



                           Electronic Support Groups




Gene is 47 and full of life.  Gene also has a neurological disease called
Multiple Sclerosis (MS).  The MS disrupts a number of neural networks in Gene's
brain, crippling some of his physical body functions.

Gene has trouble swallowing and speaking.  He smiles crookedly and walking is a
challenge.  Although his family is supportive, he sometimes wonders if he is
worth anything . . . if he will ever be productive again.  

A while back, a friend helped Gene put a computer together and connected it to
the telephone line.  A whole new world opened up for him.  He discovered many
electronic "bulletin boards" he can call to exchange messages with other
people.  He found a number of special interest message bases, much like "Town
Meetings" of people who must deal daily with the effects of strokes, neurologi-
cal diseases, or spinal cord and head injuries.




The truth of a biblical parable about trials being easier to carry when they
are shared is never truer than when the trial is the result of a stroke,
neurological disease, or injury to a person's head or spinal cord.  A neurolog-
ical problem effectively attacks a person's self worth and self esteem like few
others.  It's important for people like Gene to share their ups and downs,
frustrations, and successes.  However, a special perspective is needed to
understand that small victories can be significant and  defeats so small that
they wouldn't bother most people are important to many like Gene.

In traditional self-help (support) groups, people meet face-to-face once a
month.  Some people with a neurological problem feel self conscious and don't
want to go anyplace where others are gathered.  One disadvantage a monthly
meeting has is not allowing you to speak to others when you have the need. 
Another is that you have to arrange transportation.

With a computer linked to a telephone line, a person feeling self conscious can
stay at home when they need to while still voicing their opinions and feelings. 
They can seek help and understanding while maintaining the anonymity they need. 
Physically attending a meeting requires a person to accept risks they may not
be ready for.






Many people say things much more explicitly when they have to type them out. 
Putting things in writing requires us to organize our thoughts.  When Gene
entered his first message on the "disAbled" message echo, he said, "I'm Gene
and I'm angry.  I'm only 47 years old and MS has robbed me of my job, my
friends, and my ability to walk and talk.  Does anybody understand?"

Within a few days over 15 people responded to his message.  They ranged from
those suffering from Multiple Sclerosis, Cerebral Palsy, and Muscular Dystrophy
to spinal cord injuries.  All of them seemed to understand Gene's anger and his
implied self doubt.  They had shared his need for understanding and were able
to offer it to him.

Today Gene feels much better about himself.  He still can't walk well and has
slurred speech, but you no longer get the impression that he feels sorry for
himself.  Sharing with others locally, across the nation, and even throughout
the world, has given Gene a new outlook.  His family appreciates that.



A number of these electronic self-help groups result from the efforts of
medical and social work professionals.  Some bulletin boards are run by
hospitals and computer clubs, however, most seem to result from efforts made by
individuals, people who personally see the need and benefits.  These people are
called System Operators (Sysops) and relay messages from city to city and even
to Europe and Australia.  They pay for the long distance telephone charges
themselves, so most of the relaying takes place late at night when rates are
lower.

There are over 20,000 computer bulletin boards in the United States.  About
10,000 of the bulletin boards (BBS) belong to FidoNet.  A few less belong to
EchoNet, and there are other networks that are less widespread.

Anyone with a computer and a modem (a device to connect the computer to a
telephone line) can try out electronic self-help.  But, what if you don't have
a computer?  Don't rush out and buy one own your own.  Take a knowledgeable
friend with you.  Prices vary significantly depending on what the computer is
capable of doing.  

Another thing to consider before buying a computer is the technical know-how
you'll need to operate it.  If you start out with no computer knowledge at all,
count on spending many hours developing the skills you'll need.  One of the
best ways to learn is from a friend who already has equipment and is willing to
spend the time to teach you what you need to know.


Bulletin Board and echo conferences (message bases) aren't listed in any
comprehensive directory.  One of the best places to obtain the telephone
numbers of local bulletin boards is a computer store.  Another is a local
computer user's group club.  

MICRONEWS, from time to time, will publish columns and articles dealing with
various types of disabilities and handicaps.  We will publish items dealing
with how these disabilities may be handled from personal and employer's view-
points.  

For example, next month in the March issue we'll publish two fact sheets
released by the U.S. Department of Justice regarding the Americans with
Disabilities Act President Bush signed into law.

We have made a firm commitment to take a percentage of any monies generated by
MICRONEWS and put them into a special fund dedicated for helping those less
fortunate.  That help may be in the form of a modem, a basic telecommunications
system for a shut-in, or whatever seems appropriate.  We will not formalize
this into an organized effort, that's the fastest way to eat up resources we
can think of.  If you want to help, send what you will to:










                             Eugene A. Zeak, Jr., Publisher
                             MICRONEWS
                             P. O. Box 36056
                             Sarasota, FL  34233


If we at MICRONEWS can be of any help, please contact us.

Eugene A. Zeak, Jr., Publisher
