Amputees,
Prosthetists & Responsibility
Hi,
here is my 2 cents worth regarding 'us', 'them', and our 'bits'.
Please bear in mind that I am an above knee amp and my opinions
are based purely on my own experiences.
Please
refresh your browser quickly, we update regularly.
95% OF QUESTIONS
SHOULD/COULD BE ANSWERED ONLINE BY A PROSTHETIST
Well, yes and no.
Could be, probably yes. Should be, I would swing more to the no
side there. Although most of my information comes from technical
sites regarding the mechanics of the bits, and the different options
out there, my life-information comes from other amputees.
When I got my first
leg, it was kind of like : here (a socket), here (a knee) and here
(a foot) - good luck and bye for now then. As a new amputee, how
do you know what to expect? You get this heavy equipment, and for
all intents and purposes, there is no way you can imagine that lugging
something like that around could be anything but uncomfortable.
So you resign yourself and try to cope as best you can. How can
you know any better? The prosthetist says "how does it feel?"
Where is the handbook on how to speak with this professional and
how do you know what an acceptable level of discomfort is? Unless
of course you are lucky enough to run into another veteran amputee
who you can chat to like a 'normal' person....
Having spoken with
a Certified Prosthetist, it is my understanding that there are legal
implications regarding offering on-line advice, which is such a
shame. To receive free and impartial professional opinions is worth
its weight in gold. So the CP's and CPO's out there who are willing
to assist us are being handcuffed and silenced by the powers that
be (depending on what area you practice from). What a shitty system!
THE ART
OF MAKING PROSTHETICS
When I first visited
my prosthetist (his name is Marco), he spent most of our scheduled
hour sitting with me, just explaining everything. This was NINE
YEARS after my amputation. I learned that I had a quad socket. I
learned where my ramus and ischium are. He explained how the socket
is designed, and how the prosthetist has to really tweak it right
at the end to ensure a personal and proper fit. That's when he called
it an ART. And it made sense to me. It is terrifying that any prosthetist
can approach his job with any other attitude. Al Pike (American
CP) says the new generation of prosthetists are relying very heavily
on the latest technology. The 'art' of making prosthetics is being
rapidly lost, and new amputees won't know any better.
The age-old tradition
of a new prothetist being trained up by a mentor is on its way out.
As Al Pike CP mentioned, there was a time when he could look at
a socket, and recognise the workmanship of a particular person.
This is not happening today. When you meet your prothetist, ask
how he happened to choose prosthetics as a career. I have no idea
what the perfect answer is, but go with your gut.
GOING HOME
WITH A TEST SOCKET THAT DOESN'T FIT
Huh? That is just
crazy. If it hurts in the rooms, then be damn sure it can only get
worse. I can see Marco's frustration levels rising with me sometimes.
He'll say "how does it feel", and I will say "I'm
not sure". And quite honestly, at that point, I really don't
know. If it's a new socket, the pressure points are different. Heck,
how am I to know if that's where it's supposed to push me. So he
says "walk". 10 minutes later, same question "how
does it feel?" Me - "I'm not sure, but it's pushing a
bit here". Marco - "walk". And he bundles me out
the door of his rooms so I can walk properly, even if I don't want
to. This "walking-and-tweaking" can take anything from
20 to 50 minutes. And trust me, if the socket is not right, after
walking non-stop for this length of time, you will know if it's
going to be a problem. And Marco won't let me go home with the socket
if it starts to make me sore.
In defense of prosthetists,
sometimes we are so eager to take our new leg home, or so tired
of the to'ing and fro'ing to try and get it right, that we are not
completely honest. These people rely completely on us when it comes
to final fitting. They can't 'feel' for us. So in short, if you
go home with an ill-fitting socket, the blame must sit (most times)
on your shoulders. We need to learn how to say NO this is not right,
I won't manage. Period.
Rule of thumb -
if it's sore, it doesn't fit! (Pain against your bones is not to
be confused with trying to get used to a new socket which inevitably
makes us feel tender against skin and muscle for a while - like
a new pair of shoes perhaps).
THE ONUS IS ON YOU TO GET
EDUCATED
This is sad but
true. In Africa, there are no 'qualified' peer visitors, no healthy
support groups. Nothing. It took me a very long time to realise
there was even such a thing as getting myself educated. We need
to take an active interest in our disability. This is, after all,
a problem we will have for life. A prosthetist doesn't have the
time to sit for hours explaining every detail to his patient. It's
just not practical. And I am sure that if you visit your prosthetist
with questions and suggestions that are intelligent and up-to-speed
(if not on the same level as his), they are more inclined to listen
to you, and share information that you may otherwise not have received.
I am like a sponge
now. Sometimes I hurtle off in the wrong direction completely and
Marco just smiles and shakes his head. More often than not, he wins.
But I come away more empowered and feeling more in control of my
own life. And I think Marco appreciates that in me.
Rule of thumb -
If you don't understand, ask until you do!
SOCKET VERSUS
ALIGNMENT
The alignment of
the knee and the foot with the socket is almost as important as
getting a good socket fit. I have had a perfect socket, changed
the knee, and been crippled the next day. If the prosthetist hasn't
done a lot of work with a particular knee, then chances are that
when he aligns it, it's hit and miss. Could it be that our sockets
are not too bad, but the alignment throws the whole thing out of
kilter? I think this is a distinct possibility.
IN CLOSING...
There are some dreadful
prosthetists out there, and also some superstars. However, we, as
amputees, need to start taking responsibility also. If you are lumbered
with a painful prosthesis, it's up to you to make it right. If this
means yelling and demanding, or being more honest, or actively seeking
out knowledge, or refusing to go home with something that doesn't
feel right, do it. But do something. Do something. Both prosthetist
and patient rely on eachother to get a comfortable and functional
limb made.
You may have been
a victim of some cruel twist of fate, but that story is over. It's
time to move on as the master of the rest of your life. It's SO
do-able!!
Like Marco says
"there's only so much I can do Ally, the rest is up to you".
(Damn, it would be so nice to lump him with my burden and sit back
waiting for him to do miraculous things).
POST SCRIPT
: I think it is shameful that new amputees in South Africa are not
offered EVERY avenue of support, education and therapy as a matter
of course. Some receive NOTHING. Wham-bam-thank-you-mam' comes to
mind....but at least someone walks away satisfied in that scenario!
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