SUPPORT FOR MACULAR
DEGENERATION PATIENTS
Please! don't go through the dreadful phases of losing any part of
your precious vision alone...
If you or someone you know ..is suffering with any eye disease, especially Macular
Degeneration, Please read what I have to say.My personal story as it is happening to me, is on my page entitled "OUREYES". I also have
a list of Links to various pages regarding eye diseases. This you can find on my
page entitled "MDLINKS".BUT THERE'S MORE....HELP ..FOR US! "SUPPORT" FROM PEOPLE WHO UNDERSTAND!
This page is especially important as I intend to fully explain the wonderful group I found on the internet that have and, still are, helping me cope with my loss of vision . And they can help you too.
They are a wonderful, caring group of people. Some are professionals, an Othomologist,
a Psychologist and many others that work outside the home in spite of their vision loss.
Most are suffering with an eye disease or have a loved one that is.
Yet they find it in their hearts to support others with love, caring and especially up-to-date information
that we all need to have.
Let me go into detail a little bit here.First of all, I was desperately searching the net for any and all information I could find
on Macular Degeneration..as I had just been diagnosed with the "Wet" version in one eye
and the "Dry" version in the other. As I found and read the information I happened upon one website that seemed.. Well, seemed more "Friendly" and "warmer" then the others.
Instead of just good information it went further than that.A Subscriber List was mentioned. HUH? It seemed this was free and it sounded like
something I may need as it told of support for MD. So I entered my E-mail address thinking I
could always just delete or quit whatever it was if I didn't need it or didn't like it.
So I went to investigate. There I found email after email of people talking about their eye problems,giving
great information or beautiful, caring letters to a given person. I felt a part of them immediately.
I had been in tears that day so typed an e-mail letter with the subject of "I CAME TO CRY".I related my story up to that point and soon after sending it I felt bad because I was on my Pity Pot, feeling
sorry for myself. But almost immediately I started receiving letters. From all over the country, Australia,
Texas, New York....from people encouraging me, telling me they either just went through the part I was in or
were still in that phase.. They told me it was okay to cry....that they had cried rivers too. They told me
I didn't have to go through it alone..that they would be there for me. They were of different ages..some only
16, 18 and others were older than I. I was given the MD home page url and told to go there so I could
learn how to get to their newly opened chat room where we could share war stories or talk about anything
we wanted to. I learned that people who have already lost the central vision in both eyes...could still chat
in the chat room and email each other.
that read back what I typed to them and many other aids. I learned there was a wonderful Doctor who
offered help to all of us...and I felt I no longer had to be so scared of what I was going through now..or would
go through in the future. They soon became like a wonderful family to me and I even found I could go for days
without feeling sorry for myself and wanting to put smiles on their faces and support them too.There is a wonderful man named, DAN, that you will meet when you subscribe..he, himself was having a
hard time with his vision and he needed support. But instead of feeling sorry for himself he gathered
together what was needed to start this group and to enable us a great chat room.Dan is still improving things..... now he sets up "Special Sessions" in our chat room with wonderful
guests that answer our many questions.. Like Dr. Goldberg, and soon will have others that
zero in on given diseases.
The url you should go to for more information about all of this is:
http://members.aol.com/danlrob/MDpeople
The l in the middle of dans name is an EL NOT a one.
BLIND OR NOT BLIND?
only could see BLACK? Well I did. In fact, when I came upon any information that
had the words blind in it..I didn't read it as I felt....it didn't apply to me. If it had "low-vision"
then I would read it and bookmark it etc.One day while reading my email someone had given information about a newsgroup for the blind.
I was going to ignore it...but then felt it may help me in certain ways so I went there. As I read the
various postings of the people there..I was quite puzzled?? They all seemed very angry at the
Public's ignorance of this low-vision versus blind subject?I read on and soon realized that LEGALLY BLIND does not necessarily mean you only see black.
I learned that Tunnel Vision meant you lost your side vision but still had your central vision.
and some diseases robbed you of your central vision, which is our main vision for detail.
I felt my face redden as I realized I was one of the Public that did not know any of this..thought blind
was black period.
As I read on..I found that we, the public, made it very hard for the low-vision people to use the "for disabled
only" parking places, stalls etc.... The problem they said..was the bad looks they got from people when they
were seen walking around an object or anything that made others aware they had some sight.Using a blind-type cane...was the worse. Because of the mistaken knowledge of the public.
One man related that people actually would come up to him and yell out, "I KNEW YOU WERE FAKING!
YOU'RE NOT BLIND AT ALL". The man said he had practiced and practiced walking a full block
without any aids....and had walked around a child. He had no central vision but could see objects etc. with
his peripheral vision. I knew I had to get the word out anyway I can to help us, the public, realize that low-vision
means just that! and low-vision such as ..no central vision in either eye, or no side vision in either eye..is
considered "legally blind".Some states even allow low-vision, legally blind people to drive if they have some of the aids that are
available such as telescopic type aids ..and are able to pass the tests given.This really surprised me and I left feeling very sorry for them, especially when they posted how
it made them feel..some saying, What's the use of trying to do things like we use to do them when
we could see properly... ..we'll only be criticized for it when we use what we've learned in public.
How sad...May I ask you to do a great service... Tell others that Blind is seldom BLACK.
To help my husband understand what I see at this time..I put a black circle in the center
of the right lense of his glasses..then I smeared Vaseline on the rest of the lense..I then
put black crayon , Vaseline and black spots on his left lense...then said.. Ok honey..see what
you think of that. Though he is with me for my weekly appointments and sees the many laser
treatments and photos that the doctor takes and puts on a monitor..he still had not grasped
what it really is like for the person with this vision loss. Since mine is still not stable it
could easily get much worse..as it has for so many others in our group. Its scary to say
the least. The "Wet" version can hit overnight... If you go to the url above..you will learn
much more detail regarding Macular Degeneration and other eye diseases.When I' m scared, learned of some new information that the group may find helpful or
interesting, or just feel lonely....I run....not walk to my computer and my "computer family".. I'm
never disappointed in their response to me. You won't be either.
I hope..... NO, I pray I see more newcomers joining our MDgroup soon. You
won't be sorry. And you won't suffer alone ever again. WE need your imput, We need
your story, your information, your love. The url I gave above will give you all the
information you need to join us. See you soon, Donna
MDLINKS[links relating to more information for you] OUREYES[My story]
Feel free to e-mail me if you have any questions at all ..or if you
just need to talk.
[Support for you]Sign My Guestbook View My Guestbook
I thank you!
