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Date:         Wed, 7 Oct 1992 15:15:06 EDT
Reply-To:     "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
From:         "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2956

                             THE HANDICAP DIGEST

                                 Issue # 2956

                         Wednesday, October 07, 1992

Today's Topics:


                                ******


                                Re: RSD Group
                          RSD Support Group,You, Me
                                Re: RSD Group
                          RSD Support Group,You, Me
                    Handling people who don't understand
          Re: disability act, deafness, and inpatient hospital care
                 Re: Newspaper for people with disabilities
                              General Interest
                        Re: RSD Support Group,You, Me
                                  RSD Group


                                ******


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Subject: Re: 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]

 DR>    Agree 100 % and would love to work with you. The reason for the
 DR> letters is as you know RSD is not to well known. The
 DR> letters will help me show the real need for some
 DR> Goverment funding. I talked to Senetor Luft about state
 DR> funding. He explained the prosses to me.

OK, I figured it had something to do with the funding.  We are not
really ready to do that yet, and if you get it set up then we don't
really have to worry about it.  We are really working hard at
getting some of the laws changed or at least some form of
ammendments to the laws.  It is correct that Dept. of Rehab does
recognize it, but on the legal level the Federal Govt. really
doesn't acknowledge it, YET!  Also, a lot of the insurance
companies don't acknowledge it either so if you are depending on
and ins. co. to help, you are going to be fighting an uphill
battle.

I will say also that not all insurance companies are like this, but
most of them are.  For everyone else out there reading this, my
Father got diagnosed, by a doctor workmans comp sent him to, within
a three month period.  Now with RSDS, the first three months is
critical.  If you can get it diagnosed and treated within three
months then there is a good chance of recovery, but after the three
months, your chance of recovery drops off dramatically with the
passage of time.  The ins. co. has fought and drug it out now for
three YEARS!  It started in my dad's left leg and has since spread
to his right leg and now we beleive that it is in both arms, his
spine, his neck and possibly even his face!

If they just could have got him treatment immediately, he might be
totaly healed, instead he is now forced to use a wheelchair most of
the time.

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

Well, I am trying to save up some money for a 14.4 modem.  I can't
afford the long distance phone bills right now, but if no one else
takes the job I will consider it in a couple of months since that
is about when (hopefully) I will be able to get the modem.

                                        Later...  Mike.

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




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Subject: RSD Support Group,You, Me
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 Dave!

12 Sep 92, Dave Resnik writes to Wayne Briggs:

 DR> The RSD has spread to my right arm and knees.

I don't know if you want to hear this or not, but this is not
consistant with a diagnosis of Reflex Sympathetic Dystrophy.  A
real case of RSD does NOT "spread" from one extremity to another.

Arthur

--
Uucp: ..!uunet!bunker!hcap!hnews!376!72.160!Arthur.Saus
Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: Re: RSD Group
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 (18 Sep 92) Mike Lyons wrote to Dave Resnik...

 ML> laws.  It is correct that Dept. of Rehab does recognize it, but on the
 ML> legal level the Federal Govt. really doesn't acknowledge it, YET!
 ML> Also, a lot of the insurance companies don't acknowledge it either so
 ML> if you are depending on and ins. co. to help, you are going to be
 ML> fighting an uphill battle.  I will say also that not all insurance
 ML> companies are like this, but most of them are.  For everyone else out
 ML> there reading this, my Father got diagnosed, by a doctor workmans comp
 ML> sent him to, within a three month period.  Now with RSDS, the first
 ML> three months is critical.  If you can get it diagnosed and treated
 ML> within three months then there is a good chance of recovery, but after
 ML> the three months, your chance of recovery drops off dramatically with
 ML> the passage of time.  The ins. co. has fought and drug it out now for
 ML> three YEARS!  It started in my dad's left leg and has since spread to
 ML> his right leg and now we beleive that it is in both arms, his spine,
 ML> his neck and possibly even his face!  If they just could have got him
 ML> treatment immediately, he might be totaly healed, instead he is now
 ML> forced to use a wheelchair most of the time.

     Mike..  just a word of  caution..  seriously question (interrogate) your
doctor if he  in any way  tries to order  steroids for your  dads rsd..  this
happned  to  my  husband  and  the  resulting  steriods  gave  him  bilateral
avascualar necrosisof the femer heads...  not very likely but it does happen.
I know steroids  can *somtimes* help..   but  seriously ask  him risk..  vs..
hoped for benefits......sometimes..its just not worth it.  He is now 40 with
one titanium hip.. while they wait for the other one to finish crumbeling
<they want him to suffer with it as long as possible <even months matter i
guess> due to his age and size <6 ft) they do not WANT to do this until the
bitter end because he is so young.   With nothing for pain <they dont want
an addict after all> <rolling eyes>.  So the hell he has been through the
last 5 years is even worse then the rsd of the leg alone.  It caused his
massive heart attack last winter.

my best wishes to you and your dad

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: RSD Support Group,You, Me
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]

 DR> The RSD has spread to my right arm and knees.

 AS> I don't know if you want to hear this or not, but this
 AS> is not consistant with a diagnosis of Reflex
 AS> Sympathetic Dystrophy.  A real case of RSD does NOT
 AS> "spread" from one extremity to another.

Arthur,

I am not sure who told you this information, but my Father has RSDS
and he originally got it in his left leg and it has spread to his
right leg and now it is in his arms.  My father has seen over 18
doctors in the three years of having RSDS and some of them did not
know what he had and when he explained to them that he had RSDS,
some of the doctors didn't know what it was.  This is why there is
such a need for some form of "education" for doctors.  Anyways, my
father's treating physician is an RSDS specialist in South Bend,
IN. and he would tell you that it does spread.  We have contacted a
couple of specialists in RSDS and have gone to the medical library
to get photo copies and even disks with information and it all
shows that RSDS will spread.  As a matter of fact, the doctors
around here that did not know what RSDS was basically told Dad to
push himself and they would "see what happens".

This "pushing oneself" can and normally does cause it to get worse
and/or spread.  Just sharing a little info.

                             Later...  Mike.

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




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Subject: Handling people who don't understand
From: Caleb.Burns@p0.f14.n105.z1.fidonet.org (Caleb Burns)
Organization: FidoNet node 1:105/14.0 - Busker's Boneyard, Portland OR


[This is from the Chronic Pain Conference]

Dear Cindy: I'm a civilian here -- I don't have a chronic pain disorder.
I'm a psychologist and I work with some Chronic Pain sufferers. There's
one story I like to tell them, about Samuel Johnson, the father of the
English Dictionary, who was sitting at a formal dinner in England. The
high nobles were there, with silverware, chrystal, etc. Sam Johnson bit
into a hot potato(e) and spit it out onto the plate. Everyone was
glaring at his bad manners, but Sam Johnson glared back and said, "You
know, some damn fool would have tried to swallow that!" (I tell my
clients that "some damn fool would try to go walking", or "make the
bed", or "go out on a boat on a lake". I'm sure glad you're not that
kind of a fool.)
Yours, Caleb

--
Uucp: ..!uunet!bunker!hcap!hnews!105!14.0!Caleb.Burns
Internet: Caleb.Burns@p0.f14.n105.z1.fidonet.org




------



Subject: Re: disability act, deafness, and inpatient hospital care
From: dmimi@ecsvax.uncecs.edu (Mimi Clifford)

[This is a response from the DEAF-L mailing list.]

In regard to meeting the deaf person's needs in a mental health
setting.

With ADA in force, mental health clinics, hospitals, etc., have a
clear responsibility to meet needs with an interpreter or whatever
is necessary.

However, few have made provision for this.  I've looked into the
situation in North Carolina (of course, this is a state
responsiblity usually), to find that there are very few situations
in the State where a deaf or hard of hearing person can get mental
health help that is appropriate for them.

There is one residential unit in one mental hospital that has an
interpreter present at least part of the time.  What happens to
anyone else with such needs I don't know.  I could get side-tracked
here with a question of what happens to an older person who is
either misdiagnosed as mentally incompetent when he/she is deaf or
hard of hearing, or who has both conditions.  But, let me not
digress.

When the mental health facility's staff was asked how many deaf/hoh
people they served, they said "none".  To which I replied, why
should anyone come to you when you can't provide service to them?
"Oh" they said.

Now, in North Carolina, the state Division of Mental Health and the
State Division for the Deaf and Hard of Hearing are collaborating
to provide a variety of services for us.  Which requires that deaf
and hard of hearing people remain active in demanding such
services, whether that behavior is popular or not.

dmimi@ecsvax.uncecs.edu  dmimi@ecsvax.bitnet
Miriam (Mimi) Clifford; 2535 Sevier St, Durham, NC 27705; 919-489-4821




------



Subject: Re: Newspaper for people with disabilities
From: 34AEJ7D@cmuvm.csv.cmich.edu (Bill Gorman)

I'd like to know too, but I recommend that anyone who subscribes
to such a publication do it through a PO Box.


W. K. Gorman




------



Subject: General Interest
From: Linda.Cummings@f34.n375.z1.fidonet.org (Linda Cummings)
Organization: FidoNet node 1:375/34


[This is from the Chronic Pain Conference]

Hi ya Arthur!

 > What!? (Arousing from sleep).  Was someone calling me?? :-)

Well, I thought you were going to nap all through this teaching
session. Did you even takes notes?  }:-)

 > Seriously, I'll be glad to try to further explain this procedure.

I was hoping you'd jump in, having administered plenty of these
injections, I'll bet.

 > Following this, the only sensation of
 > the epidural steroid injection should be a hard pressure
 > sensation, as if someone was pushing on your back with one finger.

Hahahaha.....oh, stop.....hehehehe.......you're killing me, Arthur!
Now, you know by now that I'm one of those "unusual" people.  These
procedures just about killed me!  It was *almost* as bad as a
myelogram "for me."  While, it didn't actually *kill* me, I was
sure wishing I'd pass out or something.  Why can't they put you to
sleep for these things?  (All kidding aside, I know they do help
more people than not.)

 > Some folks notice a
 > mild cramp sensation either in the back or going down one or both
 > legs at the time of injection, but again this is not generally
 > considered painful, just slightly uncomfortable or awkward.

Mild cramp?  hehe   And what about that burning sensation?  Of
course, *some* anesthesiologists are really kind to you and give
you novacane or something to help deaden your legs so you won't
feel all the cramping and burning.

 > I usually administer the doses in a 2 week interval, then stop for
 > at least six months, but preferably for a year.

I suspect this is the "normal."  This is what I was told also.

 > I guess it's sort-of like the car ads talking
 > about their gas mileage where they say "your individual mileage
 > may vary".

Damn!  My poor little car won't even back out of the driveway then.  ;-)

Linda

--
Uucp: ..!uunet!bunker!hcap!hnews!375!34!Linda.Cummings
Internet: Linda.Cummings@f34.n375.z1.fidonet.org




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Subject: Re: RSD Support Group,You, Me
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]

ML>  DR> The RSD has spread to my right arm and knees.
ML>  AS> I don't know if you want to hear this or not, but this
ML>  AS> is not consistant with a diagnosis of Reflex
ML>  AS> Sympathetic Dystrophy.  A real case of RSD does NOT
ML>  AS> "spread" from one extremity to another.

Hi Mike breaking in if you do not mind!!! Yes RSD will spread. I
have met Mr. Lyons and he show all signs of RSD spreading. If you
want to now how I can tell it is I can tell you I also have RSD. I
got it 3 1/2 years ago in my left forearm. Dr Palmer told me I had
it, but his treatment was wrong. It caused it to get worse. Over
the years the RSD spread. I now have it in my shoulder's, knee's,
and in my jaw. Not only can it spread but it breaks down the bone
and muscel as well. An injury can make it spread. I got a cavity
and the pain alone caused it to spread to my jaw. Certian medical
tests can cause it to spread as well. Take EMG/NVS. That is a lot
of stress to the nerve. It is said not to allow a Dr. to preform it
if you now you have RSD.

        TTYL    -=[ Dave Resnik ]=-

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




------



Subject: RSD Group
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]

 JB> On (18 Sep 92) Mike Lyons wrote to Dave Resnik...

 ML>> Now with RSDS, the first three months is critical.

 ML>> It started in my dad's left leg and has since spread to
 ML>> his right leg and now we beleive that it is in both arms, his spine,
 ML>> his neck and possibly even his face!

To All who are interested in Reflex Sympathetic Dystrophy:

I am concerned that many pains are being labeled RSD, when this is
not an appropriate diagnosis.  I have seen similar statements to
the one above, and have responded in this echo about this type of
statement previously.  This is NOT characteristic of Reflex
Sympathetic Dystrophy!!

RSD DOES NOT begin in one location then move to involve other
extremities! There may be other serious pain problems that act like
this, but this is NOT characteristic of Reflex Sympathetic
Dystrophy.  This is so atypical, it would I woulsuggest to me that
this pain problem is anything EXCEPT RSD!  I would recommend you
consult a physician who specializes in these type of problems
before accepting a diagnosis of RSD if the pain "spreads" from one
part of the body to another, rather than involving a single
extremity only.

Also, RSD almost always occurs in an extremity AFTER a known injury
to that extremity.  That "known injury" may even be surgery to that
extremity in which the operation and healing were otherwise
perfect.

RSD is a very strange phenomenon, and also very rare!  Most
physicians will never see a single case in their lifetime (and that
even includes military physicians who see injuries due to war).

Arthur

--
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Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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                                ******

                  End of Issue # 2956 of the Handicap Digest

                                ******
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