Re: New support group at yahoo
Thanks for the link Dee. I know I'm not particularly computer savy, and also can't look at a moving screen which makes things difficult - BUT it took me an hour to finally sign in to Yahoo and then I got stuck on the alternate e-mail address so that I can't access the beb support group. I only have ONE e-mail address so don't know what to do. They sent me a verification e-mail so I replied to that asking for help - hope they do - any ideas?June in Toronto (beb/meige) where it very cold but no snow left ont he streets and roads - its also past midnight and I should be asleep!
Re: New support group at yahoo
June, It took me about a hour also and a few not so good words.
for my alternate e mail i used my same one i use on this board
I still cant get on their bb. Need Help
Colleen in IL Where it got 60 today
Re: New support group at yahoo
Colleen, I'm having all the same problems you and June are having.
Makes me feel a little less stupid. I guess I have to call Dee so she can walk me through it.Christel in Ca.
Re: New support group at yahoo/Christel
If you do phone Dee and find out how to do this - PLEASE let us know on the bb. I'm wondering, in my case, if I have to obtain a Yahoo e-mail account (so they can end me all that junk!). Can you ask Dee that svp. thanks.June in Toronto (beb/meige)
Re: New support group at yahoo/Christel
June, will do. I've been wondering the same thing, I don't need anymore junk either, that's for sure.Christel in Ca (beb/meige)
Re: New support group at yahoo
dee, do you think it odd that blephRo is not even spelled right? how did you find this group?
Re: New support group at yahoo
My friend started it. I mentioned that to him and he said "blepho" is easier to pronounce!Dee in OR
Re: New support group at yahoo
does he have beb as well? what is different about it from this one? can you explain a little about it?
Re: They Won't Let Me In Dee???
I tried about another hour today to get in - supplied them with a 2nd e-mail (one that I don't really use) and even that wasn't accepted for some reason. When I added the 2nd e-mail address, at their request, their registration form was completely messed up (I had already completed it correctly and it was accepted). I don't now what's happening. They haven't answered my e-mail asking for help. HELP!Do they want us to get a Yahoo e-mail address perhaps????? June in Toronto (beb/meige)
Re: They Won't Let Me In Dee???
June,I don't know what the problem is. I am checking on it and will get back to you. E-mail me if you want and maybe I can walk you through it? Dee in OR
YAHOO/BEB
I managed to get in, but it looks like they have a VERY inexperienced crew who don't know what they are doing. Choosing a name that people can't find with a search engine is beyond belief. I don't care if "blefoes" seems easier to pronounce (don't they do 'r's?) there is a correct, widely known, name for BEB, and only one spelling, and the name they chose is invisible, not to mention inexcusable. Hey - maybe they should have chosen "BlefWoes". That, at least, describes us. --- Lynn
Re: YAHOO/BEB
Lynn, I have to agree with you, but I like "BlefWoes", very clever.
Since you managed to get in, perhaps you can explain it to the rest of us.Christel in Ca.
Re: YAHOO/BEB/LYNN
Lynn,Nobody is perfect! If you can do it better, be my guest! Dee in OR
--modified by Dee in OR at Thu, Jan 10, 2002, 13:52:30
Re: YAHOO/BEB
Lynn, I agree with you. I had no trouble getting in, but I got out just as easily. I am happy with the support group here and with its association with the BEBRF.Virginia in AL
Re: YAHOO/BEB
Dear Lynn "BlefWoes" - well said. I agree about the R being left out - we all know that the A is silent (I think we all know) and can't see why they don't pronounce/spell it correctly. I think I'm expected to get a Yahoo e-mail account, as they have accepted my ID and password, then it closes up! Oh well, seems I'm not missing much at this point in time.June in Toronto (beb/meige)
--modified by June in Toronto at Thu, Jan 10, 2002, 16:23:13
Re: New support group at yahoo
Someone must have suggested they change their site description - I just got"Oops...
There is no group called blephos. " from the site. --- Lynn
Re: New support group at yahoo/EVERYONE PLEASE READ
Ok, it is now called "blephros" and I'm not sure why everyone is having problems but I think it is fixed now. Also, you do not need to get a yahoo address, I just suggested that because when someone posts at this site, it goes out to everyone who signed up. So I like to keep those e-mails separate from my personal e-mails so that's why I got a yahoo address. Also, I've been feeling a little guilty because this group was started by Phil, who was banned from our BB and the dystonia BB. But he really needs support and he has never done anything inappropriate with me, so I still think he should be forgiven. How long do "we" have the right to ostracize him? He is one of us and he NEEDS OUR SUPPORT. You know, the BEB cookbook was Phil's idea and he didn't get any credit for it. Do you think Mattie Lou would ostracize someone who needs our support. Ok, so he made a mistake, how long does he have to pay for it? How would you all feel if you were banned from posting here? Where would you go for support? So many of you "God bless" each other - well, where are all your blessings now for someone who really needs us? He could have logged in under a different name and a new password, but Phil chose to take his punishment and not deceive anyone. I think it is time to stop passing judgement and start forgiving. Dee in OR
--modified by Dee in OR at Thu, Jan 10, 2002, 13:46:47
Re: New support group at yahoo
I'm fairly new to the bulletin board and completely in the dark. I can't imagine how you could be banned from a support oriented bulletin board. I don't even read the dystonia board because I can only physically handle one thing and this is where I get the best support and info. I wish him luck but sounds like the best thing would be for him to be allowed to "come back to us."
Kelly
--modified by Kelly Saffell at Thu, Jan 10, 2002, 14:10:58
Re: New support group at yahoo/EVERYONE PLEASE READ
DeeI was always wondering what happened to Phil. I really didn't know what had happened that he was kicked of the beb. To me he was a very nice man. He did contribute a lot to this site. He encouraged everyone to write in to Oprah on a certain day to get the word out about our blepharospasm. We all tried but unfortunately Oprah never responded.
He provided us with Oprah website.
Tell him I wish him well. Blephos didn't bother me at all.
I hope all goes well with this website.
I'll try to get on
Priscilla
Re: New support group at yahoo/EVERYONE PLEASE READ
Dee, I have NO PROBLEM with Phil - sorry can't remember who he is or when he posted. And I'm glad he has formed this new group. Now....if ONLY I could get in - they won't accept my alternative e-mail address (a legitimate one) - they did accept my ID and password (after an hour of trying!), now what? Thanks Dee and I'm sure most people don't hold a grudge because they don't know what Phil did even! He is to be complimented on his cookbook idea.June in Toronto (beb/meige)
Re: New support group at yahoo/EVERYONE PLEASE READ
If I recall correctly Phil called himself Uncle Phil. All I know is that he sent E mails directly to some people on the board and got pretty religous at times. I had no problem with him but maybe Judy could reply to this oneCatherine
Re: New support group at yahoo/EVERYONE PLEASE READ
Dee, I'm with you. I think Phil has been banned long enough, let him come back.Christel in CA.
Re: New support group at yahoo/I FINALLY Got In!
I don't know what I did that was different but it took about 5 hours (total) to join the new Yahoo Blepharo group - I guess I'm persistent! Maybe its because I'm so used to this bb format that I prefer it. Phil should be allowed to come back here and we only need the one support group don't you think? I do remember him posting now as Uncle Phil.June in Toronto (beb/meige)
Re: New support group at yahoo/I FINALLY Got In!
That's right June - Uncle Phil. And some people were offended by that! They said that only perverts and sex offenders call themselves "Uncle".Dee in OR
Re: Agree to Disagree
Hi Dee,
It's pesky me again.
I'd just like to make a couple of points.
The cookbook idea had been raised before Phil ever said anything about it. It has been brought up before but I think that there wasn't enough interest in it. He did push it but if I remember correctly tried to go around the BEBRF to get it done. He wanted everyone to email him personally with all the information.
He can read the bb anytime he chooses. There are 100s of people with BEB out there that read the bb and never post.
He can gain support also by personally emailing friends. He was on the bb long enough to have gathered a number of email addresses.I'm sure that much thought went into the decision to ban him from posting on our bulletin board and the dystonia bulletin board. I don't believe that it was a rash decision and certainly not made by one person alone. There have only been a couple of people that have been banned and I believe that there was probably plenty of reason to justify the decision. Shirley in Arkansas who probably won't be popular for speaking her mind again.
Re: Agree to Disagree
Hi, Shirley Speak your mind all you want just good to have you back
Sorry about your mom and dad. I did all of that for my mom& dad and my inlaws for 25 years.I really believe that all the stress caused a big part of my condtion.
Take Care Colleen ib IL
Re: Agree to Disagree/shirley and dee
will someone please say or give an outline as to why this other group is different? do they talk about different things? how many are on it? are there some blephros we have never heard from on it?
Re: Agree to Disagree/KATHY
Kathy,If you will e-mail me I will explain these things to you. Don't want to take up more BB space to do it. Dee in OR
Re: Agree to Disagree/KATHY
i'll have to think about this dee. maybe you could tell him that everyone worked really hard on the cookbook.
Re: Agree to Disagree
Hi Shirley,Welcome back and I disagree with you! How long does a person have to pay for his mistakes? I don't know the whole story but I do know that one person who complained the loudest no longer posts here. I think her family didn't want her to. So why not ask the ones that he supposedly offended and hear what they have to say? Dee in OR
NICE TO HEAR FROM YOU SHIRLEY
ShirleyI am so glad to hear from you again. I know you were having a hard time and I have been away for a while so I didn't know how you were doing lately. Hopely things have settled down for you. I anxiously await replies from you because they are so full of spirit, no matter what the topic. This one is definately hot! I was wondering if you ever talked with Dr Anderson after your surgery about some of the problems you had. I am still dealing with the cornea cold sore. I have been taking a steroid and tried stopping for 4 days. It was right back. I am going to see this specialist again next Friday. In the newsletter one of the questions was about steroids causing glucoma so I am not quite so quick to take it again. I am trying some homeopathic meds. for now. Stay well Catherine in Calgary where we are having a Chinook.
ps. Why doesn't the spellcheck work?
Re: Catherine/post-op myectomy symptoms
Hi Catherine,
You had asked about whether I had talked to Dr. A about the problems that I was having. I did talk with him at the conference in August but haven't since then. It's been about 8 months since my upper myectomy. I am still having some excess tearing but it is much better than it was. Some days it is very slight and other days I still have a problem with it. He had said that it might take up to a year to straighten out. I wish now that we hadn't done the upper punctal occlusion ( cauterizing the upper tear ducts so that the tears don't drain out as quickly).
I also had a little swollen area on my right upper lid but it went away fairly quickly.
The forehead itching happens only occasionally, now.
I don't have squeezing from my upper lids but my forehead and lower lids can still close me down and does. I've had four sets of botox since my myectomy. The first two didn't work real well due to the swelling around my eyes. The third set was by a different doctor here locally and he did a really lousy job. I just had the last set of injections a few days ago by yet another doctor and am waiting to see how they do.
I still have an apraxia problem. It is better since the surgery but not as much as I had hoped for. My brain simply tells my eyes to close while I am telling them to open. Sometimes, the harder I try to open them the tighter they close. It's very frustrating.Sorry to hear that you are still battling your cornea problem. Hope that they can figure it out and get it cleared up. I'm sure it can be very painful. Take care
Shirley in Arkansas
Re: Shirley/post-op myectomy symptoms
I was wondering, Shirley, is Apraxia always connected with BEB or can you get it without suffering from any form of focal dystonia?
Sorry, your surgery didn't take care of that problem.Christel in Ca. still trying to wake up.
Re: Shirley/post-op myectomy symptoms
Hi Christel,
I'm not familiar with apraxia of lid opening except with BEB. I would think that it could happen. It would also be a symptom of or associated with Myasthenia gravis. You have a great weakness in your eyelids with it followed by muscular weakness in other parts of the body. This is usually the first symptom of it.
I can't think of any other disorders that it might be associated with besides a stroke which would usually be one sided.Shirley in Arkansas
Re: Shirley/post-op myectomy symptoms
Thanks, Shirley, for your reply. When I first progressed to the point where my eyes slammed shut for longer periods of time I kept remembering Onassis. Years ago, must have been in the 60s or 70s there was talk about Onassis needing match sticks to keep his eyes open. It was told in a joking manner, as I recall, though I'm sure it wasn't a joke to him. I don't know if anyone else remembers this, you older folks might. I've been wondering for a long time now whether he might have had the blephs, though in those days he wouldn't have found a diagnosis.
If someone that rich and powerful had blepharospasm now, it would become a household word.Christel in Ca.
Re: Onassis & Match Sticks
I don't remember talk about beb and Onassis, Christel - but haven't the Brits manufactured an eye pick-type prop to keep the eyelids open? I've never heard of anyone reporting using them though. You are right that we need someone rich and famous to have this disease and be our headliner.June in Toronto (beb/meige) where it didn't snow yesterday after all - pavements are wet.
Re: Shirley/post-op myectomy symptoms
I remember (I think) that he always looked "tired" and that he had really baggy upper lids. Had that "sleepy" look. I don't remember any talk of "match sticks" though. But I was very, very young then. :-)Shirley in Arkansas
Re: Shirley/post-op myectomy symptoms
Shirley, you were not included in "you older folks". :-)Christel in Ca.
Re: Shirley/post-op myectomy symptoms
Hi Christel,I qualify as "older folks!" Didn't Onassis have myasthenia gravis (or whatever that is)? It seems to me that a diagnosis was given for his droopy eyes, but definitely not BEB. We're kind of ghoulish the way we hope for someone famous to get this horrid disorder/disease/condition so that it will gain recognition! But that seems to be what it takes. Sally in North Idaho
Re: Shirley/myasthenia gravis
i thought the myasthenia was where you couldn't close your eyes all the way ever, and beb was when you couldn't open them. i do remember seeing something on this on t.v. and it was also extremely painful and debilitating for him. the 2 disorders however seem to be closely related in many ways, especially with the weakness in other parts of the body as in meige. muscle weakness or tenseness, is that the difference?
--modified by kathy at Wed, Jan 16, 2002, 06:01:42
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