Jump to content
Heather Mills - Amputee Forum
Ally

Are new amputees unrealistic?

Recommended Posts

Hi Allie,

Another excellent topic! I would like to add a few thoughts as a RAK, 31 years later - not a new amputee by any means but still learning all the same. My main points (which I'm sure are about as clear as mud in the writing below) are that expectations don't go away and can be unrealistic even when one is "experienced", the pressure unrealistic expectations create can be quite unhealthy and also that I think a discussion like this should take into account a child's experience vs. an adult.

My amputation happened when I was 12. Back then I had NO idea such a thing could happen to a child - only to old men in wars! The main message I was given was to blend in as much as possible and pursue sports. I was rarely treated differently or "special" and am very independent as a result. But because this is how I started this journey, I think I am somewhat messed up in my thinking about what I expect of myself and the prosthetic industry. As I age, I'm mellowing but I have put enormous pressure on myself to walk well and keep up with the two-legged world I inhabit. I stopped being around other adult amputees when I was 14 and never really knew someone my age in the same situation. But thanks to messages I've received from medical professionals, media, etc. I've competed with an "invisible" population of amputees my whole life. Now, with the internet, there are even more messages about being athletic, being models, etc., etc. Thank goodness I have found this forum and found that most of you are like me - ordinary, caring people trying to live your lives as best we know how. A concrete example of this is my new CP and I were talking about stairs and I demonstrated how I go down stairs one step at a time. He told me I SHOULD be going downstairs like everyone else, prosthetic down a step and then other leg bounding over and down (the "normal" way). Well, in 31 years, I was only able to do a jerky and unsafe version of this and only with certain prosthetic components. I can't do it at all now with a Mercury Jr. knee which has a bizarre (to me) locking feature. Anyway, I went right home and even though I had MUCH better things to do, worked on going downstairs in my house quite a few times over the course of a few days. Well, I just never got it and now don't really care but my point is that I let this CP who really just doesn't get it sometimes since he's not an amputee himself make me feel inadequate. Now, maybe if I had a C-leg I could do that but it just isn't really important to me.

This is my jumbled up two cents to your more eloquent article.

Jodi

Share this post


Link to post
Share on other sites
My amputation happened when I was 12. Back then I had NO idea such a thing could happen to a child - only to old men in wars! The main message I was given was to blend in as much as possible and pursue sports. I was rarely treated differently or "special" and am very independent as a result. But because this is how I started this journey, I think I am somewhat messed up in my thinking about what I expect of myself and the prosthetic industry. As I age, I'm mellowing but I have put enormous pressure on myself to walk well and keep up with the two-legged world I inhabit.

Hi Jodi

Well said, your experiences are very similar to mine as I was 12 yrs old also. You are right the message given in those days was to try and "blend" in. But like you I have found in recent years that there is no point in struggling to do some things which are always going to be a struggle no matter what.

An example is of how, once I was walking, the wheelchair was returned and everyone seemed very proud "that I no longer used a wheelchair", however did even so have days laid up on the couch when I couldn't wear one of the legs and this is ok when you have your mum on hand, but not so convenient, when you are a mum yourself and have people depending on you.

So more recently, I have got myself a wheelchair, which I use now and again, and if I go on a shopping expedition will use a scooter, it just makes things easier for me and in the long run keeps me more mobile. However, I have met with some, shall I say "surprise" from certain people, and I try to explain to them that "no, I am not giving up" just trying to get on with my life. I think its just a matter of changing attitudes, and your right even the medical/prosthetic fraternity don't always get it. Have also have to my bite my tongue when I hear older relatives say things like it "its such a pity, so and so has to use a wheelchair now", really hate comments like that.

Ann

Share this post


Link to post
Share on other sites

Someone asked in another post somewhere if it is easier becoming an amputee as a child. I wouldn't say it's easier. I went to hell and beyond and back in that first year. It's the transition which i think is probably a little 'smoother'.

I can relate to what you said aswell, Jodi. I can say though, that this ‘blending in’ was of my own wish too. To join in with my school buddies in all things kids get up to, including being part of the athletics team in high jump and javelin. My parents made sure I was not treated differently or special and encouraged me not to make my ‘disability’ the focus of my life. I pushed myself back then and still today, both with sports and in my career to not be any less then my peers and I have noticed that I am not treated any different either because people accept you how you accept yourself. Yes, sometimes, this pushing to ‘prove’ that I am able to do the same as most people has it’s pros and cons. Not always is it possible to be pain free, OP free and a prosthesis unfortunately has it’s limitations, as we all know <_< . The older I get now the more I try to be kinder to myself and ‘mellower’ and say ok girl, it’s good enough what you’re doing already.

Two years ago I went skiing and yes I did get down the intermediate slope in one piece :lol: . After a few runs my knee was wacked, the stress on my pros knee was tremendous ( maybe i should try out that one leg skiing method, hmm) and a skido had to come pick me up. While I sat in the café at the bottom of the slope I saw a group of 5-7 year olds in their ski gear, helmet , etc. They just zoomed down these black pists without a care in the world. They weren’t afraid and had a ‘just do it’ attitude, which I find just great. This is unfortunately something that hinders us the older we get : fear :(

Sheila, very nice what you wrote. Hope and not worrying about what others think (being free) is what it’s all about really. Even if things are done a different way, like dancing for example, then dance anyway and enjoy it :)

Share this post


Link to post
Share on other sites

Ally--

I'm so glad you started this discussion. Sheila voiced a lot of my opinions. I do believe that as a new amputee was not given enough facts, as to what may or may not lie ahead for me. They gave some such basic information, when the reality hit I had no clue how to do some of the basic things in life. I remember some questions that I had posted here, to a season amputee, might have been a "duh" question. The one that comes to my mine is where I asked for "everyone's insight on something that everyone who isn't an amputee takes for granted -- getting up and down from a (low to ground)chair or couch." Some people forget on simplest things a new amputee needs to relearn how to do. I have been blessed to find this forum, where I have found vast amount information I needed to have to live my daily life. Every day I am blessed with all my friends here. These friends has given me the support which is so comforting to me.

Have a great day,

Patti

Share this post


Link to post
Share on other sites

I must say that ordinary people don’t know much about amputees and prosthetics. Some young amputees are also “marketing victims” and belive in some extraordinary products of some ortho companies. It’s big problem of today in all life spheres. People who can’t get very expensive prosthetic has great explanation for their inactivity – if I get those expensive leg – I could do everything I want. Real truth is very simple – amputee rehabilitation is long and slow process and person who can adapt on cheep beginner leg without problems can do almost everything – of course with better prosthetic it could be much easier. I cold it “syndrome of big expectations”. I know some bk amputees who work as painter, car mechanic, seller – they didn’t change their job and every day they walk a long distance with heavy load. Of course they have cheap legs and don’t change it because their haven’t enough money. Some of mine friends ask me why I have crutches in my car – “ you have prosthetic”, if I say – I have already put my leg on and I don’t feel comfortable – “oh, you have two prosthetic legs” :rolleyes:

Share this post


Link to post
Share on other sites

You started a great conversation Ally. In my situation I believe that I had unrealistic expectations.

I first happened unto a site, and I don't remember what it was, where a young guy in the military had an amputation and was walking a mile on the treadmill not long after. I should have known that a 20 something guy in fantastic shape would progress just a tad faster than an overweight 40 something gal who had been sitting on her backside for the past 10 years!

My prosthetist also made the entire process seem a bit too easy, and he still feels a bit guilty for that today. But fortunately I found this site not long after my surgery and it helped me see that all was "normal" and progress would happen for me, just maybe not the same as for others.

Realizing this helped me to celebrate every accomplishment, no matter how small. And I believe the high level of expectation helped me to get through the surgery and the psychological adjustment afterwards.

As for the athletes, I love to watch them now. Even though I am not at their level, they help me to picture the possibilities! The only real problem I have with it is that we don't get to see any paralympics on television. I wish those athletes would get more support. That affects me more so than anything else.

And one last comment, for stories of regular people like us, the new show Body Rebuilt (or close to that title) on The Discovery Health Channel on Wednesday nights is fantastic. It has al kinds of people in all different situations. Absolutely love it!

Thanks again Ally--great article.

Carol

Share this post


Link to post
Share on other sites

I don't think my expectations were unrealistic or unattainable. I had been unable to do 'normal' things for thirty years, like runnning, walking long distances, buying shoes without examining the heel, to name but a few.

When I elected to have my RBK I could only think of the positive things I would achieve - having two legs the same length without lots of scarring, so that I would be able to wear a skirt - a small thing maybe in some peoples minds, but a great one in mine. I still have pain, but it doesn't compare with the pain I had before.

I have had my prosthesis for a year now, and I feel I am on track. I occasionally come up against obstacles - I am sat here at the moment, without my leg, as ordered by my doctor, I have a secondary skin infection, but I know it will only be a temporary arrangement, fingers crossed, and then I will be back to get on with my life.

Life feels so good when you achieve a task or do something you never thought would be possible, especially if its something you used to take for granted, like walking along a beach.

One of the hardest things I've come up against was last July, I went to see Will Young in concert at Tatton Park, a large outdoor National Trust place. The first eye opener was walking along with a moving crowd on uneven ground, but that was nothing compared to when it came to leave. It was very dark (it never entered my head we would be leaving in the dark ;) ) trying to stumble over tree roots through a wood with dips and hilly bits, I have never been so thankful to see my car, but I made it and had a good laugh getting there. :D

I also have to thank this website for getting me through the months where I was waiting to go into hospital. I visited Lesley (Meggy), who had only been an amputee for a couple of months and had a good chat with her. I also had a visit from a young lady who had been an amputee for about 12 years and she gave me some good advice. By the time I was admitted I was glad to get it over with so that I could get some quality of life back, I'm not saying I wasn't scared because I was.

One of the most satisfying comments I have had recently was from my husband, we were at the shops and he said to me he couldn't get used to me walking without a limp, well thats one thing to tick off my list!!! :)

Share this post


Link to post
Share on other sites

I had a peer visit from a below knee amputee in hospital after my accident - he gave me totally unrealistic aspirations- as I am above knee - with a hip injury. this was organised by the physio at the hospital I was in. I later told her off and she was very humble about it all. He did give me an insight into how a prosthesis works though.

The insurance company just wanted to throw money at my injury & I was promised a 'c' leg to make things 'back to normal' of course nothing is going to replace a real leg (and hip).

The brain is probably the most important organ in all this, my brain tells me I have no disability, but my body tells me differently, it seems there is a constant battle.

My brain agreed to go un-caged shark diving in South Africa, my body is not happy about this - they need to talk...but it's too late now . :lol:

Share this post


Link to post
Share on other sites
I had a peer visit from a below knee amputee in hospital after my accident - he gave me totally unrealistic aspirations- as I am above knee - with a hip injury. this was organised by the physio at the hospital I was in. I later told her off and she was very humble about it all.

I'm sorry to hear that your peer support wasn't appropriate - there's a big different between BK & AK.

My prosthetist always says that peer support should be between people of similar ages, similar amputation levels, similar reason for amputation and if possible similar fitness levels. If all that's not possible then the parties involved should be counselled about the differences before the meeting takes place. It certainly sound like good advice to me...

Lizzie :)

Share this post


Link to post
Share on other sites

ONELEGGEDTOG - I look forward to seeing you in SA. Here is something to 'bait' your breath about our beautiful coastline in the meanwhile.....

shark.jpg

See you soon

;)

Share this post


Link to post
Share on other sites

wow Ally that article really hit the nail on the head for me. every single word in your fabulous article is true to life for me.

I just got my prosthesis 2 weeks ago and I feel I'm doing miserably with it. I see the show "rebuilt" and look to those amputees that are using their prosthetics so gracefully and think "am I ever going to get to that point" "why does it hurt so bad" "I'll never be able to walk in this heavy thing" and then the tears come flowing and I wish all over again that I didn't lose my leg.

Noone told me it would be easy but they didn't tell me it would be this hard either. Before I got my prosthesis I thought I would be up and running with it in no time and now I see that it's going to take many months of 3 day a week PT when I thought I was only going to need it for a month tops once or twice a week, man was I WRONG!

Share this post


Link to post
Share on other sites
I just got my prosthesis 2 weeks ago and I feel I'm doing miserably with it. I see the show "rebuilt" and look to those amputees that are using their prosthetics so gracefully and think "am I ever going to get to that point"

...and you don't think they have been where you are now? Two weeks is nothing...you're doing great! :)

Noone told me it would be easy but they didn't tell me it would be this hard either.

If you are counselling someone during a 'tough time', you have to be realistic but at the same time you should avoid telling them the bare facts, otherwise there is a real possibility that they may 'give up'. :(

I think you need to encourage new amputees...you should celebrate what you can do and not what you can't...

Lizzie :)

Share this post


Link to post
Share on other sites

'Noone told me it would be easy but they didn't tell me it would be this hard either.'

My advice for what it's worth....you have to let the leg become an intergrated part of you, and get your brain to recognise it as an extended part of your body. Get to recognise the feeback from your leg - on different surfaces, and where it is positioned. all this is a bit like learning to drive a huge 4X4 car over a muddy field when you have never taken a driving lesson, but with practice it will become natural. It may help to try and understand the mechanics of your leg, and why it does things at certain times. Also to get your prosthesetist to try different types of leg - if you are an above knee, different makes of knee joints behave totally differently to one another and it's important you find one that suits you, and the way you walk.

Share this post


Link to post
Share on other sites

when new amputees look for information, they see at first only high tech, but insurance pays at first for low tech.

but this can be an advantage. when u learn to walk with low tech and u are good, u can get also most features out of the hightech prostheses.....on the other hand u can also walk with a broomstick. :)

what i mean is, that thr prosthesis is only one important part, when u learn walking again, ua also need good advice and u defenitely need the will to walk again.

Share this post


Link to post
Share on other sites
what i mean is, that thr prosthesis is only one important part, when u learn walking again, ua also need good advice and u defenitely need the will to walk again.

I totally agree, Thomas. Some people focus too much on the prosthesis and not enough on themselves (= the important part of the equation).

My advice for what it's worth....you have to let the leg become an intergrated part of you, and get your brain to recognise it as an extended part of your body. Get to recognise the feeback from your leg - on different surfaces, and where it is positioned.

Absolutely...that's very sensible advice and you're right it does come with a lot of practice...but given time, the vast majority of people can get that degree of control. You need to work at it and listen to your body and learn how your prosthesis responds...but at the end of the day, you're the important part...you're the driver of the 'huge 4x4 car'!

Lizzie :)

Share this post


Link to post
Share on other sites

Thomas you're perfectly right. It isn't the leg (or arm) that gets us up and going again it's our own will.

Nike almost got it right when they said Just Do It.

Just Have A Go!!

People will never ever know what they are capable of unless they give things a try, and there are so many different ways of doing things if you miss on the first try.

(Once again reaches for the orbital sander and a pair of stillettoes :lol: :lol: :lol: :lol: :lol: )

Cat

Share this post


Link to post
Share on other sites
I just got my prosthesis 2 weeks ago and I feel I'm doing miserably with it. I see the show "rebuilt" and look to those amputees that are using their prosthetics so gracefully and think "am I ever going to get to that point" "why does it hurt so bad" "I'll never be able to walk in this heavy thing" and then the tears come flowing and I wish all over again that I didn't lose my leg.

Little, and often GreyHound Girl, you will get there, it just takes practice.

A little while ago my son was complaining he "couldn't do something" that he had only just begun doing (can't remember what it was), I used the analogy of his swimming to explain this concept to him (he has had swimming lessons since he was young and now 15 is a strong swimmer), but when he started to learn he couldn't swim a stroke.

Just stick at it, do a little every day and gradually build it up so you wear it longer and longer. I am sure you will get there, if it continues to hurt or rub in a certain spot let your prosthetist know, it may need adjusting. I was 12 when I first got mine they were heavy and cumbersome and I hated wearing them to start with, I had tears too, but I was still in hospital and the physio's made me wear them. 30 odd years later, I am really glad they did.

Ann

Share this post


Link to post
Share on other sites

Hello Ally;

WOW!!!!!!!!!! This was some great reading and what a subject. Great job Ally. I've been thinking about this for the last 4 hours and still have 40,000 things going through my head. Good job to everyone on there answers, I learned alot.

As for me I agree with you 100%. I've been to many hospitals and done many seminars, danced all over the U.S. for many handicapped people and still not sure of the answer. One thing that would be nice is if there was a way to hit a new amputee with this forum right away. They need so much input and done right is so important. I've seen there faces right after and it always brings a tear to my eye. There so afraid, not so sure whats next and for many being talked to by able bodied people and even then some that are new to it themselves. This is one of the best forums I've come across and try to recommend it as much as I can (so versatil).

Me personally, I was lucky, let me explain. First of all I grew up with a Mom that was a psychiatric nurse and used to bring home unfortunate children, ones that were beaten by there drug parents ect... and that always made me feel very fortunate so, attitude is a big factor here, even at an early age. Second I had alot going for me when I lost it (College Graduate, Dance instructor (my own school), semi-pro football player(week ends Conn. Giants), ran everyday, worked at my uncles firm and was on there softball team, just married nine months, left work early to get my Modeling Portfolio done that day(500.00 dollars wasted))then jumped on my motorcycle to head to the softball game and never made it(lady went through a stop sign and took it off at the scene by backing up off of me) when I woke up or at least should say when I could comprehend what was happening I had the most positive friends and family all around me. They were telling me things like you didn't loose your head so your all set ect...but, if I did they new I would figure away around it. On top of that I turn on the television and the first thing I see is a program about a canadian man with one leg (cancer) dipping is artificial leg into the Atlantic Ocean and getting ready to run across the country to raise money with the goal to run to California and dip it into the Pacific Ocean, how much luckier can I get. Two months later and twelve operations a man walks into my room to talk to me about prosthetics, I give him a hard time, he drops his pants and behold 2 above knee artificial legs(remember this was over twenty five years ago), he was the coach of the Connecticut Spoke Benders (wheelchair basketball team).

So, was I unrealistic !!!!!!!!!! you bet!!!!!!! Still wouldn't give up all those people and all that positive energy for the world. Got back out into the world and started on the wheelchair basketball team (met many vets more unfortunate than me), then the first leg came(didn't have a choice of who, the hospital assigned), went and put in on and sat down only to see the knee was 4 inches longer than the other one and started crying(prosthetist messed up on measuring), he tried to convince me that was normal, I argued and found out later that he had done it has cheaply as possible(insurance) and didn't have room to re-make it. Did get it corrected and quit the wheelchair team because I felt I wanted to walk more and stay away from the wheelchair. Walked up and down the hallway for 2 years with a mirror on the end and trying to perfect my gate. Then came a son, used to put him on my shoulders and walk up and down the street. Challenge after Challenge and now all I've acomplished up to today. So much more to tell but, would be writing all day.

Wish so many people could get just some of the luck I had and then again some of us just make our own luck.

So I guess my point for me is that I believe without being so unrealistic would I have made such an effort to drive towards being realistic, this is where we can help everyone. Without all our stories and personalities this would always come out different but, one thing for sure we all need to work at getting it to the public ahead of schedule instead of following up from behind. I sent my son to College for film production and he now owns and operates Mindspin Productions (has many famous productions behind him) and he's only 24 (proud dad, I'd say so) anyways hoping with his help and maybe some of all of ours would like to see some sort of our own reality show on television, we need to break out, take control and hope that someday we won't have to ask the question "Are new amputees unrealistic"

Positive attitude cures

Again great job Ally

Hope this helps

Sincerely

Pete Brockett Jr

Connecticut, USA

Share this post


Link to post
Share on other sites
Wish so many people could get just some of the luck I had and then again some of us just make our own luck.

Pete,

That is such an amazing attitude to maintain. I am always so humbled when I meet people who can say this, when they have to stand in the face of adversity every day themselves.

It makes me feel blessed.

How awesome is that.....you feel blessed, and you tell me. And that makes me feel blessed. Talk about the circle of life....

:)

Share this post


Link to post
Share on other sites

I'll admit that I had unrealistic expectations to begin with too but don't necessarilly feel that was a bad thing.

I'd been in critical care for a week after my car accident, with four operations to try and save my leg in that time. I was on alot of drugs so the memory is blurry but I can remember my leg being in alot of pain.

My Consultant came to see me one morning to explain that my leg needed to be amputated and told me how I'd be able to get a prosthetic leg fitted and that people can do marvelous things with them. Since I was in so much pain and they'd already tried so many times without success to save my leg, I accepted that it had to go. The operation was that afternoon so I didn't have much time to think about it.

I'd never heard the word prosthetic before and thought it sounded very high tech, I was expecting a leg something like Darth Vaders! I was expecting the amputation to be that day and then a month or so later I'd go in for another operation to have some sort of mechanical leg attached and just walk out of hospital after that! If the consultant had said the words "false leg", my hopes would've been very different but then I wouldn't have been so keen to have the operation and as the operation was needed to save my life then I'm glad I had it!

A week or so after the amputation, once I was on a normal ward and a bit more with it they arranged for the Doctor from the Limb Centre to come out and see me and explain alot more how things worked. This did bring me crashing back down to earth and feeling down for a while but not for long as when I first saw my physio she explained that he was a very pessimistic Doctor and that I'd be fine!

Everyone kept telling me that everything would be ok when I got my leg. This gave me the drive I needed to get on and do my exercises so wasn't a bad thing.

Once I got my leg I came crashing down to earth yet again. It got me really down in the first week of having it. I remember looking at it and getting depressed thinking that dead lifeless lump of metal was my leg and it was going to be for the rest of my life. It did get me very down but then I hunted around the internet and found that better legs were available and also worked out how to work the knee I had so started feeling better again.

If I'd have realised back then in December that I'd still be using sticks to get around now and having to go back to the Limb Centre every few weeks to get the leg adjusted as my stump shrinks I wouldn't have been feeling so positive either.

A possitive attitude is one of the main things which has helped me through all this, if I'd have known everything at the start then I wouldn't have been so optimistic so am glad that I didn't.

That's enough of my rambling!

Kev

Share this post


Link to post
Share on other sites
Guest bearlover

I Dont't know if I would call unrealistic. But in my situation I found out I was mislead big time by my Dr. who amputated my leg. I had a life time of pain and many unsuccessful operations. I had very limited mobilty and pain. I wore a brace on my leg since infancy. I developed a bone infection that was life threating. When my Dr. Told me I neede a amputation he told me "Iam going to give you a life you never had, you will be active and happy and pain free and the way I do surgery you will never have any phantom pain. you will see. and I am saving your life too" Those were his exact words to me and my husband. So I thought wow! this will be great! So far it has been anything but! Iam more linited than ever. Iam much worsr off then I ever was :( I have constant phantom pain 24/7. It has been a totla night mare. Iam having prlonged problems. I push my self hard to try to get bettter. So hard I had a major set back and became real sick. Iam till struggling it will be 3 years this July 14th. I have come a long way since then. But I am not even close to whear I want to be or should be. My Dr. failed to tell me may facts about amputation. My prosthetist is up set by the way I was mislead. I never talked to a prosthetist before the amputation. I think my Dr. is the one who was unrealistic about a amputation. :wub: All I can do is keep on trying!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×