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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
Newsgroups: bit.listserv.l-hcap
Date:         Thu, 19 Nov 1992 09:30:28 EST
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 3028

                             THE HANDICAP DIGEST

                                 Issue # 3028

                         Thursday, November 19, 1992

Today's Topics:


                                ******


                            Educational materials
                                    Life
                              sugar for wounds
                      Small Planes with Hand Controls ?
                            Educational Materials
                                     SCS
                                  Update ?
                          Spelling prediction progr
                    Re: Small Planes with Hand Controls ?
                            Re: sugar for wounds


                                ******


To subscribe to the Handicap Digest mailing list or have your
thoughts in the next issue, please send electronic mail to
Bill McGarry at any of the following addresses:


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            (300/1200/2400 baud, 24 hours)
Compuserve: 73170,1064

                              Bill McGarry (Moderator)
                              (203) 337-1518



------



Subject: Educational materials
From: Linda.Lindsey@f24.n3602.z1.fidonet.org (Linda Lindsey)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Spinal Injury Conference]

The Training Office of the Medical Rehabilitation Research and
Training Center in the Prevention and Treatment of Spinal Cord
Injury is searching to see what products (books, pamphlets,
videotapes) are available for both individuals with SCI and for
health care professionals for use in patient education and staff
development.  If you are aware of any such products in the areas
listed below, please respond in a message or send a listing to may
attention - Linda Lindsey, Training Office Rm 506, Spain
Rehabilitation Center, 1717 6th Ave. s, Birmingham, AL
35233-7330.  Topics relating to SCI - Urinary Tract Infections;
pain; Spasticity; Neural Recovery; Caregivers; Spinal Shock; Cost
of SCI; and Autonomic Dysreflexia.  Thank you for your info!

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

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Subject: Life
From: Keith.Jones@p13.f15.n114.z1.fidonet.org (Keith Jones)
Organization: FidoNet node 1:114/15.13 - <Stat Gateway Servi, Phoenix AZ


[This is from the Spinal Injury Conference]

 BD> I have been fighting with my  self about this.  It has been
 BD> four years now  since the accident, and I feel I haven't
 BD> done what is expected of me.   After I was though rehab, I
 BD> didn't keep going.  I didn't go on to school  like they
 BD> wanted me to.  I just didn't feel ready, and I still
 BD> don't.  I  don't want to do something just because someone
 BD> else wants me to.  I know  that I wouldn't put my heart
 BD> into it.  It would seem more like a task I  have to achive
 BD> in.  And, if I don't I will be disappointing them.  I
 BD> couldn't handle that.  The reason I'm telling you this,
 BD> and anyone else  that might be reading this, is I want to
 BD> know what you do with your time.  I feel like I should
 BD> have my degree or working toward it by now.  I feel  like
 BD> I should have a full or part time job.  Something that
 BD> would take me  out into "the world" everyday.  Don't get
 BD> me wrong, I do keep myself  busy, but I feel I haven't
 BD> done anything.  I'm told by others that I do  more in a
 BD> day, than they do in a lifetime.  But, I don't see it that
 BD> way.  It hasn't helped my self-esteem at all, when they do
 BD> say this.  I feel  like they are saying it just to be
 BD> nice.  I want you to understand that  I just want to get
 BD> your and others input on this.  Do any of you feel the
 BD> same way about this?  If so, tell me.  How active are you
 BD> in society?   I want to know if I'm really taking
 BD> advantage of my situation, because  that's almost what I
 BD> feel like.  At least, that's what I think others are  thinking of me.

 Hi Beth,

 Let me say that I can relate to everything you've said. I have searched
 for my place in this world for 8+ years since my injury. Let me tell
 you what I've found.

 In 1984, I was left a C-8, T-1 quadriplegic. I went through rehab
 faster and with a better attitude than anyone they had ever seen. I met
 my future wife in rehab where she was a nurse.

 When I left the rehab, I went home to live with my parents. I was
 almost 29 years old and had not lived at home for well over 8 years.
 Needless to say, I was miserable. My existence was to get up, shower,
 exercise and watch TV. My future wife suggested we live together. I
 felt this was a divinely inspired answer to my problems. This woman was
 my answer.

 We rented a house and I moved in with her and her two kids. Seven
 months later we were married. Our problems were only beginning. Not
 only did she work full time but she was also my full time nurse. She
 did almost everything for me and I depended on her heavily. During this
 time I had vocational rehab people bugging me to go back to college. I
 did not think I was independent enough and just wanted to be left
 alone. I liked not working since I did not have to (I have Worker's
 Compensation money for the rest of my life plus a settlement from a
 medical malpractice suit I expected to get) My life for the next year
 and a half would consist of getting up, showering, exercising and
 watching TV. Big change, right! Same thing, different location.

 After a year and a half, I was miserable. I took it out on my wife and
 her kids and after a big fight, she left me. Here I was by myself in
 this house. I decided I didn't need anybody, I could take care of
 myself. I did for one month and when the lease expired, I moved out on
 my own. I began drinking very heavily. Soon the novelty and sense of
 accomplishment I got from living on my own wore off. I drank more. I
 became suicidal. I decided I had to do something with my life. I
 returned to college after contacting BVR (Bureau of Vocational
 Rehabilitation). School was the answer.

 Two and a half years later, I graduated from college with a 3.96 GPA
 and a Bachelor's degree in Social Work. I met a woman and became
 engaged. I got money from a settlement. I became involved in wheelchair
 racing. I should be happy, right? I wasn't. I could not work a full
 time job due to the pain associated with my spasticity. Actually, I had
 never really planned to work. Now school, which had kept me busy, was
 over and my drinking took on new proportions. I had had my problems with
 it through school though it never affected my grades. Now I found I had
 to drink all the time to control my spasticity (it worked great while I
 was drunk) and also to overcome boredom. I drank until my fiancee left me.
 Ironically, I quit to get her back and four months after I quit and we
 split up, she married someone else. This was over 3 years ago. I have not
 had a drink since that time (7-20-1989).

 I found myself sober and very shortly with debilitating back pain,
 central nerve pain in one foot and inreasingly bad and painful
 spasticity. I had lived my whole life in Cleveland, Ohio. My family,
 friends and support group was there. The problem with Cleveland is that
 it is too cold. I spent a winter in virtual isolation with the pain in my
 back and foot reaching the point where I was ready to commit suicide.
 My life during this time was waking up, laying around in pain and
 depression for endless days. I could not exercise and got no enjoyment
 from anything.

 Spring came and I forced myself to take one class at a community
 college. I was able to get out more but was still miserable. Life
 itself was monotonous. There had to be more.

 As winter (1990) again approached and my pain and spasticity increased, I
 made a decision to move to Phoenix where I did not know a soul but where
 the weather was warm. I moved and spent a winter there with pain and
 spasticity also, though it was not as bad. At least I could get out and
 stay busy. I swam at the college when I felt like it. I went to AA
 meetings about town. I also found this echo during that time and bought
 this computer. I returned to Cleveland during the summer for 5 months.
 I remember telling a friend that there had to be more to life than
 swimming and AA meetings. Yet that was my life.

 Fall (1991), I moved everything to Phoenix. Winter came again. By this
 time my pains and spasticity had been diagnosed as chronic pains which
 absolutely nothing could be done for. I decided to drive to California
 and visit a hypnotist to help me not only deal with physical pain but
 to help me get on with my life. I returned and immediately began
 working out despite back pain that was killing me (literally). That was
 February of this year. I have worked out 3 times a week and swam every day
 since then.

 I was able to drive to a hospital in Denver and take a trip of the
 southwest this summer. It was great. I went back to Cleveland for a
 month. Now I'm back in Phoenix and in the process of starting to have a
 house built. I am strongly considering returning to school again.

 Am I happy today? My life has improved a great deal. I am very grateful
 for what I do have and for what God has allowed me to accomplish. Yet I
 look at my life today and it really has not changed all that much. I
 still get up, shower exercise and watch TV. I also attend AA meetings
 and log onto the board when I can to help others. I do, however, feel
 this "need" to do more. Sometimes I think that that is expecting too
 much from myself, but most of the time I feel I can meet the challenge
 and should be doing more. I also feel as you do...that my life should
 be more constructive. Right now my life is busy and that is good
 because I need to keep busy. It keeps me out of my mind where trouble
 waits if I think too much. I try now to live one day at a time. The
 difference between now and before is that I perceive things much
 differently today. I try not to place unrealistic expectations on
 myself yet place realistic responsibilities on myself. I have spent the
 last 8+ years (actually my life) searching for who I am and what I am
 supposed to do. And while I have not gotten to where I am going, I have
 made progress. The answer comes from within. I KNOW that I am supposed
 to help other people in some capacity, but how I don't know. I do know
 that if I am patient and try to do God's will, instead of my own,
 things will work out for me in God's time not my own.

 In your message, I can read alot of guilt and remorse over not having
 done what you think you should have. These are negative emotions and
 can only serve to hurt you. The past is gone, it cannot be recaptured.
 Opportunities have not left, time has merely passed. You can start over
 today.

 You also put alot of weight on what others expect or think of you. That
 is not important. I could never have done ANY of the things I have talked
 about if I did what others expected or thought I should do. What others
 think is not important. What is important is what you think of
 yourself. You have to live with you, nobody else does. Do what you have
 to do for you, not anybody else. The answers come from within. It is
 only there they can be found. You can only be comfortable and have high
 self esteem when you know that you have done all you can the best you
 can. This is not to say you should do or could do all the things I have.
 It differs for each individual. Sometimes the only thing a person can
 do is simply talk to someone on the phone or write a reply to a
 message. I do know and hopefully, you can gather from my story that the
 trying to fix your life or make yourself feel better with external things
 whether they be money, sexual partners, popularity, degrees, GPA's,
 different places to live, or jobs is fruitless. These things make you feel
 better temporarily but the feeling is transitory and is soon replaced with
 another external need. True happiness comes from within. Only YOU can
 answer the question of whether or not you have done everything possible
 to change your life to make it be the way you realistically want it to
 be. If your honest answer is yes, then be happy and do what you can. If
 it is no, then it is up to you to do something to change it. We all
 only get one life. Might as well make the best of it. Once time goes
 by, it's history. Forget about time lost and take advantage of time now.

 Sorry for such a long reply. Please don't feel as though I'm lecturing
 you, I am merely trying to help. Writing these replies helps me even if
 it doesn't help you. I need to read what I write probably more than any
 other person. Hope this helps. Good luck.

-Keith-

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Subject: sugar for wounds
From: Alan.Hess@f1000.n261.z1.fidonet.org (Alan Hess)
Organization: FidoNet node 1:261/1000 - Nerve Center, Pikesville MD


[This is from the Spinal Injury Conference]

 * Original from Alan Hess to all at 1:261/1000 in "MEDCENTER"
 * Forwarded Mon Nov 09 92 by Alan Hess at 1:261/1000

I am currently treating a decubitus (pressure sore) by cleaning it
with peroxide, placing ordinary table sugar on the area, and
covering it with duoderm.  It's working very well.  Sugar
apparently is quite helpful in healing open wounds - maybe it
should be used more often following surgery, or for burn victims,
or other open areas.  *adh*

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Subject: Small Planes with Hand Controls ?
From: John.Lynch@f1000.n261.z1.fidonet.org (John Lynch)
Organization: FidoNet node 1:261/1000 - Nerve Center, Pikesville MD


[This is from the Spinal Injury Conference]

 MG> Does anyone know anything about learning to fly if you use a
 MG> wheelchair ?  I think I've read about people using hand controls in
 MG> small planes.  Has anyone here done it?  This is something I've
 MG> thought about doing, but the possible complications have always
 MG> stopped me.  Care to give me some encouragement ?

Sure, I know about it.  I am a paraplegic liscensed pilot.  I
usually fly a Piper Cheerkee, 4 passanger.  Hand controls were
built by Bill Blackwood of the California Wheelchair Pilots Ass.
Cost me about $350 about 17 years ago.  Also have a set that will
fit a Cessna 150, 172, and Carinal.

What you have to do is  call the FAA and get a doctor's name who
can give you a physical.  You will flunk it.  Don't worry.  You
appeal to the FAA chief doctor for a waiver of disabity.  Once you
get that by demonstrating to the FAA you can use the handcontrols
properly, you are in business for the future medicals.  No problem
unless you have major medical problems.

Some of you medications could cause problems./
But be straight with the FAA.

I origianally learned to fly in the Air Force and just need to
transition to handcontrols.  But I know a couple of guys who
started flying with handcontrols and had no problems.

Go for it.  It is expensive, but it might be worth a try if you
like flying.  Certinally different!

Regards, John
P.S.  Drop me a line with any questions.

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Subject: Educational Materials
From: Joe.Chamberlain@p1.f175.n150.z1.fidonet.org (Joe Chamberlain)
Organization: FidoNet node 1:150/175.1 - Busted Flush BBS, New Castle DE


[This is from the Spinal Injury Conference]

In a message to All <04 Nov 92 08:40> Linda Lindsey wrote:

 LL> The Training Office of the Medical Rehabilitation Research and
 LL> Training Center in the Prevention and Treatment of Spinal Cord
 LL> Injury is searching to see what products (books, pamphlets,
 LL> videotapes) are available for both individuals with SCI and for
 LL> health care professionals for use in patient education and staff

Both Craig and Moss have comprehensive handbooks covering all the
aspects dealing with spinal cord injury which are suitable for both
professional and patients.  Afterall, you want your SCI patient
educated to the point where he can manage/supervise his own care.

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Subject: SCS
From: Allison.Cozzi@f3216.n161.z1.fidonet.org (Allison Cozzi)
Organization: FidoNet node 1:161/3216 - Computer Communicat, Concord Ca


[This is from the Spinal Injury Conference]

-> Aren't you glad I told you about this echo?  [big grin]

      Sure am! It serves to get my fears down to their proper
proportions.

-> Seriously, though, I have two questions for you.  First, where is you
-> and how was it diagnosed.

     The RSD is in both legs. At first, when it was in just my left leg,
there was a noticable appearance and temperature difference when
compared to my other leg. The skin is a bit...shiny, I guess I should
say...and hair doesn't grow on my legs as it used to (YAY! No more
shaving...not that I could bend over that far to shave them *anyway*!).
And, both legs (but more so on the left) feel like all the skin has been
stripped off of them and to touch them with anything...clothing, water,
sheets, hand...feels like claws are being dragged over an open wound.
Mine was dignosed by the symptoms involved and we could see it travel a
predictable course as it got worse. The first four years after my
injury, it progressed rather slowly buyt when I was going through all
those surgeries 1 1/2 yrs ago, it seemed to trigger it somehow and it
progressed more in the ensuing six months than it had the prior four
years.

-> Secondly, when in the heck are they going to implant the rest of the
-> SCS?

     Evaluation will be in early December. Then the surgeon has to beg a
little with the insurance company. *THEN* the surgery. Transamerica had
it all tied up for over a year and it didn't get straightened out until
I told my attorney to file suit on my behalf again Transamerica for
thwarting my medical care. Within two weeks, we had authorization for
the first trip to Denver. This whole authorization business is for the
birds. Seems like there is a better way to handle it...like someone who
isn;t involved with the money part of it to be the go-between who has
power to authorize procedures and surgeries or to deny them. These
decisions should be made on a medical-only basis and not be handled by
the guys with the checkbook! There's too much of a conflict of interest
the way it is now. Doesn't that sound liek a better idea to you? ...to
have a non-biased *MEDICAL* review board who has authorization power? I
think that it being like that there couldn't be a lot of these
shenanigans of legal filibustering, etc. and medical care couldn't be
held up for reasons other than medical review.
                                                       Allison

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Subject: Update ?
From: Richard.Kuchar@f311.n270.z1.fidonet.org (Richard Kuchar)
Organization: FidoNet node 1:270/311 - P/T BBS, Cleona PA


[This is from the Spinal Injury Conference]

 On 11-03-92 Linda Cummings wrote to Richard Kuchar...

 >     My doctors do not want to operate do to the fear of scar
 > tissue creating more problems than the bulge is creating now.

 LC> I can't say I blame them, Richard.  I had two partial
 LC> laminectomy's and was worse after each one.  I now sport an
 LC> implanted Spinal Cord Stimulator.  Unfortunately, it only
 LC> helps about 10%.  But, it's better than nothing.

 > I have had 2 MRIs and a myelogram confirming the disk bulge and disk
 > degeneration too. The last time I went to my neuro-surgeon, he
 > told me that I will have to learn to live the pain, and know my
 > limitations. He says the combination of the bulge and the
 > degeneration I have to learn to with it.

 LC> Yup!  Learn to live with it.  That's what you have to do, I'm afraid.
 LC> I think doctors are probably getting smarter now.  If it
 LC> isn't ruptured, they try other ways for you to get better
 LC> before they cut into you. Mine was ruptured, so surgery was
 LC> called for at the time (10 years ago). I was given a 50%
 LC> chance, too.  It's just that mine re-ruptured and had to be
 LC> operated on again.  That's when I was given the 30% speech.
 LC>  Mine got worse after the second surgery, and that's why I
 LC> now have the implanted SCS.

 LC> Get second, third, and even fourth opinions!  Believe me, if you jump
 LC> into it, you're doing yourself a world of harm.  I'm living
 LC> proof.  It sounds like you're not at the point (yet) where
 LC> you are saying, "I don't care what you have to do to stop
 LC> the pain, just do it!"  You'll know when you're at that
 LC> point.

Last week I went for my 3rd opinion of my medial disk bulge. this doctor's
bedside manner was something else to desire, but he didn't tell me anymore
than what I already know. He told me that is was not herniated, ( different
definitions of bulge, herniated, slipped, or ruptured ).
Stay with the conservative care or program, did not think I would be better
off after an operation.

WHAT A LET DOWN. I was prepared (mentally) for this doctor to tell me that
he had a "new" procedure or reccomended an operation of some sort that
would relieve my pain. Well emotionally I did not take it too well.

This doctor has requested that I get a bone scan done, I will be going for
it the day before Thanksgiving. ( I'll glow in the dark for Thanksgiving,
luckly it wasn't before Halloween )

The Doc thinks I have inflamation of the joints in my spine, and says the
bone scan will show more. He also wants to look more at my spine. The last
MRI report said, " Degenerative marrow changes are seen in the bodies of L4
and L5."

I didn't know about this and at the time I was with the doctor I didn't
think of asking him what this meant. I am sure you know how it can go when
you visit a doctor, you don't think of all the questions to ask, and after
you leave you think of all the question you should have asked.

... OFFLINE 1.41 * Success comes by going for it; Failure comes by holding back

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Subject: Spelling prediction progr
From: Bill.Wise@f3.n157.z1.fidonet.org (Bill Wise)
Organization: FidoNet node 1:157/3 - Nerd's Nook, Rocky River OH


[This is from the Spinal Injury Conference]

PC> On 02-Nov-92, Bill Wise wrote to Mark O'Brien:

>There is a shareware program called Mind Reader that is a word processor
>which includes word prediction.  It is available from Brown Bag Software I
>have a copy around somewere that I could make available for you.  It also
>has a calculator & address book and will do mail merges.  If you are
>typing less
>than 5 WPN (30char/min) this program should help.  If you are typing over
>5WPM then this might not be much help.  This program is also compatible
>with one finger & access DOS.

PC> Hi, Bill!  Do you recall if Mind Reader also has word substitution
PC>and/or  abbreviation expansion (or something that would allow
PC>creating personalized  dictionaries?)  I also am on the lookout
PC>for such shareware programs for a   friend with arthritis.  Is
PC>this the only word substitution-type shareware  you've seen?

Mind Reader does not have abbreviation expansion as such, but you
can edit the dictionaries as needed.  The program is mildly smart,
in that it counts your word usage and presents word choices based
on this word count.  It has a fairly powerful search & replace
function which would allow you to do your own abbrev. exp.
manually.  This is the only shareware progran that I've used with
these features, but I'm sure that there are others around.

Bill \\'ise
===
 * DeLuxe 1.1 #8809 * Murphy was an optimist!

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Subject: Re: Small Planes with Hand Controls ?
From: John.Lynch@f1000.n261.z1.fidonet.org (John Lynch)
Organization: FidoNet node 1:261/1000 - Nerve Center, Pikesville MD


[This is from the Spinal Injury Conference]

 PB> Third, while this is going on, you will need to locate a plane with
 PB> the appropriate hand controls and work out the details of using it
 PB> for your training.

Be easier to buy a set of handcontrols of your own.  These can be
bolted to anyu plane they are designed to fit.  Trying to find a
FBO(guy who rents planes and sells gas at the airport, Fixed Base
Operator) with a equipped plane may be real difficult.

These controls are designed to be bolted on in minutes.
Regards, John

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Subject: Re: sugar for wounds
From: Alan.Hess@f1000.n261.z1.fidonet.org (Alan Hess)
Organization: FidoNet node 1:261/1000 - Nerve Center, Pikesville MD


[This is from the Spinal Injury Conference]

 * Original from Alan Hess to Robin Kirkey at 1:261/1000 in "MEDCENTER"
 * Forwarded Thu Nov 12 92 by Alan Hess at 1:261/1000

In a missive of <Nov 10 16:39> Robin Kirkey (1:261/1131)
writes to Alan Hess:

 RK> Back in my <ahem> younger years, when I worked in a nursing home
 RK> in Indiana, there was a special 'potion' which we used to
 RK> treat decubiti. The results were excellent, and my curiosity
 RK> got the best of me, so I inquired of the people who produced
 RK> the 'potion' just what the magic ingredients were.  The
 RK> answer: SUGAR!!  Apparently the rest of the ingredients were
 RK> merely there to assure that the ointment would adhere to the
 RK> decubiti, rather than being curative.  That treatment, along
 RK> with the heat lamp and the generic frequent turning healed
 RK> many a nasty decubitus ulcer....even those where bone was
 RK> visible.

I found something similar in "The Doctor's Book of Home Remedies" -
you mix sugar and betadine for use on open wounds after cleaning
with peroxide (just make sure bleeding has stopped first), then
cover.  It promotes healing and prevents scarring.  It should be
used in hospitals.  *adh*

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