Re: Welcome to the Bulletin Board
Hey Joan, Welcome to the bulletin board. Don't ever feel alone with this. You have all of us. We have people on this bulletin board from all over the world. We do have some others from England, also. They may be lurking out there and will respond.
One of the good things about this bulletin board is that it has allowed me to not feel like a freak. I know and "talk" to people here every day that have the same problems that I do. You can ask whatever you like and say whatever you like. We'll help you through your bad days and party on your good days. You are not alone and the support is not just for my country-it is for you and anybody else that can find this bulletin board.
We'll keep you up on the latest information. I do feel lucky that I have been able to attend two conferences here in the US but you can order the audio tapes from those conferences and hear most of what was said and what we learned from the speakers. A lot of that information will be in the next Benign Essential Blepharospasm Research Foundation Newsletter. Do you subscribe to this? It comes out every 2 months and is $15.00 here in the US. I'm not sure what the cost would be to have it sent to England. Email the Foundation and ask them. They may even have some information on others in England. I'm not sure but it wouldn't hurt to ask. You can find their email address in the Welcome to Newcomers at the top of the bb page.I'm 49 and have had BEB for 2 1/2 years. I was getting 100 units of botox in 12 to 13 sites. About 6 months ago, I had an upper limited myectomy so am only getting about 40 units of botox, now. We are still working on the sites and dosage. I'll be getting them on the 29th of October again and we will see how that goes. Just talk to us and join in and you will soon feel not so alone anymore. Pictures of some of us that attended the conference have been posted. I don't know how long you have been reading the bb-you may have already seen them. If you haven't, just let me know and I will post a link to them. Again welcome and tell us a little about yourself if you would like. Shirley in AR. middle of the US with Blepharospasm and Apraxia
Re: Welcome to the Bulletin Board
Thanks everyone for the welcome sorry about the downer I had just seen the video of my sons wedding and would you believe it I hadn't realized how twisted my face was,if that's the right word. I am up again now and I enjoy a chuckle as good as anyone.
I am 65 and live in Peterborough England , I have been a widow for eight years but I am a lucky person my children live very near to me except one who works in London but he has a house here and comes at week ends, my five grandchildren of course live nearby too.
What I would like to ask is do you have injections in your chin for this as well as other places on your face ??? It is great just to be able to ask a question just like that and people will know what you are talking about.
I enjoying crafts especially rubber stamping Have been doing it for a year and really addicted to it, also my computer is a great "friend" to me .
Thanks again for replying to my letter its great to know you are all there crazy or not ha ha
Joan
Re: Welcome to the Bulletin Board
I get shots around my eyes, the frown line, above my eyebrows mid cheek, jaw and throat. It is difficult to get shots above the lip because it can interfere with swallowing and taste. Ann D.
Re: Welcome to the Bulletin Board
Joan,
I get a lot of tightness in my neck and under my chin, so I got injections there in August. It did help, but only for a short time, since the dosage of botox was low. I'd like to try more next time.
Virginia in AL
Re: Welcome to the Bulletin Board
Welcome back, Joan. It's fun learning more about you and your interests. Sounds like you have good family support. You and I are similar in age (I'm 66).I've been curious about rubber stamping. I know that many people have a hobby of it, but just what is it you do with them? I only know about using them to decorate envelopes, etc. Sally in North Idaho
Re: Welcome to the Bulletin Board
Hi Sally ,great to hear from you , Oh yes I am lucky with family support.I am 66 on the first of February so our ages are almost the same.
I started rubber stamping about a year ago and have become a real addict I made my sons wedding invitation cards, although must confess I did those on the computer but I am busy stamping away at my Christmas cards. Last saturday I did a course on tea bag folding but we dont have stamping classes near me which is quite a shame would love to do some. I am in several craft clubs on net which gives you good ideas. If I get bored I go to my craft den as I call it and time has no meaning anymore ha ha
Nice to have heard from you
Take care
Joan Peterborough England
Re: Welcome to the Bulletin Board
Joan, I'm still not clear on this process. Does one simply rubber stamp different little wooden stamps around on paper to make a design? Or what? I've heard a lot about this, but haven't run into anyone who is actually doing it. Sounds kind of fun. Keeps you out of trouble!Sally in North Idaho where it's a beautiful, but chilly, fall day.
Re: Welcome to the Bulletin Board(stamping)
Hi Sally I had a little chuckle at your discription of rubber stamping sometimes it takes me quite a while to do a card because you make it into a picture, I made a garden once with a tree and bench and flowers but you have to be able to put them one behind the other without overlapping thats called masking, and it takes me a long time to do tea bag folding cards although I think they are beautiful , if you send me your e mail address I will send you a picture of one of those. It is fun dont know about keeping me out of trouble ha ha that takes some doing .
Joan in rainy Peterborough England
Re: blehro
Hello and welcome to the place you are free to say what you feel and even moan. We do love for you to join in and laugh with us too even when we are feeling a little flaky and crazy. You have friends here and we have people from all over and maybe someone from England will say hello and you will know you are not alone over there either. I'm 51, an RN who hasn't been able to work in my profession for over 2 years. I have a grown son and daughter and a 4 year old granddaughter and live in the USA in Tennessee near the Country Music City of Nashville. Tell us more about yourself. You are not a freak...just have a freaky condition that makes us special. You will find support,information and friendship here.
Re: blehro
Hi Joan,Welcome to this informational/fun/flaky site. You'll never be alone here and you are free to moan if you want to ... we all do a bit of that now and then. People have popped in from all over the world, even a few from England, as Shirley said. I am 66 and have been diagnosed with BEB for about 2 1/2 years. I have Botox injections every two months (just had them today) and they give considerable help, but are certainly no "cure." I take no additional medications for this disorder. I am extremely sensitive to light and that is a worse symptom for me than the spasming. I have not met (in person) anyone else with this disorder, but feel that there are many friends here on the BB. Come back soon and tell us anything you would like us to know abut you. Sally in North Idaho, near the Canadian border BEB/Meige
Re: blehro
Hi Joan,Welcome to the BEB bulletin board. You certainly are not alone - we are all here with you and for you. I am 48 yrs. old and was diagnosed with medication induced Tardive dystonia (including blepharospasm) in 1997. I have brain implants that help control the muscle spasms and I get 25 units of botox every 3-4 months for the blephs. I live in Oregon, on the western side of the country but I am actually from Pennsylvania (Philadelphia) which is on the eastern side of the country. Other than that, I'm just as crazy as Shirley & Sally & Delaine and everybody here. :~) Keep posting and let us know a bit more about yourself if you want to. What part of England are you from? Dee in OR
Re: blehro
Joan, what do the brain implants do and who do they help? Ann D
Re: blehro
Hi Joan and welcome. I live at Lake Clifton in Western Australia and like you have not met anyone to talk to locally. I did correspond with Gail from Tasmania at one stage but she stopped writing (emailing).I do correspond with an English BEB sufferer and I am sure she will be in touch with you when she catches up with the BB. I also correspond with a New Zealander which is almost the same thing as an Australian. (Don't you agree, Jenny?) I think you will find the US respondents on the BB are absolutely wonderful, as I have and are ever ready to cheer you up and give you loads of positive information re our condition. This is the best place to learn about BEB and where to go to get the best treatment. You will probably have to make a lot of enquiries to find a doctor who will treat you as an individual but as you will be armed with all the latest information from the BB you will get there in the end. Lyn
Re: blehro
I get 24 shots but I also have Meige syndrome and now it is down in my neck. I know I get a minimum of 100 mu. Distance doesn't matter on the internet. We can't even detect accents, broques or southern drawl. We are all beautiful and thin. Ann D.
--modified by Ann Doyle at Fri, Oct 19, 2001, 07:00:24
Re: we are all beautiful and thin
Ann, I like that. We ARE all beautiful and thin and the guys are all Chip and Dale stud-muffins. ( that was inappropriate-just couldn't help myself.) We can occasionally tell where people are from when they start talking about "ringing" someone rather than phoning or "chooks instead of chickens. And of course, one can readily pick up on Delaine's southern redneck status (which she can lay on really thick). You are right, though that distance doesn't matter on the internet and we can all be one big family (as usual some family members will have their differences of opinion) but for the most part we all try to get along except for Dee and me. But we have agreed to disagree so it works out just fine. I love her anyway.
Beautiful and thin is good, though. We should all remember that.Shirley in AR. with Blepharospasm and Apraxia proofed by Christel and Virginia for grammatical errors. :-)
--modified by Shirley-Arkansas-USA at Fri, Oct 19, 2001, 22:40:11
Re: we are all beautiful and thin
Shirley, I is correct. You get an A
Re: we are all beautiful and thin
Shirley, I don't know where my head is these days, I is not correct, it should be "me".Christel
Re: we are all beautiful and thin
Right on the second try. Keep her straight, Cristel.
Re: It's Christel
Hi Virginia, I am happy to inform you that you misspelled Christel. I will now change my I to a me or whatever it is supposed to be.
Everybody has been busy little beavers today while I was at the State Fair. Not a big turn out there. I think everybody has been scared off.
I had funnel cake, cotton candy, polish sausage with grilled onions and icecream of the future(those little frozen dots (tiny balls) whatever and I bought sun visors. I'm not even sick, yet. Oh, I forgot the caramel apples. I petted horses and bunnies and cows and sheep and goats and held a baby duck and watched a llama try to mate with a goat in the children's barn. A lady actually came up to me and said "what are they doing?" I looked at her and of course said "it looks to me like the llama is attempting to mate with the goat" She walked away. A man then walked up with his daughter and the little girl said to her daddy "why is that big animal chasing that little goat?" He looked at me and then told his daughter that the animals were playing and dragged her away. He had overheard what I had told the other lady.
I love the children's barn.Shirley
Re: It's Christel
The poor man was probably afraid you would corrupt his daughter with further graphic details!Did you remember to buy some Tums on the way home? Glad you enjoyed your day. Sally in North Idaho BEB/Meige and an extremely painful leg that is making me feel nauseated. Three weeks of this sciatic nerve or whatever is getting to me; pain medication nearly worthless.
Re: It's Christel
You caught me. Sorry, Christel - I usually do better than that.Sounds like you had a good time at the fair. I never cared much for fairs because of all the "amusement park" rides. But then I never checked out what was going on in the children's barn. Virginia in AL
Re: It's Christel
It's o.k., Virgina. I misspelled my own name once, signing off on a post, I don't know if anybody caught that one.Crystle in Ca.
Re: It's Christel
I misspelled my name one time on a spelling bee test. I think it's the only time, my name's not as tough as yours. Thank goodness it wasn't one of the words that counted. Thanks for understanding.Virginia in AL (yes I noticed)
Re: The State Fair
I don't care for the rides or the midway games but I do love to look through the livestock barns and go through the exhibits. They usually have an Arkansas craft and food exhibit where different people make up crafts and food dishes for prize ribbons. FHA and all that. They didn't even have that this year. A lot of the stuff that I have enjoyed in the past wasn't there this year. We did watch some goats being judged. I'm not real impressed with the intelligence of the sheep and goats. Watching some people practice their rodeo tricks on their horses in the arena was entertaining. I just bypass all the rides and other hype.Shirley in AR.
Re: It's Christel
Shirley, good for you, sounds like you had fun, I wish though that I hadn't read your post early in the morning on an empty stomach, I almost got sick. :-))
What is an over- sexed llama doing in the children's barn?Christel in Ca. who can't stand the sight, smell or talk of food early in the morning
Re: correction
Good grief Christel, if you are going to correct "me", get it right. Me don't know what to think. ;-)'
Shirley
Re: correction
I would like to thank Shirley. She learned me everything I no. Ann D.
Re: correction
Re: we are all beautiful and thin
The spring is sprung
The grass is rize
I wonder where the daisies is? Ann D.
Re: we are all beautiful and thin
Shirley,I disagree with you! It should be Dee & ME. Dee in OR who has agreed to disagree with Shirley, but only when we actually disagree, which is usually seldom, don't you agree Shirley?
Re:neither/either /Me or I
Now who really gives a flip??? If we have to have perfect grammar I'm out of here, cause if you are a Real Red Neck like me, it ain't gonna happen, ya hear? You want to be right or happy? So Dee, Shirley, Virginia and the rest of ya'll...... behave yore self and quick pickin' on yer sisters or I'm gonna half to give some body a whuppin.
Re: Re:neither/either /Me or I
That talk is music to my ears. I feel better already, Delaine!Sally in North Idaho
Re: Re:neither/either /Me or I
I'm sorry. :-( I will never do it again. ;-) I'm sorry that I got you all riled(sp)(oops, sorry, nevermind). I will behave. Grammar is unimportant. Spelling is unimportant.(Virginia is out of the spelling bee, though). I'll even try to get along with Dee (it hasn't been much of a struggle to do that lately, anyway.Shirley in AR who went to Fayetteville today to take her son out to eat lunch. (And pick up his dirty laundry) I love that young man. I better get out the wash board and call Delaine to come help me.
Re: Re:neither/either /Me or I
Shirley glad you were able to see your son. My nephew goes to school in Fayetteville. Just started this year. Actually he went to Joplin, Mo. to school last year. He wants to be a coach or something. Last week while we were in Nevada for my class reunion, my sister drove to Joplin to meet him for lunch. I think Joplin is half way between Nevada and Fayetteville. Since he's been in school for awhile, he probably does his own laundry by now. My youngest sister just has one son. Billie
Re: Re:neither/either /Me or I (Shirley)
Shirley, I was in the Dollar General Store here in Olathe today. I saw a lady that looked like you. I remembered sort of what you looked like from the conference a year ago, and then you had posted your picture after surgery. She had short blondish hair and had on sun glasses, (in the store) they weren't rose colored though. I almost ask her what her name was, but I decided that you probably wouldn't be clear up here and by yourself in the store. Billie
Re: we are all beautiful and thin
Hi Shirley, I think I wasn't lurking enough, I missed the beginning on beautiful & thin. I thought everyone was beautiful & thin. Last Week-end we went down to Nevada, MO. for my class reunion. I told someone at the reunion that I couldn't believe so many old people showed up. I had such a good time, actually more fun with people I didn't really hang out with in High School. I guess after you've been out of school for a long time, most people don't seem to care about who hung out with whom. (I'm not sure that is correct grahmer)
I think Dee & me is correct. You take out the other persons name out and say it, so I would be we all try to get along except me. Which makes it sound like you are the trouble maker. I'm sure that is not the case at all.
This is my 3rd post today, I'm not close to getting kicked-off the board am I? Billie
Re: we are all beautiful and thin/welcome
Hi Billie,Don't rememebr seeing you here before so I'll say welcome to the nut house! I see in your profile that you are a new grandmother - congratulations! We'd love for you to stick around and tell us more about yourself. Dee in OR
Re: we are all beautiful and thin/welcome
Billie came on the BB while you were off renovating "This Old House," Dee. I think she is from Kansas, but maybe (like Dorothy) she's not in Kansas anymore.Sally who is about to give up and go to bed for awhile.
Re: we are all beautiful and thin/welcome
Dee, I'm not new to the board, just haven't posted for awhile. I'll forgive you for not remembering me, since you were gone for awhile.
I do live in Kansas, and have for 34 years. I was born and raised in Missouri. I have had BEB since 94. I get Botox every 8 weeks. It dosen't work quite as well for me as it used to. But I can still manage. Actually I pray a lot. I have been a grandmother for almost a year now, and I enjoy my grandson so much. He will be one year old Nov. 3rd. Billie in Kansas
Re: we are all beautiful and thin
Hi Billie, You've got 17 more posts to go. You apparently can do 20 in a 24 hour period. Yes, I really did that many but so has Sally and Christel. I belong to an elite group, I think. I never should have mentioned the "me and I" thing. I knew how to figure out which would be right but I was too pooped to do it and now I'm getting even more confused and Dee is the trouble maker. I'm, of course, quite innocent.
Glad that you are back. Dee used to post but was without a PC for a while during a move so she is way behind times. She will eventually get caught up.Shirley in AR who needs to go to bed.
Re: we are all beautiful and thin
I know my face ain't no star
I know how ugly I are
But I don't mind it, I'm behind it
It's the ones in front that get the jar. Ann D.
I promise no more "POMES" today.
Re: we are all beautiful and thin
Joyce, I loved your "Pome" I read it to my husband & he laughed out loud. Thanks for the laugh.Billie
Re: blehro
Hi Joan, Welcome to the BB. I want to invite you to my
Cast off Party" I broke my foot 6 weeks ago and the cast came off today. Everyone will be there (I hope) but you are welcome to attend. Because I love strawverries everone is bring them. If they are not in aeason in England, Just come on anyway. welcome!!!Joyce in NC who is hurridly trying to straighten up the house so it won't look a mess. I have BEB and Meige, and it took awhile for them to diagnose me.
Re: blehro
Hi Joan, I almost forgot to welcome you, so welcome to "Blinkers Paradise" where everybody can come to cry on everybody elses shoulder.
But today we want to be happy and have a party for Joyce. So join in.
If you can't bring strawberries, bring a plum pudding. :-)Christel in Ca. BEB - Meige
Re:Is the party over?
Did I miss the cast off party? I'm here now and I brought angel food cake for the strawberries.Sally in North Idaho BEB/Meige
Re: Re:Is the party over?
Sally, it isn't over until the fat lady sings and she hasn't sung yet.Christel in Ca BEB-MEIGE
Re: Re:Is the party over?
I can't sing anymore; meige has made my voice hoarse and crackly. Someone else will have to do the honors of ending the party.Sally in North Idaho
Re: Re:Is the party over?
Sally, you are beautiful and thin, you aren't supposed to sing. It will have to be someone from outside the BB.
Christel
Re: blehro/Welcome
Hi Joan, welcome to the bulletin board. I was born in London, U.K. and in 1995, when visiting for 3 months, I read about Dystonia and Blepharospasm in a Woman's Own magazine. I went to the Dystonia Society at Weddel House, 13-14 West Smithfield, London EC1A 0JJ (Tel: 0171-329 0797) to get paper work on the subject and realised that I had beb and meige. I was diagnosed when I returned to Canada. I'm not sure if that address is valid (or the tel. no.) but if you haven't already, you might get information from them. The world is a very small place with this bulletin board, so none of us are alone. Take care.June in Toronto
Re: blehro/Welcome
Hi Joan welcome to the bb.My name is Colleen 69 years of age
(dont like to say old) I have beb and parkinson. I take botex every 2 months.My shots last 3 or 4 weeks.I can drive and do most of my work at that time.
I am going to Joyces partyand take strawberry shortcake. I make my own crust.
Take Care Colleen in Illinois u.s.a.
Re: blehro/Welcome
Hi Colleen (love the name very unusual) great to hear from you, and of course we dont say old I was told its blonde moments we have not senile ha ha . I have four shots every four months but I am due next month so now I am twitching , do you have them in your chin as well as around your eye??. I joke to my friends and say I am going for my anti wrinkle injections , but always add I would rather have wrinkles. I drive and do all of my work , love crafting but given up on cross stitch my eye doesnt like that.
Hope you enjoyed Jocye's party
Take care Joan in Peterboroug England
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