Posted by: ClaireW ®
02/12/2003, 02:44:50
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..not a man...but thought I would push this to the top of the board for you...come on men...where are you...nearly valentines day too!
Claire
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Posted by: Alan Phair ®
02/12/2003, 14:04:07
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Now Judy, I know you are not talking about me....You are riht though.....Alan
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Posted by: Lynn Yarbrough ®
02/12/2003, 15:07:57
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C'mon, last I heard you guys wanted Less from me, not more...Anyhow, I'm a guy, I'm a regular contributor, and all you Silent Sams out there can rattle my cage whenever you like. --- Lynn
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Posted by: Marty Kiesewetter ®
02/12/2003, 15:17:18
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Ready willing and waiting to share my experience and try to help others.
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Posted by: Raymond C. Fudge ®
02/12/2003, 16:42:12
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I am a sometimes writer, more often a silent lurker. Any questions I can help with just ask. I will be able to answer more after March 10th as I am to have the Myectomy the 26th of Feb. I will not be "lurking in the shadows" after the 21st until 10 March.
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Posted by: June in Toronto ®
02/12/2003, 18:52:47
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Good luck with the surgery on Fwebruary 26th - let us know how you are doing.June in Toronto
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Posted by: Sherrie Feltz ®
02/13/2003, 07:33:47
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Didn't I read in an earlier posting from you that Dr. Patrinely will be doing your surgery? I go under his skillful knife on March 10 in Pensacola. Good Luck to us both. We'll compare notes at a later date.
Sherrie/Polk City,FL
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Posted by: Moderator-JB ®
02/13/2003, 09:31:18
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Hi guys ...There are, on a rather consistant basis, men with BEB who are registered on the bulletin board but do not post. Now I COULD compare that to 'men who won't stop and ask for directions while driving', however my husband is not one of those so I'd best watch what I say. Have I got your attention fellows :) Seriously, there are those out there in cyberland, who are really in need of help but do not say anything. Soooooo .... If you are of the MALE contingency, please speak to problems you are having or have had in the past. (Posters and non-posters alike.) IMHO (acronym for in my humble opinion) men may have a tougher time of it than women. Being the head of household, having difficulty working or not being able to continue working, is quite a blow to self-esteem. Please post your experiences. There are men out there who really need to hear that they are not the only ones. Thank you, Judy Blackman
Moderator
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Posted by: Raymond C. Fudge ®
02/13/2003, 16:42:38
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Judy, you hit the nail on this head ;>). Being the bread winner, one year from being vested in the retirement plan, the possibility of disability, not being able to drive, having to have my wife or daughter drive me to work, ... the list can go on...It is hard to lose that independence, the "mild" depression, although my wife and daughters think I should be seeing a shrink, the inability to do things without stopping for my eyes to re-open, like trying to type this without mistakes ... again the list goes on. I have always been the strong silent type, taking whatever the world throws at me and gettting up and going on. But, this is more than I bargined for. Thanks from those that wished me luck in my upcoming surgery. I will be back to let you know how it goes.
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Posted by: Virginia ®
02/14/2003, 15:01:39
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Raymond,
Your wife and daughters are probably right about you and most of the rest of us - not that the shrink would be able to do anything about the BEB, but maybe would be able to help us get over being the "strong, silent type". There are so many of us here who have a lot to learn about slowing down and learning to like it (the slower pace, not the BEB). :-)I sincerely hope that the surgery helps you be able to continue to work. Meanwhile take whatever help is offered by friends and family to share the load. They probably feel as helpless as you do about the BEB. Virginia in AL, too.
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Posted by: Christine ®
02/13/2003, 21:16:25
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When I first started reading the Board, there was a man who posted regularly. He had a brother and a sister with Blepharospasm as well, they hadn't had Botox and he had. What happened to him??? I can't remember his name.
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Posted by: Alan Phair ®
02/14/2003, 07:24:01
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Christine, that was me and I am still around. My sister and brother still have the BEB and are getting closer to needing to do something. My brothers son is having problems now and I just got a three inch stack of medical records that were forwarded to me by my neice in California who come to find out has had major problems with dystonia herself and with her shildren. In fact, her doctor called and asked for Dr. Andersons name as he is at wits end as to figure out what is going on with them besides some of the dystonia issues. She is in and out of the hospital with laryngiospasms where they have to keep giving her epinephrine shots. I am gathering data including blood samples for the people doing the genetic studies although the process is slow. Just thought that I would let you know that I am still here...Alan
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Posted by: Christine ®
02/14/2003, 15:49:28
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I'm sorry Alan, I didn't realise it was you!! I have often wondered how your brother and sister were and if they had got worse. You must be the only one with such close family members with this problem. I'm sure this must have a genetic link somewhere. Did your parents have Dystonia problems? No one in my family has these problems and I know quite distant cousins as well. I'm very shortsighted and no relatives have this either, so I don't know why these problems have popped up with me.The whole thing is just frustrating.
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Posted by: Alan Phair ®
02/14/2003, 21:03:38
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Christine, as I have mentioned before, I can vividly remember my grandmother sitting in her rockingchair at our home (she lived with us in later years) blinking like crazy and holding her eyes open with her hands. We used to call them ticks in those days or twitches but she definately had BEB. We have pretty much narrowed it down to her side of the family as my mothers sister also had the same problems..Alan
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Posted by: Christine ®
02/15/2003, 14:21:19
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Your poor grandmother, she must have felt so alone. No I haven't read this before.
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Posted by: Sally - in - Idaho ®
02/14/2003, 20:27:45
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Hi Alan,I hope I "heard" your correctly ... that they ARE doing genetic studies now and you are contributing. I recall your frustrations a while back because no one was eager to have your information, etc. I know you will do a very professional, competent job of gathering information and following through. My mother and I both volunteered to do anything required, also, but have not heard anything. Enjoy the snow for me. We got left out of winter this year. Sally in North Idaho
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Posted by: Alan Phair ®
02/14/2003, 21:10:13
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Sally, if you want some snow, there is plenty here to send you. My wife and I just came back from taking my sister out for Valentines day dinner (she is the one who lost her husband several years ago and we take her out all the time) and we were commenting on how the snow is just not melting this year but just getting harder and harder. WE het six or seven inches and it just packs in during the day when the sun is out and at night it is so cold that it hardens. If you hit a snow bank, it is like hitting a tree and will damage your car considerably. It is not bad out now. It is 5 degrees and the house has finally warmed up some. The radiation cooling will probably bring it to about 6 or 7 below tonight whihch is a lot warmer than it has been. Don't ask me why I ever left Aruba but I am heading to Vegas in a week to get away from all this...Alan
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