rk52
Junior Member
Posts: 79
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Post by rk52 on Jun 30, 2020 19:57:02 GMT
How long is it since you last met with Sam? It certainly wasn't worth taking the risk with your Dad by the sound of it!
Like most members of this board I am not actually disabled, I just have a liking for braces. I grew up towards the end of the polio years and it must have had some influence though I don't entirely understand why. I have two bilateral KAFOs I got second hand from eBay. They are not a matched pair by any means but they fit and work well enough to give me the experience. I don't use them often.
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Post by milkid on Jul 1, 2020 9:39:03 GMT
It is about 15 years ago since I spoke with Sam his parents were alive then but its over 50 years since we last saw each other.
I have no problem with you actually not being disabled. As you say they work well enough to give you the experience which to me is important in a way because you experience what it was like for us kids who had to wear them.
Have you ever tried patten ended callipers that is an experience.
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rk52
Junior Member
Posts: 79
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Post by rk52 on Jul 2, 2020 9:06:16 GMT
I have never seen a patten-ended caliper for sale so no. The standard ones that turn up from time to time are most probably from the house clearances of polio victims who have passed on. The youngest polio patients would now be getting on for 70 as the vaccine was widely available from 1955 or thereabouts. Having to wear one or two kafos for life is a pretty awful thought. Have you seen the film "Sex&Drugs&Rock&Roll" about the life of musician Ian Dury? Dury had polio and had some pretty awful experiences at a special school as a child, and he was an angry man as a result. Andy Serkis plays him superbly, and apparently he wore a left leg kafo for a month or two to better understand what life was like for a polio victim.
I wish you and Sam well with your meeting, there will be lots to talk about I'm sure!
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Post by milkid on Jul 2, 2020 14:49:51 GMT
No I have not seen the film would like to. Yes meeting this weekend unfortunately we cant go to a pub or restarant at the moment because of the pandemic. I have got some beers in at home and I will take him to our home for beer and refreshment. He knows I want to know the origin of the anorak his parents called the comliance anorak and he is bringing some photo's I havn't seen before. If you ever get a chance to get a bottom ended perthes brace or modify a kafo to one you should try it. It is a totaly different experience.
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rk52
Junior Member
Posts: 79
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Post by rk52 on Jul 2, 2020 16:14:28 GMT
The film DVD is available on Amazon fairly cheap second hand. Are the pubs where you are not reopening this weekend then? That's a pity. Mind you, I'm not planning to go to any until the dust settles on their new arrangements! The perthes brace has never really appealed but I could modify one of my kafos; I've already modified it to increase the ankle-knee distance by an inch or so to improve the fit. However it doesn't have a bucket top or an ischial ring so I doubt it would work very well. If you do an image search on the web for "perthese brace" there are some rather alarming results!
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Post by deejay on Jul 2, 2020 22:12:06 GMT
For me, two perthes braces would be something I really would like to try. One of my earlier home-made brace attempts was weight bearing as it was extra long and had a padded ring at the top and was one long steel bar which went down one side across under the heel and back up the other side. It was probably about 2" below my heel but, of course it was not like the real thing. At the time it was all I had so it was great but it soon was not good enough. Now that I have a real standard kafo, that is good, a great fit and very comfortable but two feet suspended...that would be something! I wonder if the vintage braces workshop has ever made any perthes braces....or if they would....? I wonder how much?
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Post by milkid on Jul 3, 2020 10:57:10 GMT
The pubs are opening here on Saturday but the restrictions are so great would not feel comfortable, better get own beer in and order a take away lol. VB may make some but could not imagine the cost they would be. Do you wear shoes or boots with your KAFOs. As you know I was made to wear boots although the spurs did not fit in my heels and at first I never really understood why I had to wear any footwear at all, after all I wasn't going to be able to walk on them. Dad did try explaining to me but I still didn't understand the reasoning. Dad said to just wait until you are fitted with the braces and it will be more easier to understand and in any case you are having boots. Another thing I remember was while sitting in the waiting area in my wheelchair as I was not allowed to bear weight on my feet there was another boy come for an appointment in a perthes brace on his left leg and a steel rubber bottomed raise on his other foot. I asked Dad if that is what I am having, he said it was but you will have one on each leg. I sat and thought about it and said, "I won't have that steel thing on my other foot then" Dad said "no you will have the same calliper that boy is wearing but on both legs so both your feet are of the floor. I did notice the boys foot was about 3 to 4 inches of the floor and asked is my feet going to be that high off the floor, I should expect so said Dad. We had been out shopping a week before to get me my boots which I sat there in my wheelchair with them on. My name was called and Dad wheeled me in the clinic room with Mum following, The orthotist said "Im pleased you have come with him wearing boots as we recommended, but just above the ankles would have been fine" I told you so I said to Dad but you have had me put in the highest boots we could get in my size 14 holes I angrily said when 8 holes would have been ok" The orthotist could see I was not a happy chappy and came in defence of Dad by saying" these are fine if not better they will give your calfs good support" Cutting the story short, I was fitted with the callipers, the bucket tops had been fastened, the knee pads fastened and the leather ankle harnesses with the traction straps strapped tightly over my boots at the ankles. The patten ends had not yet been connected to the callipers. The orthotist got my attention and said " I'm now going to fit the patten ends so as from today you will not be able to put or feel your feet on the ground for at least four years and you will have to learn to balance and walk with the aid of crutches" I though well the boy in the waiting area walked in without crutches and was able balance ok. The orthotist got a tool and undone the screws securing the patten end extensions. Th orthtist got Dads attension and told him I was to be raised 7 inches needed to apply the traction to my legs. He said "They can't be adjusted and lower than 7 inches because the first holes the screws fitted were set at this hight" he said. However they can be extended to compensate for growth and will exted to about 10 inches so there is plenty of adjustment he said. When he had screwed the firts patten end on and I could see what 7 inches loocked like I got upset demanding to know why I was to be raised so high when the boy outside was only at 3 to 4 inches. The orthotist explained the boy didn't have to have traction as I have and we need this hight as a minimum to pull the straps to get enough traction. Trying to content me he was telling me because I was rather small for my age the extra raise would make me taller. That pleased me. Mum and Dad now had instruction of how to adjust the traction straps. The orthotist told Mum and Dad and loocked at me the traction needed to be strong and when applied what I would feel was a very stron pull on my ankles and the ischial part of the bucket top would feel very tight and it is important my boots are kept tight laced for greatest support from the strong pull and that the pull does not pull my heels up in the boots. To appy the traction I had to be standing. I was pulled up on the patten ends and it felt so wired having my feet supended like this. The orthotist threaded the long strap attached to the ankle harnesses through a steel loop on the upper part of the patten ends. I had to hold on to the back of a chair to balance while he pulied the straps through the loops really hard and immediately I could feel the pull on my ankl;es and the bucket top get tighter on my bottom. The orthotist marked the holes on the straps where they had to be adjusted to and the long lentgh of strap left was put through two loops on the straps. Right young man the orthotist said. "This is how you will have to be 23 hours a day, normally if only one calliper is worn and there is a need to go to the bathroom in the night it is easy to hop on the good leg or crutch to the bathroom" However he said " becouse you have two callipers you cannot hop or crutch to the bathroom without weight bearing, and the other reason they are to be worn all the time is the traction needs to be continuous" So it was a ritual before bed, calipers and boots off for one hour and carried and lifted in the bath. Lifted out of the bath callipers back on, boots fully laced and tightened and traction straps fastened then bed.
When I was finally released it was such a weird feeling having my feet back on the ground and had to learn to walk agian with pysio to build up my muscles that had not been active for a long while. S
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rk52
Junior Member
Posts: 79
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Post by rk52 on Jul 3, 2020 20:51:20 GMT
I usually wear boots with the kafos, I have tried shoes but they are not really strong enough. Your childhood experiences do sound something of an ordeal but at least they sorted the problem and you haven't had to wear braces all your life since. I dare say it took a while for your legs to regain strength though after so long being effectively out of use.
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Post by milkid on Jul 5, 2020 8:46:52 GMT
yes I was in the bilateral perthes callipers for 4 years. Put in them aged 7. Before that aged 6 was in broomstick casts for about 7 months as I remember plastered in thick heavy plaster from the tops of my legs to my toes. At first they spread my legs not to wide apart but at the next cast change and after X-rays they were spread to an unforgiving spread so wide I could no longer walk in them with crutches. On the second cast change another 2 months on it continued with the same spread but they internally rotated my legs so my feet pointed in and an additional crossbar above my knees making 3 crossbars in all. At 7 months they were not satisfied the hips had healed as they should have done and not moulded correctly to my hip sockets. After a discussion with my parents the doctor said I would benefit in braces with my legs now not spread with continues traction to keep the ball joint tight in the hip socket otherwise they would slip out. So for the next 4 years I was in bilateral patten ended callipers raised 7 inches to allow for the traction straps to pull on my legs from and harness around my ankles to the patten ends. The of cause there were the boots I was laced in tight. So in all my legs were immobilised for a total of around 2 years 3 months and I great degree of muscle wasting with my legs be inactive. I had a walker frame to help support me and physio 3 times a week for 2 months. They sugessted I still wore the boots for extra ankle support which I hated having been laced up in them day and night for the past 2 years. But Dad insisted I had to still wear them but not at night. I had to put them on as soon as I got up and took them off before bed time. Apart from the physio at the hospital I had to do exercises at home several times a day.. X-rays revealed the hips had reformed quite well and I should lead a normal life.
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Post by calipermn on Apr 17, 2021 17:43:21 GMT
I wouldn't say sadist just very strict parents as they were in those days to inforce compliance to hih not tampering with his brace for his own good. I had to have my shoes substituted for boots so the would'nt pull off against the pull of the traction straps from the leather harnss around my ankles and to the patten ends. 8 hole boots would have been sufficiant as my doctor told my parents but because they had 14 hole high boots that came up to high calf my parents choose to have me tight laced in these as added calf support. I wouldn't call my parents sadists for keeping me in the boots they did it for a reason just like they kept Sam (his name) in the compliance anorak to stop him constantly trying to adjust his brace to make it looser and lower. If you had seen this milwaukee brace as I did and at this time I was aged 11 and understodd what was happening. Instead of a pelvic girdle that normal type milwaukee brace had this was a full brace corset made of hardened and very rigid brown polihsed leather that fitted tight in to his hips, over his buttocks and as low as the tops of his legs then extending to enclose his whole torso until tight underarm It was fastened at the back with ten leather straps with steel buckles adn tightened to an unforgiving tightness until the brace corset was fully closed. In addition the front bar was raised until his neck was held in an unforgiving degree of extension and the neck ring closed until hiu head was tightly sandwiched between the rear head support and chin pad.This he had to endure 23 hours a day. Its no wonder he was constantly trying to loosen the brace corset and lower the front bar. It was for his own good he was made to wear the compliance anorak to force complyiance to his wear regime. So I wouldn't call his parents saddist just insuring compliance was met. Two more photos I have found of Sam in his compliance anorak shows more detail
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Post by calipermn on Apr 17, 2021 17:44:56 GMT
Milkid. How do I open the pictures of Sam's compliance anorak please. Calipermn
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Post by legbraces on May 25, 2021 19:54:19 GMT
I wouldn't say sadist just very strict parents as they were in those days to inforce compliance to hih not tampering with his brace for his own good. I had to have my shoes substituted for boots so the would'nt pull off against the pull of the traction straps from the leather harnss around my ankles and to the patten ends. 8 hole boots would have been sufficiant as my doctor told my parents but because they had 14 hole high boots that came up to high calf my parents choose to have me tight laced in these as added calf support. I wouldn't call my parents sadists for keeping me in the boots they did it for a reason just like they kept Sam (his name) in the compliance anorak to stop him constantly trying to adjust his brace to make it looser and lower. If you had seen this milwaukee brace as I did and at this time I was aged 11 and understodd what was happening. Instead of a pelvic girdle that normal type milwaukee brace had this was a full brace corset made of hardened and very rigid brown polihsed leather that fitted tight in to his hips, over his buttocks and as low as the tops of his legs then extending to enclose his whole torso until tight underarm It was fastened at the back with ten leather straps with steel buckles adn tightened to an unforgiving tightness until the brace corset was fully closed. In addition the front bar was raised until his neck was held in an unforgiving degree of extension and the neck ring closed until hiu head was tightly sandwiched between the rear head support and chin pad.This he had to endure 23 hours a day. Its no wonder he was constantly trying to loosen the brace corset and lower the front bar. It was for his own good he was made to wear the compliance anorak to force complyiance to his wear regime. So I wouldn't call his parents saddist just insuring compliance was met. Two more photos I have found of Sam in his compliance anorak shows more detail The attached file is broken donyou have another way to show the pictures?
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Post by milkid on Aug 24, 2021 11:13:04 GMT
Milkid. How do I open the pictures of Sam's compliance anorak please. Calipermn HI Sorry have been off line quite a while dispute with provider. Sam is no longer on line but conveyed this question to him and he has sent me a couple of photo's he says I can use. The photo's were taken in 1961. Not known where first photo was taken but the Milwaukee brace can clearly be seen under the anorak, the front bar and neck ring. The second photo was taken when on holiday outside hotel. Under the anorak the modified Milwaukee brace consisted of a full hard leather corset instead of the traditional pelvic girdle. The corset was shaped the same at the bottom as the pelvic girdle being closly moulded over his hips with the steels and onto his buttocks then instead of finishing over the waist the whole of his torso was enclosed to underarm and the corset was closed with several leather straps and it was made unforgivingly tight. The next alteration was the the rear head support, instead of two pads as on the traditional brace he had one large pad. Brace adjustment was high. The front upright was adjusted as high as possible to keep his neck in very high extension and the neck ring was adjusted as small as possible to sandwich his head tight between the rear head support and chin pad so he could not move his head. sam complience1.pub (172 KB) sam compliance2.pub (194.5 KB)
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Post by milkid on Aug 24, 2021 11:14:15 GMT
Milkid. How do I open the pictures of Sam's compliance anorak please. Calipermn
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rk52
Junior Member
Posts: 79
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Post by rk52 on Aug 24, 2021 15:36:07 GMT
Thanks for posting those milkid . As a .pub requires Microsoft Publisher which I don't have, I've used an online converter to convert to .pdf:
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