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The Phantom of Pain - by Alistair Plint

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Unrealistic Expectations

I tend to be pig-headed about certain things that attack my heart. So in this case, I have thrown my opinions out to other amputees regarding this subject. So, I have written down my thoughts on the subject, and then attached all the responses from other amputees. Please read them - they are SO valid (and not necessarily in line with mine).

It was only after I threw this out, that I realised how strongly people felt about it. Please read it through, it is quite long - but worth it.

Ally - South Africa - 11 years - AKA

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.

Lizzie - many years - Bi-Lateral amp - UK

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

Catherine - Australia - BK - long long time

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

Eag - LBK - 2001

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 is unreal...most amps nearly hit the floor when its cost is added up.

AWESOME BLUE, LBK, JULY 05, UK

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.

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.

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 .

Jim - USA - June 88 - RBK

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.

Anne - bi-lateral BK - 1970 - UK

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.

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 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.

Mel - Australia - RAK 2003

Ally, I go on 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 achievable. 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.

Mmarie, USA, Dec 2003, RBK

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.

Eag, Jan 2001, LBK

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.

Marcus, Sterling UT, BK, 1988

Good question Ally. I don't think most amputees are unrealistic but most of what society sees is. The average amputee (older, diabetic or circulatory problems, etc) never makes it onto television or into the news. The daily struggles like a pesky ingrown hair aren't interesting enough to put into the news either. I'm sure that some misconceptions about amputees living 'lives without limitations' creep into the medical community and foster unrealistic expectations, but for the majority of amps they've already lived with enough pain to realize that they won't immediately jump out of their wheelchair after three years and run a marathon.

As far as personal experience goes. . .the doc that amputated my leg told me that I would never need a handicap placard for my car. He apparently just didn't understand that I'd be sore some days. Most of the time I'm just a normal (ok. . .abnormal) guy that happens to have one leg, but on some rare days every step is agonizing. I deserve the damn thing but try not to abuse it when I don't hurt.

Alcyone, RBK, 2004

I must say that ordinary people don’t know much about amputees and prosthetics. Some young amputees are also “marketing victims” and believe in some extraordinary products of some ortho companies. It’s abig 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 cheap beginner leg without problems can do almost everything – of course with better prosthetic it could be much easier.

I call 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 they 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 – “but, you have two prosthetic legs”.

Carol, Fertile MN, August 2003, RBK

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.

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 all kinds of people in all different situations. Absolutely love it!

Oneleggedtog, Scotland, RAK, October 1999

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 .

Greyhoundgirl, Maryland, August 2005, BK

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!

COOL LINKS

Chronic Pain Chronic pain management by Dr Mitchell

To be or not to be Active Living article by Kimberley Barreda

John Callahan Paraplegic humourist - not for the feint hearted

Disability sport in South Africa DISSA

THE ANGRY GIMP Awesome must read site!

Marco Du Plooy My Pretoria based prosthetist

Sleeve Art by Fred's Legs

Employment Guidelines from SA Dept of Labour for PWD's & employers

Amputee Resource - Al Pike CP

MAS Socket - information

Fly SA - Paragliding

Co LeDahu - Personal Website

Jam Ally Entertainment - where Ally works

Eric Morse - Para-sport photographer & friend (Canada)

 

 



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