Re: Some thoughts about the Bulletin Board
I still remember my first visit to the BB. It was about a year ago. I had alot of questions that everyone was very helpful in answering. I don't know what my mother would have done without the help of the board. We both have learned so much. I also enjoy the humor. I remember some of the stories I read a year ago and I copied them off for my mother so she could see she was not alone with this disease. She actually laughed at some of them. When someone is new here, it can be difficult in finding answers without posting a message. My first time here I just looked around, and read what seemed like hundreds of post. I guess at first I was to terrified to ask a question. I didn't want to bother anyone. What I couldn't find answers to, I posted messages and they were answered quickly! I can't say thanks enough to all of you!
Cherie
Re: Some thoughts about the Bulletin Board
Cherie, thanks for your post. I just learned one week ago that I have blepharospasm and I'm in the beginning of learning more about it. I read your post and was inspired by it, I want to ask all the right questions and boy do I have plenty. I've suffered 5 or 6 years with my eyes closed. After my treatment with botox I am able to keep my eyes open and feel I have my life back. I"m looking forward to learning a lot more. thanks for your letter of encouragement. penny in oklahoma city
Re: Welcome Penny to the bb
You almost slipped by Penny. We've all been going so fast and furiously lately and having a little bit of controversy going on that your post almost slipped by without a personal welcome. Sorry about that. May I officially welcome you and invite you to jump right in and ask all those questions that you have. Sorry that you have Blepharospasm but you have come to the right place for support and information. I'm sorry that you had to go so long undiagnosed and possibly (probably) without treatment. I'm glad that the botox is working for you. Be sure and read the information at the top of the bulletin board page (BEBRF Main Page) You'll find lots of information there. And contact the BEBRF and they will send you a packet of information. The subscription to the newsletter is $15 and you will receive a copy of Patient Stories Volume 11, free. The newsletter is well worth the price.
Feel free to tell us a little more about yourself and ask whatever you like. We are here to help you.
I am 49 and was diagnosed 2 years ago. I have a problem with apraxia(where my eyes don't won't to open even when they sre not squeezing) and after much research and thought and discussion have decided to have an upper myectomy done by Dr. Anderson in Salt Lake City. It is a treatment option and won't be a cure but I am hoping for some improvement in my symptoms.
Start asking those questions.
Again, welcome to our group.Shirley in AR. where it is a cloudy, dreary, rainy day.
Re: Welcome Penny
Hi Penny, welcome to the beb bulletin board. I'm sorry you have blepharospasm, but glad that the botox injections are working well for you - do you know how many units you had?I was diagnosed over 6 years ago and have beb and meige and am unable to work. Botox works well for me as well, although I have 3/4 weeks of painful side effects, that I am going through right now, to cope with before the eyes/lids settle down. Afterwards I remain light sensitive and am unable to look at a moving computer screen for example. Post any and all your questions and we will all do our best to answer them, or at least set you off on the right path if possible. Again, welcome. June in Toronto
Re: Some thoughts /Welcome, Penny
Hi Penny ...Welcome to the BEB BB. How wonderful that Botox is working well for you and letting you get on with life. That's what it's supposed to do, but it doesn't work that well for many. I have been officially diagnosed for a couple of years now (after many years of searching for answers). I have Botox injections every two months and they work fairly well for me. My biggest problem is extreme photosensitivity and I am particularly bothered by fluorescent lighting. Please tell us more about yourself as you are comfortable with. Ask anything, suggest anything, relate any successes or ideas. We're here to listen and help one another. Sally in North Idaho
Welcome Penny& Botox update from Delaine
Glad you finally got a diagnosis and the Botox is helping you. I can't imagine struggling for 5-6 years the way you did and so many others have. Let us know more about you. Welcome to our group.Delaine in TN, who is 50 and has had BEB 2 years and was diagnosed in about 5 months. I had Botox Monday for the 6th time and I am a little better so I'm hoping it is going to give me some relief. I also went up a little on my Klonopin so it might be that. The Botox didn't help the first 4 times I got it. I've had a partial myectomy. Monday the doctor told me she didn't think the Botox would ever help me much. She said I wasn't wrinkled around my forehead and eyes and looked more like apraxia. That was not what I wanted to hear.
Re:welcome to Penny
welcome! i'm glad you got diagnosed correctly. that is half of the battle. usually those on this board post a new subject, problem,symptom, etc with that subject in the post heading. that way you can scroll down the page and find something that pertains to what could help. Also the fastest way to get response is to just go ahead and post a message about some aspect of BEB with a Question mark after it. Most people are very prompt and courteous about responding, if they think thye can shed light or help support you on something.
--modified by kathy at Fri, Mar 30, 2001, 08:28:45
Re: Re:welcome to Penny
I thank all of you for responding so quickly. At the moment I can think of no questions I want to ask and there are many. I'm still letting it sink in that I actually have found a name for my malady and a treatment. What surprises me is that it was so quick, in an hour and a half I had the name and a treatment and for about 3 days I was perfect. Keeping my eyes open feels so good. I am now seeing that not all is perfect, I drove yesterday and things were fine, it was a cloudy day. Today I drove and its a sunny day. I found that my peripheral view was distorted some and it made ma a bit crazy. May not be able to drive as I once did. That won't be a problem, my husband is retired. I am having a little trouble reading and didn't have that before the treatment. Before the botox I was able to calm my spasms by grabbing a book. Reading has been a real life saver for at least the past year.I don't want to try and write everything at once but I'm so glad to find you guys. Thanks to Delaine and Sally as well, I'll be back on every day.
Re: Re:welcome to Penny
I'm so glad that you can read, Penny. I lost that ability for about two years and was in a real funk. Books have always been my life, and I'm a retired librarian for Pete's sake!!! All of a sudden about Christmastime this past year, I noticed that I could read again ... not just headlines, but actual pages. I kept quiet about it for awile, afraid to tempt fate by acknowledging the fact. My Botox dosage had been increased and seems to be at a good level now for me. What a wonderful Christmas gift that was!Enjoy reading. It can be such a wonderful way to ease stress. Sally in North Idaho
Re: Re:welcome to Penny
Sally, I may have spoken too soon. I had my first ever botox injections Wed. of last week. Tuesday evening I started to read and found it very difficult, thought it might be the light but brighter light didn't help. I'm in and out on the reading, seems like I do ok through the day but the evening is not good for reading. Its been such a treat to read when all I was able to do without having spasms was the reading, playing piano and using computer. I thought I was a real fruitcake. However if I'm able to read during the day I'll deal with it. This not being able to read started with a blurring of my eyes and it has lasted as long as today but is gone now. Am I to expect daily changes? The first 3 days or so was just great, not so with the last 5 or 6.Thanks for your post. penny in oklahoma city
Re: Side-effects of botox
Penny, One of the side-effects of Botox is blurring of vision. I've had this happen occasionally but only minimally. Some people have more trouble with it than others. I'm not sure how long it will last. It probably would vary from person to person but I would hazard a guess of a couple of weeks. Maybe someone else could be a little more specific about this that has had a problem with it. Sometimes, you may not get the full effect of the botox for a couple of weeks, so you may still see some changes going on. Mine are usually at there best starting about 2-3 weeks after my injections and then I can tell that they are starting to wear off at 6-8 weeks and then it is really downhill for me after that. Everybody is different and you will just have to wait and see how they will do. Some people go 5 or 6 months between injections. The norm is about 3 months, though.Shirley in AR.
Re: Side-effects of botox
My blurriness lasts a couple of weeks also, and the Botox effectiveness begins to wear off after about six weeks. I have the injections every two months and am ready and willing by then!Sally in North Idaho
Re: Side-effects of botox
Shirley, thanks, thanks, and thanks. This gives me encouragement. By last night my eyes were some better and I read for longer period of time. I'm trying to get through the book of the patients stories which was given to me by a member. This morning my eyes are ok, they aren't what they were before the injections but its nothing I can't live with. Did I tell you that I've not had a spasm since the injections? Relief from the spasms makes it all worth while. thanks again for the post, I'm excited about all of this. penny
Re: Side-effects of botox
Penny,
I'm glad that you are spasm free, now. I hope that the botox works well for you. It would be good to keep a daily diary, at least for awhile and keep track of your symptoms and improvements and any side-effects and when and how long they lasted. It is good feedback for the doctor. Sometimes it takes several sets of injections before you get everything at its best. Botox is not a cure all and probably won't completely eliminate your symptoms. You may have more difficulty during times of stress and other triggers that you will notice. The botox doesn't usually help with the light sensitivity. I am glad that you are able to read, now. Be sure and use eye drops(preservative free) as you probably won't be blinking as often and use an eye ointment at night. Sometimes when the botox is working real well, when you go to sleep at night, your eyes may not close all the way as they are sooo relaxed and this will tend to dry them out. Some of us wear one of those beauty or sleep masks at night to help with this.
I believe that many people get excellent results with botox and can pretty much go about their normal routine most of the time with some modifications. I and many others don't have such good luck with the botox and have to try different things and are more limited in what we can do. I'm hoping that you have good results. Keep us posted and ask questions when you think of them.Shirley in AR. knowing that all is well on the bb
Re: Side-effects of botox
Shirley, I thought I had answered all posts but I think I missed this one. I am keeping journal and it is two days for my two week progress report to my dr. I'm going to call tomorrow, can't wait. It is almost 8 p.m. and I'm feeling normal, no dryness or discomfort at all. Of course this hasn't been unusual since I could function rather normal as long as I didn't leave home. Will let you know tomorrow what I learn from dr. *-)
Re: Side-effects of botox
Shirley, do you know of anyone who has problems with double vision? Close up like reading I do fine except for the blurring but when I'm looking out the car window or like this morning at a funeral watching the speaker I saw two of him. After only a few seconds I begin to see double. I am due to let the dr. know my progress since the injections so in a couple of days when its been two weeks I'll call him. Do you think it could be a matter of adjustment in the botox? I'm happier than before the botox, then I had spasms often and when I wasn't having spasms I had lots of other problems. will appreciate your input. penny
Re: Double vision-Side Effect of Botox
Penny, It does state in the Botox brochure which lists the potential side-effects, that double vision can occur. It does not say how long it may last. It does mention that covering one eye might help but unless it is really bad, I wouldn't want to do this myself. I don't remember if anyone on this board has had this particular problem or not. I know that the blurry vision has come up and I have experienced a little of that, myself, this time. I'm not really sure if these particular side-effects are due to the placement or dosage. Just let your doctor know about them and see if he has any idea about this. I don't think that this will last a long time or be a major problem for you. If it does turn out to be, though, talk to your doc about what can be done to keep it from happening again. The different muscles that are injected control different areas and functions of the eye. Botox can actually be used to control Strabismus (or crossed eyes).Shirley in AR. who should be ironing.
Re: Double vision-Side Effect of Botox
Shirley,I looked at my botox brochure and there is nothing listed about blurring or double vision, but it may be in different brochure. I'm glad you've seen it listed, it makes me feel better. I can already tell that I'm having changes daily so that is also comforting.I am keeping a journal and I'm to call my dr. in two weeks from treatment which will be in two days, I think I'll cheat and call him tomorrow. Over all I'm feeling great, its annoying not having great vision when I'm so used to it. Anytime I could hold my eyes open I had perfect vision. Also when my eyes were convulsing I could almost always start reading and they would calm down immediately. I kept a book close at all times. Since I can see now I'm doing other things that I've been missing out on the part 5 to 6 years but don't want to give up reading. Thanks again, I'm going to do more searching, one lady sent me some new web sites and wants me to go to the chat room. I'll try to join that. penny
Re: Double vision-Side Effect of Botox
The brochure that I saw it in comes directly from Allergan. The information is similar to what the PDR or patient handout would be that came with the botox. It has the full prescribing information in it. I got it at one of our support group meetings.
Botox has a website at www.BOTOX.com
snd a 1-800-442-6869 number that you can call for information.Shirley in AR.
Re: Double vision-Side Effect of Botox
Shirley, guess I'm overlooking it, I have a brochure from Allergan and I've read under side effects and the rest of it also. But its ok, I believe you and I'm thinking it will subside. As a matter of fact I haven't had any double vision this morning, I think the real test will be when I go outdoors. the sun is shining today and I don't have really good protection, just regular sunglasses (pretty dark) but will try to find something for better protection today. I need prescription and want to wait until I talk to dr. before I make any decisions about new prescription sunglasses. Today so far has been great, another normal day like I used to have more than 5 years ago. Wonderful, huh? Will check back later. penny
Re: Double vision-Side Effect of Botox
Penny - you mentioned prescription sunglasses. Do you know about FL-41 coating for prescription glasses? Mary
Re: Double vision-Side Effect of Botox
Mary, I haven't heard of the coating but I"m interested. I just had new glasses made and am still wearing my old sunglasses (prescription) and since it is old prescription I need to probably get new sun glasses. I went to a beb member's house yesterday and she loaned me pair of sun blockers, I wore them home over my sun glasses and it didn't stop the problem of double vision but I'm happy to say that today I had them on before going outdoors and in the 3 hours of riding in the car I had no discomfort or double vision at all. Things seem to be looking up and I'm doing everything I can thats suggested to me.I'll appreciate your info. thanks, penny in oklahoma city
Re: Double vision-Side Effect of Botox
Penny, its been 4 weeks tomorrow since I have the botox injections (had them for 6 years now) and I can say that today is the first day I don't have bad..blurriness, although at this time in the morning I still have residue from the overnight cream I use (its takes a while to go away after I get up). I had double vision for about 6 days this time around - IT DOES HAPPEN - don't be worried, it too will pass.June in Toronto
Re: Double vision-Side Effect of Botox
hi June, I'm beginning to think that I shouldn't be surprised at any thing that happens and this isn't anything I can't live with, its annoying to say the least but is so much better than what I had. I'm not using ointment at night. I have used it in the past and it makes me crazy, but then so do the thick tears, if I use them at night I wake up all yucky and so I try to use them in the afternoon and only use one drop in each eye, any more than that and it takes me an hour or more to clear up. If I can get by without using them I'm going to but if I really really need them then of course I'll use them. Ive been told by a fellow member that I probably have a light case of blepharospasm, after I had my first treatment on the 8th I've had no spasms. Only after about 3 days later did I feel any discomfort at all and thats when I began to be blurred and see double. I'm fine as long as I stay at home so will try to do a lot of that until I see how things are going to progress. Please feel free to advice me on anything you think I need to do, I can certainly change my habits if its best for me. thanks , penny in Oklahoma city
Re: Double vision-Side Effect of Botox
Hi Penny, an opthalmologist who I go to every 4 months for general eye check ups (she doesn't give me the injections) said for me to "do myself a favour and use the night cream every night without fail". I rinse off the outside lids every morning with a product here in Canada called Lid Care - but you can use Johnson's Baby Shampoo (she actually prescribed that but I find it stings a little bit!). This eye hygiene clears up the grease on the outside of the eye (and it also helps to stop blepharitis from occuring - which is eye ducts that close up and become infected), but it does take a while longer for the inner eye to clear up in the am Imust admit. I use thicker (individual preservative-free) drops (Celluvisc) when the eyes are bad before and after the injections. Then I use Refresh Plus drops (individual preservative-free) and Refresh Tears (bottle preserved with Purite - which becomes salt water when it comes into contact with light-so is ok) at other times. The opthal said to do this to protect from getting any other problems with the eyes - and I follow her advise faithfully.I believe it is especially important to use the night cream as our eyes don't close 100% and then there's the problem of getting glaucoma - which I definitely don't want! I use a small soft towel on my pillow and this soaks up any grease that oozes inthe night - I travel with a towel as well and would find it hard not to sleep with one. Hope this helps. June in Toronto
Re: Double vision-Side Effect of Botox
hi June, I think by the night cream you mean the ointment in a tube. Like refresh pm, right? When I went to market today I forgot to get it but will get it before tonights bedtime and I'll use it faithfully. I have used the baby shampoo off and on for 5 or 6 years and never could see that it did any good but what do I know? I have also used Stygeine sterile eyelid cleanser but stopped using it few months ago, couldn't see a difference when I used it or if I didn't. Will go back to using it. I'll follow your example with the towel. A few days ago I was sitting in church and realized that my eyes didn't seem to be closing completely and now you give me the additional info about that. I'll start usuing the ointment tonight and let you know. Now for the good news. One of the girls from the foundation that has contacted me loaned me a pair of sun blocker shades yesterday which on the way home from her house I couldn't tell a difference but today before I left to go outdoors I put them over my regular glasses and I was riding in the van for 3 hours without any double vision so I'm really encouraged and by the way my dr. just called and he gave me an exercise to do that will let me know if the double vision is caused by dryness or by some of the botox getting into one of the eye muscles. I feel better every day and more informed as I stay in contact with all of you. thanks again, I'll be back, penny
Re: Exercises for the Eyes?
Penny, you certainly are larning 'all the tricks of the trade" - and fast too! Yes that must be the same night cream - its called Lacrilube here (I'll checkand see if we have the Refresh PM. I'm glad about the sun blocker shades - I don't wear prescription glasses, except for close up work, but do wear good, dark wrap-around glasses - sometimes one large pair over the others when necessary (plus a brimmed hat of course!). I'D LIKE TO LEARN MORE ABOUT THE EXERCISE your doctor prescribed to enable you to tell if the double vision is caused by dryness or by some of the botox getting into one of the eye muscles -others might like to know about it as well. Thanks and carry on the good work!
June in Toronto
Re: Exercises for the Eyes?
June, I didn't get out to shop for the night cream yesterday but used the celluvisc at bedtime and it seemed to help, at least today so far I've had no double vision, I also used a drop in each eye before I went outdoors, had my wrap around shades over my regular glasses and everyting was cool. I bought refresh pm but couldn't find the wash to use in the mornings. I have some left from before and I'm sure I'll find some before I am out. The exercise my dr. gave me was when I am having double vision I cover one eye (doesn't matter which) and if the double vision goes away it means my eyes are dry, if it doesn't go away then its the botox but it too will pass and it isn't dangerous. I am so grateful that my eyes are responding well to the botox and I'm feeling normal, each day seems better than the one before. penny
Re: Exercises for the Eyes?
Hi Penny, thanks for explaining the exercise program. Glad things have improved for you - it can be scary stuff sometimes, but this bb is so great for sharing and learning. I don't know what we'd do with it.June in Toronto - where it was a lovely 12 degC today and sun shining
Re: Side-effects of botox
Penny, my vision easily slips into double but I can pull it back in where it belongs. This happens especially when I am tired.Sally in North Idaho
Re: Side-effects of botox
ok Sally, thanks for the encouragement, I also can bring them back to reality by closing them and reopening but they are right back in 5 to 10 seconds. It isn't a problem so much unless it prevents me from driving, if that happens I'll learn to live with that too. Wed. is my day to check in with dr. for my progress, I think I'll cheat and call a day ahead of time. Will let all of you know what advice he has. thanks again
Re: Side-effects of botox
My last Botox I had blurred vision for approx 2 weeks. Very annoying.
Re: DOUBLE VISION AFTER BOTOX
penny, I get double vision sometimes after the injetions - usually last 5-8 days then goes away. The blurriness lasts longer for me. The doctor seems to think that double vision is ok once in a while and can be expected.June in Toronto
Re: DOUBLE VISION AFTER BOTOX
ok, sounds good to me. I first noticed it when I was driving but didn't recognize it as double vision, I thought the streets were coming up to greet me. Then sitting in church I saw two of the preacher and realized that was what it was. As far as the blur I can handle it, its mostly annoying when I read, I can handle that. I'm going to call dr. tomorrow, will let you know. thanks. penny
Re: Botox Side Effects
Penny, I differ with my side effects of botox. I normally don't notice anything after the injections for about 3 days, then I get blurred vision for 3/4 weeks and lots of burning pain. Sometimes I get double vision as well. Everybody appears to be a bit different, but I'm lucky because the botox lasts 4 months or more. Give yourself a bit more time toevaluate how the botox works for you.
June in Toronto
Re: Reading Difficulty
Penny, I'm sorry to hear that you are having difficulty reading. Mine began with a feeling that my eyes would not focus or work together. I kept telling the doctors that it was like they were fighting with one another. I would try to close one eye and read that way, but that did not work either. It seemed that the Botox dosage had to be just so before I could focus on lines again. It is still not easy to read, but I push ahead and do it. After a bit I have a headache on my left temple from the pressure of squinting or that eye trying to keep in focus ... or something.I wish you luck in keeping your reading going. Many people have no trouble with doing so, while others can't read at all. Just another of the idiosyncrasies of this "thing" we are dealing with. Sally in North Idaho
Re: Reading Difficulty
I miss reading good, long books - can't anymore. When the eyes are `reasonable' I can read a magazine page or a newspaper page - but then the headaches come and its not worth it. I get 3-month's supply of talking books at a time - just finished an epic - "Down on Your Knees" by Ann-Marie MacDonald - she's a Canadian from Cape Breton. She has a play running in Toronto right now (Goodnight Desdemona (Good Morning Juliet)) - wish I could see it, but the eyes are too bad, and after the lights that appeared in the last theatre production I saw (before Christmas) I can't face it happening again! I was planning on reading so much...when I retired and look what happened! SO FOR ALL YOUR YOUNGER PEOPLE OUT THERE - do what you can now - don't wait for tomorrow - it's not worth it.June in Toronto
Re: Reading Difficulty
June ... I couldn't agree more with your "Do It Now" philosophy. When I became unable to read, I was extremely bitter about having listened to others through the years who always said to do the dusting, make the beds, etc., etc., before you read. All I could think of was that many of the things I had read about in years past were still in my memory, but I could honestly say that I couldn't recall one dusting moment thrill! Now I believe in the motto "Dessert First!". I haven't tried the talking books since I can read a bit again, but might check into them. Do you get them through your library or through the Association for the Blind? Sally in North Idaho where March is exiting like a lamb with a few snowflakes, but no much-needed rain that was predicted.
Re: Talking Books
Sally, I get my talking books through the Toronto Library System and The Canadian National Institute for the Blind - a combined effort that requires a doctor's letter to obtain the books. They have a huge selection compared to our local library, which is quite small being in the city where space is at a premium. The only problem is it takes a while for the latest book to be read by a volunteer, obviously, as they are not a commercial concern. Sometimes I get tapes that are unusable - being worn out I guess - that's especially hard when I am in the middle of a good mystery and I don't know the pertinent facts! When the eyes improve I don't listen to many as I prefer to be up and about - but when I can't do all the things I won't to, the books come in handy.June in Toronto, whose hubby bought in Chinese food for daughter's birthday lunch today - grandaughter, age 10, wore me out, but I'm happy.
Re:Library on Tape
I joined that free books on tape that was mentioned in the newsletter and at the conference and it is really easy to get approved and use. I love it. Because I am so far from them, I can keep the tapes 2 months and even then extend by calling. The people are so nice and you get a hugh catalog with thousands to choose from by the categories you enjoy.
Re: Re:Library on Tape
How did you do that? Would I just e-mail the foundation for an application form? Sounds great!Sally in North Idaho
Re: Re:Library on Tape
Sally,
I contacted the Services for the blind or visually handicapped here locally. They were very nice. They sent me an application and I attached a letter from my doctor (one of the ones that I used to obtain SSD) saying that I was functionally blind and unable to read. They sent me a cassette player and tapes. The first audio book I tried was not very good quality, though, and had a lot of noise and squealing on it. I think that it was very worn and old. I hope that the others are better. Our public library has lots of audio tapes, too, and they will play on a regular cassette recorder. You might check into it. I've enjoyed it.Shirley Barr
Re:Books Aloud
There was short article in Jan/Feb BEBRF newsletter. email is booksaloud@juno.com or website at www.booksaloud.org No charge to join or mail back books. I sent letter that my doctor had written for SSD like Shirley did and a lady called me and was very nice and I had books in a few days. They didn't provide tape player, but I didn't ask for one.
Re: Re:Library on Tape
Delaine, I think that I might have mentioned this before. I have used books aloud for about three years now. Occasionally, I get a real good one but for the most part, the readers are not high quality and therefore I don't seem to get too into them. I find that the ones at my library which are the original publiched editions are much better. My library has over 3,000 audio tapes and we are only a small town. Many people including myself, donate tapes if they buy them. I just brought over ten tapes that I bought over the last few months. Most of the library tapes are abridged editions which are nice because they cut to the chase and omit the fluff stuff. When I went for my operatin a few weeks ago, I actually read "listened" to ten books during my stay in Utah. It really helped pass the time....Alan
Re: Re:welcome to Penny
Penny. i get blurred vision sometimes also. it eventually goes away. it is very important to keep using the eyedrops very frequently after your Botox starts to work so as to minimize dry scratchy-feeling eyes. i can usually taper off on the eyedrops after about 2 weeks.
Function of the Bulletin Board
Hi AllIt's clear that the Research Foundation has clear views on the functions of the BB. These are articulated in the introductory statement about the BB, and are also implicit in Don's query. Don's post reminds me of past attempts I have made to clarify the function of the bulletin board. I interpreted the lack of response to my queries to mean that I was not conforming to the frame of reference that the BB's administrators had for BB users. I suspect BB users are expected to be grateful (and we are!), non-political, a little naive and not too analytical. I've copied below the more relevant sections of an email I sent to a BB adminstrator some months back. "...(I)t is not clear from the BB policy information provided whether the Foundation or its representatives make use of details provided in the BB posts. Is/has any analysis been undertaken of the BB posts or the information provided in the chat facility? ...As you are aware, listserves and similar often make available summary information for members. Typical information of this type includes number of registrants, and number of registrants by country of origin. This kind of high level information cannot compromise the anonymity of any registrants. However, it can increase the sense of community felt by the registrants, and may provide valuable information that may be used in a positive way to increase awareness and gain support for BEB. The production of reports of this type is often a trivial task for a system administrator. Is there any reason that would prevent summary information of this kind being made available to registrants? If not, could some summary details be provided, please? ...(P)lease do not interpret ...(my queries) as meaning that I am negatively disposed towards the BEB BB. This is certainly not the case." Am I the only BB member interested in these kind of issues? Best wishes
GailJ from the deep South (of the globe), where the weather today reminds us that Winter is on its way.
Re: Some thoughts about the Bulletin Board
I have only been on the BB a short time and have found the support wonderful. I was welcomed with open arms. I do agree, however, that watching where the "chit chat" is posted would be useful. I only have a short time on the BB daily before my eyes go nuts and the headaches set in. Getting thru all of the info under a particular topic can take some time when there are other things discussed as well. I wish my eyes would hold out so that I could read everything but it's just not possible. I hope to attend the conference and meet each of you in person!
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