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Date:         Fri, 24 Jul 1992 10:35:29 EDT
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2823
X-To:         LHCAP <l-hcap@VM1.NODAK.EDU>

                             THE HANDICAP DIGEST

                                 Issue # 2823

                            Friday, July 24, 1992

Today's Topics:


                                ******


                              Let's get started
                                   Vicodin
                                  Re: Pain
                                   Syrinx
                          Re: RE: TDD RELAY SERVICE
                         Re: TALKING TO DEAF PEOPLE
                                DEAF CULTURE
                                  Re: Poll
                                  Baclofen
                                Vacinni boot


                                ******


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Subject: Let's get started
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Linda!

15 Jul 92, Linda Cummings writes to Arthur Saus:

 LC> Thank you for clearing that up for me, I appreciate it.  Now, on to the
 LC> "what *can* help me?"

This may not be intentional, but now you are asking for a diagnosis
and therapeutic recomendations over the net.  This is impossible!
The answer to that question must be worked out by you and your
doctor.

Arthur

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Subject: Vicodin
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - St Joes Hospital, Phoenix AZ


[This is from the Chronic Pain Conference]

Linda, are you really taking Vicoden? I cannot believe they
prescribed this for your chronic pain unless you did not tell them
about your problems with Tylenol #4. This drug is just as bad if
not worse. It is highly addictive. I have missed quite a bit of
what has transpired with you over the last several months with my
own problems, travels, and business. The last I heard, you had
gotten out of the Pain Management Clinic in Birmingham and seemed
to be doing much better. Who on earth prescribed you Vicodin for
chronic pain? It is a great drug for acute pain but not for chronic
pain. I work with too many people now who are addicted to this drug
or other narcotics because their doctor either did not bother to
determine whether or not the pain problems they were having was
chronic or acute or just didn't care. Now they are addicted.

                       -Keith-

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Subject: Re: Pain
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - St Joes Hospital, Phoenix AZ


[This is from the Chronic Pain Conference]

 AS> One of the difficulties physicians face is that many
 AS> different problems present with the same or very similar
 AS> symptoms, but yet the cause, treatment, and prognosis is
 AS> very different.  That's one of the reasons it takes so
 AS> long to train a physician, and why most physicians specialize.

 IMHO, too many physicians specialize and if you cannot be pigeonholed
 right into their field of expertise, they say they can't help you and
 send you to another "expert" who, in turn, passes you off to another.
 This is true especially in those difficult to diagnose pains or
 illnesses. If you do not fit the specifics precisely, doctors feel they
 may be going out on a limb and subjecting themselves to litigation if
 they were to prescribe some drug say that could help but may have some
 very adverse side effects. It is called "passing the buck".
 Unfortunately the "buck" is human which is something they don't take
 time to train these physicians during the long time they have them in
 medical school.

 Unfortunate also, is that much like our government and all its
 specialists comes the problems of bureaucratic red tape and we end up
 having this huge conglomeration of specialists who are paralyzed by the
 very medical bureaucracy that created them and find they can adequately
 serve nobody.

                       -Keith-

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Subject: Syrinx
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - St Joes Hospital, Phoenix AZ


[This is from the Chronic Pain Conference]

 GP> does anyone else suffer from a "syrnix", or spinal
 GP> cavity"? The three surgeries I have had did not do any
 GP> good and I am interested in locating a teaching hospital
 GP> that specializes in this kind of illness or a doctor that
 GP> is doing research on it. Thanks

 I am a C-8, T-1 quad/paraplegic who just returned from the Craig
 Hospital in Englewood, Colorado. I was told these problems often
 exist in SCI patients up to ten years post injury. Symptoms of a syrinx
 are pain or numbness above the level of the injury. They can be
 successfully drained or shunted. I was also told for the first time
 about the spinal cavity you mention. The doctor at the Craig said they
 were the first to discover these and that they are a fairly new
 phenomena (not that they haven't been around for ages). Needless to
 say, I demanded a cervical MRI which was negative. But it did give me
 piece of mind. I suggest you contact:

 Craig Hospital
 3425 S. Clarkson
 Englewood, CO 80110
 303-789-8220

                       -Keith-

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Subject: Re: RE: TDD RELAY SERVICE
From: Vixen@f11.n203.z1.fidonet.org (Vixen)
Organization: FidoNet node 1:203/11 - The Broken Rose BBS, Sacramento CA


[This is from the Silent Talk Conference]

Hi Rick,

I "think" that most TDDs that are both Baudot and Ascii capable
usually offer dual speed modes of 110 and 300bps. (One thing
however, 300bps across a little TDD LED display is more than "major
league fast.")

The Broken Rose BBS is TBBS multiline and I have called it many
times with my TDD in Ascii mode. In fact, there is a mod and number
of ways that software can be set to facilitate easier TDD to a TBBS
BBS communication.

I think I have even posted a message or three in either ABLED or
SilentTalk (Probably better than two years ago no) calling in via
TDD.  The only problems being that messages had to be posting in
unppercase and of course, Baudot code cannot be used and it is
likely that larger percentage of deaf people do not yet have dual
mode TDDs.

Also being legally blind, I have a special display output on my TDD
and so I usally opt for a BBS connect of 110 when doing a TDD to
Broken Rose connect.

Keepin' the faith!

.                             Vixen

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Subject: Re: TALKING TO DEAF PEOPLE
From: Vixen@f11.n203.z1.fidonet.org (Vixen)
Organization: FidoNet node 1:203/11 - The Broken Rose BBS, Sacramento CA


[This is from the Silent Talk Conference]

Hi Karen,

I came across a comment you made, in a message to Betty McBroom
about how some people would get after you for "talking too loud"
and how as a result, you now often speak too softly.

I suppose, like many of us who have progressive hearing loss (And
perhaps even some born deaf?) I certainly can relate to that
problem.

I started really "yelling" just after they stuck hearing aids on my
ears. I would especially yell if I were really excited. It's true,
some people can really be irritated by that and "some" of them can
be quite rude about letting you know you are speaking quite
loudly.

Besides being hearing impaired, I am legally blind and mobility
impaired, so I am fortunate in a way, because there is almost
always someone very close to me at my side when I am public.  I
have told my friends and family members that when I begin to speak
too loudly or even yell, in public, to gently nudge me in the arm.
This system works really well in my case. Of course, when I am out
and about alone, then I am on my own.

Also, when me and my hearing aids leave a quiet environment and I
must use my TELEX, I also experience another problem similar to
yours, that being, I find talking sort of a strain and difficult
because while I can hear the other person through the TELEX, I am
unable to hear my own voice at all.

Oh well, life is hard, but you're not alone! Being oral is a
wonderful thing, but thank goodness for ASL!!!

Keepin' the faith!

.                                Vixen

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Subject: DEAF CULTURE
From: Laurel.Gealt@f201.n273.z1.fidonet.org (Laurel Gealt)
Organization: FidoNet node 1:273/201 - US Telematics, Yardley PA


[This is from the Silent Talk Conference]

Betty, this message is really for James Womack, but I don't want to
upset Ann, so I am addressing it to you.

James, I have read the book "Disavblingg of the Deaf Community",
and I can see that ASL and Deaf Culture are really the most
appropriate cultural formss for the born-deaf or pre-lingually
deafened.  But, I still do not think that Deaf culture is simply
another culture -- like English culture or French culture.  Any
more than riding around in a wheel chair is a cultural alternative
to walking.  I have three reasons --

1) There are six thousand words in ASL.  There are six HUNDRED
thousand words in English.

2)People with all their senses do not sometimes develop sign
language and sometimes develop spoken language.  Cultures of people
who are healthy and have all their senses ALWAYS develop a spoken
language.  Infants with all their senses do not sometimes babble
and sometimes make finger motions.  Infants with all their senses
ALWAYS babble.  The only hearing people who have EVER used sign
language are the American Indians (or Native Americans, if you
prefer).  And that was only because there were many tribes, with
many languages, and it was considered humiliating and degrading to
learn another tribe's language.  So, Deaf Culture may be best for
the Deaf, but it is NOT just another culture.  It IS a handicap,
and they ARE communicating in a way that is not instinctive for the
human animal.

3) If Deaf Culture is just another culture, how come nobody ever
VOLUNTARILY becomes Deaf?  My grandparents voluntarily left Europe
and voluntarily became English speaking Americans.  Where are all
the people who have voluntarily become deaf?  How come, when two
deaf people have a hearing baby, they do not automatically take the
baby to a doctor and have its auditory nerve severed?  Or is this
just because of anti-deaf prejudice among doctors?

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Subject: Re: Poll
From: Hugues.Blanchet@f136.n167.z1.fidonet.org (Hugues Blanchet)
Organization: FidoNet node 1:167/136 - Ab.'s Place, Montreal PQ


[This is from the Silent Talk Conference]

Hi Laurel,

LG>I don't understand the poll as to whether a Monitoring System should be
LG>installed in any relay service.  Of course I know what a Relay Service is --
LG>I use one.  But what is a monitoring system?  What does it monitor? And how
LG>does it work?

Very simple Laurel.  The "Remote Monitoring System" enables the
supervisors (who are hidden in a room somewhere, so the CA's aren't
aware of them) to see the private conversations that are relayed
y the CA and the two parties. In Canada, monitoring as such
is called "Ecoute electronique" because a private conversation that is
taking place between two parties is not ONLY seen on the CA's screen
(It's the ONLY one that should see our conversations because she relay's
it!), but ALSO on another monitor that is hidden in another room
somewhere so the supervisors could _evaluate_ the quality of the
service...

I'm the one that started this poll.  I was asking everybody if they
thought a monitoring system should be installed in ANY Relay Centers.

We have such a system here in Montreal and they (the phone company)
thought it would be kept under cover... but they were wrong and I knew
about it... So. I'm now fighting them and last week, I met a guy that
confirmed everything I thought.  He is a former Human Rights worker
(and also the person responsible of the Deaf group in the Advisory
Comitee of the BRS) and he told me that such a system is illegal and
even MORE if it concerns monitoring of the hearing impaired people in
Canada, for ANY reason, unless they have a very serious doubt that we
are a bunch of criminals...:-) in which case, they STILL need a warrant
from a juge... So that's it Laurel.  If they want to evaluate the
quality of the service, they will have to do it WITHOUT using US
(monitoring OUR conversations).

Karen had a very good alternative to this.  They should have the
supervisors call the Relay THEMSELVES and evaluate the CA's
DIRECTLY without having OUR privacy jeopardized.  They will then be
able to evaluate their responses (the CA's) to whatever they might tell
them (be it threatening calls, X-Rated calls, or what have you).

So, what do you think of the Remote Monitoring System Laurel?  Do you
think it should be there or that they should think of something else
(that would NOT affect our privacy) to evaluate their CA's?

Up to now, I got 8 NO's for one YES... (I wont say who it comes from
because the person didn't say NO openly but she isn't AGAINST it
neither (ahemmm....).

Voila! Operation Desert Storm is over... Operation BRS Tornado
is under way... And just like the last one... it will be
VERY short!

So the Director of the BRS in Montreal will have one hell of a showdown
when she comes back from vacation (she doesn't know yet what
will hit her when she'll come back...>;-) She'll be STUNNED by
all the people that NOW KNOW about her system) because I've met the
person responsible of the Deaf group in the Advisory Comitee of the BRS
and he told me that if this was true, that they would vote a knockdown
of the system.  And if THEY say NO, the remote monitoring system is OUT
of there FOREVER. Yippi yayayyyyyyyyyyyyyyy!!! :-)

Amicalement votre,

Hugues

 * SLMR 2.1a * BRS: Countdown to the annihilation of the Monitoring sys.
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Subject: Baclofen
From: Mark.Munson@p0.f14.n279.z1.fidonet.org (Mark Munson)
Organization: FidoNet node 1:279/14.0 - Project Enable, Dunbar WV


[This is from the Silent Talk Conference]

KJ>To compensate for the Valium, I kicked my Baclofen up from 80 to 100
KJ>mgs a day which the doctors at the Craig said was no problem.
KJ>Only problem I notice, though is my back gets bad. On a similar
KJ>note, a para I met who was taking 80 mgs a day got completely
KJ>off it and said he went through hell for 3 weeks but the spasms
KJ>eventually leveled off and were no worse than when he was
KJ>taking 80 mgs a day. He is not the first one that I have heard
KJ>this from. When I kicked mine up to 100 mgs, it helped
KJ>initially and I could sleep. But now it's not helping. It's
KJ>like the body adjusts. Down the road I am thinking about
KJ>eliminating the Baclofen altogether, but not now with all these
KJ>other drug changes. Incidentally, I just went back down to 80
KJ>mgs today. We'll see what happens tonight.

Keith,
   I'll have to check, but I thought your body shouldn't take more than
   40 a day (of baclofen) in combination with valium (diazepam).
   Baclofen is hard on the kidneys.  Of course (I think) we all wish we
   didn't have to take all this stuff, but Spasms are Spasms.  Doctor
   should have told your friend.  When ever you are going to stop taking
   baclofen (doctors orders or not), you have to ween off of it.  Do not
   just suddenly stop.  Everyones body is different.  My approach after
   nine years of trying everything, is a combination of a few.  The main
   one is simply tiring the suckers out.  Some people can self induce a
   spasm, others like me use a Neural Muscular Stimulator.  This looks
   like a TENS unit but is not, it basically just makes muscles
   contract.  I use this in combination with low doseages of diazepam
   and baclofen.  The stimulator also helps with blood flow and in some
   cases, increase muscle size or tone.  Be careful with your meds bud!

Mark Munson

 * SLMR 2.1a * Hey Frank, check the cat, he just rode a 20 minute clonus

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Subject: Vacinni boot
From: Mark.Munson@p0.f14.n279.z1.fidonet.org (Mark Munson)
Organization: FidoNet node 1:279/14.0 - Project Enable, Dunbar WV


[This is from the Silent Talk Conference]

Curious to find out if any of you all have been through the Vacinni BOOT
program, whether through the VA or Civilian community.  I was one of the
last to go through this alternative to the convention Long Leg Braces at
the VA Richmond when it was a research program.  Get back to me.

Mark Munson

 * SLMR 2.1a * Anyone find a blue light special on Spinal Cords Yet?

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                  End of Issue # 2823 of the Handicap Digest

                                ******
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