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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
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Date:         Tue, 1 Sep 1992 11:15:39 EDT
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2905
X-To:         LHCAP <l-hcap@VM1.NODAK.EDU>

                             THE HANDICAP DIGEST

                                 Issue # 2905

                         Tuesday, September 01, 1992

Today's Topics:


                                ******


                     Post-Polio Syndrome Info Requested
                               Re: Wheelchair
                               MS/HELP/Fatigue
                          Grand Canyon in a Chair ?
                     Re: Advice on 3-Wheelers Wanted...
                               MS/HELP/Fatigue
                           Re: Air Travel Booklet
                          Medical insurance questio
                    Re: Medical Insurance Questions/Woes
               Chronic Fatigue Syndrome BBS (online since '87)


                                ******


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Subject: Post-Polio Syndrome Info Requested
From: Jeff.Oberlee@f500.n159.z1.fidonet.org (Jeff Oberlee)
Organization: FidoNet node 1:159/500 - Charlie's Foxhole, Lansing MI


   Hi Jill,

 >    She is curious to hear from others who may know about Post-
 > Polio symptoms, the progression of the disease, and just general
 > coping with her body's new limitations.
 >    Thanks in advance for any information you can provide.

I know nothing of post-polio syndrome, but I DO know first-hand
that doctors know little and can only hypothesize when it comes to
us rare cases.

I, now 24, started to experience slight muscle deterioration of
hands and feet at age 15.  After being thoroughly examined, doctors
concluded that I had a rare, non-terminal form of Muscular
Dystrophy called Sharko Marie Tooth disease.  Naively, we settled
for this "diagnosis" (despite other "unrelated" pronlems).

About 5 years later, a hearing loss prompted more tests and, due to
the presence of bilateral acoustic fibromas (the cause of my
hearing loss), I was RE-diagnosed as having a rare nerve disease
called Neurofibromatosis, Type 2.  This diagnosis came only after
4-5 operations to remove "unexplained" internal tumors (from my
head, spine, etc).  The first of these procedures (performed when I
was 15) rendered me "legally" blind and walking with a cane...  So
much for driver's training! (and dates, friends, etc)

I guess my point is, don't settle for ONE diagnosis, and be sure to
seek the BEST medical assistance you can afford.  I now fly to
Boston for the best, and it's definitely worth it.  If I'd known
about my REAL problem sooner, I wouldn't be taking a drug every
night to curb seizure-prone brain waves (brought on by "sloppy"
surgery), and I would most likely have the vision I had 8 years
ago.

      Best Wishes for you and your sis, and may God Bless.

                                     - Jeff

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Subject: Re: Wheelchair
From: Betsy.Fenti@f650.n260.z1.fidonet.org (Betsy Fenti)
Organization: FidoNet node 1:260/650 - School Board, Hornell NY


I think it's great that you care enough about your girlfriend to try
and be on her level.  I am in a wheelchair also.  My husband is
"able-bodied".  I sometimes wish he had your attitude.  He just gets
mad when places are inaccessible.  I can't get him to see that things
are changing it's just slow.  Your girlfriend must have a better
attitude than me too.  I get very embarassed if there is a scene.

I also glad to hear you respect her personal space.  I know so many
people that don't even take that into consideration.  I once had a guy
lean his elbow on the top of my head in a bar.

later
Bets

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Subject: MS/HELP/Fatigue
From: Robert.Schoenfeld@f3.n2603.z1.fidonet.org (Robert Schoenfeld)
Organization: FidoNet node 1:2603/3 - Net2603 Echomail Co, Bay Ridge NY


Shalom Aaron

According to the ADA an employer cannot give you a pre employement
physical or not hire  you based on  a post employement physical
unless the physical shows that you do not meet the basic
requirements for a job. and they must offer you the job if it is
not too ( I forget the exact words) costly to adapt the workplace
for you but costs depend on the salary that the job entails. For
Futhur information ask questions on the Dial Jan BBS 1-800 342
5526. They are a service of the President's Committee on the
Employment of the Disabled and their consultants are familiar with
the ADA.

                                              Robert Schoenfeld

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Subject: Grand Canyon in a Chair ?
From: Adrienne.Barhydt@p15.f48.n105.z1.fidonet.org (Adrienne Barhydt)
Organization: FidoNet node 1:105/48.15 - Jim Long's Computer, Portland OR


There is a new book out that describes accessibility in the
National Parks.  I spotted it at the local library but didn't do
more than glance at it so I don't know how valuable it will be.

It is:

Call Number   917.304 Rate45e 1992                       Status : Checked In
                                                      2 other copies

   AUTHOR    1) Roth, Wendy, 1952-

    TITLE         Easy access to national parks : the Sierra Club guide for
                  people with disabilities / / Wendy Roth and Michael Tompane.
                  /

PUBLISHED     San Francisco, CA : Sierra Club Books, 1992.

DESCRIPT.     xviii, 404 p., [16] p. of plates : ill. (some col.), maps ; 22
              cm.

 SUBJECTS      1) National parks and reserves -- United States -- Guidebooks.

I hope this will be prove helpful.

Adrienne

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Subject: Re: Advice on 3-Wheelers Wanted...
From: Maurie.Heald@f96.n343.z1.fidonet.org (Maurie Heald)
Organization: FidoNet node 1:343/96 - Information Laborat, Seattle WA


I recently rented a Three-Wheeler at a Little People's convention
and t was great. For once I had total access to everything. I would
suggest the LARK. It is a rear wheel drive, handles easily and is
comfortable. At first I thought that $25 a day was a bit steep but
later I felt it was worth it. One thing....be sure you also get a
battery charger and charge it up every night. I learned that the
hard way!!!

Have fun at your convention.......Maurie

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Subject: MS/HELP/Fatigue
From: Adrienne.Barhydt@p15.f48.n105.z1.fidonet.org (Adrienne Barhydt)
Organization: FidoNet node 1:105/48.15 - Jim Long's Computer, Portland OR


Hi Aaron,

It's Sunday evening.  By now you are through the first week.  I've
been thinking about you all week.  I do hope the job is working
out.  From your posts to me and others my impression is that it's a
tremendously difficult undertaking.  You said something about if it
doesn't work out, you'll need to come to grips with the reality of
the disease.  I hope you won't find me too presumptious or
offensive if I say to you that you need to come to grips with it no
matter what happens with this job.

I just read quickly and am now rereading slowly a book that has a
lot of ideas that I like.  It is Beyond Rage: The Emotional Impact
of Chronic Physical Illness by JoAnn LeMaistre.  The author is a
clinical psychologist who has MS.  I guess I have to admit that the
fact that she has some serious physical problems due to MS gives
her credibility with me over someone else who would seem to me more
academic and distanced.   Here's a paragraph that I find real
useful.  I may just tack it up somewhere for a reminder.

"It is not necessary to like or resign yourself to the compromises
you need to make to get on with living.  It is only necessary to
acknowledge that changes in lifestyle and skills have to be made.
Acknowledgeing that your skills are different from your preillness
days is not the same as 'adjusting" to illness.  There is no
surrender involved, only growth - the creation of continued options
through new means."

Perhaps it would be a useful book for you to read.  Also, you said
something about "failing" and I used the phrase "if it doesn't work
out".  I am not trying to use a euphemism here.  I do want to
propose a different way of looking at things.  It is the disease,
it is MS, that is making things hard, maybe impossible.  If you try
to beat it by doing things that it has made impossible, then you
will fail.  You can only beat it with a much more subtle approach.
You must redefine success.

Rereading what I've written I suspect I've not gotten across what I
intended to.  I think there is a change of attitude that has to
happen (LeMaistre's reconstruction phase) before this way of
thinking works.  Without the change of attitude, I suspect it all
does come across as kind of a cop out.

I will end this by saying don't be too hard on yourself, whatever
happens.

Adrienne

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Subject: Re: Air Travel Booklet
From: Russell.Hunt@p0.f243.n620.z3.fidonet.org (Russell Hunt)
Organization: FidoNet node 3:620/243.0


G'day Mary  MS> The booklet "New Horizons for the Air Traveler with a
 MS> Disability"
 MS> is available from the US Department of Transportation.  This
 MS> booklet details how recent legislation (the Air Carrier
 MS> Access Act
 MS> of 1986 and the Americans with Disabilities Act) affects air
 MS> travel.
 MS> Copies are available from the Office of the Secretary, US
 MS> Department of Transportation, 400 7th Street, S.W.,
 MS> Washington, DC
 MS> 20590.  Telephone 202/366-4220 or FAX 202/366-7618.  No
 MS> charge.

Do you think they would send this across the waters to Australia?

Your descriptions of experiences when travelling really sounded
familiar to me. I've done more than 20 overseas trips out of
Australia on my own. Most of these when using a chair. Living down
here, all our trips are looong. I regard 8 hours as a short hop.
There really is no substitute for experience and it is a BIG
advantage if you can keep your chair onboard. The book sounds good
and there certainly seems to be big improvements since ADA. I was
using Air Canada recently and their service to passenger using
wheelchairs was outstanding. Times are changing!

Regards .............. Russell   Canberra, Australia

                  ----------------------------------------

TNT XL/v8.2 * The buck doesn't even slow down here!

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Subject: Medical insurance questio
From: Joan.Wolschleger@f3.n157.z1.fidonet.org (Joan Wolschleger)
Organization: FidoNet node 1:157/3 - Nerd's Nook, Rocky River OH


SW>This plan (Community Mutual) will not authorize treatment at
SW>the Cleveland Clinic even with a referral from my nieces
SW>pediatrician.  They said flat out 'NO'.  They also said that she
SW>can't appeal, because they don't have an appeal process for
SW>authorizing treatment outside their list of facilities (only for bills
SW>you think they should have paid).

SW>Has anyone had any experience with Community Mutual Blue
SW>Cross ?  Any advice ?

I don't have that insurance, but I seem to recall 2 things: 1)
Community Mutual is also known as Blue Shield. 2) Cleveland Clinic
joined their (Blue Cross) list of authorized facilites in January,
1992.  The Clinic did a lot of advertizing of that fact on all
Cleveland television stations as early as Thanksgiving of last
year.  I just don't remember if Blue Shield is included with Blue
Cross participation, and whether it is restricted to those who
belong to the Northeast Ohio chapter of that organization.  She
might be better off asking for a transfer to NE Ohio if her company
is large enough.  I'm told that the various Blue Cross/Shield
organizations are not equal because they come under different state
laws.

 * OLX 2.2 * Bits make bytes, but nibbles turn me on.

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Subject: Re: Medical Insurance Questions/Woes
From: Pandora.Nigh@f554.n157.z1.fidonet.org (Pandora Nigh)
Organization: FidoNet node 1:157/554 - Analytical Engine B, Willoughby OH


Hi Shoshana, you don't say how old your niece is. If she is under
18 she can have the Clinic bill and other specialized treatment
picked up by the state of Ohio Buearo of Crippled Children. They
cover treatment of children with permenently disabling conditions.
Her mom will have to fill out an application form and from they the
proccess and should haher med expsenses. don't have their number
readily available but will get back to you as soon as I can. If you
are in a real hurry call first call for help in Cleveland they are
listed and can give you the phone number.

                                     Pandora

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Subject: Chronic Fatigue Syndrome BBS (online since '87)
From: John.Kossowan@f140.n150.z1.fidonet.org (John Kossowan)
Organization: FidoNet node 1:150/140 - Black Bag BBS, Newark DE


August 1992

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DO YOU WANT SOUND MEDICAL INFORMATION ?

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PHONE NUMBERS OF MEDICAL LABORATORIES ASSISTING PHYSICIANS
TO DIAGNOSE THE IMMUNE ILLNESS.

OPERATED BY DR.JOHN F.KOSSOWAN, A CFS PATIENT SINCE 1985.

THIS BBS GIVES YOU THE LATEST INFO, AND SOUND MEDICAL UPDATES

THANK YOU FOR YOUR ATTENTION.
DR.JOHN F.KOSSOWAN

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                                ******

                  End of Issue # 2905 of the Handicap Digest

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