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Heather Mills - Amputee Forum
Ally

Are new amputees unrealistic?

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Hello forum friends

I have published a new article on my website, but I think I would like to temper it with views and opinions from other amputees.

If you have the time, please read through the article, and then post a comment for me. I will pick them up in a while, and publish them on the same page as my article. If you would just mention your name (to be published) and how long you have been an amp for, plus your thoughts on the subject, I would really appriciate it.

Thanks in advance

Ally

Unrealistic Expectations ?

There is a problem, I believe, with the whole amputee/prosthetic industry at the moment.

The only amputees any able bodied person ever gets to see, are those paralympic superstars, wearing impossibly expensive prostheses, and achieving incredible, and mostly impossible, feats.

Then along comes the new amputee and his family. No problem, surely, they think. We've seen what technology can offer, we've seen how amputees are able to cope and walk without even a glitch! We shall get an arty leg, and go skipping off into the sunset. By next week. Surely.

Not so. Not so. With this type of stereotypical thinking, the new amputee is set up for failure before he even gets started. He expects far too much, far too soon. How can he not? We already know that new amputees very seldom get all the information they need. They are not given realistic facts about starting off as a new amputee.

Why don't we see documentaries on TV on "a day in the life of an ordinary amputee". Why don't we see the amputee trying to catch a bus, or get onto the tube? Why don't we see an amputee paralysed with fear when he reaches a busy escalator? Why don't we wait and watch with trepidation, as an amputee tries to cross a busy street? Why don't we go shopping with an amputee, and only buy stuff that's not heavy, that's easy to get from the car into the home? How about a casual stroll in the bush? Oh get real. Any ordinary amputee will catch his breath and wonder when (not IF) he is going to stumble on the uneven ground. And who ever thinks about heel height as their first and only priority when they shop for shoes?

Let's not even start on the expense. I will bet my last damn dime that any able bodied person thinks that the cheapest limb costs a quarter of what it actually does. A quarter, if they are generous in their assumptions.

Reality and fantasy are poles apart, so far that a new amputee will blame himself for not "skipping off into the sunset". Surely. Everyone else is doing it, aren't they? Double above knee amputees can run faster then able bodied people. They walk without a limp. There must be something wrong with me. Perhaps I am not good enough, or maybe I will never be able to get this right. Nobody else battles like this, do they?

My prosthetist told me the other day that the worst patients he has are new ones. He says they expect too much. I understand that.

Perhaps if society continues to portray us as light footed and happy skippers, nobody will have to address the BASE issues of being an amputee. Like parking, and stairs, slippery supermarket floors and the cost of getting yourself walking (just ambling, not running or leaping). Nobody will have to fund any research into phantom pain, because as we all know and have been told, it dissipates with time. Well, tell that to a trauma amputee who is still alive and kicking 40 to 50 years after his leg gets "lost".

If we arm a new amputee with this information : that he will be slow in the beginning, that his first prosthesis will make him think that his leg is going to explode, that he will soon face his first (and not last) fall and it will be frightening, that his first real arty leg isn't going to be a top-end technological wonder because socket fit is more important than anything else; if we warn the amputee, then his chances of attaining a smooth transition to the life of an active amputee are so much greater.

We need to give the new amputee a realistic view of what to expect.

If you know what to expect, if you vow not to be taken prisoner by fear, if you have a plan, then I believe with my whole heart that you can do whatever you want to.

If you are educated about who and what you are, you will be limited only by your own boundaries. Nothing and no-one can stand in your way.

It is your absolute right, as a new amputee, to be armed with the correct information - realistically speaking.

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Hi Ally

There is so much more I would like to say on this subject, but I don't wish to offend anyone, so I shall just stick to my main points:

* I think there is a problem with generalising, as every amputee is different; we're different people, who lose limbs for different reasons, we have different cultural backgrounds and (depending on where we live and our income and/or insurance) we have different healthcare options available to us...the list is endless...

* I agree that a new amputee needs to be well informed and feel in control of their treatment. However, the ability of someone to be well informed has to be tempered firstly by that person's capacity to understand (e.g. intelligence, emotional well being...etc), and secondly by their prosthetist's ability to communicate information. In the end it all comes down to relationships and communication.

* I see no reason why we shouldn't value people, who have a disability (whether it be an amputation or not) and who excell at sports or physical activities, just as we value people who excell in mathematics, sciences, english, history...etc. After all they have an innate ability and that ability should be celebrated. I don't believe that celebrating people with amputations who are successful in a sport, means that every person with the same amputation should believe that with the right prosthesis and rehab, they will ultimately be able to be successful in the same way too. OK, they can dream about being as successful, as everyone needs their dreams, but for the vast majority of amputees, it is unrealistic - if only for the simple reason that the majority of amputees are elderly.

* I am personally more impressed to hear that a new amputee has managed to walk down the parrallel bars for the first time, than I am to hear that Oscar Pistorius has won another race. At the same time, I don't think we should dismiss his effort. I think amputees as a group, need to celebrate other amputees achievements (that's why I like this forum so much), no matter how big or small. After all, everything is relative in this life, isn't it? Achievements and limitations should be seen in perspective.

* I don't see a problem with the amputee/prosthetics industry, as it (as well as the limbs) has improved so much over the years I have been an amputee (approx 40 yrs), to be almost unrecognisable! However, I have a big problem about the cost of prostheses and prosthetic components, which I understand is largely down to the practices of large corporations such as the NHS and health insurance companies.

Lizzie :)

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Thanks Lizzie - I will attach that to my rant on my website. Word for word.

And you are right, of course. I never meant to undermine our athletes, just slate the way we treat new amps

:)

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Ally I totally agree with Lizzie.

As much as I complain about my SACH foot and fitting disasters I am in awe most of the time at how the industry has evolved. I've been watching it close up for nearly 40 years and can still remember the dark dingy places where I got my first few legs. The buzz saw they used to get my cast off that terrified me when I was little.

I too agree that new amputees need to be given Knowledge and helped to understand the restrictions they may face in the beginning. I say MAY face because we are all different. But they also need to be told what is POSSIBLE. People need to have goals and dreams and I for one would never deny any person those goals. Better to aim for the sky and only reach the clouds than not try at all.

I think the cost and availability of components is sometimes the only thing that holds us up and that's the one area that new Amps need to be informed and that's the one thing that needs to change the most.

Given the opportunity we CAN do ANYTHING.

*jumps off my soap box and takes a few breaths*

Cat

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B) Ally, Cathrine & Lizzy.......you all have said everything I have thought for along time. When amputation happens to you - you think you will just walk out of the prosthetists office perfectly...that's not going to happen....not without alot of practice.

Cost if unreal...most amps nearly hit the floor when its cost is added up. :blink::blink:

You have done a great job !!!

:P :D eag(ann)

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Wow Ally,

I think I fit into every category here. I’m a new amp just 5 months with a prosthetic. But let me say right here and now, I have very high expectation of myself and a high expectation of my prosthetist.

However because of the support I received from the Physio team I had a realistic outlook on what was achievable. Their pragmatic approach to rehabilitation ensured that I got no ideas of charging off at a blistering pace and setting world records. Quite the opposite in fact. I was told what my limitations would be, and that getting me upright and walking would be a major achievement in the short term never mind anything else.

As far as being informed was concerned, I made it my business to be informed, I read lots and asked questions, I downloaded information. I was awash with information when I had my first meeting with my prosthetist and she appreciated that, it made for the basis of a good relationship.

Lizzie made the point about the dangers of generalisation. Well I subscribe to that theory, we are all different. Different in our aims and ambitions. Different in our abilities. Different in our mental attitude. Different in our acceptance of what has befallen us.

Prior to my amputation I was extremely fit. Sport over the years had played a major part in my life and believe me when I tell you I have never been beaten by anything. If I was not the best I could be then I would be harder on myself than anyone else ever could. The point I’m trying to make here is, this was the attitude and determination I took with me into the world of being an amputee. This was something else that was not going to beat me.

The physio’s warned me that I would not be skipping off into the sunset by next week. But I was determined that I bloody well would, and I was not going to settle for anything less. It hasn’t worked out quite that way but it’s not far off.

I would like to think that my determination has paid dividends. I now have a leg that allows me to do most things. This has only been made possible because I have justified the need for such expense. I have no idea what it might have cost and I guess I can thank the wonderful (when it works) NHS system we have here.

Ally you are so right about giving the new amputee a realistic information I was so fortunate to be told the realities in advance. But this knowledge of limitations made for a greater feeling of achievement when I exceeded them.

I have no idea of where I fit into the great scheme of things, whether I have achieved more or less than the average, I don’t even know how you would determine average.

Being told by friends, family and colleagues how well I’m doing means I don’t know what part of the picture I help to paint, am I your happy skipper and doing a disservice to the cause ?

What I do know from my very short time as an amputee is that any new amp should be encouraged to achieve. To go beyond the boundaries, and I wish I could help a few along the way.

Ally, a thought provoking and useful debate, I just hope as a newbie my experience and comments are considered to be worthwhile .

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Ally

I really don't know how to respond, so I'll just start talking for a minute.

I don't remember having any expectations. I had hoped that the first aortagram would open my arteries so that I could walk without pain. Then I hoped that the aorta-femoral bypass would give the legs the supply of blood needed to walk normal.

When it came loose, (the graft), I hoped that I would be out the next morning with it fixed. I got out a month later without a foot, BUT - I had circulation.

Like Mike, I was always physically active. I just didn't think that there wasn't anything that I couldn't do - once my leg healed. It was a minor inconvenience.

There was no one to talk to about all of this. My CP was an AKA, and quite frankly, a pompus ass. We did not get along at all. He had lost his leg in Guyana at the Jim Jones cult thing there in the '70's, while in the AF. He started talking to me like he was a first Sgt., (which he never was, only a private), and I had to let him know that I had outranked him and not to talk to me like that ever again.

When I finally got my first leg, I went home and started terracing the slope in our back yard with a pick and shovel, for my wife to plant a garden.

While I still had my cast on, I was outside with the blower, cleaning the driveway off, climbing the ladder to get on the roof, one foot and one knee at a time, and going out on my 50cc scooter that we had to go camping with. I would get in my car and put my stump on the console and drive with my left foot, until I got my leg and then, as well as now, I drove away with my prosthesis.

I HAVE NEVER THOUGHT AMPUTEE!! Any more than I think late 60's, (which I am), or anything else. I am just a guy with one short leg, that I make up for with an item called a prosthesis, that evens me up.

It's my circulation that slows me down today - not my leg. I have totally rebuilt a 1/2 acre property here in Missoui, building a complete guest house from the ground up, with a 5' tiled custom shower and bathroom, doing all of the work, ie; plumbing, framing, wiring, tileing, sheetrock, roofing, painting and carpeting all by myself (and my wifes help as she could).

I then tackled the house, and reguilt every room, with beam ceilings, vaulted areas, with custom tiled showers, and boxed in clawfoot tub, with a handicapped 4' tiled shower for me. I have also completly rewired and replumbed the house.

All of this while going through my 16th to 43rd operations, one of which was the loss of a kidney taking out the deseased aorta-femoral bypass that started all of this. There were also 3 major infections, and a heart attack, with placement of a stent. I had pushed so hard working on the house with chest pains, that one heart artery that was closing up built it's own colaterals. I also whipped gangrene of my big toe on the good leg during this time.

I have pretty much got my heart angina under control now where I am looking at one back family room that still needs to be remodeled, and finish the fine work on the kitchen, which I started in '96 when my toe was gangrene and I thought that I was going to lose the other foot. My wife promised to be my hands and strength because I was so loaded with morphine for the pain, but I wanted to get to a certain stage before I lost my last foot.

You know, I hear about all of the atheletes, and I am impressed - Not because they are atheletes, but because they are using their potential - That's all. Like Lizzie said:

"I am personally more impressed to hear that a new amputee has managed to walk down the parrallel bars for the first time, than I am to hear that Oscar Pistorius has won another race."

Lesley out roller skating -THAT'S IMPRESSIVE I don't care how many times she fell. By God, she tried. That's what impresses me.

I hear of people who dance or drive race cars, and I say "that's great, he's doing his thing", but I'm no more excited than someone who went to the shopping mall alone for the first time. Now, THAT takes guts.

Don't misunderstand- I'M ALSO NO LESS EXCITED. The one dancing and driving cars, first had to learn to walk to the mall.

Some may not ever get past the mall - but they tried.

Mike said it very well, when he said:

"What I do know from my very short time as an amputee is that any new amp should be encouraged to achieve. To go beyond the boundaries, and I wish I could help a few along the way."

To bring this "short" note to a close: Each day, I just get up and work the best with what I've got. My prayers are always for those who don't have as much as I have, and gratitude and thanks for what I do. My life goes on.

None of this was designed to make sense. I just sat down and started to type. I'm not even going to re-read it before I post. It's what I felt, and I hope it is somewhere close to what you are asking for.

Your doing a good thing. Keep it up. I'm proud to know you.

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Hi Ally

This is a really difficult one to answer because I sometimes do read stuff by new amputees and think that maybe they are expecting quite a lot, in a short space of time, however, thinking back though maybe I was also like that, it was just such a long time ago I don't remember.

I can't really remember what my expectations were, probably just to walk. The whole process of recovering from operations, getting fitted with limbs,seemed to take much longer 35 yrs. ago. As I may have mentioned before, the first limbs I had were pylons, they in no way resembled the limbs of today, was fitted with them 4 or 5 months after my accident, but it was so good to be walking again and wore these back to school which got me into the swing of things.

When I first saw someone wearing pylons, they weren't quite what I envisaged, however my prosthetist very quickly introduced me to an 18 yr old, who had been a bilateral since very young, she was at the limb centre with her mum and fiancee, she walked very well, and they told me YOU WILL WALK like she does eventually. It was probably one of the best things they could have done as my family and I had had no contact with other amputees and even though it gave me and my family quite high expectations, it did give me something to strive for. I actually found it jolly hard work learning to walk and went through processes of diff. limbs, crutches, etc. so I think I realized pretty quickly it wasn't going to be an overnight thing!

I think today, sorry starting to sound like an oldie here, everything moves at a much quicker pace, we all expect everything much quicker, not just limbs, so maybe its not so surprising new amputees have very high expectations. Combined with that things are much more visible, which is a good thing, so we switch on the TV and see atheletes etc. However, as has been said before, we are all different. Not all able bodied people become atheletes.

What I have come up against, in more recent years though, is the low expectations of the medical fraternity, probably established on the basis of cost, which I find really depressing.

Ann

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Ally, I go one for ages.

For starters the media / television.

While trying to launch Limbs 4 Life and get some media attention I began to realise just how difficult this task was;

I was told that people (the Joe public) are not interested in stories like this because they cannot relate. The average person doesn't believe it will happen to them. So while they may watch and think "Isn't that awful" they're time span to remember such a thing is nil

Second, loosing a limb is not glamourous or sexy hence that's what people want; yes there are exceptions (models) but how many of us amps are model material? ?

Thirdly stories of people(unless it's ugly or violent) are not interesting if you are over the age of 21.

So those are the media barriers I have come up against and when you think about it the sporting paralympian guys don't really get much attention either when you compare it to a non disabled "sporting legend."

Personally I had heaps of goals many unrealistic many achievealbe. I know that when I first expressed them to my rehab team they thought I was insane. However that drive and determination has got me along way faster than any medico ever imagined.

One of my goals was to wear a mini, (I thought I'd get a Heather leg), the other was to get back on a dance floor-chances are I'll never do either of these again; but reality hits when you first get that leg on and realise what you can do, what will be hard, what will be easy and most of all what's really really important.

I had a reality check fairly early in the peace and got my stuff into perpective. I don't really dwell on the things I can't do and frankly I was the one who gave me a false sense of things - not anyone else. No one ever promised me that I could do things I couldn't.

Mel.

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Ally,

you ask “are new amputees unrealistic”

It’s kind of impossible to have realistic expectations when you are having an 'unreal' part attached to you. Nothing can ever replace the real thing, obviously. It’s how you deal with the transition which determines your success of living with it.

Everyone is different and has different expectations, standards, motivations, outlooks (positive or negative), financial status to afford a decent pros, flexibility to change, willingness to move forward, cultural influences and on and on and on…..

I was a child when I got my first pros so I have kind of grown into it and have seen prosthetics, on the whole, make terrific advancements over the last 25 years, allowing amputees to be “able"-bodied today. To be fully involved in life. Ofcourse, it will never beat the real thing but we need to have the capacity to accept this and find alternative ways of doing things. The positive mind set has an amazing effect over this too.

I don’t find it such a bad thing to “advertise” amputi-ism with the maximum someone can achieve (sports) It’s left to each and every individual what benefits he or she can gain by seeing this but it’s necessary to have the wisdom to recognize what can and what can’t be translated into our own lives. If this accident happened to me now I would prefer to see what can be done rather seeing what can’t be done and make my own judgement of where my limits and potentials lay.

Oops, i just thought of something i's like to add.

I think it's also a different experience losing a limb as an adult. Ofcourse, the trauma is still great but as a child you learn to adapt easier, i think. As an adult you are set in your ways, know your body. Adjusting may take a bit longer, i can imagine.

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Hi Ally,

I have now been an amputee for just over a year, and got my prosthesis just over 6 months ago.

My experience of the whole process has generally been that it is possible to do anything that I put my mind to, but it has taken me a little longer to put my mind to some things than I thought it would at the beginning.

I remember the day I first thought it was a possibility that I might lose my leg my first thought was - never mind I will just get a prosthetic leg and everything will be fine. Having never had to deal with trying to walk on a prosthetic leg, I just didn't have any concept of what it was going to feel like, or how difficult/easy things were going to be.

I then spent 6 months on crutches, and managed to get to the stage with them where I could basically do anything I needed to - I was working full days, going out at the weekends, and "walking" fairly decent distances by the end. Obvioiusly, I couldn't go for my 3 times a week run on the treadmill anymore, but I managed to do everything I set myself the challenge of doing, and often surprised myself when I found out I could still do it.

Still, in the back of my mind all that time was the misguided (looking back) concept that once I got the leg, everything would be totally back to normal. I just never really thought that anything I used to do would now be more difficult for me.

Then I got the leg, and, as Mel says, came down to reality with a sharp bump. Since then things have improved tremendously, and on a good day I would genuinely say that all is as it was before. However, there are bad days, and although they are getting less and less frequent, they feel like huge set backs and are incredibly depressing every time they happen.

And no I definitely didn't think that, a year on, I would still occasionally be getting taxis to work, and still begging my boyfriend for a cup of tea from the comfort of the couch in the evening, because my leg would hurt too much to do it myself, so yes in a way I think I did expect too much at the beginning. But only really through ignorance, and not ignorance that could have been cured by someone trying to reduce my expectations, simply the ignorance of never having been in this situation and not having any idea what I could expect the leg to feel like.

But then again, as I said before, I have not failed to live up to my pre-leg expectations in any way really. I have not once been in a situation where I have tried to do something, really put my mind to it, and been unable to do it. The requests for cups of tea and taxis to work are really now just there because I have got a bit lazy (shame on me) - not because I can't actually do it. It is just easier for someone else to (terrible to admit I know).

As a result I have booked the bike trip thing across Vietnam and Cambodia for November. I have no idea whether I will be able to do it or not, but reckon that, based on my experiences since I got the leg, the likelihood is that I will.

So, in answer to your questions, yes I do think that expectations are unrealistic prior to getting the leg, but that, for me anyway, is really only due to the fact that people have no idea what to expect from the leg, and no point of reference before they get the leg as to how it will feel/ what their limitations will be.

And finally, I believe that expectations are really a two way thing. Everything in life requires input from the person themselves. No able bodied person is magically able to run a marathon, or climb mount everest without putting a hell of a lot of work and practice in themselves, and that is also the case for amputees. I wouldn't be able to do my bike ride across Vietnam and Cambodia today if I had to, but it is my expectation that with a bit of determination and will power and a LOT of practice, I will manage it in November.

Hope that made sense!!

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Well, this is a subject that I can not resist and I do have very strong personal opinions along this subject.

I went through the whole physiotherapist process doing what I was told, doing what I understood would be necessary for me to “walk again”. In the early stages, my wife was told that I should be “out of here” in about five months”. I failed that time limit and it hurt my family as well as myself. In my case, I would end up spending a total of two years to get to a discharge stage.

And what is the discharge stage? Nobody stated what that was until it happened. I have seen many other people discharged out of the middle of nowhere without warning and boy where they caught off guard about it. I believe the “discharge stage” should be part of an initial process, not an unexpected final step.

I also have been told by the physiotherapists here, that 90% of all prosthetic devices end up in a closet somewhere soon after the patients go home. Why is this? I am sure a large part of it is from “undefined or incorrect” expectations (again, a part of the process).

The initial step of a new amp’s life is their involvement with their physiotherapists. This person is the one who answers the questions and is responsible to a great degree with the results.

I have had the opportunity to attend a couple of classes of new physiotherapists as an invited speaker. I would tell them my story, talk on a facet of a subject as directed from the instructor and then answer questions from the gallery. Of course I had to answer questions like “What’s it like to be an amputee?” My answer “It sucks”. The other common question; “What makes a good physiotherapist?” My answer, “One who has good time management and very realistic MINIMUM goals for the patient”.

As an ex military man, I am used to “checklists” to cover my butt. Follow the checklist and you will be ok in the event of a problem. Don’t follow the checklist and your ass is grass!

These are my checklists that I tried to ingrain on those new students:

Before Receiving an Arty Limb

-Outline the stages the new amp will have to go through BEFORE they will get to the stage of an arty leg.

-Explain each step and ensure the patient understands what you are saying.

-State MINIMAL time lines to get to each step as well as stating factors that can affect these times.

-State the MINIMAL effort required by the patient to accomplish before being considered for an arty limb.

Once an Arty Limb has been Received:

-Out line the stages the new amp will have to go through BEFORE they even start their first use of the limb.

-Explain each step and ensure the patient understands what you are saying.

-State the MINIMAL efforts and goals required by the patient to accomplish before being using the arty limb.

-Always tell a patient “the LEAST EXPECTATION that they will be absolutely be capable of doing.

-Tell a patient they should or may be able to do more. but it will be solely up to them.

-STATE THE MINIMAL GOALS AND REQUIREMENTS FOR DISCHARGE FROM THE HOSPITAL.

-Ensure the patient understands these requirements are MINIM UM and that as soon as they are attained, the patient WILL be discharged.

Here in this part of the world, once a patient is able to stand up, get around a bit, take off and put on their arty limb.............................they are considered finished and are discharged to be what they will be. I think all need to know the truly MINIMAL and ATTAINABLE.............................well in advance.

Anything beyond that.........is gravy.

ED

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This is fabulous, and I will be adding it shortly.

Thank you everyone for contributing.

Man, I love this forum :)

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I admit that I expected too much in the beginning. Reality struck soon enough. Things weren't too bad before the pros because I had gotten used to crutches before the amputation. I was already working again and needed the leg for ease in getting around. I'm a hairstylist and managing the shampoo bowl was very hard. I was given the leg on Thursday and told not to do too much for a few days. That was it. No sock management training, nothing about what to expect or how to remedy the pain. I pretty well figured it out on my own by Sunday. Walked without crutches that day and everyday since. I had one session with a PT, but he said I walked so well that he couldn't help me any. That was two weeks after getting the leg.

There is a total failure in the system. Our support group is trying to figure out how to get to the patients in the early days after amputation. We have developed a folder with some pertinent information for the early days. It includes the First Steps magazine that the ACA publishes. This publication includes many of the things that Ed describes above. I've visited the head of nursing on the orthopedic floor where I had my surgery. She said that she would hand out our info and let me know when a new amputee comes in. I also spoke with the man who supervises the therapy at the same hospital. He admits that they should be referring people to us, but it just seems to fall through the cracks. That was in the summer of 2005 and we haven't heard a word from them. This is the largest hospital in Oklahoma. We aren't getting much help. I'm a certified peer visitor and really enjoy visiting with new amputees. I wasn't given that option and felt that it would have helped a great deal. We have 5 major hospitals in town and only two utilize our services.

The ultimate responsibility should lie with the docs who are doing the amputation, but they can't be bothered. They are too busy.

I was seen by a physiatrist who coordinated my therapy. He would be the next best bet, but again, he is overworked and can't be bothered.

The floor nurses are next, but I've spoken with all three head nurses who cared for me and still got nowhere.

We've been told to go through the social worker, but again, failure.

Peer visits are the only way to get the message across to new amputees and we can't even get our foot in the door in many cases. Our support group is growing and we have many knowledgeable people as members. We get most of our referrals from our facilitator who happens to be a therapist at one of the major hospitals here.

Where we go from here? I don't know. Aside from daily visits to medical centers to see if there are any new patients, which is totally absurd, I guess that most will just fall through the cracks and find help if they need it.

Sorry for the rant. This is something I feel very strongly about. Peer support is one of the best, free services out there and it goes underutilized.

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I have to say that I had totally unrealistic expectations. Like Mel, I thought I would get a Heather leg and everything would be just fine. That's what I told myself. I can't believe how utterly clueless I was. The thing is, you don't know what you don't know.

I'm with Neal on the peer visitor thing. How I wish someone would have visited me. Perhaps a visit would have given some insight. I wonder if maybe the reason the doctors, nurses, etc. don't contact peer visitors, at least in the US, is because of the crazy HIPPA law. The hospital will hardly let your priest come see you!

That's where this forum comes into it for me. This is where I finally got some information. I mean, I didn't even know the questions to ask.

There have been times (I think I've mentioned this before) when someone has said to me something like can you believe you've done so well and my response is that actually I thought I'd do better.

So as for me, yes, I had unrealistic expectations.

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I wonder if maybe the reason the doctors, nurses, etc. don't contact peer visitors, at least in the US, is because of the crazy HIPPA law. The hospital will hardly let your priest come see you!

It's like that in the UK now. It's up to the hospital staff to tell the patient who they can ask to visit them. It's then up to the patient to ask for who they want to visit them. The problem is that some hospitals are better at passing on information to their patients, than others.

Lizzie :)

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Marcia, I'm of mixed opinions of the peer visits; I had 2 and it was fantastic I also have peer support volunteers which we have trained to do the same-amps visiting new amps. It made a huge difference to my recovery even though both were below knee and I was above; I never expected to do the same as them-it was pretty much clear to me from the onset.

I should also state that we have full insurance for our volunteers too.

I think the problem of visiting has a bit to do with power. If you've never seen an amp before you have no idea what to expect it's an unknown ground; so if the medico's say something you believe them-good-bad-indifferent. I find though that there is a fear which exists where if we send in our volunteers and the patients ask too many questions then they have the power. It's weird but time and time again people say to me that they would have loved to have met someone. Well...all the information is there and why are they so discouraged to pass it on.

Bigtime break down in the system and I'm unsure of the reason-no one in that position is ever going to answer it for me either.

Mel.

Marcia one day we'll get the lotto, get our Heather legs which by that time will work like magic and things will be grand.................such a big dreamer HEY! :D

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Hi Ally;

As I will become a new amp this year, your question strikes at the foundation of my concerns.

I'm so lucky to have found this forum, to have read so many stories and gained so much knowledge from them and the replies to my questions, but I would still like to know more about possible outcomes, in a concise way. My problem is that I'm finding it all too easy to be overwhelmed by the concept of what's going to happen to me, and in the absence of clear descriptions of "difficulties" and "potential achievements", it's really hard to have a clear idea of my future.

Obviously, we're all different, but there must be a spectrum of possible problems and realistic eventual outcmes in terms of ability for each type of amputation, and I'd like to see that set down so I can use it for basic reference, and so I can imagine myself somewhere on the scale between the best and worst case scenarios - it's the details I need.

I know I'll never run marathons because my knee is too unstable and my hip is too arthritic, so that rules out the superhuman-amp stuff for me, and knowing this may make my expectations more realistic, but there's still a vacuum in my imagination of what my life will be like - I really need the concepts of "difficulty" and "potential achievement" to be as fully fleshed-out and elaborated as possible.

I appreciate that I represent a minority - elective amputees - but I nearly lost my foot in my original accident, and I'd resigned myself to working with that situation; but having escaped all that, my current choice leads into a vagueness that is really very frightening.

I'm most encouraged by Awesome Blue's statements:

...I was so fortunate to be told the realities in advance. But this knowledge of limitations made for a greater feeling of achievement when I exceeded them...  ...What I do know from my very short time as an amputee is that any new amp should be encouraged to achieve. To go beyond the boundaries...
- my problem is not being able to focus on precisely what my new realities, limitations, and boundaries will be - I think it would seem much less terrifying if I knew what I will be battling.

Reading this back, my elective perspective would seem to be one of fear born of ignorance of the nitty-gritty of future difficulties, but I think the availability of that detailed information would help me be able to picture how I might manage aspects of my amputee future, as well as help new non-elective amputees to acquire realistic expectations. Such information would also be able to inform amputees in the absence of peer visitors, so it's a hugely worthy project - thank you so much for initiating it, and I wish you the very best of luck with it.

Roz. :)

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Don't be too hard on yourself, Roz, elective amputation is no picnic! There's no one else but you to heap your emotions onto, when life gets tough! :o Sometimes the feelings (pre-op) can leave you feeling a bit 'hyper'...when I've been in similar situations I've often felt like how the Christopher Lloyd character in 'Back to the Future' looks! :rolleyes:

You're going to have a transtibial amp & I have been very impressed with your desire 'to know'; you've discovered loads of information for yourself & you understand it. With that knowledge, you have a good advantage compared to many prospective amps. As a result, your outlook is very good as the surgery will be done as you wish and you will have good pain relief.

Your rehab is something else to worry about, Roz. If you need to know what it will be like for you in the future, you need to talk with an amp who has had similar surgery and is around your age and fitness - you could ask Dorset Orthopaedic if they know of anyone who would be willing to talk to you. In the meantime, if I were you, I would be kind to myself and take each day as it comes. :)

Lizzie :)

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Thanks, Awesome Blue and Lizzie2;

I will, of course, take your advice!

I guess I am a bit of a worrier, and an impending amputation is great fuel for the fire!

But having read "You're Not Alone" from the Scott Sabolich company's information pack, and the excellent "Living With A Below-Knee Amputation" by Richard Riley, I've found that I like to seek solace in information in the quietest moments (like before going to sleep), and a project such as Ally's would provide yet more insight, and therefore help (...and it would prevent me from inflicting insomnia on some poor advising amp!).

I really would like to see something that tells it like it is - in ED-style, with military precision and no punches pulled!

As techniques change and technology evolves, this is something that would also require periodic updating, so this is probably a long-term project, Ally! This is the one area where Richard Riley's (2005) book is slightly wanting - he describes his own rehab and beyond in great detail, but because he lost his leg in 1974, much of what he describes in regard to his prostheses - by his own admission - wouldn't arise nowadays.

Over to you, Ally! I'm looking forward to some really good bed-time reading!

Roz. :)

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Hey, Mel - we'll jitterbug off into the sunset wearing our mini skirts and stilettos :P

Roz, as usual, Lizzie's advice was right on.

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:huh::huh: You know guys & gals.......after reading all the posts we have all been thru Hell and back. Most of us have not had any contact with amputees until we became one....that in its self is scary. Everyone (nurses, doctor) just told me that I wouldn't have any trouble walking just like I had before. I don't know, maybe at the time they thought that is what I needed to hear.

I just wish I had known of a forum like this. It would have helped me considerably. You all are so great & have so much knowledge...and I am so glad to have a place like this to come to.

:rolleyes::wub: (Eag) ann

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Hi Ally, great discussion, with terrific comments from all and now I'd like to add my own and hopefully not offend anyone. :)

I truly don't see amputees being set up for failure, do to paralympics or other accomplishments. I believe it gives them a feeling of hope that maybe one day they too could be in that position. I know as a child, I always dreamed of being an olympic skater, of course I never was, do to many different circumstances in my life, but I still enjoyed having that dream. Which is why I think most amputees understand, they may not have the best of everything, for whatever reason, to become a superstar paralympic, but I believe it's important for them and their family to see the possibility that are out there, should the oppurtunity arise. If not for having dreams, hope and wishes, what would be the point of having goals in life? I feel we all have a bit of realistic and unrealistic expectations in us, meaning we all look for and want the best of things to happen, :) but in reality, we also know that's not always possible. :(

However, I agree that many new amputees are not given enough facts, as to what may or may not lie ahead for them. Of course we know, this varies for each individual amputee according to their situation. For myself, I totally felt like I was given a leg and then sent home, nothing was said, as to what I may or may not experience in the near future and it was terribly frightening with all these different types of feelings I was having, such as pain/sensations/ phamton, emotional, lack of knowledge, etc. It just seemed like no one thought it that important to have a place where things could be shared by other amputees with similiar experiences. Not only for the amputee, but for the family as well, I mean after all they too are experiencing something totally new and frightening to them also. So I wrote a lettter to the Director of the Amputee Clinic, who was also my amputee Dr, delivered to him by my CP and explained my concern to him and after a while there were amputee group meetings. Now, rather my letter had an impact or not, I don't know and to me that's not important, all I do know is, now there's a place where realistic facts could be discussed in the open, for the amputee and family, should they make the decision to attend.

Life itself sometimes can be unrealistic and not just for amputees, Only that's where I believe parents/guardians have to play a role to educate themselves and the amputee as to what may or may not be ahead in life. As for the older amputees, yours truly ;) it happen to me at the age of 48 and turned 49, 5 days later. So perhaps age plays a little part in this as well. I wasn't unrealistic, b/c I didn't have a clue what to expect, to much to little... just didn't know. I only knew that I had a goal and that was to walk again and try to accomplish as much this time in my life, as I did before. So was I able to, mostly yes, only in a bit of a different way, but my determination wouldn't let me give up and did I have some really tough days, *you betcha*, but I'd try to stay possitive, which believe me wasn't to easy at times, especially when it came to running back and forth to my Prothestist and seem to be getting no where. :( Then one day, it all came together and here I am 10yrs later, UNSTOPABLE!!! :rolleyes: :lol: ;)

So to sum it up, "thank goodness their saying", :P :lol: To all amputees, new and others:

"Never say it's impossible, without first hand knowledge". :D

This is something I just thought up in my head and wanted to share:

To face reality is sometimes not an easy thing to do;

Knowing we may not like what we find and that it's true.

Perhaps looking the other way helps the pain inside;

But only until the day comes, when there's no where to hide.

Be PROUD of who you are, not who others want you to be;

This my friend, will give you the power to set yourself free. ;)

Sheila lbk

Maine USA

Keep Smiling :)

ps, to Kaz,

Becoming an adult amputee was a bit of a challenge to learn everything in a completely new way after 48 yrs of doing one way, but aside from that, I felt

very fortunate to have had those yrs, which many never get to experience. :)

Phew....... :wub:

post-7-1139364698.gif

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