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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
Newsgroups: bit.listserv.l-hcap
Date:         Wed, 4 Nov 1992 14:15:08 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3008

                             THE HANDICAP DIGEST

                                 Issue # 3008

                        Wednesday, November 04, 1992

Today's Topics:


                                ******


                         software for sign language
                       Electronic Access to Congress?
                            Hunting opportunities
                          World  dwarf  games  1993
                                    pain
                               Pain Treatments
                                     New
                            hypochondria support
                                 hello there
                     RSDS, Sympathectomy, and amputation


                                ******


To subscribe to the Handicap Digest mailing list or have your
thoughts in the next issue, please send electronic mail to
Bill McGarry at any of the following addresses:


UUCP:       uunet!bunker!wtm
INTERNET:   wtm@bunker.shel.isc-br.com
BITNET:     l-hcap@ndsuvm1.bitnet
Fidonet:    The Handicap News BBS (141/420)   1-203-337-1607
            (300/1200/2400 baud, 24 hours)
Compuserve: 73170,1064

                              Bill McGarry (Moderator)
                              (203) 337-1518



------



Subject: software for sign language
From: hagen@cs.sfu.ca (Eli Hagen)
Organization: CSS, Simon Fraser University, Burnaby, B.C., Canada



Can anyone point me to programs/research where
sign language is used as the input/output language?

Thank you.



Eli hagen
Simon Fraser University
Burnaby, BC
V5A 1S6
Canada
hagen@cs.sfu.ca





------



Subject: Electronic Access to Congress?
From: janina@netcom.com (Janina Sajka)
Organization: Netcom - Online Communication Services  (408 241-9760 guest)

from: Frank Odasz, Director of Big Sky Telegraph
      franko@bigsky.dillon.mt.us

RE: I'd like to invite everyone interested to respond directly
to my Internet ID (above) regarding the following congressional
request for input! CoSN members can be particularly helpful with
the POLICY questions toward the end of the list! Please feel free
to disseminate the following.

Congressional input for this study can also be forwarded to Tom
Grundner at Cleveland Freenet - telnet 129.22.8.76 or telnet
129.22.8.75. Tom's voice number is 216-368-2733. Tom is focusing
on gathering urban input while Big Sky Telegraph is gathering
rural input. EVERYONE is invited to contribute to this study.
Feel free to add your own questions and answers and/or to answer
the listed questions in whatever manner suits you.

     CONGRESSIONAL OFFICE OF TECHNOLOGY ASSESSMENT STUDY AND
                 WESTERN'S BIG SKY TELEGRAPH
          CONNECT ELECTRONICALLY TO CITIZENS FOR INPUT.

The US Congressional Office of Technology Assessment is
conducting a major study and has contracted with BIG SKY
TELEGRAPH of Western Montana College to solicate from citizens
suggestions regarding the potential of information technology to
allow the Federal government to be more responsive to rural and
small town America in the dissemination of Federal services and
information. BILLIONS of your tax dollars are spent each year
disseminating Federal services and information!

THE CHALLENGE:
"Electronic technologies might reduce the need for some layers of
bureaucracy, help bring government services more directly to the
citizens, and, by so doing, provide better services more
cheaply."

One goal of this study is to determine if citizens CARE enough to
respond to the opportunity to advise congress DIRECTLY, if given
the opportunity. This IS YOUR opportunity! The hope is that
grassroots input will provide innovative ideas and approaches.

EVERYONE interested is invited to respond to ANY or ALL of
the following questions and engage in online discussions with any
of the other participants. Access to Big Sky Telegraph is
available at no charge using a modem at 406-683-7680. Select
M)essages from the Main Menu, then select the USCONGRESS
conference. Big Sky Telegraph's voice number is 406-683-7870.

The conference will be held from September 1 - December 1, 1992,
solicating online written comments and opinions from teacher,
student, and citizen users of Big Sky Telegraph. All messages
will be printed and included as appendices to the study. A
summary 30-40 page double-spaced report from Big Sky Telegraph is
due in draft form Nov. 9, the final report is due Dec. 18, 1992.

PLEASE share your views on the following questions, and feel free
to ask your OWN!

1. What are citizen needs and desires for the electronic
   services?

2. If the appropriate technology were in place, what would
   citizens like to be able to DO and how would their lives
   improve?

3. What are the opportunities for improvement in the productivity
   and efficiency of service and information delivery?

4. What problems might arise with both service provider and
   citizen acceptance of electronic delivery?

5. What might be the requirements for education, training,
   and equipping of recipients?

6. How would electronic access impact users who are senior
   citizens, or disabled, or who live in rural settings?

7. What might be the requirements for training of service
   providers?

8. What services that are reasonably representative of the types
    of Federal services provided to small towns might be best
    suited to electronic delivery?

9. What services and technical applications might highlight
   opportunities for innovation in service delivery?

10. What are the prerequisites of successful implementations with
   attention to facilitators and inhibitors of innovations?

11. How might the services, delivery mechanisms, and related
    policy/management frameworks be redesigned?

EDUCATIONAL APPLICATIONS:  What should the federal policy
be with regard to supporting K-12 and other educational
applications using computer networks?

1. What computer network or information services could the
  federal government provide access to which would make our
  K-12 schools better?

2. Does the federal government have an obligation to provide more
  than access to services, must it also insure equitable access
  to these services for all schools and provide the necessary
  training to use these services effectively?

3. Should the federal government have a responsibility to assist
  in corporate and business training programs, or should it stop
  at the K-12 or college levels?

POLICY QUESTIONS: (These questions may be too technical for some
people.)

1. What might be the requirements for the government
   telecommunication and computing technology infrastructure
   needed to support electronic delivery, including appropriate
   technical standards to ensure systems compatibility and
   interoperability?

2. What consistency of electronic service delivery innovations
   exists with the current policy/management framework?

3. What policy/management changes that may be needed to implement
   technology-enhanced service delivery to rural/small town
   America?

How could electronically delivered service applications be
implemented to take into account the following policy/mangagement
considerations?

1. equity of electronic access to Federal services

2. protection of citizen privacy in Federal record systems

3. prevention/detection of fraud, waste, and abuse in program
   management and service delivery

4. protection of the security and integrity of systems used for
   electronic service delivery

5. appropriate retention and archiving of records and information
   related to electronic service delivery

6. consistency with annual and five-year agency planning for
   telecommunications and information resource management

7. relationship to agency automation programs and activities

8. relationship to FTS2000, NREN, and other Federal information
   technology programs

9. opportunities presented by electronic service delivery for
   synergy/economies of scale across Federal agencies/programs,
   across Federal/State/local levels of government

10. opportunities for cooperation with the private sector
    (service providers, computer/telecommunications providers,
    profit and nonprofit)

11. opportunities for telework, telecommuting



Frank Odasz                      \   /    ^     IMAGINATION
Western Montana College, Dillon, - O -   / \  ^  is more
important
MT, 59725 Voice:406-683-7338     /   \ ^/~~~\/~\  than knowledge.
Einstein.
Internet:franko@bigsky.dillon.mt.us  /   \    \  \




------



Subject: Hunting opportunities
From: Sheila.Fava@f3.n157.z1.fidonet.org (Sheila Fava)
Organization: FidoNet node 1:157/3 - Nerd's Nook, Rocky River OH


[This is from the Abled Athlete Conference]

U.S Corp of Engineers

            Offers Hunting Opportunities

                           For Persons With disABILITIES

Arkabulta Lake                     |Grenada Lake
  CONTACT: Dean Hunter             |  CONTACT: Don Gober
           Rt. 2 Box 572           |           POB 903
           Coldwater, MS 38618     |           Grenada, MS 38901
           (601)562-6261           |           (601)226-5911
Type of hunt:  Deer Hunt           |  Type of Hunt:  Deer Hunt
Restrictions:  Quad, Para,         |  Restrictions:  Wheelchair
               100% disABLED       |                 Users -only-
Registration: Oct. 26th, 1992      |  Registration:  None
(Keep this in mind NEXT year)      |  Date of Hunt:  1st season in
Date of Hunt:  Dec. 2-7, '92       |                 November 1992
___________________________________|__________________________________
Somerville Lake                    | Shelbyville Lake
   CONTACT: Martin Gustafson       |  CONTACT: Mike Skinner
            POB 549                |        Rt. 4 Box 128B
            Somerville, TX 77879   |        Shelbyville,  IL 62565
            (409)596-1622          |        (217)774-3951
Type of Hunt:  Deer Hunt           |  Type of Hunt:  Deer Hunt
   Restrictions: Texas RESIDENT    |  Restrictions: NON-Ambulatory
                 Wheelchair user   |  given preference. All other
Registration DEADLINE: Nov. 2, 1992|  PwD's applications considered.
(Keep this in mind NEXT year.)     |Registration DEADLINE: APRIL 10th
  Date of Hunt: December 5th, '92  |  ((Keep this in mind NEXT year!)
                                   |Date of Hunt: December 20-22, '92
___________________________________|_________________________________
Mark Twain Lake                    | Carlyle Lake
   CONTACT: Shelly Howald          |  * CONTACT:  Andrea Pickard
            RR 2 Box 20A           |              801 Lake Road
            Monroe City, MO 63456  |              Carlyle, IL 62231
            (314)735-4097          |              (618)594-2484
Type of Hunt: Deer Hunt            | Type of Hunt:  Dove & Duck Hunt
Restrictions: NON-Ambulatory &     | Restrictions:  Illinois PwD Class
              SEMI-Ambulatory      |                P2A or equivalent.
Registration DEADLINE: Oct. 23rd   |Registration DEADLINE: See * CONTACT
Date of Hunt: Nov. 21-22, 1992     |Date of Hunt: Opening weekend of
                                   |            dove season and every
Spring Turkey Hunt will be held -- |            weekend of duck season
Dates not finalized yet.           |
___________________________________|____________________________________
Rend Lake    _                     | Tulsa Lake
    CONTACT:  Gary Campbell        |    CONTACT:  Everett Laney
              RR 3                 |              POB 61
              Benton. IL 62812     |              Tulsa, OK 74121
              (618)724-2493        |              (918)581-7356
Type of Hunt: Deer Hunt            |Type of Hunt: NON-Ambulatory
                                   |               *special*
Restrictions: IL Class P2A or      |               Roadway Deer Hunt
              equivalent           |Restrictions: NON-Ambulatory
                                   |                w/PERMIT
Registration: MAY 15, 1992 <Sigh.> | Registration Contact: Rick Hatcher
Date of Hunt: Nov. 20-22  and      | Date of Hunt: Contact Rick Hatcher
___________________________________|____________________________________

The  Corps  of  Engineers  strives  to  accommodate all  persons
with disABILITIES  by  providing  accessible  facilities  and  by
planning special  recreational  activities.   The Corps  has
planned special clinics,  tournaments  and  derbies.   These
events are held in areas where there are accessible docks, boats
and blinds.  These  areas and the  hunting  areas  are  not  open
to the general public.  Areas are closed campgrounds or nature
areas or  special roadways  within Corps project  lands.  Above
is  a  list of -SOME- Corps offices that offer hunting  or
fishing  to  sportspersons   (male   and   female) with
disABILITIES.  Additional information regarding  sports'
opportunities may be obtained by contacting the nearest Corps
office.

______________________________________________________________________

Posted in brief from an article in _disABLED_Outdoors_ Magazine:
Pages: 18-19 -- Vol. 6  Number One -- October/November 1992

                                      John Kopchik, Jr., Publisher
                                      2052 W. 23rd Street
                                      Chicago, IL 60608
                                      Phone:  (708)358-4160



------



And now, I would like to apologize for posting this message with
such important  news  and  with  the REGISTRATION DEADLINES so
-late-. For shame!  Corps  of Engineers, for getting this important
information to the magazine so late!  Suggestion:  Why not write or
call John Kopchik AND the Corps of  Engineers  and  voice  your
displeasure about the lateness  of  this information AND why aren't
other States on the East and West Coasts mentioned?  These hunts
were planned  some time ago.  Why are they just being publicized
-now-?

                    ---Sheila

                    *** HOST(ess) ABLED-Athlete Conference ***

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------



Subject: World  dwarf  games  1993
From: Sheila.Fava@f2.n157.z1.fidonet.org (Sheila Fava)
Organization: FidoNet node 1:157/2 - Nerd's Nook II, Rocky River OH


[This is from the Abled Athlete Conference]

Base: ADANET Dwarfism Echo
Date : 29 Sep 92  21:20:59
from : Betty Jacobsen
To   : ALL
Title: 1993 World Dwarf Games

The 1993 World Dwarf Games will host more than 300 dwarf athletes
from the United States, Great Britain, Australia, Germany, France,
Sweden, Mexico, Canada, Denmark, Spain, Israel, Finland, Malaysia,
Japan, Korea, and many other nations.  The Games will be held at
the College of DuPage, Glen Ellyn, Illinois, June 30 through July
8, 1993 (athletes arrive June 29).

Competition will be offered in 8 major sports: track, field,
swimming, basketball, boccia, power lifting, table tennis, and
volleyball.  Soccer and equestrian will be demonstration events.
Classification will be determined by age, gender and functional
ability.  The World Dwarf Games will be held in conjunction with
the Little People of America National Conference in Chicago, an
International Summit for the dwarf community, and an International
Symposium for medical professionals specializing in dwarfism.

This event will draw National and International attention to the
quality and opportunities for dwarf athletic competition. This
event will showcase dwarf athletes who are preparing for the 1996
Paralympic Games in Atlanta, Georgia, U.S.A.

The Games will be supported by athletic participation fees. The
Dwarf Athletic Association of America is currently re- questing
private donations and corporate funding.  Athletes receive no
direct support and must raise their own funds to participate.
Efforts are underway to identify scholarships to help deserving
national and international athletes.

D.A.A.A. is a member of the U.S. Olympic Committee.  The U.S.
Disabled Sports Team includes outstanding dwarf athletes selected
through D.A.A.A. competition.  The team is sanctioned by the U.S.
Olympic Committee for participation in the Inter- national
Paralympic Games held every four years at the same venue as the
Summer Olmypic Games.

Since 1985, D.A.A.A. has been developing, promoting, and providing
quality amateur level athletic opportunities for dwarf athletes in
the United States.  The Dwarf Athletic Association of America
sponsors clinics, developmental events, and formal competitions at
local, regional and national levels.

===
'Captured' from SHENK'S EXPRESS BBS -- Carol Shenkenberger, SysOp
              San Diego, California -- (619)697-7783
===
                    ---Sheila

                    *** HOST(ess) ABLED-Athlete Conference ***

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------



Subject: pain
From: Michelle.Levett@p2.f26.n243.z1.fidonet.org (Michelle Levett)
Organization: FidoNet node 1:243/26.2 - Echo Valley, Vanier ON


[This is from the Chronic Pain Conference]

Thanks for looking for the articles. I survive the pain in whatever
way I can;lying down, sitting up, going on a Foot Patrol shift,
even trying to stay warm so that the hip isn't aggravated further.

But there are days when nothing seems to help. I went to the St.
Laurent shopping centre yesterday. Big, huge, maze-like place, with
lots of small elevators. Every time the elevator doors slammed
suddenly, or someone almost bumped into me, I jumped. Every time I
jumped, my hip jumped with me. By the time I got back to residence,
if I had been able to walk, I would have limped into my dorm. As it
was, I could barely return the greetings of my floormates.

Going into volunteer work (such as the Foot Patrol, a student
walk-home service) can at least give your life some meaning. From
my own personal experience, it saved me from losing hope completely
and giving up. My parents may be a bit concerned that I'm back on
patrol duty, but I have never had to go home early because of the
pain (Doing Foot Patrol work gives you moxie, you need it if you're
tramping around the campus at night with a guy, even if you have
flashy red jackets, a walkie-talkie and a flashlight). When I get
home at night after a shift, I know I can count on getting 6-7
hours of sleep as opposed to 2-4 hours of sleep. The bed seems a
bit warmer, friends seem friendlier and a cup of hot chocolate is
that much more welcome.

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------



Subject: Pain Treatments
From: Michelle.Levett@p2.f26.n243.z1.fidonet.org (Michelle Levett)
Organization: FidoNet node 1:243/26.2 - Echo Valley, Vanier ON


[This is from the Chronic Pain Conference]

 > Any chance of spending the holidays with 1 or 2 friends ?

There's a better chance of it snowing in hell. This isn't the first
time I've not wanted to go home. The last time I brought it up, was
two years ago. I told my father: "I'm sorry! But I don't want to
come home for study break.", he replied that we would talk about it
when he got their on the weekend. This conversation was over the
phone. The "talk" turned out to be an 8-hour argument in the van
that continued all the way home, with my father winning (like
always) by blowing me apart emotionally. It's useless to even talk
with him. But once, when I refused to argue back, he threatened to
have me put in an institution for the severely disabled. (I would
rather die than end up there).

All I know is that it's the end of October and I don't want to go
home, now or ever again. (This is what makes me feel so isolated).
At the beginning of the month, I saw a doctor on campus to get
something stronger for my pain. He gave me aspirin and some drug to
protect my stomach. I phoned my parents to tell them (I have to
tell them or they'll (read my dad) will flip out and give it to me
the next time I'm home) and they automatically told me to talk to
my surgeon (that's one point I agree with). The surgeon put me back
on Naproxen and Tylenol.

The thing is I see this campus doctor again on the twenty-ninth and
this is what is going on so far:

-minimal relief of current pain

-I'm averaging between 2-6 hours of sleep a night, with me waking
up at least once (likely more than once), and I feel exhausted in
the morning.

-going on anything stronger would be very dangerous (morphine,
demerol etc) as I would either get addicted, or become so sleepy
and sick that continuing my studies would no longer be feasible.
Moreover, anything my surgeon was told would get back to my parents
(they accompany me on every appointment) and they've been less than
supportive.

-I'm allergic to codeine, Toridol doesn't work at all, ibuprofen
would possibly shut my kidneys down. Aspirin is the only thing
that's been remotely effective and if taken over the long term
would cause blood problems and stomach bleeding. SURGERY IS NOT AN
OPTION!

I've been told to scrap this campus doctor because "he knows
nothing about your medical history". I told him everything. And
personally, I believe that nobody could know "enough" about my
medical history to help me the way my parents would like me to be
helped (ie magically make the pain go away). They throughly
researched this surgeon, yet I'm ten times worse than I ever was in
my life.

I may seem a little overly attached to Mommy and Daddy. But you
would be too if you were in the house all the time, isolated from
your friends and if Daddy followed you everywhere you went. I can't
even ask to do my Christmas shopping alone. In my father's house,
his word is law.

But my pain is bad enough to make me seriously consider doing
things regardless of whether or not my parents like it. (They
probably won't.) And I don't think I could ever defend or justify
those actions to their satisfaction, for I am still my father's
daughter;in his eyes, I am immature, emotionally disturbed,
ignorant and ripe for exploitation from all quarters because of my
disabilities. I can handle peer pressure just fine. "Parent
pressure" is another thing altogether.

There is a Peer Counselling service on-campus. I'll start off with
them. They might also be able to suggest resources. I'll keep your
info in mind though.

As for you're not being a Canadian, who cares? Anyone who can help
lift people up, especially five days after having an amputation,
gets honourary citizenship in my book! You're an honourary
Canadian, how's that?

Thank you for your assistance. You may have just saved my life.

Michelle Levett

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------



Subject: New
From: Michael.Rooney@f737.n106.z1.fidonet.org (Michael Rooney)
Organization: FidoNet node 1:106/737 - AirBoat OnLine, Houston TX


[This is from the Chronic Pain Conference]

CL>I might even be able to face going on disability and just try to continue
CL>doing what little I could too keep up in my field and private consulting her
CL>and there, but to tell you the truth, I'm afraid that they would never award
CL>me disability. Look how much trouble you had getting it, and it sounds to me
CL>like your disability is obvious and unquestionable. Every doctor I have ever
CL>gone to since being cut off the medication has questioned my honesty, and th
CL>extent of my pain. I'm so sick of trying to explain my situation to stupid
CL>disbelieving doctors I could puke.

Cameron, good talking to you this weekend. If you are thinking of trying
to get disabity (Social Security) the first thing you will need is a doctor
of YOUR OWN who agrees with you and will back you up. The doctor SS sends
you to and does the exam for SS works for them. The one I saw sent them a
report that I exhibited no problems and had no restrictions of movement.
This after he had to help me both on and off the exam table and I showed
minimal ability to bend from the waist, had no movement from side to side,
had a left leg that was permenantly numb from a pinched nerve (documented)
and other outward symptoms. He is being paid by them and his job is to find
you able to work, reasons why you shouldn't be on SSDI. Fortunatley I had
two doctors who gave me their backing and complete files and a written
recommendation to the judge for the hearing. I also got a copy of the
requirements for disability for AS from the local social security office and
went thru it marking the sysnptoms I exhibited and brought it to the hearing
with me. Armed with all this the judge asked the doctor who was present,
their doctor, was the movement I had restricted enough to qualify me. He
had seen me in the waiting area (I did not know who he was at the time) and
saw the problems I had sitting and walking and just said yes. That was it.
I was asked to verify my name, address and SS# and the judge went down a
list of symptoms from the list in the SS law and the doctor matched them
against the records I brought from the doctor and it was over. Took
two years but it was worth it. This December I qualify for medicare and
when they do do the hip replcements that plus the other insurance I have
will pay the total bill. Believe me that is a real mind easer. When I had
two MRI's taken last year the total bill was over $2800 and insurance
paid about $2100 so even with insurance I still had a $700 bill. The last
operation I had (1980), a laminectomy on C1-C2 cost almost $8000 and even
with insurance that was a bear to pay off. Things are just a wee more
expensive now.<g>

It is your decision but it might very well be worth it to try and get it.
I'll send you more detailed info on the steps I took and what a lawyer
had to say about my chances. It is very important to remember that if
you can prove you are disabled the benefits are retroactive to the day
you applied to a maximum of 18 months. I lost 6 months worth of benefits
because the doctor I was seeing for a time was a GP and just prescribed
indocin on the basis of a previous doctor's finding but made no diagnoses
himself. Rather than fight for it and wait possibly another year I just
accepted the decision as rendered. It was my mistake, not theirs that I
did not see a specialist who could have backed up what I said.

What do you get when you put 20 blonds in a frezzer?

Frosted flakes...
---------
Take care, Mike...

 ~ SLMR 2.1a ~ All computers are greedy money eliminators.

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------



Subject: hypochondria support
From: Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara)
Organization: FidoNet node 1:150/140 - Black Bag BBS, Wilmington DE


[This is from the Chronic Pain Conference]

When the pain is real, but tests are negative...  could your
emotions be making you sick?  Hypochondria? Somatizing?

Do you have a paralyzing fear of cancer?  Are you overly terrified
of getting AIDS? Do you have a variety of physical symptoms, aches
or pains for which doctors cannot find a cause?

Millions of people, most of them quite healthy, spend precious
hours every day obsessing over illness or worrying about benign
symptoms. Often, these people have turned unconsciously to sickness
as a way to avoid confronting emotional conflicts.  Or the symptoms
and/or illness fears can be a mask for deeper psychiatric problems,
like depression or anxiety disorders.

We've heard from individuals in the greater NY, NJ, CT metropolitan
area, who are interested in forming a first-of-its-type self-help
group for persons with somatic disorders, especially for what is
often described as hypochrondria. Some of these individuals with
the disorder are professionals themselves, seeking to learn more
about the disorder and what they can do to overcome it.

Those interested in starting this group are enlisting the aid of
medical specialists. For example, Dr. Brian A. Fallon, an assistant
professor of clinical psychiatry at Columbia University has
volunteered to speak on "Bodily Obsessions: Recognition and
Treatment of Hypochondria and Somatic Disorders."  Dr. Fallon, who
has seen hundreds of patients with medically unexplained symptoms,
has published widely on both ends of the somatic spectrum.  On one
hand, he believes that many hypochondriacal symptoms are features
of an underlying psychiatric problem. On the other, he has written
articles arguing that psychiatrists often miss real organic causes
of symptoms, as has been true recently with the diagnosis of Lyme
disease. Currently, Dr. Fallon is investigating pharmacological and
behavioral approaches to the treatment of patients with illness
fears and somatic symptoms.

If you yourself deal with problem, and are interested in attending
the talk or the support group, call Carla in New Jersey at (201)
378-8165 (day or early evening).

- Ed at the Self-Help Clearinghouse

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Subject: hello there
From: Wayne.Briggs@p3.f26.n392.z1.fidonet.org (Wayne Briggs)
Organization: FidoNet node 1:392/26.3 - Star Express, Abilene Tx


[This is from the Chronic Pain Conference]

Have you tried a Pain Clinic operated by a University Medical
Center, County or City Hospital as a "teaching patient ?"

Had long wait but OR & inpatient cost to me was $0 and oupatient
$15 a visit. Had 390 miles dround trip drive. Good luck.

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------



Subject: RSDS, Sympathectomy, and amputation
From: Jim.Graham@p0.f420.n141.z1.fidonet.org (Jim Graham)
Organization: FidoNet node 1:141/420.0 - The Handicap News, Shelton CT


[This is from the Chronic Pain Conference]

Hello.

I'm new to this echo, but after reading a few messages, I have to
ask a few questions.

I am suffering from an advanced stage of RSD in my right foot and
leg.  Nerve blocks give total relieve, but it's only temporary.

Consequently, I am scheduled for a sympathectomy on November 3.

However, although I'm optimistic about the outcome, I am aware that
it may not work.  If it doesn't, I will request a below-knee amputation
because I know of no other physical intervention that is acceptable
to me.

My right foot is now totally paralyzed, and I am presently wearing
a brace just to keep it from dragging the floor, and to give me lateral
support, eliminating the need for crutches.

I have been through long and vigorous physical therapy, and I have
gone through many specialists (neurologists, neuro-surgeons, orthopedic
surgeons, rheumatologists, anesthesiologists, etc.).

If the sympathectomy doesn't work, I'm well aware that a pain management
program may do some good.  But, the pain management folks have told
me point-blank that they won't accept me as long as I believe there
is a physical intervention that has any chance of working.

I have made it very clear that I would even go as far as amputation
before I would consider pain management, and for those that know me,
they understand my logic.

I would much rather go through life with a 5-7 inch below-knee stump
than have to "deal" with this pain for the rest of my life.  I am
well aware that even amputation can leave me with phantom-limb pains,
but that is a chance I am willing to take.  I have nothing to lose
but a bum leg (it's also numb, and I have no tactile feedback).

I have recently read a few horror stories about folks who pursued
amputation for good reasons, yet the medical establishment refused.

What I would appreciate are some opinions on what I can do if I'm
faced with a non-cooperative medical community.

Again, I fully expect for the sympathectomy to work, but I am the
type of person that likes to be prepared.

Thanks,
Jim Graham
Sysop: The Portal Dolmen BBS (812)334-0418
Home: (812)334-7754
UUCP: dolmen!jgraham@moose.cs.indiana.edu

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