amount of people at conference


Posted by kathy , Aug 30,2001,07:57   Archive
so if there were 350 people at the conference, and the photos posted were only a handful, most of whom i recognized their names, do the rest of these people just not participate on the bulletin board or what?



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Re: amount of people at conference

Re : amount of people at conference --- kathy
Posted by Shirley-Arkansas-USA , Aug 30,2001,09:41 Top of Thread Archive
Kathy, There were some people that unfortunately were unable to make it to the group photo. Joanne Matuzas, for one. She has felt really bad about not getting in it but someone stopped her to talk with her and we only had a few minutes to take pictures before the next session began. I plan on posting a picture of her, though and some other ones. Others probably didn't want to have their picture made or felt like they weren't "regulars" who post.
There were a large number of people who stood up on Sunday morning when I asked how many people in the audience either read or posted on the bb.
I think that the word is getting out there about the bb but many people don't feel comfortable posting-for whatever reason. Many people had already left at that point to return home, also. I felt that there were many more people that had knowledge of the bb at this years conference than last years. In fact, I was surprised at the few people last year that were aware of and used the bb when Don Peaslee asked these people to raise their hands. Many had computers but did not know about or read the bb. I think things are achanging.

Shirley in AR. wishing more people would post but happy if they are at least reading and getting support and information that way.




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Re: amount of people at conference

Re : Re: amount of people at conference --- Shirley-Arkansas-USA
Posted by kathy , Aug 30,2001,10:36 Top of Thread Archive
right. the discrepancy just puzzled me because this is a very valuable tool for understanding beb and actually helping others.



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Re: amount of people at conference

Re : Re: amount of people at conference --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 30,2001,18:54 Top of Thread Archive
Just a thought: If there are people out there reading the BB who don't feel brave enough yet to actually post, but do have a specific question, perhaps they could privately e-mail to one of us who are willing to post our addresses and have us ask the quesiton. What do you think, people??

Sally in North Idaho




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Re: Readers

Re : Re: amount of people at conference --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 30,2001,19:01 Top of Thread Archive
I think that it is a great idea, Sally. All that the readers would have to do is go into a post and if the person's name that wrote that post shows up in color (blue) then they could click on the name and an email form should come up with the posters address already in the address box. They then just say hi and ask if whoever would post a question for them and state your question and send it off.

Give it a try

Shirley in AR.




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Re: Readers

Re : Re: Readers --- Shirley-Arkansas-USA
Posted by R COUTANT , Aug 31,2001,12:13 Top of Thread Archive
I AM POSTING FOR THE FIRST TIME. I'VE HAD THIS
DISEASE COMING ON ME SLOWLY FOR 4 YEARS. THIS
SUMMER IT GOT REALLY BAD WITH BOTH EYES SHUTTING
& SQEEZING FOR SOME TIME. LUCKILY THE 100 UNITS
OF BOTOX I GOT 7/31 IS WORKING. I'M SCARED TO
DEATH OF THE FUTURE. I'VE BEEN FIGHTING DEPRESSION
AND I'VE LOST 10 POUNDS. I'VE NO APPETITE. I'M
GREIVING SO HARD.



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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Joanne Matuzas , Aug 31,2001,14:21 Top of Thread Archive
Thanks for opening up. Probably everyone on this board has been there at one time or another during the different stages of this disorder.
Grieving is part of the process of no longer being able to do what you always could and I feel your pain. Now that you are getting some relief from the botox for your eye muscles, it may be a good idea to start taking care of your depression. A good counsellor may be helpful for you but be sure to explain the disorder to them so
they have some comprehension of your physical distress. In the meantime, hang on and keep talking to us. Maybe someone else can join
in here. We are here for you. Joanne M. San Diego, CA



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Re: Welcome R Coutant

Re : Re: Readers --- R COUTANT
Posted by Mindy , Aug 31,2001,14:26 Top of Thread Archive
I'd like to welcome you to the bulletin board.
You've come to the right place. You will find wonderful,caring,
supportive friends here that will do their best to help you
overcome your fears and depression.
It is a normal cycle to go through until you reach the stage of acceptance.
The best way to help yourself at this point is to post all your questions and fears.
My name is Mindy. I live in New York, am 48yrs. and had BEB for 8 yrs.



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Re: Welcome

Re : Re: Readers --- R COUTANT
Posted by Shirley-Arkansas-USA , Aug 31,2001,15:05 Top of Thread Archive
Hi,
I am so glad that you posted. Joanne and Mindy have already given you very good advice. I'm 49 and have had Blepharospasm for 2 1/2 years, now. I had some minimal difficulties for about 6 months with increased light sensitivity and eye irritation and eyes just feeling tired and then within a couple of months, I couldn't read or drive or work. It became difficult for me to function at all. I spent that first really bad summer mostly on the couch or on my bed crying or hiding. The information that I needed and the support came not from my doctors but from this bulletin board. I was extremely depressed and also afraid for my future. Over time, the depression has lifted and I'm not as afraid as I was. Knowledge and sharing of the aspects and the peculiarities of this disorder helped me tremendously. Do what ever it is that you need to do to help yourself get through this time. Some of us have sought counseling or medication to help.

I know that some of the posting on the bb right now is of a humorous nature and I just hope that it will not make you feel worse. Sometimes it is good to laugh and I'm glad that we can do that occasionally as there really is not much that is very funny about this disorder (especially when it can take such control of your life). At some point, hopefully, you will be able to start taking control and you will feel a little more empowered than you do now.

Tell us a little more about yourself and what you are going through and maybe with others sharing their stories it may in some way help you through this bad time. Grieving is normal as you have had a loss. That doesn't make it any easier but know that we also and still do grieve for what we have lost.

Shirley in AR.




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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Sally - in - Idaho , Aug 31,2001,15:25 Top of Thread Archive
Hi and welcome to this BB site!

All the advice you've gotten above is good. I think everyone goes through some sort of grieving process over the changes forced upon us by the limitations of this disorder. It takes awhile to accept and adjust, but life can and does go on. Don't be ashamed of your grief, it is a necessary step in overcoming this road block and in figuring out a detour route for your life.

I am 66 and have had BEB for about 2 1/2 years (after a few years of searching for diagnosis). I was not totally unaware of BEB and its symptoms, etc., because my mother had it back in the late '60s and early '70s; however, all the doctors kept telling me that it was "never" hereditary. Then I found out that it often is. I have Botox injections every eight weeks and they give considerable relief from spasms, although I still have squinting and extreme photosensitivity.

Please tell us more about yourself as you feel comfortable doing. And, feel free to ask anything or make any comments. Nothing is too irrelevant to ask if it concerns you. Keep a sense of humor ... you will need it with the tricks this condition will play!

Sally in North Idaho




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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Joann Humphrey , Aug 31,2001,15:54 Top of Thread Archive
Welcome to the BB. It's a wonderful support group. Glad your botox is helping. Joann in Ark.



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Re: Welcome

Re : Re: Readers --- R COUTANT
Posted by June in Toronto (June Floyd,June in Toronto), Aug 31,2001,16:13 Top of Thread Archive
Welcome to the bulletin board R. Coutant - I do hope reading some of the postings to you will help you know you are not alone. I've had beb/meige for 6 years now and went through what you did at the beginning. I seemed to deal with the drastic change in lifestyle reasonably well after a year or so with botox treatment, but have lately started the grieving process again (which I found very strange indeed). I guess this condition keeps rearing its ugly head and we need to re-evaluate continually and especially take each moment to enjoy and not worry so much about the future - but leave it in God's hands.

I'm glad, at least, that botox is working for you. Please post again - we care.

June in Toronto




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Re: Welcome

Re : Re: Welcome --- June in Toronto
Posted by Ann Doyle , Sep 01,2001,09:34 Top of Thread Archive
Like many others I grieved over the loss of my former life. With my first Botox treatment, I felt free again. Then like June and some others I again got down, went for counseling and he said; "You've been through a lot." To have someone knowledgeable confirm that I had a legitimate reason to grieve meant a lot.



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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Delaine Inman , Aug 31,2001,18:30 Top of Thread Archive
Welcome to the group and I'm glad you had the courage to post the truth about how you are feeling. We definitely do have to grieve our losses and changes with this diagnosis, but if you have been depressed long, you may need some extra help from a professional to get you over the hump. We are certainly here for you and have been there. We know you will be ok and you will handle whatever comes your way. Sometimes it is hard to believe that for ourselves without a lot of compassion, understanding and sometimes outside help. Do whatever it takes. Tell your doctor or seek out a counselor of some kind. We will pray for you and help you all we can. Hang in there and don't give up.



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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Christel-California , Aug 31,2001,21:29 Top of Thread Archive
Welcome to the Bulletin Board, R. Coutant. I'm glad you posted since there's nothing like having a support group of people who share your disorder and know exactly how you feel and what you are going through, and these support group meetings are daily and you don't even have to leave the house to get to the meeting and communicate with people who are caring and helpful.
This is not an easy condition to live with and we all deal with it in our own way. I'm 66 and have had this disorder for about 7 years, but was diagnosed less than 3 years ago. There are good days and there are bad days and just when I think I've accepted this, I go through a new grieving process and acceptance eludes me. I too fight depression, but already did before this disorder struck. I am also afraid of the future often, until I remind myself not to worry about things I cannot change or that may never come to pass. I try to take it one day at a time and make the best of it. It does get a bit easier as time passes.
Good luck to you and come back often.

Christel in Ca.




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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by kathy , Sep 01,2001,07:02 Top of Thread Archive
welcome R. Coutant. my eyes are also at their very worst in the summer months, almost intolerable. maybe they will get better as the cooler weather comes. yes to keep talking about this and posting and knowing you are not alone could help stave off your depression.



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Re: Readers

Re : Re: Readers --- R COUTANT
Posted by Owen Taylor , Sep 01,2001,16:29 Top of Thread Archive
Hi! I hope the bulletin board is as much help for you as it has for me. I also just started getting much worse this summer and have been getting help to fight off depression/anxiety. I hope your injections continue to be of help.

Owen




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Welcome R Coutant

Re : Re: Readers --- R COUTANT
Posted by Priscilla R , Sep 03,2001,09:33 Top of Thread Archive
Hi,
My name is Priscilla and i was diagnosed in March 2000. I am 45 yrs old.I was also depressed and afraid of the future. My family doctor insisted that i take care of the depression which I did with medication. I thought I would have to go on permanent disability because of this condition. I was out of work for 6 months but have now been back almost 9 months.
We'll help you with any questions you have. Just let us know.
take care.
Priscilla R - Dallas,Tx.



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magnesium

Re : Welcome R Coutant --- Priscilla R
Posted by r coutant (R COUTANT,r coutant), Sep 04,2001,09:44 Top of Thread Archive
my name is rhonda, & i live in dallas.

i received 100 units of Botox 7/31 & for the most
part things are going well. Yesterday i had a
difficult time driving. i don't know why.

i read on a web page to take 500mg of magnesium
as it relieves spasms. Does anyone do that?

(i'm not very proficient at input to this system.
i'll get it right eventually!




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Re: amount of people at conference

Re : Re: amount of people at conference --- Sally - in - Idaho
Posted by kathy , Sep 01,2001,06:57 Top of Thread Archive
that's a great idea, sally, but what about the virus thing from someone you don't know and giving them your e-mail address?



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Re: I'm too trusting

Re : Re: amount of people at conference --- kathy
Posted by Sally - in - Idaho , Sep 02,2001,00:20 Top of Thread Archive
Good thought, Kathy ... and thank you! I am too trusting. Guess I'll rescind my offer.

Sally in North Idaho who enjoyed your beautiful flowers.




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Re: I'm too trusting

Re : Re: I'm too trusting --- Sally - in - Idaho
Posted by kathy , Sep 03,2001,06:35 Top of Thread Archive
thanks sally. sometimes worrying is worth something.



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