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Date:         Wed, 7 Oct 1992 15:16:14 EDT
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From:         "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2959

                             THE HANDICAP DIGEST

                                 Issue # 2959

                         Wednesday, October 07, 1992

Today's Topics:


                                ******


                            Facial disfigurement
                                 Heres one.
                            Iatrogenic illness  s
                                  RSD Group
                                  RSD Group
                                    meds?
                              Let's Get Started
                                Re: RSD Group
                             SPORTS AND CHATS...
                           Re: SPORTS AND CHATS...


                                ******


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                              Bill McGarry (Moderator)
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Subject: Facial disfigurement
From: Patricia.Bregman@f24.n3602.z1.fidonet.org (Patricia Bregman)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Rare Disorders Conference]

EM>   Let's Face It
  >   P.O. Box 711
  >   Concord, MA 01742

        There is also a conference on Ability OnLine in Toronto
        (416-650-5411) moderated by someone from About Face, an
        organization for people with a facial disfigurement.

 * OLX 2.1 TD * A closed mouth gathers no feet.
===
 * QNet3 * ADAnet: Ability OnLine - Toronto Canada - 416/650-5411

 # Origin: ADAnet(tm) NetHub Birmingham, Alabama (205)854-9074  (94:94/1)

--
Uucp: ..!uunet!bunker!hcap!hnews!3602!24!Patricia.Bregman
Internet: Patricia.Bregman@f24.n3602.z1.fidonet.org




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Subject: Heres one.
From: Connie.Spector@f0.n2202.z1.fidonet.org (Connie Spector)
Organization: FidoNet node 1:2202/0 - Boat Town USA, Mt. Clemens MI


[This is from the Rare Disorders Conference]

BA>Has anyone heard of Transverse Mylitis? If so please respond. Thank you,
BA>Barndog

Acute Transverse Myelitis is "a syndrome in which acute spinal cord
transection of unknow cause affects both gray and white matter in one
or more adjacent thoracic segments.

"Sudden onset of localized back pain is followed by sensory  symptoms
and motor weakness ascending from the feet.  The defect may progress
over several days and is severe, usuallywith sensory motor paraplegia,
urinary retention, and loss of bowel control.

"The condition must be differentiated from anterior spinal artery
occlusion and acute cord compression.  CT scanning, myelography, and
blood serologies are diagnostic.

"Treatment is nonspecific.   Unfortunately, most patients are left
with significant disability, with the exception of those patients with
a viral meningoencephalitis."

Hope this helps.  If you need more information, let me know.

Good luck...

Regards...

 ~ OLX 2.1 TD ~ Tag line?  Hmmm, let me think about it...

--
Uucp: ..!uunet!bunker!hcap!hnews!2202!0!Connie.Spector
Internet: Connie.Spector@f0.n2202.z1.fidonet.org




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Subject: Iatrogenic illness  s
From: Patti.Bader@f1104.n202.z1.fidonet.org (Patti Bader)
Organization: FidoNet node 1:202/1104 - The Dreaming City, La Mesa CA


[This is from the Chronic Pain Conference]

| > You wouldn't happen to remember the name given to people suffering from |
| > chronic pain as a result (or mainly due to) the old type of dye used in |
| > Myelograms, would you?  I think, quite frankly, that my chronic pain has|
| > been aggravated by the old type of dye back in 1982.                    |
+

------

-----+

Hi Linda!
The name is Arachnoiditis.  I'm a contact for people in San Diego,
kind of a telephone support group.  If you'd like I can give you
the address, etc. of the Arachnoiditis Information and Support
Network.  They have loads of info and are pretty current with the
latest treatments, etc.  They have a quarterly newsletter and I can
give you a phone number of someone close to you, for support and
info.  Just let me know and I'll get you (or anyone else) info.
Thanks,
Patti

 * MegaMail 2.10 #0:

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Internet: Patti.Bader@f1104.n202.z1.fidonet.org




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Subject: RSD Group
From: Dave.Resnik@p100.f5.n232.z1.fidonet.org (Dave Resnik)
Organization: FidoNet node 1:232/5.100 - EPE Online, East Peoria IL


[This is from the Chronic Pain Conference]

Long time no TTYL. Sorry I have not echoed for a while but I moved.
As a lot of you know I have been working on a RSD support and a RSD
echo for about 1 year now. Good news it is about set up to run. Now
I need your help!! For all who want to be involved please send a
letter to me at:

       Dave Resnik
       Route 8
       E. Peoria Il 61554

Yes I know it is a funcky address but I have a farm if that helps any.

Here is the format I need from you. Please note I will take your
letters to my Congressman, I will explain later on..

       Your FULL name
       Your Address
       State if you have RSD or know of a person who has it.
       State if you are in the medical profession.

Please give me writen permission to hand your letter over to my
local Congressman to be used as a signature of petition for the
approval of a RSD Foundation. (Non Proffit) If you wish for me to
reply please enclose a S.A.S.E with your letter.

As I was saying I have been working with my Congressman to start a
RSD Foundation. If I get enough people to send in letters it will
be taken to the Capital for approval. The main goals I have set up
are the following:

  1) A bbs 24 hours, 9600 baud, & 260 meg free on the harddrive's.
Running on a 386 DTK using the software I wrote (Battle Ship)
  2) A current listing of all pain clinic's that treat RSD.
  3) A current listing of all DR.'s that PROPERLY treat RSD.
  4) A RSD ECHO (ask your sysop if he/she would carry it. I will
give the node number)
  5) I would like to start a network of groups where others involved can
get togiether to share and help eachother out. This will require help
from some of you. Please let me know.
  6) A news letter sold at the cost of printing / shipping
(NON PROFFIT but it does add up fast)
  7) In the newsletter and on the bbs space will be made for people to
write about such things as treatments, aids, ways of doing simple
(that is harder then ^$%^$)^%&^$%^#$% to do) daily thing, and words of wisdom.

If you wish to contact me voice my number is 309)698-5744. The best
time to reach me is Tue-Thur 9am-12pm then Mon-thur 9pm-11pm
Illinois time. I do read the Chronic Pain Echo but do not have the
time to reply to all the great messages. So if it looks like I am
blowing you off not true. This is a lot of work and I do have 2
small ones to handle. Please ignor the TAG line since my bbs is
down till I put it up as the RSD BBS and I have to have a node# to
get this echo. If you wish to netmail me you may send it to
1:232/5.100

              Thanks ALL,
                         -=[ Dave Resnik ]=-

--
Uucp: ..!uunet!bunker!hcap!hnews!232!5.100!Dave.Resnik
Internet: Dave.Resnik@p100.f5.n232.z1.fidonet.org




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Subject: RSD Group
From: Mike.Lyons@f210.n232.z1.fidonet.org (Mike Lyons)
Organization: FidoNet node 1:232/210 - The Lyons Den, Pekin IL


[This is from the Chronic Pain Conference]

Dave,

Just some information here.  You do NOT need peoples letters just
to set up an RSDS support group.  You do not need a congressmans
approval for a foundation.  If you are setting up a foundation
(non-profit) and need all the signatures to get some sort of
funding then you should state this and not mislead all the users
out there, as this is the only reason I can think of that you would
need these letters.

If there is another reason as to why you need these letters I would
really like to know.  My mother and father are in constant contact
with two doctors who support there "group" or "foundation"(however
you want to call it) and they are in contact with and have been in
contact with two congressman AND two state representatives and we
have never been told that we NEED letters such as you are
requesting.  The letters would be nice especially for us to get the
laws changed.  We are also going to work on getting something done
to help correct workmans comp.  When the time comes to do these
things we will request letters also, but we will need them for
petitions to change laws!  We are here for support and information,
but we are working hard at changing some of the laws to help people
with RSDS.

A long time ago, you made reference to talking with a Dr. Dallas.
This is one of the Dr. that we have supporting us.  Have you spoken
to this Dr. lately?

I am not trying to start wars here, but you have talked with one
congressman and he says you need something that none of the people
we talked to said is required or needed.  Just letting you know so
that you might be able to get the bbs up and running SOONER!  In
order to beat RSDS, we all need to pitch in and give each other a
helping hand.

                                Later...  Mikey.

--
Uucp: ..!uunet!bunker!hcap!hnews!232!210!Mike.Lyons
Internet: Mike.Lyons@f210.n232.z1.fidonet.org




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Subject: meds?
From: Jackie.Burtch@p19.f645.n105.z1.fidonet.org (Jackie Burtch)
Organization: FidoNet node 1:105/645.19 - Rob's Wreck Room, Longview WA


[This is from the Chronic Pain Conference]

Hiya all :)

This might be of interest to some of you.  I have done some searching and
can purchase tylenol 2 over the counter as stated in canada.  HOWEVER most
people CANT get to canada.  The border guards will let you take 4 bottles
over the boarder with out much problem.   It would take 2 2's to equal one
3 and 4 2's to equal one 4, and so on.

This is the new news.   The pharmacies in canada are allowed to

MAIL !!!  into the united states.   Canadian asprin.   This is tylenol/

asa with codeine in  number one strength!!!!.  They cannot mail 2's

but can mail 1's.  These have 8 mg of codine per pill.  The current cost is
34.00  for 800 pills  <4 bottles>.  There are regulations and they do keep
records.  But if you call them and send a money order they are more then
happy to mail this "canadian asprin"  LEGALLY"  into the us.

You would need to be carefull however about ingesting large quantities of
asprin or tylenol included to get the needed benefits.

Anyone who NEEDS or WANTS the PHONE NUMBER of a participating canadian
pharmacies please write to me here and i will be glad to e mail it back to
you.   for privacy, try net mail :) if you preffer.

If someone is really suffering it is worth it.

Hugggz to all

Jackie

--
Uucp: ..!uunet!bunker!hcap!hnews!105!645.19!Jackie.Burtch
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Subject: Let's Get Started
From: Jackie.Burtch@p19.f645.n105.z1.fidonet.org (Jackie Burtch)
Organization: FidoNet node 1:105/645.19 - Rob's Wreck Room, Longview WA


[This is from the Chronic Pain Conference]

On (13 Sep 92) Arthur Saus wrote to Phyllis Cohen...

Hey Arthur?  When I broke my leg they gave me tylenol 4, that didn't work so
they gave me percodan.. then that didnt work so they gave me tylox...
I imagine they don't mind doing this because its a "short term lying down
type illness" visable and concrete.  For my husbands excruciating chronic
pain they do "nothing"  he "was taking 1200 mg of ibuprofen  6 times a day"
but that even does him no good.

anyway, both tylox and percodan
are oxycodone.. so what is the fundamental diffs?

and what are the differences between this and tylenol 4?  <straight codine>

hugz, smiles and thanks

Jackie

--
Uucp: ..!uunet!bunker!hcap!hnews!105!645.19!Jackie.Burtch
Internet: Jackie.Burtch@p19.f645.n105.z1.fidonet.org




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Subject: Re: RSD Group
From: Dave.Resnik@p100.f5.n232.z1.fidonet.org (Dave Resnik)
Organization: FidoNet node 1:232/5.100 - EPE Online, East Peoria IL


ML> RSDS.  A long time ago, you made reference to talking with a Dr.
ML> Dallas.  This is one of the Dr. that we have supporting us.  Have
ML> you spoken to this Dr. lately?
  Yes and it has been very helpfull.
ML>         I am not trying to start wars here, but you have talked
ML> with one congressman and he says you need something that none of
ML> the people we talked to said is required or needed.  Just letting
ML> you know so that you might be able to get the bbs up and running
ML> SOONER!  In order to beat RSDS, we all need to pitch in andgive
ML> each other a helping hand.

Agree 100 % and would love to work with you. The reason for the
letters is as you know RSD is not to well known. The letters will
help me show the real need for some Goverment funding. I talked to
Senetor Luft about state funding. He explained the prosses to me.
Up to now it has been people like you, your parents, and myself
fighting the goverment. It has been only lately that RSD is an
automatic D.O.R.S. (Dept. of Rehabilatation Services)
qualifacation. In other words the Goverment now looks at RSD in the
same mannor of the blind. This was possable from many letters sent
to the goverment.

What I am trying to do is set up (using the way D.O.R.S. was set
up) a Goverment funded suport just for RDS. I was told I need proof
such a thing needs to be proven a need is really there. The only
way I know is with letters. Lots of letters!!!

As far as just a RDS group true you do not need anything at all but
just a group of people but you are very limited to what you can do.
On the other hand you can go a step further and start a Society. A
Society will allow for diffrent Tax laws. Drives for donations. On
the other hand a Fundation has further power and can be funded in
many other ways under curent tax laws. The next step (one I rather
not do unless it is the only way) is a DEPT of. In this case you
are under state laws and the state runs it. Also a DEPT. of is
under state funding and can get cut at any time.

I hope this explains why you dad has not been told to get letters.
We are doing 2 totaly diffrent things that has totaly diffrent laws
and ways to start.

BTW I am looking for a someone to hub my RSD echo in your area so
if you want the job you got it.

         TTYL    -=[ Dave Resnik ]=-

PS: Say hello to your Dad for me. My voice # is 309)698-5744 come
up to the farm. I have a 5 acre lake. Call me for directions since
you will never find it on the map. I am about 30 minutes from where
you live.

--
Uucp: ..!uunet!bunker!hcap!hnews!232!5.100!Dave.Resnik
Internet: Dave.Resnik@p100.f5.n232.z1.fidonet.org




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Subject: SPORTS AND CHATS...
From: Sheila.Fava@f68.n382.z1.fidonet.org (Sheila Fava)
Organization: FidoNet node 1:382/68 - Diabetes Discussion, Austin TX


[This is from the Abled Athlete Conference]

In a message to Sheila Fava <09-03-92 13:27> Carl Cogdill wrote:

CC> Currently I am playing B-ball on the Rolling Rams.

WC B-Ball (as well as WC Soccer, Vollyball and Tennis) is exciting
and fast moving.  I remember being invited to watch a B-Ball in Ft.
Worth.  "Naw, not today." was my reply.  I was conned into watching
and found myself rooting for the Houston Cougers.  Awesome!  I was
hooked for life!

CC> The wheel chair sports have really helped me break back into the
CC> world in physical abilities. I was really happy to see this national
CC> Echo and have mentioned it to all of my friends and non friends.

I hope you have told your friends and non-friends there is more to
WC sports besides B-Ball.  My sport is disABLED Competitive
Swimming....but there are other (non-contact but nevertheless
exciting) sports other than Swimming.  Archery, Airguns, Bowling,
Tennis (both lawn and table), Track and Field, Snow Skiing,
Sailing, Scuba, Rugby (contact sport), Raquetball, Fishing (had to
add that), Water Skiing....The list is endless.  Sports unite the
mind, spirit and soul and the feeling of success is top-notch!
Physical fitness?  WoW!  You bet!

Do you subscribe to the magazine 'Sports 'n' Spokes'?  Very
informative mag...it gives the results of sports competitions and
names the names of competitors and teams.  Did you know one of the
cable t.v. stations will carry the games in Barcelona?  Do you have
any friends going to Barcelona?

CC> I at least know that people in Austin read their mail.

They -do- read the mail down to the last paragraph!  True, there
are some lurkers but they are the -potential- Paralympic athletes!

And now I will tell you something:  I am not a Texan....nor from
Austin.  My computer closet is located in Nevada.  I call here via
PCPursuit.  Why?  Because I think this Conference is most important
to all disABLED -potential- athletes, because the ABLED-Athlete is
more than welcomed here, because I am a disABLED athlete and
because the electronic trip to Austin gets me away from the blah,
brown desert.   The last part of that sentence is pure spoof...

                    ---Sheila

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

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Subject: Re: SPORTS AND CHATS...
From: Sheila.Fava@f68.n382.z1.fidonet.org (Sheila Fava)
Organization: FidoNet node 1:382/68 - Diabetes Discussion, Austin TX


[This is from the Abled Athlete Conference]

The quoted message (below) is quoted with no charge to the sender:

CC> I was really glad to get your reply (lengthy one at that).

Never let it be said, Carl, that "Motor-Digit" Fava sends short
messages.  I realize a smaller town (like we both live in -- and
remember I do not live in Texas) has less to offer in the way of
athletics for the disABLED.  It requires a constant, "Hey!  I'm
here!" reminder to the TAB population and the disABLED population.
Transportation can be a down-right bear when it comes to traveling
from from home to competition and back again.  And the possibility
of other disABLED -potential- athletes is reduced as is the smaller
the town.  Nevada has four persons per square mile --- ! ---
However, (according to statistics) ten percent of the population of
a State should be disABLED in some way.  Those statistics are not
just for the age group 40 to 100 years of age -- you'd think they
are, but they aren't -- the statistics include the culturally-born
disABLED as well as traumatic disABLED persons of all ages.

But, where is the disABLED -potential- athlete?  Probably living in
a small town with a desire to be an athlete -- but no
transportation to the adaptive sports program.  I say that because
I live in a State where I am the -only- disABLED competitive
athlete but where the swimming pool is available year 'round and
transportation is semi-accessable (depending on the mode of
transportation).

How far are you willing to travel to a competition?  Is your team
located in about the same vicinity as you?  Is your team
sponsored?

CC> (Town is also a retirement community)

     Are you retired?

CC> I have been thinking of playing tennis and have the chance to grow into
 CC> that sport as well as I have in b-ball.

Those two sports are also the most popular sports...and WC Rugby
comes in a close third (I'm talking about the choice male WC
athletes make.).

Speaking of never ending sports info and "Sports 'N' Spokes"
Magazine:  Do you also belong to NWAA (National Wheelchair Athletic
Association)?  Now, -that's- a fount of inforDmation -plus- each
issue of the newsletter gives a calendar of up-coming sports
competitions, when (and where) they will be held, who to contact
and the sponsoring athletic association.

Now that I've yakked on and on about my favorite subject, I will
close.  However, I'll be back.....

                    ---Sheila

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

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Internet: Sheila.Fava@f68.n382.z1.fidonet.org




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                                ******

                  End of Issue # 2959 of the Handicap Digest

                                ******
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU