13, 2020 8:35:46 GMT
rmar,
Thanks for the reply. Your comments about bale locks are interesting. I had a single KAFO once with a bale lock and never really thought much about it in terms of ease of use with just a single KAFO. However, when I bought my HKAFO which I can also wear as just the KAFOs I went for spring assisted drop locks on the knee joints. I now see that bale locks with both legs braced are much simpler to unlock. OK wearing a pair of KAFOs you can do one leg at a time but when in the HKAFO that is more difficult. In the end I made up a set of cable release mechanisms to go on mine so I can unlock each leg single handed from the front of my thigh near the top of the cuffs. I can still do the drop locks manually if I wish, but the cable pulls are a real boon.
I would look forward to seeing your braces, always good seeing other designs and comparing them to mine.
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Post by rowland on Feb 16, 2020 16:10:51 GMT
Hello, I am a very recent addition to VB and not an experienced contributor to any discussion group.I am able to offer an insight into wearing a patten-ended caliper because I spent 4 years relying on one so that I could walk. My situation has never been particularly straight forward and still isn't but I was 7 in year 2007 and had been having considerable trouble walking. My left leg hurt from hip to knee and bearing weight was sheer agony. After numerous X Rays and much prodding, my Mother was told that there was a serious hip problem, the details of which I simply forget. After one particular hospital visit, I left the place with a full leg plaster cast and the knowledge that I would need to use crutches for quite some time. My parents encouraged me to go out and about as much as possible so that I could be confident with my crutches and using just my right leg. After 7 months like this and following many examinations, the cast came off for good and I was fitted into a Perthes caliper. I had been told to wear really tiny swim briefs for the appointment which seemed odd but I soon realised why when the new caliper was put on. I had two metal bars which extended from hip/groin to maybe 4 inches beyond my foot, ending with a metal plate underneath which had a rubber sole. A metal and leather ring encased my leg at groin level so now I saw why I needed the swim briefs so small as to fit above this ring. The outside metai bar extended up to my hip and joined onto a waist belt which had a lock for when I stood up. My leg was fitted quite snug in this caliper and it was never going to take any weight now at all. My foot was in a trainer supported between the two bars by a leather strap and buckle securing it a few inches above the patten and a strap connected to either side of the rigid bars so that my leg floated off the ground whilst all the weight was taken by the ischial ring at the groin. My other trainer had been fitted with a metal and rubber extension to raise it to the height of my new device. I kept my crutches at first until I felt happy managing the caliper and additional height. Once I felt confident that I could walk after a fashion, I managed to get about like this for 4 years. My leg was kept rigid and I soon realised that I was pretty unusual. There was no way to make my handicap less obvious so I had to cope. Trousers, shorts or vacations spent in just tee shirt and micro swim briefs, all did nothing to shield me from stares and questions but frankly I had no choice. A perthes caliper is a clunky device and not something I liked but I realised that I could not manage without it so I adjusted, became strong willed and found ways to do things everyday as a young crippled kid. Once I got organised, I could strap myself into this device in 5 minutes, stand up, check my waist lock was in place and set about the day. I wore it constantly apart from in bed at which time I had to change into a full length plastic splint from foot to hip which was held on by velcro straps at variou points along my leg. To use the bathroom at night I simply used my crutches and right leg just as before when I was heavily plastered. So, not surprisingly I had many hospital visits and 4 new perthes style calipers as I grew, I still have the last one. In the final analysis I have not gained too much from all of this but retain a sense of humour and realism. My left leg had been hosting a cancerous growth whist my right leg was joining in the fun and games. In the end I was trapped by circumstances which I could not change. Now I am a Blue Badge member and owner of a car with hand controls. Aged 18 and a bit, I am back on crutches for life. There is no left leg as I am a Hemipelvectomy. The leg had to go, simple as that. The nerves in my right leg have been cut off to make me more comfortable. Structually it looks ok but I wear a HKAFO all the time and swing myself along on my crutches with my one leg rigid. Not surprising that I am still of interest to many as I get from place to place. People may like my totally empty left side, my metal caliper slotted into the heel of my shoe, or watching an amputee who so clearly depends on a pair of crutches. I am a severely disabled teenager but for now I can stay away from needing the wheelchair. At least I have some working experience of the 60s style calipers and even in 2018, I am thankful that to have one is both essential and practical in order to give me independence and confidence. In the future I may meet some of the UK members and you will see the old style hardware still in use.
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Post by rowland on Feb 16, 2020 16:51:32 GMT
I have messaged balquhind in some detail. I am getting an ischial ring fitted to my NHS KAFO. I would be glad of any info or opinions on wearing one, effectiveness, comfort.
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Post by rowland on Feb 17, 2020 17:35:16 GMT
rmar, Thanks for the reply. Your comments about bale locks are interesting. I had a single KAFO once with a bale lock and never really thought much about it in terms of ease of use with just a single KAFO. However, when I bought my HKAFO which I can also wear as just the KAFOs I went for spring assisted drop locks on the knee joints. I now see that bale locks with both legs braced are much simpler to unlock. OK wearing a pair of KAFOs you can do one leg at a time but when in the HKAFO that is more difficult. In the end I made up a set of cable release mechanisms to go on mine so I can unlock each leg single handed from the front of my thigh near the top of the cuffs. I can still do the drop locks manually if I wish, but the cable pulls are a real boon. I would look forward to seeing your braces, always good seeing other designs and comparing them to mine.
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Post by keith lovett on Apr 11, 2020 18:08:21 GMT
Yes aged 8 I experienced the patten ended calliper, the only trouble was my perthes was bilateral (both hips) After time in casts I was fitted with patten ended calipers on both legs with both feet suspended about 6 inches off the ground. Being in two was arkward had to learn to balance on the patten ends and walk. I was kept in these for 28 months. I could only take them off for bed, bot then I was fastened to a frame that spread my legs apart to 140 degrees.
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Post by milkid on Jun 10, 2020 12:09:59 GMT
Remember the patten ended brace well. Had bilateral perthes spent several months in full leg casts both legs with three bars between the casts spreading my legs very wide apart then 4 year 5 months in patten ended braces. The perthes being bilateral (both hips) I was put in the patten ended brace on both legs. Normally when only one hip is affected the brace is put on the bad leg and a compensatory patten attached to the shoe on the good side. I was seven years old at the time. Came out of the casts had a few weeks physio before the brace fitting had to remain in wheel chair as not allowed to bear weight on my hips. Because I was to be fitted with two patten ended braces I could not have the traditional padded steel ring that fitted in the grions the body weight was taken on because they would not pass each other when walking. In substitute for the rings I had a very rigid hardended leather what they called tight corset that had been moulded to a cast of my legs for a perfect fit. At the tops of theses thigh corsets they were perfectly moulded and shaped to fit in my groins to take my body weight. The disadvantage iof having to have thigh corsets opposed to the padded steel rings was the length. The padded ring just went around the tops of the legs whereas the thigh corsets fitted tight in the grions and extended down to just above my knees being tightle fastened with leather straps. My knees were secured in the compulsary knee pads with the soft leather centre that fitted over the knee and strapped around the side bars with four sraps. Around my ankles was a wide leather cuff with two straps to prevent my lower legs swinging in between the side bars. The man who fitted my braces told my parents the pattens were normally extended 3 and 3 quater inches below the foot for singe use patten ended braces but needed to be longer when two braces are worn. The side bars were adjusted so my feet were 5 inches above the tops of the walking pattens and the pattens were around 2 inches deep so my feet were actually suspended around 7 inches off the ground. It was lucky I was shorter than I should be for an average 7 year old so the extra extension did not look to much out of place. The braces did have hinges at the knees with drop locks so I could bend my legs to sit in tight arears such as on buses etc. The braces were quite bulky and heavy being of leather and steel and my parents found it difficult to fit me with long trousers over the braces so I was kept mostly in shorts with the braces in full view which cause lots of stare from other kids and some asked questions mostly wanting to know why my feet were raised off the ground. Getting back to the day of the fitting once the man fitting the braces had finished securing me in them he said I was to remain laying on the couch for 20 minutes to get used to the feel of them and left the room leaving just myself and my mother. While laying there I asked my mother why have the things I have to stand and walk on been made so long after hearing the man telling my mother they were to be higher than if I was only wearing one brace. Mother said because that is how it has to be and said I would find out eventually. My shoes had been laced up tightly and on the back of the heels were straps that the other ends attached to the patten end, these were to stop me from toe pointing and causing foot drop. Another man came in the room and told my mum it would be necessary in a few weeks to keep my legs in traction in the braces. I didn't understand this and the man could see I was looking puzzeld so she said "traction means you are to have your legs continually stretched in the braces as well as weight relieve" It was time for me to be stood up on the pattens. Sitting on the edge of the couch the pattens hit the floor so with straight legs I was now leaning against the couch. The mad took hold of my hands and pulled me up on to the pattens and supporting me and giving me two crutches to support myself. What a weid sensation, with full body weight now being taken by the braces the tops of the thigh corsets were now pushing up very hard in my grions. It didn't hurt. Now using my crutches I had to take my first steps in the braces. So weird as the patten came to the floor on the first step there was no feelin of my feet on the ground but I could feel the vibaration of the patten end hitting the floor up the side bars. I was told I would always need the crutches because unlike ony having one brace it is easy to learn to balance and walk without crutches, However for me balancing on two patten ends and walking without crutches would be to difficult especially with being raised higher. I was to go back to the clinic in three weeks time to start the traction on my legs within the braces. The doctor told my mum it would be necessar for me to have to wear above the ankle boots in place of shoes because around my ankles I would have a leather harness with straps that would be attached to the patten ebds and pulled tight to stretch my legs in the braces. Boots would give my ankles support against the continuous strong pull of the straps. The following week I was to be taken to town to get some boots suitable. Mum had got what I needed on some paper given to her by the man at the clinic that would be suitabe. We arrived at the shop and mum was telling the assistant what I required and why. Mum read out the instructions to the assistant that I heard for the first time. The instructions were: The boots need to strong, above his ankles to also give support to his lower calfs, lace fastening, can be laced to a tight fit and must be leather to stop sweat as he is going to be wearing them with his braces day and night. The assistant measured my feet and said I need a size 4 to allow for growth and went to the store room. While she was gone I said to mum I have the braces off at night. Mum said "at the moment you do but once traction begins it has to be continous so you will be sleeping in the braces and boots. The assistant came back with 3 boxes. The first pair were 8 eylet boots just above the ankles, the second pair were 10 eylet boots to lower calf, the third par were 14 eylet boots to high calf. Mum examined them and said " we'll try the 10 hole. They were trid on and laced up as tightly as possibe. How do they feel mum said" "Tight I replied" "good she said" "We'll just try the 14 hole on mum said" "How do they feel mum said" I said " withe the boots this high up my legs, the thigh corsets to just above my knees and the knee pads there was no longer much of my legs to be seen" We ha the 14 hole. Back at the clinic I arrived wearing the boots and the man said the were ok. He attched the straps to the boot heels and attached them to the patten ends to stop me toe pointing and straped leather hrness around the boots at the ankles and ataced th straps to a bar in the centre of the patten endes. The straps were tightended up and I could feel my legs stretched in the braces For the next 4 years and 5 months I remained in the brace in leg stretch and suspension 23 hours a day. Mum put old pillow cases over the patten ends and boots to save on bed sheets.
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Post by deejay on Jun 10, 2020 20:56:00 GMT
Thanks for a great and detailed description. They have always fascinated me since I saw a boy with them at the bus stop near my school. He only had the one though. just wondering, are you ok now or do you still have problems?
Do you ever think you would like to try them again or is it just a bad memory now?
I would love to try the whole thing but I suppose the novelty would wear off pretty quickly if there were no option to take them off!
I wonder if anyone ever took any photos?
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Post by milkid on Jun 14, 2020 14:21:58 GMT
No don't have problems now I would never want to be put back in those bilateral braces I had. For 4 years 5 months day and night with my feet suspended 7 inches learning to balance and walk in them was no fun. It was not just the brace issue but also the boots I was made to wear with the braces. I pleaded for the 8 hole ankle boots just above my ankles, but my parents insisted I was to be put in 14 hole boots to nearly my knees and was kept very tightly laced all the way to the boot tops for which I was not allowed to untie the laces. The braces and the boots I was made to wear day and night only ever being removed to have a bath. Then there was the misery of all the staring from other kids. I too seen another boy while I was wearing my braces in the same brace but only one leg, no boots and only about a 3 inch suspension. I hated those braces. THIS IS ME AGED 10 AVATOR PIC.
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Post by deejay on Jun 14, 2020 21:56:17 GMT
Yes, great to see the pic. I would love to be able to try those. It must have been quite difficult at times even sitting down with the extra length of the lower part of the braces. I wonder if you were able to balance and walk without crutches at all, even for short distances? I suppose one question would be.. do you, or did you ever have a 'thing' for braces or has your experience made you feel completely the opposite? I wonder if similar ones are ever used today for any reason at all.
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Post by milkid on Jun 19, 2020 10:58:51 GMT
They did have knee locks so I could bend my knees for sitting in arkward places such as in the car or on a bus wher there isn't much leg room, but these were governed by my parents they where only unlocked when absolutely necessary. Most of the time if it wasn't essential for me to have to sit I had to stand on them all the time even at home and if I did sit it would have to be with mylegs strait out in front of me. The times where the knee locks were undone to sit, sitting was much different than just sitting down as normal. Once sat down I had to make sure the backs of my lower legs were right up against the chair seat with the pattens completly flat on the floor and not at an angle resting on the floor. In this position with the pattens being 7 inches high the tops of my legs were not horizontal to the seat because of the raise. On asking my Mum why I have to sit like this with the pattens flat to the floor the answer I got was thats how it has to be while sitting and no other explanation. For the first few weeks in the braces it was impossible to balance and walk without crutches. I had so much trouble with this and couldn't understand why as another boy I regularly seen at brace clinics and became good friends with was in the same arrangement as me and was balsncing and walking ok without crutches. Mum made arrangements to meet up with joe and his parents to discuss such issues and Mum invited them for tea as they only lived a bus ride away. When Joe arrived he walked up our garden path with no crutches and stood ballancing on the pattens with no problem, whereas I came to the door to greet them on crutches. During a discussion Joes Mum asked why I was suspended so high off the ground. My Mum said she had noticed Joe was only suspended about 4 inches. My Mum said actually I was suspended 7 inches and it was decided this was the reason I was finding it more difficult to balnce and walk without crutches than joe. After about two months I could actually balance and walk without my crutches but still used them for long walks. The other thing was my boots. Joe only had to wear shoes and he wanted to know why I had to not only wear boots but why they were so high on my legs. Mum explained that I was in continuos traction one of the main reasons my suspension was much higher than Joes. The leather harness laced over my boots at the ankles and the straps connected to the bottoms of the pattens when fully tightened put a lot of stress on my ankles and lower calves and the boots were for two reasons. 1. Boots can't be pulled off from the pull of the traction straps and 2. Because of the high pull on my ankles and calves the boots provided support. While our parents carried on talking me and Joe went outside to play, while playing Joe asked why do you have to wear boots so high. I told him I didn't really need them so high a 8 or 10 hole boot would have been ok but my parents insisted I was to be put in 14 hole boots and would have been higher if they had had them in my size and m,y parents told me the highr the boots the more support they will give me. The next question Joe asked is do I have to wear the boots all the time. Itold him I did day and night and laced up tight. He looked at me in astonishment saying you really have to wear your braces and boot day and night. I said yes don't you wear your brace all the time. Joe said no he was allowed to have them off at night. I told my Mum and wanted to know why Joe can take off his braces at night and I can't. Mum said the answer to that question was easy. Joe is not in continous traction you are and that is why you stay in your braces and boots at all time. Before being put in my braces I never had a thing for braces but my experience has made me feel partialy opposite in the sense I really feel sorry for any kid I see in braces especially if they are extensive. After I had got rid of my braces I still hade to go to the clinic every so often for check ups for a full year. On one visit in the waiting room was a boy about aged 8 or 9 in nearley the same set up I had but more extensive than I had. He had been suspended both leg brace as high as I was and could well have been more. The difference being half way up the patten end extensions was a polished chrome cross bar about 12 inches long boled to the inside down bars of the braces and another shorter crosbar just below his knees. He was also in traction and boots but not as high as mine was. His legs had been joined together by the crossbars and the only way he could walk was by swinging both legs through his crutches and landing on both patten ends at the same time. Mum got talking to his Mum telling her I had had the same treatment for 5 years but not the crossbars, but traction and 7 inch suspension. The boys Mum told us he was still only in his first year. I asked how high was he raised and did he have to sleep in the braces. She said oh yes day and night and his pattens are just under 8 inches. At night we remove these crossbars and replace the lower one with one that is 36 inches long so his legs are spread extreamly wide apart for the whole night and day and night at weekends. On seeing Joe and finding out how much worse his bracing experience was han mine I can honestly say I do feel like I would like to have tried having to walk with both legs fixed together. However I did have the experience of the leg spred while I was in casts before the braces. The casts had 36 inch crossbars and was made to 42 inches 2 months befor the casts were removed. But still I would have liked to experienced to crossbar on the braces. I don't no if still used today will have to do some research. I know leg spread casts are still used. Yes over the years I have seen lots of extensive braces I wish I could at least try.
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Post by rowland on Jun 21, 2020 17:23:52 GMT
I posted on 19 Jan 2020 a brief account of seeing a boy in his early teens kicking a football around in a car park. He was fairly agile in spite of having pattens on both legs, one leg being held in a calliper designed to stretch it. Milkid's detailed postings encourage me to make good use of the equipment that I possess and to enjoy using it.
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Post by milkid on Jun 24, 2020 13:18:13 GMT
Being in one patten calliper on one leg with a compensatory patten on the other shoe is quite easy to cope with like running and balancing as the patten is normally only about 3 to 3 and a half inches high. It is a totaly different experience with both legs in patten ended callipers with the feet raised 7 inches off the ground, tight laced boots to nearly the knees and traction straps attached to harnesses around the ankles of the boots and attached to the pattens then pulled as tight as possible. You certainly don't run around and balance without crutches for quite a while if at all. You have 4 sensations. 1. the hard leather thigh corsets that tightly enclose the whole of the upper legs and being pushed very tight in ones groins from the legs being stretched in the callipers. 2. Having your whole lower legs enclosed in boots that are tight laced all the way up day and night. 3. The feeling of having your feet suspended 7 inches above the ground at all times and 4, the feel of the pull of the traction straps around your ankles.
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Post by polio wannabe on Jul 3, 2020 13:08:53 GMT
I am a long time double kafo leg brace user since 20 years ago. It first started as a part time sexual fantasy but gradually my legs became weaker and weaker until finally I am officially crippled for real. I still wish I was really paralyzed but practically speaking ..it would be difficult . I now have 3 pairs of kafo's and one hkafo . I am soon getting another pair of leg braces making my total collection to 5 ! I must say..once one gets a taste for wearing leg braces..it seems to never go away. No matter how hard I try to take a vacation from caliper wearing ..I go back to them again and again. last winter I went to India wearing Kafo's ..it was really hot and humid and very dangerous to be seen without my braces..so I kept them on day and night . I really got a full experience of what its like to be officially crippled . I must admit ..it had its drawbacks . Have a good summer .
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rmar
New Member
Posts: 23
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Post by rmar on Jul 4, 2020 15:30:56 GMT
Can I ask are your braces the older Polio style with leather and metal uprights? Do you have a family doctor, and if so, what does he or she say about this ?
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Post by rowland on Jul 13, 2020 16:54:07 GMT
Polio Wannabe
I hope you sign up as a forum member. I was a wannabe from an early age. About twelve years ago I was told I needed a dropfoot brace then a few years later a kafo. I now wear a caliper with an ischial ring. I hope you will post or send a message.
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