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Pixy

How do I convince her to wear her test socket?

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A few months ago I was matched up with a 16 year old who had her leg amputated because of flesh eating deciese. She is a very high amp and deosn't have a lot of stump to work with so her socket unfortunatly is more or less a bucket. She has been given a socket to wear just to get used to the feel of it there is no actuall leg as of yet.

My friend is very stuburn and I try to help convince her that not doing what the rehab tells her will only hinder her leg being made. I'm not that high of an amp I sort of fall in the knee disartic catagory... suggestions help please?

She lives in a rural comunity very far from the Rehab center so if she goes home with a bad fitting leg it will be a lot of trouble to get it fixed. I'm trying to stress on her how important it is to have a good fit. Any words of advice to pass on would be helpful

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Hi there - there is a new amp in South Africa who got his first leg at the end of September this year. His one answer e-mails just say that it's in the cupboard until he sells his business. I can't even get him to talk to me.

Sounds like your friend may be in a bit of depression.

Sorry I'm not much help. Good luck though. Don't give up. The best you can probably do is be an inspiration for her at the moment, and encourage her gently.

I think....

Ally

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Pixy, you can only do what you can do. Sometimes everyone knows better and are as stubbon as. I did it the right way; hung in there for what seemed like ages, didnt' want to have to come back and thats the thing, so do they're wanting to go home for a little while or do they wanna go home! Hell I wanted out asap but I didn't want the come back thingy-maybe you could take that angle.........good on you for having a go but some people would rather not know.

Met a guy 7 weeks ago (Diabetic 42) his stuff was that he'd done what his Grandmother did and life would be grand....all in moderation even if bad. Well Hello the guy's is now bilaterial not more than 4 weeks later and boy I tried and I'm not diabetic but I tried to explain the ramifications of it all :rolleyes: You see it, you hear it, you can smell it; but they just dont want to belive it.

I would love it ---- if they could make a difference now.... not later .... for themselves.

Mel.

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She is a very high amp and deosn't have a lot of stump to work with so her socket unfortunatly is more or less a bucket. She has been given a socket to wear just to get used to the feel of it there is no actuall leg as of yet.

My friend is very stuburn and I try to help convince her that not doing what the rehab tells her will only hinder her leg being made. I'm not that high of an amp I sort of fall in the knee disartic catagory... suggestions help please?

It's not uncommon for very high AK amps to reject using a prosthesis...I think it's the same sort of reaction that young children who have arm deficiency or amputation have. She probably feels that a prosthesis would feel heavy and she can get around fine without it. I can actually understand why she doesn't want to wear one - not that I would reject using a prosthesis.

As far as you being able to help her: There's only so much you can say or do, Pixy. You can still be a good friend to her, by being there for her, but you'll have to accept that she probably won't listen. But, please remember that it's not you she's upset with.

Although, I do have one suggestion. You could find out what activities she like doing (e.g. running, horse riding...etc) and find a high lebel AK amputee who does that activity and show her what they can manage wearing a prosthesis.

Lizzie :)

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I'd like to chime in here with a bit of a devil's advocate position.

There's this widespread feeling that any amputee's rehabilitation isn't complete until the person is wearing a prosthesis and, while it's the way to go for a lot of amputees, for some it's not the best choice in terms of function and comfort.

I wore a leg for a long time and, to be honest, I never liked it much... but hey, I had to wear it because, well, I just had to. As time passed, the "Oh, I'm in too much of a hurry" and the "I think I feel a blister developing" moments became more and more frequent as an excuse not to wear my leg that day, but it still didn't quite register in my mind that I didn't need an excuse. I could just choose.

A few years later I needed a revision and that left me with a fairly high amputation. After a few tries on the new leg, it all "clicked" for me. I could just choose not to wear a leg at all. That's what I did and I don't know that I've felt the need for one more than three or four times since then.

I find that I'm a lot faster, a lot less tired, a lot less achy after each day on my crutches than I remember being after a day on my leg. The downside, of course, is that I've had to learn to deal with the hassles of crutches, such as not being able to carry much, the stares I get for being so obviously different, being forced to hop a lot more, etc. The important thing to keep in mind here is that it's a choice. It's a choice every individual has the ability and the right to make, and it's as valid a choice as any other without affecting the "level of rehabilitation" I'm seen as having attained.

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I'd like to chime in here with a bit of a devil's advocate position.

There's this widespread feeling that any amputee's rehabilitation isn't complete until the person is wearing a prosthesis and, while it's the way to go for a lot of amputees, for some it's not the best choice in terms of function and comfort.

Not at all, Laura! I mentioned that myself & I fully understand why some people opt for moving around without a prosthesis.

I suspect that if I was an unilateral high level AK amp I would probably do the same. But, there's a big difference between me wearing my prostheses and using a wheelchair.

I think it's a case of 'horses for courses'.

Lizzie :)

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"Different strokes for different folks". As Laura said, we all have choices.

It does sound to me though, that Laura took the time first to try it, and then had something to make a choice about. If one never tries to learn to use their prosthesis, then they just don't have a choice. (Some less fortunate amputees can't even afford to get one to try.)

Once they have learned both ways - then and only then do they have a true choice - to wear it or not to wear it. But then again - they first have the choice to learn or not to learn. And that choice is theirs, and theirs alone. All we can do is guide and share our experiences with them so that they have enough information as possible to make that choice.

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Stop, Stop and Stop.

This is a 16yr old girl who has gone through enough at the moment, she has got to accept what has happened, and her new body image before she will ever accept that in order to walk she will have to wear an alien piece of machinary. loosing the leg at 16yrs and being female must feel worse than death for her and it may take a long time for her to accept whats happened. eventually she will accept whats happened, accept her new body image and maybe then, and only then want more - only at this point will she listen to all the good advice thats being said to her today but until then don't keep telling her - must do this, must do that, you can do this, you can do that, she doesn't want to know - yet!

the clock is not ticking away for her, she is young and when she is ready she will still have more than enough resedules for a pros to help her - at the moment just comfort her.

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Good advice Gaza, however.....

I was left to my own devices for years, and without having another amputee to gauge myself by, or to see what was possible, looking back I can see that I never progressed quite as fast as I could have.

I agree, you can't push this thing with too much 'do this' and 'do that', but I really believe that just hanging around her (as another active and young amputee), will keep the bigger picture in her mind so she doesn't regress into a tiny little hole completely.

And it sounds like she is going to be very isolated. That is not a good thing for a new amputee. I was alone for years. Looking back now, I am quite annoyed with the hospital that they didn't do more to introduce me to other amps, or give me more information to work with.

Ally

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Ally,

Yes you are right, and all of us can look back and can say "if only", but we all have our own journeys to make, and we can only make them when we are ready - i was put in one of the NHS sterio boxes and ordered to conform at a time when i refused to accept my body image, and i have said many times - if only i did this, if only i had done that. untill the girl accepts her new body image she may well look at other amputees as alien too - the girl needs to be monitored closley and given professional counselling to come to terms with whats happened to her - the truth is Ally, it is a long journey to be taken with small steps, and the first steps are the greaving process - and this takes as long as it takes, try to quicken up this process and it only comes back.

i understand that there should be a laid down path to reabilitation but advocate that more monitors should be in place to "catch", via counselling, thoes who stray from this path, i believe 1:1's with fellow amputees too early can have the opposit affect.

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i was put in one of the NHS sterio boxes and ordered to conform

Prosthetists will fit you for prostheses if you are able to use them and because on balance (excuse the pun) it's better for your long-term general health. But, Gaza, the stereotypes and the urge to conform come from society. People should be accepted for who they are, not what they look like.

There are one or two amps who live near me, who have opted not to wear a prosthesis. Although they move around with one leg, they shouldn't be seen as any different to amps who do wear prostheses...or anyone else for that matter. I can understand why they wish to move around 'prosthesis free' - it's such a relief when I take my lmbs off & it feels like heaven! :) I think it's a bad refelection on society when people are pitied and/or ostracised for looking different. :angry:

I agree with you that she probably needs counselling to help her to realise that she's making the decision not to wear prostheses for all the right reasons (i.e. not to persuade her to use a prosthesis), as being the age sge is, she'll probably be permanently turned off using a prosthesis if she's actively persuade to wear one.

I should imagine that all she needs is time and good friends... after all, time is a great healer. :)

Lizzie :)

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i believe 1:1's with fellow amputees too early can have the opposit affect.

Gaza, I can honestly say that I don't know about this. You could very well be right.

Ally

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Ally & Gaza,

Having just read your discussion, and only talking about my own experience, I would have to say that I agree with Gaza - when I first had my amputation I was pretty much in denial for the first couple of months. I obviously knew what had happened to me and what it would mean for me, but I in no way felt ready to equate myself with other amputees.

People I knew kept trying to put me in touch with other amputees, and the idea of meeting any made me feel really quite angry and defiant. The last thing I wanted was to see someone who was in the same situation as me YEARS ON. That would have made the whole thing seem far too permanent to me. Also, I remember the day I first realised that I wouldn't be able to do lots of the things I used to do in the same way as I used to do them (ie. getting into the bath, shower, swimming pool etc) and it just made me really angry. I think that meeting someone who was living proof that that would be the way things were for good would definitely not have been the best thing at the time.

And seeing someone waltzing in on a prosthetic leg looking great would not have made me feel any better about the whole thing either - I think it would have irritated me even more. I just wanted to get back to normal and live my life again in exactly the same way as I did before, and seeing someone with a prosthetic leg would have again made me realise that it wouldn't be exactly the same ever again.

Of course, that feeling went away the more I started to accept what had happened to me, and now I don't feel like that at all, but in the immediate aftermath I definitely don't think that meeting another amputee would have helped at all.

Pixy, I reckon the best thing would be just to leave your friend for a while and maybe wait for her to get in touch and start asking the questions, because I am sure she will eventually. It might just be taking her a while to start accepting what has happened.

Fiona x

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I think she'll eventually get curious enough about a prosthesis that she'll ask or want to try one out... or not... but the point is she has to know she can choose to wear one or not without being considered "more rehabilitated" or "less rehabilitated", which often equates to "more succesful" and "less succesful" as far as rehab professionals are considered. I think that, of course, is wrong.

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Thanks for all the advice. I've been having problems because she really wants to have a leg and wants to wear one and yet she doesn't want to put the effort into making sure the limb fits. We've been able to hang out a lot the last few months and I've been there to answer what ever questions I can for her, and we've become pretty good friends. THe first thing she said when she saw my beat up leg was:" WHen I get mine i'll take much better care of it."

I don't know if I mentioned this before, but she lives in a tiny community far away from the rehab center. so if she is to be fitted with a leg it is important for her to make sure everything is in working order. She is going home for the holidays but is flying in for four months to continue with physio and having her leg made. My Dad was one of the nurses who worked on her( Crazy how small the world is) and he is concerned about her fitting because the femur bone is more or less non- existant. She will have a lot of weight on her pelvis so it may turn out in the long run that staying without a leg is more comfortable for her. She has a lot of determination to walk again, shortly after comming out of her Coma she promised her mother she would walk again so I have a feeling she is not cool with the idea of a wheel chair.

Like I said she is very stuborn, when in hospital she was having fluid drained from her stump and would turn the machine off or not let the nurses know when it shut off because it bothered her. I kept telling her that wasn't such a good idea because last thing she wants is to be stuck here any longer then need be.

She wants a leg but she seems to think that everything will suddnely be okay and she;ll be able to walk in a perfectly fitting leg with no problems. I keep telling her that is not the case I just hope it gets though to her and if she really does want a leg she will start going to her appointments and start wearing her tester socket.

Thanks for all the advice

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Hi Pixy

I have been thinking about your friend. The "mum" part of me would say what has already been mentioned about coming to terms with it etc. etc., giving her body a rest etc. However, from my own experience, I was almost 13, it was quite "tough love" so to speak, that got me me walking.

I was in hospital still when I got my legs, and spent most of every day in physio. If I remember back, I did want to walk and get back to normal, but I also found the legs very difficult. The type I had were pylons which didn't bend, or have proper feet, so it was a bit like walking as a bilateral a/k. I found it so diff. to begin with and it took energy, the physio's really worked me and didn't let me get away with anything, as i prob. would have if I had been living at home. Once I fell and was in tears, they just told me to get back up, seems callous but it did work and by the time I left hospital a month later, I was back full time at school wearing the limbs and didn't look back. I remember actually hating the physio's, but now see why they had to be the way they were.

I know things are a lot different today and some amps. do choose not to wear limbs, which is ok. However, if she really wants to walk it will be tough and she will have to put in the energy. If she is not walking she really needs to be putting in the exercises which will help her.

Ann

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Like I said she is very stuborn, when in hospital she was having fluid drained from her stump and would turn the machine off or not let the nurses know when it shut off because it bothered her. I kept telling her that wasn't such a good idea because last thing she wants is to be stuck here any longer then need be.

She wants a leg but she seems to think that everything will suddnely be okay and she;ll be able to walk in a perfectly fitting leg with no problems. I keep telling her that is not the case I just hope it gets though to her and if she really does want a leg she will start going to her appointments and start wearing her tester socket.

Thanks for telling us a bit more, Pixy. :)

From what you said in your last post, it sounds as though she hasn't yet fully accepted what has happened to her. It also sounds as though she may not even have fully accepted that she has a disability. It sounds very similar to the mind-set that some teenaged type I diabetics can slip into with their insulin treatment - I think it's a form of denial combined with a touch of rebellion (in its most gentlest form) because she's the age she is.

I personally think that your Dad has done the right thing, by putting you in touch, as you can be such a good friend to her, Pixy. :) But, try not to actively persuade her to get a prosthesis fitted (and the wear one) as you will both end up getting upset. She'll need lots of time, as her body and her emotions have had a big shock.

You're doing a great job, Pixy! :)

Lizzie :)

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