What to do.


Posted by Alan Phair , Feb 12,2002,07:59   Archive
The pilot of American Airlines flight 11 that crashed into the World Trade Center lived in the town next to me. Last evening, there was a news item on TV that had to do with the amount of money that the family members were going to get from the Government. Without getting into that, I wanted to mention the fact htat his wife wa being interviewed and was holding her son whom I guessed to be around seven or eight years old. During the entire segment, this poor kid continually had his eyes spasming and shutting tight. At one point, it was like rapid fire blinking. I felt so bad for him and did not know if it were the lights, a disease that he has or if in fact, it has been caused by all the stress caused by the situation his family has been placed in. I know that they say that BEB does not happen often in young people, but if you could have seen him, you would have wondered whether the stress has brought out the condition in him.

I am torn as to whether I should investigate further to see what the story is. I would hate to have the family searching for answers if in fact it were a case of BEB yet deep down, I feel it is something that hopefully will just go away with time. I probably will just keep my two cents out of it but was wondering what others might do. I also wonder if anyone else happened to see the news item as it may have been carried by other networks...Alan




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Re: What to do.

Re : What to do. --- Alan Phair
Posted by Kelly Saffell , Feb 12,2002,08:34 Top of Thread Archive
We saw something similar in my daughter years ago. She was 3 and began this excessive blinking and squeezing. I, of course, freaked out!! I called the foundation and they told me that BEB in a child her age was unlikely but it was an early sign of Tourettes Syndrome and to take her to a pedi neuro. We video taped her in case she didn't do it at the doctor and took her to Childrens Medical Center here in Dallas. He said it was a stress reaction to our new baby and would probably resolve itself. It did over time. For about a year we would notice it if she was in a large group but we haven't seen any sign of it in a couple of years now. He should be evaluated by a neuro to rule out anything else but hopefully it is stress.

Kelly in Dallas




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Re: What to do.

Re : What to do. --- Alan Phair
Posted by Lynn Yarbrough , Feb 12,2002,16:00 Top of Thread Archive
Alan,

First, thanks for keeping an eye open (maybe that's the wrong metaphor) for your neighbors who might also have the same condition that plagues us. Having wasted 30 years in misdiagnosis, now I am constantly on the lookout for people who exhibit the symptoms, especially the full-facial-mask blinking. Let me encourage you to speak out every time you encounter someone who looks like us. I have recently encountered three people with BEB, Meige, and HFS who live near me and it grieves me to see them. At least now they know that someone cares and can offer support and advice. It would be almost criminal of me to hide from them the information that it has taken me so long to gather. My wife has not always agreed with me in my boldness, but she's coming around. Encourage your relatives and friends to work with you in spotting BEB'ers and spreading the word. It certainly can't do any harm, and I know many people would be overjoyed to know that we have hope.

--- Lynn




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Re: What to do.

Re : Re: What to do. --- Lynn Yarbrough
Posted by Virginia , Feb 13,2002,14:00 Top of Thread Archive
I guess I've posted this before, but it's been a while. I was "diagnosed" in a local pizza restaurant. Someone who has BEB noticed me while I was waiting and came up to talk to me. He told me about BOTOX and our local support group. I had been having symptoms over a year and had been to several doctors, but had no official diagnosis. I had been told by one doctor that the symptoms I described sounded like blepharospasm, but he didn't "see it" - familiar story now, but then I trusted the doctor. I had (at least temporarily) given up on trying to find out what it was, so was grateful that he spoke up.

Virginia in AL




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Re: What to do./Virginia

Re : Re: What to do. --- Virginia
Posted by kathy , Feb 14,2002,08:18 Top of Thread Archive
Wow, how lucky for you that the stranger did that for you! I used to be so naive that i had no problems talking with total strangers but now adays you never know who to trust. Was your initial reaction kind of awkward or what?



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Re: What to do./Virginia

Re : Re: What to do./Virginia --- kathy
Posted by Virginia , Feb 14,2002,09:00 Top of Thread Archive
He made it easy for me. He asked if my "eyes always do that" - blinking a lot then, as I recall. When I said they did much of the time, he just told me that he thought I might have what he has and went on to tell me the name of the disorder, about the doctor in Birmingham that gives Botox and about the support group. He was disappointed that he didn't have a card from the support group leader to give me, so I always carry some with me in case I should encounter someone who needs help. I was at the restaurant with my husband. It might have been awkward if I had been with a large group, but I thought he handled it well and I'm not shy. He at least gave me something to investigate, even if it turned out that I didn't have it. I didn't feel put on the spot - I knew what my eyes did and was sure others noticed it. I have seen pictures of myself and there's no hiding it, so it's pointless for me to get upset about someone mentioning it to me.

I had a little boy come up to me at the Garden one day and ask me about my red glasses (FL41s). You get used to questions and they don't bother me. Of course I wish it weren't so obvious (and it isn't always), but that doesn't seem to be the way it's going to be. I just refuse to stay hidden in my house all the time. That's not the way I want to live, so it's inevitable that people will comment. At least the man in the restaurant had a constructive comment.

Virginia in AL




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Re: What to do./Virginia

Re : Re: What to do./Virginia --- Virginia
Posted by kathy , Feb 17,2002,03:51 Top of Thread Archive
That's good, Virginia, that you refuse to stay a recluse. When my eyes are really bad, there is no way i can even function in my home. It's when the spasms are under control that i go out sometimes.
I had a teenage girl whose hair was in intricate braids tell me that she thought my red Fl41's were cool. they are almost exactly the style of Shirley's.



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Recognized BEB

Re : Re: What to do. --- Lynn Yarbrough
Posted by Joann Humphrey , Feb 14,2002,14:17 Top of Thread Archive
While in Salt Lake City in Mid January,prior to my limited myectomy, I was in a shopping mall looking at pins. Of course, I was using my hands to keep my eyes open. The clerk behind the counter immediately said, "Do you have blepharospasm?" What a surprise to come in contact with someone who was familiar with BEB. He, too, had it & gets botox from Dr. Anderson. Dr. Anderson is who did my surgery. I agree we need to speak up anytime we see someone with symptoms similar to ours. It's a big help to be able to discuss & get support from one another.
Joann in Ark. doing well. Wondering how I'll be in a couple of months. My neurologist wants to see me Feb. 18, as I don't think he's ever seen a patient who's had the surgery.



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Re: What to do.

Re : What to do. --- Alan Phair
Posted by kathy , Feb 13,2002,06:14 Top of Thread Archive
i think it's very nice of you to care. since you live so close , maybe time will let you know if you should do anything. i have also noticed some people on t.v. with similar symptoms and i wonder if they are also afflicted. the first thing i always notice on a person is their eyes.



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Re: What to do/finding someone with beb

Re : Re: What to do. --- kathy
Posted by Kelly Saffell , Feb 13,2002,09:00 Top of Thread Archive
My mom who lives in Nashville was in Sunday School recently and a new couple visited the class. Mom knew right away that she had beb/meige but didn't want to walk up and ask her. I had just decided to be the area rep for the foundation so mom instead asked for prayer for my decision in hopes that I could help others afflicted with this. The woman immediately turned to my mom and said "I have that." Alas, a new friendship developed both for her and for myself. She goes to Delaine's meetings and just wrote to me a couple of days ago. My mom had given her a copy of a video of me on the news which also included lots of footage of my girls. She watched the whole thing so she could get to know me better. I feel truly blessed to have this new relationship and we've never met face to face. I believe God places us where we need to be when we need to be there and if we reach out He will bless our lives.

Kelly in Dallas




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Re: What to do/finding someone with beb/Kelly

Re : Re: What to do/finding someone with beb --- Kelly Saffell
Posted by kathy , Feb 14,2002,08:21 Top of Thread Archive
What a wonderful story ! When were you on the news? Did you tell us about that yet?



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Re: What to do/finding someone with beb/Kelly

Re : Re: What to do/finding someone with beb/Kelly --- kathy
Posted by Kelly Saffell , Feb 14,2002,10:53 Top of Thread Archive
I posted it back in May. It was the local Fox news Health Report. I pestered him until he did a segment on dystonia,beb,botox. He came to my neurology appt. and interviewed both of us. It was only a few minutes long but it was very factual.



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Re: What to do/finding someone with beb/Kelly

Re : Re: What to do/finding someone with beb/Kelly --- Kelly Saffell
Posted by kathy , Feb 17,2002,04:01 Top of Thread Archive
I certainly missed out on that one. He actually came to your appt.. That is something.



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Re: What to do.

Re : What to do. --- Alan Phair
Posted by Sally - in - Idaho , Feb 13,2002,20:36 Top of Thread Archive
Alan, it seems to me that you were "in the right place at the right time" for those people. You are a thoughtful, caring person and I believe that you could come across that way to the mother if you wrote a letter to her just stating what you observed on TV and your concerns, plus adding information about BEB and also Kelly's past problem with her daughter in a stressful situation. The little boy has to have been under much stress and terror these past few months. I feel that you should "speak up."

Sally in North Idaho




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Re: What to do.

Re : Re: What to do. --- Sally - in - Idaho
Posted by Alan Phair , Feb 14,2002,10:35 Top of Thread Archive
Thanks Sally and to everyone else who posted regarding this. I myself have previously had three occasions where I "ran" into people who had either BEB or Hemifacial Spasm. On two of those occasions, the individuals had been searching for answers as to what was wrong with them and were grateful to me. The third already knew and wa being treated. I think that I will either contact the family directly or go through the one of the reporters who covered the story, I am not sure yet. I hesitated this time because it involved a child and I had been told that usually with children it is strictly a stress situation that usually will go away. I know I had a case with my own Granddaughter who was just copying me with her eyes when she was very young but who is fine now. She had been told as an infant that she had her grandpa's eyes and when I came down with this disorder and went through the operations, I think that she thought her eyes were going to be the same way since she had "my eyes". Boy was that traumatic for me let alone my daughter and her husband. I will let you know how things work out and again, thanks.............Alan



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Re: What to do./alan

Re : Re: What to do. --- Alan Phair
Posted by kathy , Feb 17,2002,03:58 Top of Thread Archive
I think if at all possible you should contact the family directly . The little boy has been thru enough stress and they probably would not appreciate the media focused on his problem. You could just let them know that you have an eye problem similar to his and if they need any additional info , you can provide it, even at some time in the future if they need time to think about it.

--modified by kathy at Sun, Feb 17, 2002, 03:59:03




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Re: What to do.

Re : What to do. --- Alan Phair
Posted by Rita Molnar , Feb 15,2002,01:08 Top of Thread Archive
Alan, my humble opinion is that any mention of it can't turn it into BEB if it isn't that....But, if it IS BEB, or some other facial dystonia, alerting the boy's mom to the symptoms of BEB might begin to get him some help that he might need, and that would be good.

I'm not certain exactly how I would approach it in this particular instance, though. After all the family has gone through in the past half year, it seems almost cruel, doesn't it, to mention yet ANOTHER thing for them to be concerned about. I think, though, that I might use this approach: 1. "I notice that...." 2. "Likely it's the from the tremendous stress you're family's been under..." 3. "But if it continues, and you're concerned, perhaps you might want to check out the BEB Foundation for information....."... Then offer a card with the Foundation's address and/or info.

I suffered this condition for too many years without knowing what it was, and I almost gave up on myself. I would have been very grateful to have heard the word "blepharospasm" before I went through tons of research on Tourettes, and a host of other suspect conditions. I want the world to know what BEB is, and, in my small world, I've been spreading the word about this condition to anyone who will listen.

Anyway...just wanted to add my comments...thanks for listening.

To you and to any of the other regular "contributors" who frequent this BB....Let me also thank you very sincerely for sharing your knowledge and ideas so freely. I don't always have an opportunity to add my two cents, but I do pop in on a regular basis to read what's been going on.

Rita in New Jersey.....celebrating my Valentine birthday
today, and thankful that my Botox is working just fine
for now.




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Re: HAPPY BIRTHDAY RITA

Re : Re: What to do. --- Rita Molnar
Posted by June in Toronto (June Floyd,June in Toronto), Feb 15,2002,06:27 Top of Thread Archive
Hope you had a great Valentine's birthday Rita. Glad to hear your botox is working well for you - check in again when you have time.

June in Toronto (beb/meige)



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Re: HAPPY BIRTHDAY RITA

Re : Re: HAPPY BIRTHDAY RITA --- June in Toronto
Posted by Rita Molnar , Feb 16,2002,20:34 Top of Thread Archive
Thanks for the birthday wishes, June in Toronto !!!!



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Re: Happy Birthday!

Re : Re: What to do. --- Rita Molnar
Posted by Sally - in - Idaho , Feb 15,2002,16:35 Top of Thread Archive
Happy birthday, Rita. My husband and I were married on Valentine's Day and I have an uncle whose birthday is that date. A nice day.

Sally in North Idaho




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Re: Happy Birthday!

Re : Re: Happy Birthday! --- Sally - in - Idaho
Posted by Rita Molnar , Feb 16,2002,20:38 Top of Thread Archive
Thank you for your birthday wishes, Sally !!! Valentine's Day is a very special day for me, and I love sharing it with others who have reason to celebrate it. Happy Anniversary to you,and Happy Birthday to Uncle !!!



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Re: Happy Birthday!/Rita

Re : Re: Happy Birthday! --- Rita Molnar
Posted by kathy , Feb 17,2002,04:07 Top of Thread Archive
Am just finding this out now. Hope you had a happy day. You really are a "love child" !



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Re: Happy Birthday!/Rita

Re : Re: Happy Birthday!/Rita --- kathy
Posted by Rita Molnar , Feb 17,2002,11:56 Top of Thread Archive
Thanks, Kathy.... It was a wonderful day. I used to take days--all of them--for granted until the BEB & Meige problem. Now, on days when I'm not feeling the effects as much, I make sure I take full advantage and enjoy each and every minute.

If there can be anything "good" about BEB & Meige, maybe it's this:
By making you face such a nasty condition, it shows you how great the gift of life is when you are feeling better.

Cheers...Rita in New Jersey




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Re: Happy Birthday!/Rita

Re : Re: Happy Birthday!/Rita --- Rita Molnar
Posted by catherine pender , Feb 19,2002,22:46 Top of Thread Archive
Rita

Many Happy Belated Birthay Wishes!

I have been away and just getting caught up with all the news. Glad to hear you are feeling so positive about the twists and turns that this condition brings upon us.

Catherine




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Re: Happy Birthday!/Rita

Re : Re: Happy Birthday!/Rita --- catherine pender
Posted by Rita Molnar , Feb 20,2002,00:16 Top of Thread Archive
Thanks so very much for the birthday wishes....I'm still celebrating...the month of February is MINE so long as the Botox is working...and when it stops, I'll be around again, complaining, probably.

Rita in New Jersey....owner of a brand new Ford Focus ZX5 (red, of course)...now if I can only continue to keep my eyes open so I can drive it.




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