HDTenEightyP/NetNews huggingface dataset:
From: John.Hargrove@f68.n382.z1.fidonet.org (John Hargrove)
Newsgroups: misc.handicap
Subject: legs
Date: 1 Sep 92 21:13:19 GMT
Reply-To: John.Hargrove@f68.n382.z1.fidonet.org
Organization: FidoNet node 1:382/68 - Diabetes Discussion, Austin TX
X-Fidonet: Amputee Conference

Index Number: 24238

[This is from the Amputee Conference]

In a message to John Hargrove <08-25-92 16:23> Val Dunn wrote:

VD> I did the neoprene sleeve and had a hell of a time with it.  It must
VD> work better for "boy" kids, cuz I sweated so bad I'd slip around in
VD> side
VD> it and the sleeve always rolled down on me.  YUCK!  But I am glad it

I had the same problem with the first sleeve I had.  It was all neoprene and
 it was hot as all get out.  Sweated so bad the sleeve would slip.  Told my
 "Leg Man" about it and he handed me a neoprene that is lined.  It still is a
 little hot but I do not sweat as as bad and it stays up somewhat better.

VD> works for you.  You would probably like my endolite with the silicone
VD> sleeve that goes right onto the stump and then locks into the bucket.
VD> Even more control then the outer sleeve type.

Hummmmmmmmmm....sounds like a good deal.  Mine is somewhat like that.  I slip
 the sleeve onto the bucket and then insert my stump into it.  Pull the sleeve
 up over my knee and half way up my upper thigh.  Fits tight and I can wear it
 all day with no problems.  This is the best leg I've had since I started
 wearing the things 3 years ago.  Now if I can get some people to get use to
 the idea of using them as mugs I can recoupe some of the money I had to pay
 out.  Thanks for the great idea.

John

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From: person@plains.nodak.edu (Brett Person )
Newsgroups: misc.handicap
Subject: Re: Screen Reader
Date: 4 Sep 92 20:07:20 GMT
Reply-To: person@plains.nodak.edu (Brett Person )
Organization: North Dakota Higher Education Computing Network
X-Fidonet: Blink Talk Conference

Index Number: 24359

In article <24224@handicap.news> Rick.Alfaro@f8.n369.z1.fidonet.org writes:
>Index Number: 24224

> JD> The seperate keypad may not be a hinderance at all, once you
> JD> get used to it.
>
>Jeff,
>
>This is true.  It all boils down to what you are used to.  Your typing
>and reading habbits mold themselves around what you have at your
>disposal.

I agree.  When I teach people Screen Reader, I train them to think of
the keypad as a part of the keyboard.  Not something seperate.  Most
of my students find that Screen Reader is easy to use if they keypad
is an integral part of the way they think about the  computer.

Screen readers are really a replacement for your eyes.  I find them
preferable to my eyes.  I don't really want to do
a sequence of alt keys just to find out what the current line I'm
sitting on says,  Its better to just punch the 2 key on the keypad.
I've started not even turning on the monitor now.

--
Brett Person
Guest Account	
North Dakota State University
person@plains.nodak.edu || person@plains.bitnet
From: John.Kossowan@f140.n150.z1.fidonet.org (John Kossowan)
Newsgroups: misc.handicap
Subject: Chronic Fatigue Syndr. Message # 2
Date: 3 Sep 92 12:54:58 GMT
Reply-To: John.Kossowan@f140.n150.z1.fidonet.org
Organization: FidoNet node 1:150/140 - Black Bag BBS, Wilmington DE
X-Fidonet: Rare Disorder Conference

Index Number: 24302

[This is from the Rare Disorders Conference]

August 1992
Message # 2 (# 2 of 4)
Help for CFS Patients
>From the USA CFS/CFIDS BBS, 207-623-8486, noon to midnight,E.S.T.,
on daily; located in Augusta, Maine, USA.

- - - - - - - - - - -

Pertinent information from Dr.Paul Cheney (MD, PhD)

Diplomate American Board of Internal Medicine
Specializing in Cytokine Immunology, Chronic Fatigue Syndrome and
General Internal Medicine

LYMPHOCYTE PHENOTYPE ABNORMALITIES ASSOCIATED
WITH CHRONIC FATIGUE SYNDROME

Patients who meet criteria for Chronic Fatigue Syndrome are
found to have multiple abnormalities in laboratory markers
associated with cellular function (but exceptions are not uncommon).
They are as follows :

1. The most consistent abnormality is an elevated number of Natural
Killer Cells (NK cells) defined by reactivity with monoclonal antibodies
NKH-1(CD56). This is often paradoxically associated with decreased
function.

2. There is an increase in the percentage of suppressor / cytotoxic
T lymphocytes  (CD8) and this appears to be largely due to an expansion
of the CD8 cytotoxic subpopulation.

3. There is an increase in the number of CD3 and CD8 positive
T lymphocytes which express the HLA-DR activation marker.

4. There is an increase in CD38 positive T cells.

5. There is an significant decrease in the CD8/CD11b positive cell
population, a subset of T suppressor/cytotoxic cells. This decrease
has been reported by Dr.Jay Levy (UCSF) at a recent Chronic Fatigue
Syndrome Conference (Charlotte, November 17-18, 1990).

6. There is a decrease in the inducer/suppressor subset (CD45R/CD4)
cells, which previously has been reported in MS patients.

7. There is rarely an increase in the B cell population
(CD20 and CD20/CD5 positive cells.) If seen, we recommend that Kappa
Lambda Clonal Excess Analysis (Specialty Labs, San Diego) be performed.

8. There are occasional (<15%) instances when the T-Helper
subset (CD4) is decreased. We recommend HIV-1 testing in this situation.

From:

Paul R.Cheney, MD, PhD
10620 Park Road, Suite 234
Mercy Medical Park
Charlotte, NC   28210
704-542-7444
Fax 704-542-0720
(CFIDS/CFS Expert since 1984)
- - - End of Message # 2  - - -

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From: Greg.Pickering@f24.n3602.z1.fidonet.org (Greg Pickering)
Newsgroups: misc.handicap
Subject: Transportation
Date: 3 Sep 92 12:58:32 GMT
Reply-To: Greg.Pickering@f24.n3602.z1.fidonet.org
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL
X-Fidonet: Spinal Injury Conference

Index Number: 24327

[This is from the Spinal Injury Conference]

TS>    I've heard that Fords are best when it comes to lowering the floor.
TS>Anyone else....?

        True! I believe the Fords are the only full size vans with
        an entire truck frame under them. I have a Ford, but no
        lowered floor.

        I bought my van from Braun as a used demo, gotta great deal.
        Anyway, if I had the option, I would *not* get the raised
        top. A few reasons. They are a pain in parking garages, car
        washes are out, and the extra interior cubic feet strains
        the A/C. The lowered floor is the way to go for another
        *important* reason, you can see out the windows like normal
        passengers..... Get's pretty boring & tiresome constantly
        ducking to peak out the window or starring at the roof.

-Pick

 * DeLuxe2/386 1.25 #188sa + Created on 08/23/1992 at  4:48:00 PM
===
 * QNet3 *  Pick's Place * v32/v32bis * HST/16800 * 2017650164 * 24 hrs *

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

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From: Val.Dunn@f337.n202.z1.fidonet.org (Val Dunn)
Newsgroups: misc.handicap
Subject: Phantom
Date: 1 Sep 92 21:11:26 GMT
Reply-To: Val.Dunn@f337.n202.z1.fidonet.org
Organization: FidoNet node 1:202/337 - Yak Attack BBS, La Mesa CA
X-Fidonet: Amputee Conference

Index Number: 24230

[This is from the Amputee Conference]

Hello Shari,
I am also a BK on the right.  I had a lot of phantom pain at first and
found a few ways to deal with it.
- After surgery and the stitches were removed they gave me a shrinker
that looked like one of those old girdles.  Worked wonders as it fit
MUCH tighter then the ace wraps.
- Slapping the end of the stump with a soft towel sometimes will help to
teach the brain "This is it and there ain't no more".
- Alternating cold packs and warm packs
- Hot tubs
- Swimming

Just about anything that will give the stump a gentle but localized
sensation might help.  I still after almost six years get a periodic
sense of the foot being a sleep or a charley horse....now that's pure
mental torture.

What type of leg are they going to fit him with?
I went through SIX legs in five years trying to find one that wouldn't
cause breakdown.  I have a really great "Leg Man" here in Calif. that
fit me with a silicone (SP?) sleave with a peg in the bottom that locks
into the bucket of the fake leg.  I feel like I have a real leg with
this design because it is "Really" in total contact with my stump.  I
is the same type of leg that a fellow worker at my office uses and he is
a diabetic amputee.  I also have an flex ankle and a energy dynamic foot
so I am one of the luckies that can walk with no limp at all.
Best compliment I can receive is when people think my stump socks are a
knee brace and don't realize the leg below them is fake.

Keep typing these people here are great.

Ps: If he is into swimming my Leg Man and I are trying to develop a fin
to wear on the stump so there is some resistance in the water.  It may
sound like a joke, but we really do swim in circles.  I didn't  want to
add any weight so I didn't want a full leg for swimming.  I ran across a
friend who wears a size 11 fin and tried on on the stump and the sucker
just about fits all the way in.  We are going to try cutting the fin
strap off, slit the sides a little and then join some neoprene (diving
suit material) to make a sleave to roll up over my knee and thigh.

Wish us luck.

My next adventure is learning to spring board dive....YIPEEEEE!!!!

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From: Shelby.Sherman@f67.n123.z1.fidonet.org (Shelby Sherman)
Newsgroups: misc.handicap
Subject: General Interest
Date: 28 Aug 92 16:11:23 GMT
Reply-To: Shelby.Sherman@f67.n123.z1.fidonet.org
Organization: FidoNet node 1:123/67 - Shelby's Swamp, Bartlett TN

Index Number: 24018

[This is from the Chronic Pain Conference]

 > SS>I wish that I had more time to reply to this as I am
 > SS>getting ready to catch a plane.  Doctors should not worry
 > SS>about addiction, as the pain is real and should be treated.
 > SS> Again, sorry for the brevity.

 > No problem, thanks for the vote of confidence.  I agree.  I
 > think they
 > can monitor what they give the patient but at least TRY.  I know
 > Nat
 > would keep a close watch on himself.  He just wants some kind of
 > relief.
 > You know the ole sleep or lack of and continous pain wears on
 > one..
 > Have a great trip.
 > Shari

I'm back.  It is interesting that you should mention the sleep or
the lack of.  Many times when the patients are put on a strong
narcotic and finally get pain relief, they sleep a lot.
Unfortunately, this is often mistaken for sedation when in reality
the patient is just catching up on much needed sleep.  Pain is a
natural antagonist to the sedating or respiratory depressing
effects of narcotics.

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From: Janet.Vibert@f6.n3615.z1.fidonet.org (Janet Vibert)
Newsgroups: misc.handicap
Subject: Re: Hello There
Date: 31 Aug 92 12:25:05 GMT
Reply-To: Janet.Vibert@f6.n3615.z1.fidonet.org
Organization: FidoNet node 1:3615/6 - The Hitchin' Post, Knoxville TN

Index Number: 24061

JN>Wishing you the very best of luck with that hearing.  I had mine
JN>last November and received the POSITIVE decision in January.
JN>Nineteen months from date of first application to receiving that
JN>court decision, and about three more weeks for them to figure
JN>out the retroactive payments and send the first check.

Can I ask what your argument was?  When I applied for SS benefits after
my husband's accident of course it seemed to take forever.  They sent me
the figures and I was shocked, no, APPALLED, at the final figure after
they "adjusted" for the WC benefits.  He ended up getting a 10th of what
he was "entitled" to.  And or son got nothing even though he was
"entitled" to a around $300.  As spouse who is home with our son, they
wouldn't even figure it... guess they knew what it was going to be. $0
I heard so many horror stories there was NO WAY I was going to argue
with them!  I was terrified they would take the rest of it away.

Janet

 * OLX 2.1 TD * We all live in a yellow subroutine.

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From: Mike.Fuller@f311.n387.z1.fidonet.org (Mike Fuller)
Newsgroups: misc.handicap
Subject: Chest/Rib Cage Pain
Date: 3 Sep 92 18:18:53 GMT
Reply-To: Mike.Fuller@f311.n387.z1.fidonet.org
Organization: FidoNet node 1:387/311

Index Number: 24349

[This is from the Chronic Pain Conference]

* Replying to a message originally to Bob Donovan on 08-28-92

Hello Kathleen... (sorry to barge in)

KM>  [BD] Nearly 3 years ago I began having upper chest pains that
KM>  [BD] shot across the top of my rib cage.  It made me nervous

I'm a 23 year old non-smoker who at the age of 21 went to the
hospital with a heartbeat of 180 that lasted 4 hours and was
accompanied by chest pain, shortness of breath, and tiredness. I
thought I was having a heart attack, but there is no history of
heart disease in my family that I'm aware of... come to find out,
Caffeine is responsible. I seem to have a condition known as WPW
syndrome in which the Heart muscle reacts quite negatively to
Caffeine... ever since then I have strongly recommended to anyone
having chest pain that they immediately swear off the coffee, tea,
and caffeinated sodas...

Just thought the input might spark some interest <grin>.

Take care,

Mike

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From: Betsy.Fenti@f650.n260.z1.fidonet.org (Betsy Fenti)
Newsgroups: misc.handicap
Subject: re: Nintendo Help
Date: 31 Aug 92 12:27:26 GMT
Reply-To: Betsy.Fenti@f650.n260.z1.fidonet.org
Organization: FidoNet node 1:260/650 - School Board, Hornell NY

Index Number: 24074

Nintendo does make a controller for the disabled.  It is a controller
that is worn on the chest with an adjustable joystick that is moved by
the user's chin.  The fire buttons are operated by a sip & puff
mechanism.  It comes with a very hefty price tag of $175.  For more
infomation call 1 800 255-3700 and ask about the Hands Free
Controller.  Nintendo is very helpful in answering question.  I can
not use my hands  and I own a Nintendo Game Boy.  Because I use a
mouthstick to play, I am unable to press the buttons and move the
controller pad at the same time.  We call them and ask them which
cartridges require two buttons to be pressed at once.  They will send
you a brochure about their controller.  I hope I gave you some useful
information.

Betsy

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From: robertj@tekgen.bv.tek.com (Robert Jaquiss)
Newsgroups: misc.handicap
Subject: TRIFORMATION LED120 BRAILLE PRINTER AVAILABLE (PROTLAND OREGON)
Date: 3 Sep 92 02:44:49 GMT
Reply-To: robertj@tekgen.bv.tek.com (Robert Jaquiss)
Organization: Tektronix, Inc.
X-Fidonet: Blink Talk Conference

Index Number: 24297

                  TRIFORMATION LED120 AVAILABLE

     I have a Triformation LED120 braille printer available.  This
unit was taken out of service in 1984 when received a Thiel.  It
was still working and last I checked it still worked.  It does
print at CPS120 and is in good shape.  I took it home for a
personal printer but don't make enought use of it to justify the
space it takes up.  Possible uses for this unit include display in
a museum or as a source of spare parts for other Triformation
units.  If someone wanted it for parts I would be willing to take
it apart and ship all the pieces minus the cabinet.  If interested
please call or write.

     Robert Jaquiss

Phone: (503) 627-4444 (Work)

Internet: robertj@tekgen.bv.tek.com

P. S.

     For those of you who have not seen one of these units, the
whole unit is about two feet wide three feet from front to back and
three and a half feet high.  Most of this volume is taken up by
lots of cabinet.
From: Caleb.Burns@p0.f14.n105.z1.fidonet.org (Caleb Burns)
Newsgroups: misc.handicap
Subject: Re: General Interest
Date: 28 Aug 92 16:17:23 GMT
Reply-To: Caleb.Burns@p0.f14.n105.z1.fidonet.org
Organization: FidoNet node 1:105/14.0 - Busker's Boneyard, Portland OR

Index Number: 24034

[This is from the Chronic Pain Conference]

Dear Shelby:
The codeine sold without presciption in Canada is, I believe, what
people refer to as 2, less than the strength sold in this country as
Tylenol 3. Frankly, for the last several years, in getting ready for
marathons, the stuff came in handy to remove some of the leg pain I
would get later on in the long runs.
    Absolutely I agree with you about tolerance, addiction, etc. I am
not a physician (am a psychologist), but it strikes me that for many
people, the medical community is too censorious. To pursue the point to
its ultimate limit, perhaps all aspirin should be taken from the
shelves, etc. Yeah, but when I have a headache, I reach for the aspirin.
    It is my understanding that the border personnel permit an
individual taking one large bottle of tylenol or aspirin with codeine
to enter the US without problems. But I am not sure about this.
    I would be interested to find out whether the stuff is abused in
Canada (I should think not terribly).
    Anyway, one simply asks the Canadian pharmacist for the material --
it isn't on display on the shelves -- and out you walk with it.
    Yours, Caleb

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From: Patricia.Bregman@f24.n3602.z1.fidonet.org (Patricia Bregman)
Newsgroups: misc.handicap
Subject: Orphan drug act
Date: 28 Aug 92 15:34:44 GMT
Reply-To: Patricia.Bregman@f24.n3602.z1.fidonet.org
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL
X-Fidonet: Rare Disorder Conference

Index Number: 24002

[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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From: Joe.Chamberlain@p1.f175.n150.z1.fidonet.org (Joe Chamberlain)
Newsgroups: misc.handicap
Subject: Airline Wheelchair Practices
Date: 1 Sep 92 21:13:49 GMT
Reply-To: Joe.Chamberlain@p1.f175.n150.z1.fidonet.org
Organization: FidoNet node 1:150/175.1 - Busted Flush BBS, New Castle DE
X-Fidonet: Spinal Injury Conference

Index Number: 24240

[This is from the Spinal Injury Conference]

 To: dlc@ais.org (David Claytor)

 DC> Any advice/warning/recommendations would be greatly appreciated!
 DC> The flight is on United: Detroit<-->Denver.  My experience with
 DC> United and my old E&J was terrific and worry-free, but I'm worried
 DC> about my Quickie.

One sure way of ensuring that your chair travels in the cabin with
you, is to arrive, panting and apologic, for boarding 10 minutes
before departure. Using this technique, I have even on two
occassions gotten first class seats with a coach ticket.

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From: John.Rougeau@p4.f184.n132.z1.fidonet.org (John Rougeau)
Newsgroups: misc.handicap
Subject: WANTED: Advice re: airline wheelchair practices
Date: 1 Sep 92 21:15:48 GMT
Reply-To: John.Rougeau@p4.f184.n132.z1.fidonet.org
Organization: FidoNet node 1:132/184.4 - The Bulldog BBS !, Hudson NH
X-Fidonet: Spinal Injury Conference

Index Number: 24247

[This is from the Spinal Injury Conference]

In a message of <Aug 11 15:30>, David Claytor (1:141/420) writes vaguely:

 >From: dlc@ais.org (David Claytor)
 >Index Number: 23645

 >Subject line says it all.  On earlier experiences, I have
 >transferred to a boarding chair at the gate and my E&J was
 >collapsed and taken to the hold.  Now, however, I'm using a rigid
 >frame Quickie.

Hi David! Let me introduce myself to you, I'm John's girlfriend, Cyndi.

When John travels out to Denver (also on United) he uses his
lightweight Quadra, that also has a rigid frame. What we do, is
just make sure they know (Understand) that the chair does not fold.
He uses that chair until the airplane entrance, and then they use
an aisle chair to get him to his seat. We just remove his pack from
the chair, and the break extensions. (He's lost one already,so, I
put them in the pack) So far, he hasn't had any major problems with
them. They're ready with his chair right at the gate to transfer
him into that. John suggests sitting on your cushion in the plane.
He did that with a previous chair (The one he has now is attached)

 >Any advice/warning/recommendations would be greatly appreciated!
 >The flight is on United: Detroit<-->Denver.  My experience with
 >United and my old E&J was terrific and worry-free, but I'm worried
 >about my Quickie.

John has had all good experiences with United as well. I'm sure it
will be fine.  Just be sure to tell them it doesn't fold.

I hope this helps. :-)

Take care,
Cyndi

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From: Mark.Dawson@f24.n3602.z1.fidonet.org (Mark Dawson)
Newsgroups: misc.handicap
Subject: Charcotte merrytooth dis.
Date: 28 Aug 92 15:34:58 GMT
Reply-To: Mark.Dawson@f24.n3602.z1.fidonet.org
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL
X-Fidonet: Rare Disorder Conference

Index Number: 24003

[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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