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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
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Date:         Fri, 28 Aug 1992 12:17:12 EDT
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2896
X-To:         LHCAP <l-hcap@VM1.NODAK.EDU>

                             THE HANDICAP DIGEST

                                 Issue # 2896

                           Friday, August 28, 1992

Today's Topics:


                                ******


                                    HELP!
                       Virtual Reality and Disability
                               Orphan drug act
                          Charcotte merrytooth dis.
                        Re: Charcotte merrytooth dis.
                          Charcotte merrytooth dis.
                                  LIGHTNING
                            Need sports activity
                                    Pain
                                  more pain


                                ******


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                              Bill McGarry (Moderator)
                              (203) 337-1518



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Subject: HELP!
From: sspeigle@magnus.acs.ohio-state.edu (Susan Speigle)

Wanted!

Ideas on what kind of business my disabled husband can set up at
home with a PC.

Any suggestions or recommendations are welcome.

Anyone out there done this?  PLEASE let us know what and how you
are doing.

Thank you,

Susan Speigle




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Subject: Virtual Reality and Disability
From: VFOAO073@vax.csun.edu (Harry Murphy)

[Forwarded by Patt Bromberger <patt@squid.tram.com>]


California State University, Northridge (CSUN) offers to
serve as an electronic distribution vehicle for information
about Virtual Reality and Disability.  Please send items
to HMURPHY@VAX.CSUN.EDU

If you know of others who would like to receive information,
please forward their email addresses.

CSUN conducted a conference on VR and Disability as a part of its
Seventh Annual International Conference, "Technology and Persons
with Disabilities."  A dozen papers were presented, including a
keynote address by Jaron Lanier of VPL.  Single copies of the
Proceedings of this VR and Disability conference are available
at no cost.

CSUN's Eighth Annual Conference, March 17-20, 1993 will again feature
special sessions on VR and Disability and papers are invited.  For a
Call for Participation, please contact CSUN electronically or
otherwise.

Dr. Harry J. Murphy, California State University, Northridge (CSUN),
18111 Nordhoff Street - DVSS, Northridge, CA 91330, Phone: 818 885 2578;
FAX: 818 885 4929; EMAIL: HMURPHY@VAX.CSUN.EDU
Calendar Items:  "Technology and Persons with Disabilities", 8th Annual
Conference, LAX Marriott Hotel, March 17-20, 1993, with special sessions
on Virtual Reality, and Speech Recognition.  "Virtual Reality and
Persons with Disabilities," June 17-18, 1993 at a San Francisco Airport
location (to be announced).







------



Subject: Orphan drug act
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]

The 1992 Orphan Drug Act Amendments (S. 2060) passed the Senate
Labor and Human Resources Committee on July 1, 1992 and is expected
to go to the full Senate in the near future (it may have gone
already).

The amendments, similar to ones vetoed by President Bush last year,
are intended to make sure that drug companies do not use the Orphan
Drug Act provisions which give extended patent protection and
grants to make extraordinary profits.  During the previous hearings
last year evidence was given that while many of the drug companies
act responsibly and do not use the special status of the drug to
charge outrageous prices, there are several companies which have
taken advantage of the Act.

According to the National Organization of Rare Diseases, 85% of the
drugs covered by the Act have annual sales of less than $10 million
showing that the Orphan Drug Act was successful in getting
companies to develop drugs with limited market value.

In one case, however, one drug had more than $300 million in sales
its first year on the market, while another drug was priced at
$300,000 a year per patient.

The new amendments will extend the present 7 year extended patent
to 9 years and the $200 million trigger point will be an incentive
to keep drug prices low so that the trigger isn't reached too
quickly.

Apparently drug companies are very concerned about the legislation
seeing it as the first step in controlling drug prices, even though
the Act does not regulate prices, but rather uses the trigger point
as an incentive to keep prices low.

The proposed amendment would remove a drug's "orphan status" once
it reached sales of $200 million cumulatively.

===
 * QNet3 * ADANET:41/62/19:Ability OnLine - Toronto Canada - 416/650-5411

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Subject: Charcotte merrytooth dis.
From: Mark.Dawson@f24.n3602.z1.fidonet.org (Mark Dawson)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Rare Disorders Conference]

I am writing (typing) from the Easter Seal building in Toronto, and
have just finished speaking to a parent of a child with Charcotte
Merrytooth Disease.  ANYONE who can provide some information about
this very rare disease is asked to please leave me a short note
about it, or perhaps some contacts that may be helpful to us.

Thanks,
Mark Dawson
Research Assistant
The Easter Seal Society
===
 * QNet3 * ADANET:41/62/19:Ability OnLine - Toronto Canada - 416/650-5411

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Subject: Re: Charcotte merrytooth dis.
From: Bill.Mcgarry@p0.f420.n141.z1.fidonet.org (Bill Mcgarry)
Organization: FidoNet node 1:141/420.0 - The Handicap News, Shelton CT


[This is from the Rare Disorders Conference]

Hi Mark,

The exact name is Charcot-Marie-Tooth Disease and there is
an organization that can help with information:

   CMT International
   34-B Bayview Drive
   St. Catharines, Ontario L2N 4Y6
   (416) 937-3851

I believe that I also have some information on CTM from the
National Organization for Rare Disorders in electronic format
but it's a bit too long to post here.  Do you have an e-mail
address so that I can send it on up to you?

Bill

Oops, almost forgot, contact NORD as well:

  National Organization for Rare Disorders
  P.O. Box 8923
  New Fairfield, CT 06812
  (203) 746-6518

--- Opus-CBCS 1.14
 * Origin: The Handicap News BBS (1-203-337-1607) (1:141/420.0)
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Subject: Charcotte merrytooth dis.
From: Jerry.Snell@f635.n100.z1.fidonet.org (Jerry Snell)
Organization: FidoNet node 1:100/635 - Travel Online, Lake St Louis MO


[This is from the Rare Disorders Conference]

 Mark Dawson wrote about CHARCOTTE MERRYTOOTH DIS. on 08-1192:

MD>I am writing (typing) from the Easter Seal building in Toronto, and
MD>have just finished speaking to a parent of a child with
MD>Charcotte Merrytooth Disease.  ANYONE who can provide some
MD>information about this very rare disease is asked to please
MD>leave me a short note about it, or perhaps some contacts that
MD>may be helpful to us.

Cardinal Glennon Hospital for Children, a division of Saint Louis
University Hospitals, in St. Louis, Missouri, USA, can provide you
with information about Charcot-Marie-Tooth disease.

   Jerry
===
 * DeLuxe/386 1.25 #7098 * Time flies like the wind-fruit flies like bananas.

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Internet: Jerry.Snell@f635.n100.z1.fidonet.org




------



Subject: LIGHTNING
From: Rosemary.Kwaak@f21.n3619.z1.fidonet.org (Rosemary Kwaak)
Organization: FidoNet node 1:3619/21 - Inner Sanctum, New Port Richey FL


[This is from the Rare Disorders Conference]

Hi, I am looking for answers. My husband was struck by lightning,
on the left side if his head, just behind his left ear. The
lightning travel throught his body and exited his right foot. That
was over a year ago, and still today he is suffering from his
injuries. The doctors he has been taken to do't seem to know, or
fully understand. Becuae when I ask them questions, their reply is
'mind over matter, orcannot fine a direct cause due to the
lightning'. Well I am sure of one thing,he was a very active,
healthy man before he was injury, and if the lightning didn7t do
it, then what did?. These are a few of his complaints, and if
anyone out there s of someone whocould help me,I would be very
greatful.

1). Double Vision, now wears prision in his glasses
2). hearing lost 40% in left ear 25% in right ear, ringing in both
ears all the tie, and now wears hearing aides in both ears
3). Vertigo dizzness all thetime, and will lose his balance
4). memory lost, both persent and things that happen in the past
5). unable to retain new learn information
6). tired ALL the time, no energy to do anything
7). pain that goes from the neck, spreads out to both shoulders, goes
down the spine to lower back and spreads out on the lower back and shoots
down both legs.
8). spasms in both legs.
9). he loses color and will start to sweat, and then the next minute he
will be cold and his feet will turn blue, even if it is 97% outside
and you are dying from the heat.
10). he loses his temper very easy, mood changes is an understatement
11). and several more things........but like I said, his docotrs have
made the statement it is mind over matter, and cannot fine a direct
cause due to the lightning, which DRIVES me crazy. If anyone can be
of help, please respond......

                 Rosemary

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------



Subject: Need sports activity
From: Greg.Pickering@f24.n3602.z1.fidonet.org (Greg Pickering)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Abled Athlete Conference]

EH>I need to find organized sports activities with people in similar
EH>situation to stoke the competitive fires again.  My doctors told me that

        Hi Ernie! Ever think about swimming? diving?

EH>unless technology catches up I will not be able to walk by the time I'm
EH>30.  I cannot seem to accept that.  However, if that is the case, I want
EH>to find something to keep me going until it is no longer an option.

        Ernie, if the above don't suit your taste & you must use a
        w/c in the future, there's w/c basketball, volley ball,
        racing etc...

EH> * Origin: Home of the WordPerfect & Real Estate Echos (1:266/21)

        Just how close are you to me here? Ask Sheila Fava for other
        suggestions. She's swims competitively and destroy's her
        competition! :) She hosts the Rime Disabled conf, as well as
        ADAnet sports and another conference.

EH> * QNet3 *  Pick's Place * v32/v32bis * HST/16800 * 2017650164 * 24 hrs *

        This is where I am, where are you?

-Pick
===
 * DeLuxe/386 1.25 #188sa  DISABILITY: Dynamic Indefatigable Super ABILITY!
 * QNet3 *  Pick's Place * v32/v32bis * HST/16800 * 2017650164 * 24 hrs *

--
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Internet: Greg.Pickering@f24.n3602.z1.fidonet.org




------



Subject: Pain
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]

MM>Second, I am living? with pain every day, I have had 3 Back surgery's and I
MM>am Fused from S-1 to L-3, and have degenerative Arthritis through out my
MM>body, so I understand Chronic Pain.
MM>Hope to talk with y'all soon.           Mike....

I'm new here also. Have degenerative arthritis (Alkaloydal Spondylitis)
plus arthritis in a few joints and like many others here also I too
have pain 24 hrs. a day. Like you also I have had C-1 C-2 fused
surgically and the rest of the spine has auto-fused. I do get
relief when I sleep but it is so painful to lie down I usually put
off going to bed (it is now a little after 4 AM.) until I am dead
tired. Take lortab for pain, but did take talwin and lortab together
along with a steroid but my new doctor got nervous with that combo
and changed it. Using Meclomin now for inflammation and although it
doesn't work real well I've become used to everything else they
have tried. From the question mark I get the idea you don't
consider it living. Look around and I will guarantee you will find
someone else worse off. I keep occupied with what I can do (learning
programming and some consulting), read, TV and take my son fishing.
He fishes, I look. Maybe it's the fact that it has gradually gotten
worse and I have had to give things up little by little and not all
at once that made things a little easier.

I don't get out to see people as much as I used to and can't always
drive but that's life. I've got a lot to be thankful for and this
is not going to stop me from being active at something.

Take care, Mike..

 * SLMR 2.1a * If it jams, force it....If it breaks, it needed replacing

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------



Subject: more pain
From: Ruthie.Hoffman@f223.n260.z1.fidonet.org (Ruthie Hoffman)
Organization: FidoNet node 1:260/223 - Interstellar System, Vine Valley NY


[This is from the Chronic Pain Conference]

 > Has anyone used one of those electrical stimulators for managing
 > chronic pain?  I met a woman who used one, but would like more

Hiya Kathleen....  If you mean a TENS unit, which is an electrical
nerve stimulator, used for pain relief, then I can vouch for it.  I
have one  and it helps ALOT.  It's not a cure but it sure made life
alot easier pain-wise.  They don't work for everyone, but you can
"try before you buy" in almost all cases.  A doctor has to
prescribe it and my insurance paid for the unit and for the
electrodes.  I have four electrodes, two on each channel, that I
use.  I place them on "trigger" points and get some great relief!!
It is very small, the size of a pocket pager, and runs on a 9v
transistor battery.  I've tried alot of different electrodes,
etc..  If you have more questions, please ask!!!  I'm in a bit of a
hurry today as I have to head out soon for an appointment, so I
probably forgot something.

CUL, Ruthie

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------






                                ******

                  End of Issue # 2896 of the Handicap Digest

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