Sources of Support
Chat Highlights
September 1, 2004

Norma Devine, Editor

On Wednesday, September 1, 2004, the glaucoma chat support discussed "Sources of Support."

V:  The topic tonight concerns our main sources of support.  We have no doctor here tonight, but some of us have our main support person sitting beside us or at another computer.  

K:  I am here, on my own computer, as V's main support person.  However, I think this group provides her with as much support as I do.  

N:  My husband is on the other computer, working on genealogy.  He calls himself my seeing-eye dog.

MY:  I will see if I can get my husband to come in here.  He provides foot-and-shoulder rubs for me.  

P:  Hello, everyone.  I'm MH's husband and main glaucoma helpmate.

V:  Do those of you providing support find that you often need to remind your GlaucoMate to take medication, and make and keep appointments?  

K:  My role definitely includes reminders and encouragement to use the eyedrops, as well as reminders that needing to wear dark glasses isn't such a bad thing.

V:  I just don't like people wondering why I have dark shades on when it is raining.   It looks funny. 

V:  How much do you support people tell others about your GlaucoMates' glaucoma?  Do you consult with your GlaucoMate first about how much information they want known?

P:  How much should a supporter tell friends who ask about a GlaucoMate's glaucoma?  It's often awkward, because I don't want to feel that MH's a topic of gossip.  

K:  I really only discuss with others what V wants others to know.

MY:  You know how parents like to compare notes on things, like illnesses and treatments?  Well, if your child is over age 18, that's invading their privacy.  That's all I have to say about that subject.

MNN:  I always hated it when my family told too much when I was a child.

P:  I try to give a brief answer, and encourage friends and family to talk to her directly.

ND:  I think that most of the time people ask just to be polite.  They really don't expect to hear many details.  

V:  I think it is important to tell family members because of the risk factor.  

T:  Yes.  I persuaded two family members to have eye examinations.  

V:  My brother has never even seen an eye doctor!

MY:  I guess I tell my husband the minimum that he would understand, so he doesn't have much to pass on to others.  My niece (the only blood link on my side) and my kids know about my glaucoma.  

N:  Glaucoma has been in my family for four generations.  So the questions are, "How is your intraocular pressure?"  Or "What did the doctor say?"  

PG:  In my case, it's important that my kids understand that my glaucoma is secondary, not inherited.

MY:  I finally got my brother to get his eyes checked.  I am informed about my mother's age-related eye problem, which is not glaucoma.  

S:  I don't broadcast that I have glaucoma.  If I am asked, I say, "It's under control."

MY:  When my husband and I first learned I had glaucoma, it was scary.  We were both thinking I was going to go blind.  Then as I learned more, I shared it with him.  He has been pretty short-fused when it comes to my having to cope with side effects from drops.  He wants me to demand the doctor give me drops with no side effects, but are still effective, which is not necessarily realistic.  

K:  As the healthy partner, it's difficult sometimes for me to deal with all the problems that go along with V's glaucoma.  It's difficult because it's her illness and I have to go by her "rules."

T:  I find that keeping my family up to date about my glaucoma helps allay their fears.  

J:  I still call family members more than they call me, but if  things got serious, I know they would be there for me.  They live in a different state,  but I would be welcome.  

P:  For me, the challenge as a supporter is that sometimes I have more need to talk about MH's glaucoma than she does.  Talking about it helps me feel better, and gives me ideas about how to help her more.  But she only wants certain people to know, especially if things aren't going well.

V:  Do you support people go along on visits to the doctor?    

PG:  Mine does, and he takes notes.  

SS:  Once I became involved and went with MNN to every appointment, I understood all the little things that upset her between appointments and had created stress for both of us.   

K:  I try to go along on most visits, but I work full time, and can't always get off work.  

MY:  My husband went with me at first, until I became more informed about glaucoma.  

N:  What bugs me is family members on the non-glaucoma side who have no medical knowledge and say things like, "Do you think it was something you ate?" or, "If you take this vitamin you will get better."  I have to tell them that when the optic nerve is gone, it's gone.

SS:  As far as the fear, I try to make sure I do not make light of it.  What may seem minor to me does not make it minor to MNN.  So I just try to empower her, and try to help carry the load emotionally.  

P:  When I go with MH to the doctor I often take along a list of questions and information I've found. I take notes and do the driving for MH.  

N:  Since I no longer drive, my husband takes me to the doctor and often asks questions, too.  

K:  Taking notes is a good idea.  V and I always hear different things.  

V:  That is so true.  K hears one thing; I hear another.  

MY:  I have had no major surgical procedures and no big problems, so my care is pretty easy.  I get support from this group and I can e-mail my glaucoma specialist.  

PG:  The day I was diagnosed was tough.  "B" was with me and we both left pretty shell shocked.

SS:  I do not like MNN going to the doctor without me.  Although she is a strong woman, the people in the office have learned what not to do when I am around.

V:  I like someone to be there with me in the doctor's office, but will go alone.  I do need to know someone is a phone call away -- just in case.

K:  There have been many scary times for us.  

ND:  My husband has always gone with me to doctor visits.  He writes down IOPs, and other important information.  He has helped find information in the literature ever since my glaucoma was discovered in 1988.  He's well informed.  I would have had a much more difficult time without him.  I am fiercely independent, but welcome his advice and knowledge.

K:  One of the times when V's intraocular pressure was quite high and the doctors couldn't bring it down, she was in incredible pain.  That was difficult for me to witness.

MR:  You are all so lucky to have supporters!

ND:  I feel sorry for glaucoma patients who have had relationships and marriages end, because the partner could not cope with the other person's glaucoma problems.

V:  Yes, it's sad.  I know of at least two. 

MH:  Lying in the operating room, thinking of everyone who was thinking about me, and loving me, was a great moment.  Strangely enough, I felt great under such circumstances. 

MNN:  Next time, I want whatever drugs you had!

MNN:  I don't know if I would have made it through my surgery without my main supporter. 

V:  When my left eye was sick I didn't have this chat support group.  When I had problems with the right eye, having you guys made a big difference.  

ND:  Do any of you belong to local glaucoma support groups?  I don't.

N:  No.   

V:  No.

MY:  Why would I need one? I've got you guys! 

SS:  No.

T:  This is the only support group I belong to.

MNN:  No.

MR:  Is there such a thing?

J:  One of my supporters was the glaucoma specialist. 

SS:  I feel as though I'm part of this support group.  I hear all of your names every week.  

PG:  No.

MY:  I just want to say that although I don't have a severe case of glaucoma, when you have dealt with a life-threatening disease, that really puts glaucoma in perspective. 

MY:  When I hear some of the more emotional newbies saying they would rather die than have glaucoma, I have to shake my head. With great support, it is not so bad.  There are worse things.

MNN:  But it is a life sentence.

MY:  A life sentence, but a life, not a death, sentence. Big difference when you really have to face something serious that can kill you.

ND:  One of my favorite quotations is, "What does not destroy me makes me stronger."  (Nietzsche)

MY:  That is my hubby's theme song.  It's his way of saying, "Suck it up and get past it already.  Move on!"

MNN:  Those with serious complications live with chronic pain and often feel like they are being tortured.  It can be a lot, psychologically, to bear. 

NT:  It's hard to give up driving.  I haven't driven in seven months, and have adjusted to it.  Fortunately, my hubby is very supportive.

V:  How many of you get support from your doctors? 

ME:  I do.

MY:  My doc is pretty supportive, but a couple of times he hurt my feelings.  That was hard. 

K:  I think V has a very supportive doc, but she does not agree with him sometimes.

PG:  No!  My doctor is a great surgeon, but is very abrupt, bordering on rude.

ND:  Most busy eye docs these days have only limited time to spend with a patient, so the doctor-patient relationship is often not what it should and could be.

SS:  They only have limited time, if you let them get away with it.  I won't let them leave the room until MNN has all her questions answered.  If I let him out too soon, then I have to answer questions on the four-hour ride home. 

SBC:  My doctor is supportive.  He knows when to listen, and goes along with my requests.

MH:  Mine gave me his personal cell phone number in the midst of a crisis, and said call at ANY time.

PG:  My doctor told me that if I got into trouble to go to the emergency room or see a general ophthalmologist.  He never mentioned calling him.

MJ:  Good evening, everyone. This is my first time in the chat room.  I am 29 years old and was just diagnosed with pigmentary glaucoma last week.  This is all new to me, so I hope you all will be able to teach me a thing or two.

ND:  Welcome, MJ.  Be sure to read the highlights of the Wednesday night chats.  You might want to begin by typing "pigmentary" in the search window.  

D:  I can see I have missed a lot by not coming in here for these chats.

N:  I'm glad I found this site.  I have learned so much.

BC:  I appreciate everyone's willingness to be open here tonight.  I have learned a lot, too.  

End of highlights for September 1, 2004.

On September 8, Dr. Wilson discussed "Advances in Glaucoma Testing" in the Chat room. Click here for highlights of that meeting.

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