John.Kovacs@f3.n157.z1.fidonet.org (John Kovacs) (10/03/90)
Index Number: 10852
[This is from the Blink Talk Conference]
That thought has occurred to me many times.(usually after I fall over
something).My father has RP and is totally blind.He has never confronted
it head-on.He is wasting-away in his basement.We have all tried to get
him out and do something,but he refuses.I guess what I'm getting at is
I've never had any real support or good role models to help me.A cane is
like the final blow.Sound's like my Pop huh? I stay in touch with a lot
of groups like "The Cleveland Society For the Blind",they have been very
helpful.Thank's for your concern.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!John.Kovacs
Internet: John.Kovacs@f3.n157.z1.fidonet.orgTom.Gerhart@f722.n273.z1.fidonet.org (Tom Gerhart) (10/03/90)
Index Number: 10857
[This is from the Blink Talk Conference]
Hi John,
I don't mean to be hard on you but the support you need begins with
yoyu. Get a cane and learn how to use it and then you can become the
support for your father. Everybody here will give you all the support
you need to do what ever you want to do so lets begin right now. tom G
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!273!722!Tom.Gerhart
Internet: Tom.Gerhart@f722.n273.z1.fidonet.orgJohn.Kovacs@f3.n157.z1.fidonet.org (John Kovacs) (10/05/90)
Index Number: 10932
[This is from the Blink Talk Conference]
Tom,I appreciate your feedback.I don't think you're being "hard on
me",just realistic.Are you totally blind?,if so have you been that way
from birth? I feel different than all of you because I can still see
pretty good.I mean,I still drive during the day!My father has told me
several times how,"sorry",he is about the RP.I have two children,one is
a boy. I knew ahead of time that he risked getting RP also,but it's not
the worst thing he would ever have to deal with.I plan to set a good
example for them as this progresses.If that means using a cane then
that's what I'll do.It's just a hard thing to admit I'll need one.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!John.Kovacs
Internet: John.Kovacs@f3.n157.z1.fidonet.orgMaggi.Weslager@f89.n129.z1.fidonet.org (Maggi Weslager) (10/10/90)
Index Number: 11009
[This is from the Blink Talk Conference]
JK> Tom,I appreciate your feedback.I don't think you're being "hard
JK> on me",just realistic.
John,
I'm glad to see that your taking a positive attitude towards
Tom's suggestions. Some twelve years ago, when I first learned to use a
cane, I was embarrassed to use it. I used to leave my house and walk to
the bus stop with my folding cane hidden in my purse and then when I
would get off the bus at my destination, I would whip the cane out and
then begin to use it. The thought of using it in my own neighborhood
where everyone who knew me could see that I needed it made me
uncomfortable. Well, the joke was on me 'cause they knew I needed it
long before I admitted it.
JK> I feel different than all of you
JK> because I can still see pretty good.I mean,I still drive during
JK> the day!
I can empathize with you a little because my RP has left me with less
than a three degree of vision in one eye and I sure use that little
tunnel as much as I can. Just the other day I was telling Mary Lou and
Willie that because of this residual vision, I sometimes override what
my guide dog is telling me, a bad habit for sure but a hard one to
break. Unfortunately you are in that gray area which finds you sighted
in some situations and blind in others. This can be quite a strain at
times, not to mention the mixed signals which you are sending to the
public. People start to ghink that there are all sorts of things wrong
with you because of your reactions.
jk> My father has told me several times how,"sorry",he is
jk> about the RP.I have two children,one is a boy. I knew ahead of
JK> time that he risked getting RP also,but it's not the worst
JK> thing he would ever have to deal with.
Parents and siblings are a funny lot to deal with at times. There are
five children in my family, four girls and a boy. Two of my sisters and
I have RP, the other sister had retinal blastoma when she was two years
old and had to have her eye removed <she maintained perfect vision in the
other eye> and my brother has no visual problems. My parents never
talked about our RP and I can remember being embarrassed because my two
oldest sisters were blind. They lost their sight faster than I am
losing mine. My parents musst have put alot of responsibility on the
two sighted children because even today I get the feeling they avoid me
and my two oldest sisters so they won't have to "take care of us". God,
families can certainly be a trip! John, I'm getting the impression that
you believe your male child will possibilly develop RP and your female
child will not. There is no hint of RP in our familytree except for my
sisters and I and I'm wondering what you are baseing your belief on.
You mentioned that blindness may not be the worst thing that your child
would ever have to deal with. Well, that reminds me of an incident
which happened to me recently. A fellow busrider was admiring my guide
dog and asking me all the usual blindness questions when he made the
statement "It must be such a drag to be blind". I told him that it is
all in what you get used to. During the insueing conversation I learned
that this guy was unemployed and I stated that it must be such a drag to
not have a job. He said "It could be worse, I could be blind". My
response was "Yes, but at least I have a job!" You should have seen the
smile on my face, I felt so good and my response was so natural.
JK> I want to set a good example for them as this progresses.If that means
using a cane
JK >a cane then that's what I'll do.It's just a hard thing to admit I'll
JK> need one.
It sounds like you are on the right track to set a good example for your
kids. Admitting that you need some kind of mobility aid is a damn hard
thing to do and trust me, it doesn't get easier real soon. Last
weekend, while I was on the way to a wedding reception, I was thinking
to myself how calm and relaxed I felt about going to an unfamiliar place
because I knew that my precious guide dog, Fudge, wouldn't let me down.
I feel so very confident because of this little mutt, a confidence that
didn't grow overnight. I can remember back on times as an early cane
user when I would feel so helpless and "handicapped" and every excursion
was such a mental strain but now get out of our way buddy 'cause we have
places to go and people to see!
John, this has got to be the longest message that I have ever
left anyone! I feel that you are reaching out to us for support and
suggesions and I feel that I can speak for everyone here and tell you
that we are here for you! Right gang? Because of the amount of your
residual sight, you can't possibly accept blindness and it's
accompanying adaptations as yet but you seem to have a good foundation
and I'd like to see you build upon it as you need to. Good luck to you
John and keep in mind that you have a wealth of support at your
fingertips...Maggi
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!89!Maggi.Weslager
Internet: Maggi.Weslager@f89.n129.z1.fidonet.orgTom.Gerhart@f722.n273.z1.fidonet.org (Tom Gerhart) (10/10/90)
Index Number: 11046
[This is from the Blink Talk Conference]
JK> Well as Bartyles and James say'Thank you for your support".My
JK> wife,who thought these BBS were pretty funny,has been really
JK> impressed with this echo.Was it hard to learn Braille?,where do
JK> you work?
HI JOhn,
I learned braille when I was in school but I would say it should not
take you more than six months to become a good braille reader. I work
for social security in Phila. payment center. I use the sight I have
as much as possible but I have come to know my limitations and work
around them. tom G
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!273!722!Tom.Gerhart
Internet: Tom.Gerhart@f722.n273.z1.fidonet.orgMaggi.Weslager@f89.n129.z1.fidonet.org (Maggi Weslager) (10/10/90)
Index Number: 11057
[This is from the Blink Talk Conference]
JK> ... You are
JK> right about the reactions you get from people.I tripped over a
JK> 4ft. pallet on the floor the other day and everybody looked at
JK> me like I was nut's.Most of the employees here know about my
JK> impairment,but they still act weird.My family treats my Dad
JK> like he has the plague.With me,it's always,"poor John",he can't
JK> see...
John,
Please don't take this as a "Poor John" statement...I do not
envy your "high partial" condition. I can remember back when I was just
starting to come face to face with my visual loss and it was so
frustrating to have to switch between being able to function as a
sighted person and a blind person. Now I'm a "low partial" functioning
more blind than sighted and feeling more comfortable with my overall
situation. Keep yourself open to all the options that you have
available for making your life easier. Life is too short to be
struggling all the time. As you recognize your need to adapt your
behavior to suit your vision loss, do it! You are the only one who can
make that kind of determination. All us blinks can give you ideas and
suggestions but until you actually see the need for implementation, you
won't fully comprehend our "experiences".
Hang in there, buddy and take it one step at a time. That's
what I do and I feel pretty good about myself, even though I'm a "poor
blind woman!"
...Maggi
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!89!Maggi.Weslager
Internet: Maggi.Weslager@f89.n129.z1.fidonet.orgJohn.Kovacs@f3.n157.z1.fidonet.org (John Kovacs) (10/12/90)
Index Number: 11081
[This is from the Blink Talk Conference]
I've been in the Berman Gund experiment for 4 years now.Since it is a
cotrolled study they can't tell you to much about your progress.I take
an oral medication once a day.I go back every year to fill-ouy a
questionaire and get several tests.One of which is an electroretiagram
which is very accurate.They take about a quart of blood,urine etc.It
takes about 8 hours to complete.My eyes are ready to fall-out of my head
afterwards!The study goes for 5 years after it's completed they make
your results public.Dr.Bereson is a great guy,very optimistic about this
whole study.I think they are on the right track.I can't tell if the
disease has slowed down any as of yet.I am much better-off than most of
the other people in the study.They come from all over the country,about
800 participants to date.Only 2 people have quit so far.
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Internet: John.Kovacs@f3.n157.z1.fidonet.org