Happy Fourth Anniversary, AMP-L - Part Five of Five
OnwardMike at aol.com
OnwardMike at aol.com
Mon Feb 7 08:29:36 PST 2000
Subj: The AMP-L First Anniversary Anthology - Part Four of Four
Date: 97-02-06 11:22:25 EST
From: OnwardMike at aol.com
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
To: Amp-L at hoffman.mgen.pitt.edu (Amputee Information Network)
And finally...
THE POSTS: Greg J., Regina M., LaRae W., Tuvia A., Dan H., David G.
Subj: Re: Phantom of The Operation
Date: 96-03-20 19:43:38 EST
From: Gjohnson at seldon.terminus.com (Greg Johnson)
Sender: Maiser at hoffman.mgen.pitt.edu
George talked about the correlation between bowel functions and phantom
pain. I thought I would add my perspective. When I was 5-7 days
post-op, my bodily functions began working and I became acutely aware
that I was constipated. Pressure in the bowel became excruciating pain
at my then BK amputation. The sensation was that of all the stitches at
the end of my stump being pulled out. So real was this feeling, I made
the nurse undo the bandages to inspect the site. Once I completed my
business with the bedpan, the pain went away. Still, nearly 30 years
later the correlation exists. George mentioned a connection in erotic
feelings (physical, erotic sensations in the groin) One lady I spoke
with said sex made her phantom pain go away. I have not put this
hypothesis to the test yet. I think my bed partner would take a dim view
of this experiment at 3:00 in the morning.
I've always thought that this correlation has roots in the fact that the
nerves that serve the groin area, those that travel down the leg, and
those for the feet lay along side one another, setting up a condition of
'crosstalk.' If you don't think this is possible, try this simple
experiment. Ever notice when cleaning the inside of your ears you
sometimes need to cough? This happens because the nerves in the ears lay
alongside the nerves for the diaphragm. The over-stimulation in the ears
causes a nerve signal to cross over to the diaphragm.
All the above notwithstanding, I still don't know why my PP comes 2 days
before it rains.
Greg Johnson
===============================
Subj: Re: "One of them suffered merely from 'phantom pain' "
Date: 96-04-20 10:42:10 EDT
From: mazloum at iprolink.ch
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
I have the privilege (?) of being on both sides of the coin. As a
brain-injured person, I have also had to deal with the "it's all in
your head" stuff more often than I should have, and as a hospital
psychologist working among others with terminally ill folks, I have a
little experience regarding pain management.
Pain can have no physiological basis and be an unbearable one. We
encounter it everyday. Not having a physiological basis does not mean
that the pain does not exist. It only means that it can be approached by
different techniques than physiological pain. There is no such
antagonism/dichotomy as physical vs. psychological and real vs. fake.
No good professional considers that a pain which has no clinical basis
is not a real pain. All professionals will treat that pain as
accurately as they would an organic pain.
The problem sometimes also come from patients who don't accept that
their pain may have a psychosomatic origin and still be a "noble" one.
They search for more and more clinical exams, they need to have an
organic pathology to focus on. A kind of fixation abscess which is
necessary in order for them to be able to get rid of it.
They do not accept that, even if the pain comes from the brain
(everything comes from the brain, anyway), it is a real pain, and it
will be treated and if possible cured as what it is: a sincere source of
suffering for them. The psychologist, at that time, may have an
important role to play as the intermediary between the patient and the
physician.
The main challenge is not that of knowing where the pain comes from.
Rather, it is finding the necessary techniques, chemotherapy,
psychotherapy or whatever to stop it... and stop it forever.
I truly hope that the progress in the field of neuroscience will make
such a debate obsolete within the next few years.
Regina
===============================
Subj: Re: The Master Prosthetist meets Bubba
Date: 96-04-30 16:48:55 EDT
From: Mouzkilla at aol.com
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
Demonic Dominic blurbbed.......
>> Circus? Yes, that is a good description of the atmosphere. I
remember seeing Greg Manino on Donahue (I think) and he (Donahue)
asked, "So, has loosing you leg affected your social life [sexual
innuendo was obvious]"?
To which Greg responded, "I am getting married on xx date." The
audience acted so happy as if to say, "Oh, the poor little one-legged
guy found someone to accept him..." GIVE ME A BREAK. It was
pathetic.
I didn't see this particular circus, but there's something here that
really annoys me.
>From the sound of this description, it sounds as though Sabolich was
displaying one of his "creations" who, because the prosthetic device he
created for him worked so well, was able to appear "normal" enough for a
woman to marry him. It could be just the way Dominic reports it, or it
could be me getting my dander up at the blatant patronizing, but this
kind of stuff irks the sh-t out of me. All of the commercial elements
aside, if Sabolich is out there promoting "amazing prosthetics," in my
opinion he's doing all amputees a terrible disservice.
Wayne observes that Sabolich may also be promoting "amazing amputees,
which is not necessarily a bad thing." Yes, Wayne, it's great people
get on with their lives, excel in whatever area.....but I just don't
find that particularly amazing. I think it's more of an individual
doing whatever it is they feel they have to do.
For example Lindsay and Jill are born athletes, Tim is a Karate
enthusiast, it does not surprise or amaze me that any of the above would
return as quickly as possible to some form of their sport after injury.
It would be more amazing if I, a born non-athlete (my parents should
not have been allowed to breed), were to somehow overcome my hopelessly
uncoordinated body and START doing some sort of athletic activity.
Sabolich's activity I'm sure both helps and hinders new amputees and
jaded ones. I see a bind being created.
Sabolich's possible disservice to amputees is not only creating
illusions in the newbie amputee's mind about the "perfect prosthetic
device," but also by giving the impression to the able bodied community
at large that ALL amputees should choose to use prosthetics. Let's face
it, there's been a lot of discussion on both lists about the usefulness
of the things, as well as the problems associated with them, but rarely
a philosophical one.
Naturally, the decision on whether or not a prosthetic device will
improve life for an amputee is up to the individual amputee. On the
other hand, with all of this promotion of prosthetics, there is a
message sent to amputees that one MUST appear to resemble the rest of
the fully limbed population at large. Intellectually this bothers me. In
other words, in order for "US" (able-bodied folks) to "accept or be
comfortable" with amputees, they must appear to resemble "US." I find
that type of mentality to be distasteful. Amputees should be free to
appear as they wish, with or without a prosthetic device.... and to hell
with what the population at large thinks.
Am I wrong about this, or am I just imagining things here?
Anyone?
LaRae
===============================
Subj: Re: A powerful idea.
Date: 96-05-07 17:45:31 EDT
From: arieltuv at brachot.jct.ac.il
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
On Tue, 7 May 1996 russa at imine.net wrote:
GB> I say it should be right EVERY time... and they can do it.
RA> Given our lengthy technical discussion, I think there are far too
many variables -- what kind of tissue, where it is, what
compartments exist, etc.
EVERY time by anybody seems impossible. >>
The truth is that if you arrive at a fit, you have won. Whose fault is
it if your stump changes while the work is being done? All amps I know
report different results during fittings, so should not this service
person be paid for his time while he works on the replacement limb?
Crooks should be driven out, but you get lucky not what you pay for
because like MDs, a prosthetist who is medium to poor will not be fired
or disbarred or unfrocked; he just will not get return trade.
The numbers are such that they can do well if the percentage of fish to
fishermen is as it is. That is to say, they can manage to make a good
living in a big city and never see the same amp twice.
So, only consumerism and telling each other about the bad guys will help
us. Also remember that most of the world's amputees earn less than $500
a year.
(It is much easier to fit a chair than a leg. and a hand should type and
play a piano. We are far away from even good replacement UE limbs, and
only if each of us becomes a super amp will we find super prosties.
Tuvia
+---------------------------+---------------------------+
| THE JERUSALEM INSTITUTE | Tel: (972) 2 354-024 |
| OF REHABILITATION | FAX: (972) 2 353-925 |
| | Mail: 21 Agripas Street |
| T.C. Ariel, Director | Jerusalem, Israel |
| Email Arieltuv at Brachot.jct.ac.il |
+---------------------------+---------------------------+
===============================
Subj: Re: Wheels
Date: 96-06-24 01:00:25 EDT
From: unidextr at nando.net
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
To: Amp-L at hoffman.mgen.pitt.edu (Amputee Information Network)
On Fri, 21 Jun 1996 23:55:57 -0600, russa at imine.net wrote:
>> More on my shiny new red Quickie GPV wheelchair.
>> In order to get one that was light and maneuverable, I chose a rigid
frame one. This means that it doesn't fold up like an accordion to
bring it into my car. After much advice on how to get it in, and a
practice run with friends around, I was ready for my first solo.
My ISP is in the "due diligence" phase preparatory to the sale of its
dial-up operations and they are cleaning up their act so we have been
subjected to some strange happenings during the last few days -- digging
in corners resulted in release of "misplaced" e-mail dating back to last
April, as well as recent crashes of their mail servers (all three of
them), news servers and various mysterious dumping of password files --
you dial in and next thing you know you have the full password file on
your hard disk!!! All this has caused me to be behind in reading and
answering mail (more than usual, that is!).
I guess that George didn't catch this when he suggested the car top lift
and carrier. It's not too practical when your chair has a rigid frame!
Based on my acquaintance with several different chair users, the
transfer, loading and unloading of your chair is a relatively individual
thing, that is done in a similar BUT different way by each person doing
it, and no one I'm acquainted with uses or even needs a 'third hand to
do it!
If you can get a chance to see the GM "Mobility" program's video, there
is someone in it who is shown doing a transfer using a chair just like
the one Russ has -- as I recall. He transfers his butt out of the chair
into the car, with his feet and legs still outside the car. He puts
(tosses) the cushion behind the driver's seat, and proceeds to pull the
wheels and rest them to his left against the car, folds the seat back
and reaches over the steering wheel and puts it behind the passenger
seat, picks up the wheels and puts them behind the driver's seat, swings
himself around so he is facing the front of the car, and lifts his legs
in, under the steering wheel. (BTW, I didn't mention that the seat back
was released and tilted back a bit when he started to do all of this.)
He pulls the seat back to an upright position, like he was on an airline
getting ready for take off, and then sides the seat forward to a driving
position before he closes the door, puts on the seat belt and drives
off. (He avoids scratching the finish by balancing the frame as he
pulls off both wheels.)
In the video, it looks like he avoids shifting his center of gravity
back far enough to have the problem that would cause him to flip back or
else rather than lean on the steering wheel he uses the larger surface
of the back of the seat and the friction against it to stabilize himself
while popping the wheels and flipping the frame.
One of the guys on one of the BB teams I played with essentially did it
the same way, but he was able to pop the wheels and get the frame into
his car (he had one with a back that didn't fold down) after he made the
transfer into the car and was already facing forward (he had an older
full sized coupe).
I have a neighbor with a Toyota who manages to transfer and then just
pop one wheel and lift the frame with the other wheel across in front of
him and lay it on the passenger seat. Then he snaps the seat back up and
pulls the seat forward to drive. I guess that he manages this as easily
as he does because he had his chair long enough to not be too concerned
about getting a ding on the paint job!
<<RA> The procedure is this:
1. Take the seat cushion off and put it in the back seat.
2. Fold the back down against the seat base.
3. Remove one of the wheels by pressing a button on the hub.
Now here's the tricky part. In order to keep it a shiny red, I have to
hold it up with one hand and take the other wheel off with the other
hand while holding on to something to keep from falling out with the
other hand. This is where I could really use some advice on how to make
one hand do the work of two.
So I thought, "If I leave my feet hanging out, I can scoot back and lean
against the steering wheel, and not have to use my third hand."
I took the second wheel off, put it against the car door and started
hauling the frame in. Suddenly, it leaped at me like Tim's poor bobcat.
I landed flat on my back with my head near the passenger door and the
fiendish beast pinning me to the seat. I couldn't sit up or put the
frame over the seat back because the roof is too low. To add to the
problem I started laughing. Not the minor chuckle the minor disaster
deserved, but great whooping, belly-bouncing laughter. I must have
needed a break from serious concerns.
Anyway, I finally remembered that the seat backs reclined and I pushed
the release and put the frame in the back seat.
Nobody told me I was going to have to learn to juggle. >>
(Then of course there was Bill Anderson, a guy who worked at AT&T's
headquarters and drove a VW "bug" convertible. The only reason he
always wore AKFOs was so he could use a forearm crutch he had in the
car to stand up and open the top of the car to lift his chair in behind
the front seats and then unlock them to sit in the car and pull the top
over after he got in.)
Dan
===============================
Subj: Re: Down Under
Date: 96-09-06 02:36:40 EDT
From: footy1 at pacbell.net (David Grunwald)
Sender: Maiser at hoffman.mgen.pitt.edu
Reply-to: Amp-L at hoffman.mgen.pitt.edu
Just back from three weeks in Australia, mostly in Melbourne where
people were enjoying the coldest winter in twenty years.
Some observations:
* Both The Age and The Herald Sun provided daily coverage of the
Paralympics, but, not surprisingly, coverage focused mainly on the
Aussie team. There was also sketchy coverage by the three commercial
TV networks. But the most thorough coverage was by the Australian
Broadcasting Corporation, which provided a daily highlights show that
ran either an hour or thirty minutes. Again, the focus was mainly on
the Aussie team, but there was also coverage of some of the problems
that Atlanta had in hosting the games.
In one of its last broadcasts, ABC interviewed the woman -- I've
forgotten her name -- who's in charge of the Sydney Paralympics, and
she was quite adamant that they will not repeat Atlanta's mistakes.
For one thing, the same organizing committee will handle both the
Olympics and the Paralympics. For another, the facilities used by the
athletes will be made accessible before the Olympics. For a third,
all temporary facilities for the Olympics, such as the media center,
will remain open through the Paralympics, which will be in October,
2000.
* For those concerned about accessibility, both Sydney and Melbourne are
very accessible, with curb cuts at practically every corner, as are
public buildings and sporting venues. The MCG in Melbourne, for
example, has ramps and lifts (elevators) and ample space for non-TAB's
with terrific sight lines. My wife likes to use a wheelchair for long
distances, and the staff at the MCG were very accommodating. We saw
four footy games at the MCG over three weekends, including a terrific
match Sunday between the North Melbourne Kangaroos, the side I've been
barracking for since 1980 when I first discovered the wonderful world
of Australian Football on ESPN, and the Richmond Tigers.
* Watching footy in the flesh is a terrific experience. There is so
much more to the game than what you see on television. I'm told that
ESPN2 is carrying the weekly highlights show this year; so if anyone
knows when the Bristol Boys are airing it, please let me know.
Anyway, I wanted to stay Down Under longer, but my daughter started Van
Nuys High yesterday and we were on a 21-day excursion-rate ticket.
Needless to say, we're already planning to go back.
Cheers,
David G.
P.S. I "unsubscribed" to keep my mailbox from overflowing. Hopefully,
nothing too untoward happened. Although I see that untrammeled
controversy has apparently reared its ugly head again over at Ian's
list. Oh well, that's life.
===== ==========================
END OF ANNIVERSARY ANTHOLOGY -- PART FIVE OF FIVE
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