Re: August conference
Thanks Carol,
It's good information for all to have. I've only been to one conference but it was very worthwhile and I plan to continue going to them and would encourage anyone that can to attend.
Also, I know that I have difficulty reading and I'm sure that there are others with this same problem. I have to wait until my hubby can read the newsletter to me before I get the information. I glance over it but if I try to read the articles, my eyes close.Shirley in AR. where the sun is shining
Re: Reading a computer screen
Shirley,Isn't it strange how we have trouble reading (and watching TV is an ordeal worse than hot coals on the eyes--ok, maybe not that bad, but close), yet we can all read a computer screen? I've heard that people using a computer don't blink (which is why the drug companies are now marketing special eye drops for computer users). You'd think that would make our eyes dryer and aggravate the BEB, but maybe it somehow controls the blink reflex that messes us up in the first place. Any thoughts on this? Carol
Re: Reading a computer screen
I don't know how you look at your computer screen but I look at mine by looking down. I have my screen ajusted so that I don't have to look at it head on. I look out of the bottom slits of my eyes, if I had to open my eyes I could not read. I have more trouble typing my messages because of the movement of my hands even tho I am looking down. Watching TV is hard for me because our TV screen is above my eye level and I have to look up which makes it hard for me. I think also that when I am reading my computer screen I get very focused and that helps me read. It is hard to read a book even tho I am looking down, I don't know why. I do a lot of Bible studies and once I get into my "studying" I don't have a problem, maybe again it is a case of being so focused and you block everything else out. The same is true with my tole painting, once I get into it I am OK. I have had several weeks OF VERY BAD EYE DAYS and I could not do anything. Don't we just love the uncertainties of this eye disesase. Joyce from North Carolina where it is "MARCH MADNESS", I think most of you know what I am talking about - BASKETBALL!! It is BIG STUFF here in NC.
Re: Reading a computer screen
Joyce & Carol ... I think the key word is "focus." When my eyes were at their very worst, I could manage to read on the computer screen. Also at that time, I did a huge special project for the local school district that involved categorizing, alphabetizing, and filing THOUSANDS of index-sized book cards, plus preparing the books for shelving. This took several weeks and when I was working on the cards, my eyes were zeroed in on such a narrow field that I was able to accomplish this in what they thought was record time.This is such an odd disease in the ways it stymies us every now and then with different tricks! Sally in North Idaho
Re: Reading a computer screen
This is the 3rd time I have posted a reply..I hope this one works!!!! Well here goes again:I,like many of you, have little problem working on a computer. For me, that is a blessing because my job consists of staring at one 8-10 hours per day! The computer seems even to relax my eyes...but I don't blink much and probably do dry out my eyes. One thing I have done is screwed out the fluorescent light right over my computer. Also, I sometimes wear a baseball hat. That helps keep out the outside light and seems to work. I was going to suggest we all wear baseball caps (our favorite teams of course) to the BEB conference. I was looking forward to meeting you all, and would be very disappointed if you didn't show up because of the lighting. Hey we all blink, we can blink together! No need to be embarrassed in this group! I think it was Shirley who said looking up was easier for her eyes. I also find that if I look up as far as I can, kind of like stretching the eye muscles, it make my eyes feel better. As for watching TV...that is torture. My wife and I have a Friday tradition of watching a video after the kids go to bed...I find myself holding my lids open with my fingers...looks funny, but very effective! Well I am hoping to meet you all in Arizona! Please buy those caps! cheers
Andrew Karter
Andy
Re: Reading a computer screen
The ball cap is a great idea. I wear one outdoors and in the car often. Mine will have to be a TN Titans (Shirley will disown me, but it is something that goes against the rest of my other wise nonviolent personality...I'm out of the closet now...I love NFL football...I was conditioned since high school as a football cheerleader and been hooked ever since). Another idea is to find someone to make us some BEBRF caps as a fund raiser and sell them at the conference. Anybody know how we could do that??? The Blinking didn't embarrass me at the conference, I just couldn't see and my eyes hurt more than I've ever experienced. I couldn't even prop them open they clamped so tight and hurt so bad. July, August, Sept., Oct., and Nov. of 2000 were my worst months ever with BEB/Meige. Phyisically and emotionally I was a wreck and it was the darkest night of the soul I have ever experienced in my life. What Becca and Colleen described was "dejavue all over again" if you know what I mean? Thank God, I survived it and now things have improved. Looking forward to seeing you and everyone else in August, no matter how hot or wet it might be.
Re: Reading a computer screen
There are hundreds of places that will make up caps/T-shirts/whatever of your design, or help you select one. It would just be a matter of someone taking charge of it and ordering them, getting them to the conference and selling at a profit for the BEBRF fund-raising effort.I wear caps, but they just do not help in fluorescent lighting. I'm beginning to think that the poison in those lights goes through my skin or something. Anyway, no matter what I wear ... the light gets to me and causes MUCH discomfort. A am "allergic" to sunlight and am supposed to wear sunscreen, long sleeves, hats, etc., etc. to protect from that, so maybe there is something to f. lights having a poison. Stranger things have happened. Sally in North Idaho where it is sunny and breezy today.
Re: fluorescent lights
Sally, I agree with you 100%. It's not just the light, because my Meige symptoms are worse in fluorescent light and that wouldn't be caused just by the brightness. There's something about the wavelength or electrical make-up or whatever of those lights that brings out the worst of my symptoms.Virginia in AL, who is NOT a hat person, but might try it if that's what we agree on.
Re: fluorescent lights
My eye problems are of a different nature, but some lights are a big problem for me also. When we had our house built, the contractor put lots of small cannister type lights in the kitchen, family room and hallway, because he knew I needed extra light to be able to see. When electrical rates skyrocketed, my husband thought he would try florescent bulbs in order to save money. He has tried only two so far, but I've noticed when I turn the kitchen lights on, the one with the forescent bulb blinks on, and it hurts my eye. It's very strange.
Evelyn
Re: fluorescent lights
I agree also, my eyes and meige are much worse in fluorescent light. I have to ask my husband about the make-up of fluorescent light, perhaps he can explain it, since he served an apprenticeship as electrician once upon a time, before he did a million other things. But he is in bed already, so have to wait until tomorrow.Christel in Ca., who is also not a hat person, but will probably wear one if everybody else does.
Re: Reading a computer screen
Sally, you may have an idea regarding sale of caps for a fund-raising
effort. The fluorescent lighting is like poison to me as well. And
the bit of meige I have in my lower face does also act up in the lights.
I too will miss you if you decide not to come to the conference. I was
going to get a big hug from you because you were so compassionate about
the loss of my dog, Beaumont. By the way, I am a big advocate of visors. I started using one before I even knew I had blepharospasm--maybe it's psychological but it's a permanent part of my wardrobe--I must have at
least 20 by now. I am also faithful with my fl41 coatings, which I have
on 3 pairs of glasses. The lighting is difficult for me as well--sometimes I can deal with it but other times I cannot especially
when it is getting closer for a round of botox injections.
All that to say, I want to encourage you together with Delaine and the
rest of us who hope to attend. Sounds as if Virginia will go for it.
Joanne M. San Diego, CA
Re: Reading a computer screen
I definitely have trouble with the computer screen. I've set it on an old low printer table because I didn't want to buy one of those with the glass top where it sits under the desk and it helps. I've also toned down the background colors to grey and print to blue and increased the size of print and that helps, too. I've toned the glare down, but there are times it is still a hugh struggle to read the BB.
Re: Reading a computer screen
The PC is my sanity saver. I believe that different muscles are effected in different ways with different people. A year or so ago when my dad was in the hospital, I noticed that I could watch the ceiling mounted TV and had not been able to watch my own TV, floor model, at home. By having to look up, I was able to keep my eyes open. They would get tired and I would have to periodically close them but I could watch some TV this way. I have more trouble with looking down at a TV or across the room. When looking down to read, my eyes close. The computer screen is basically at eye level for me, looking straight ahead. With the font size blown up, and botox working and meds taken, I usually can work on the pc with minimal difficulty for a time. I am more focused, which I'm sure plays a part in it.
Whenever the doctor exams me, he always has me look up and I can usually do this for a longer period of time than when he asks me to look straight ahead or to the side. Looking downward causes closure fairly quickly.
I don't notice my eyes getting any dryer while on the computer than at other times. When the font size is small, I tend to squint to see it and then my eyes close. I would not be able to use a monitor that was in the desk and you had to look down at it.
Just another point that we all have varying symptoms with this.Shirley in AR.
Re: Reading a computer screen
I also do much better looking upward. When I have to face something important "head on," I find myself bowing my head and looking up. That seems to raise my eyelids enough to get by.Sally in North Idaho who went to a book review and signing by a local author and wore my dark glasses and cap with visor pulled down to the top of them, but still could not pay attention to the speaker because all I could think of was how much those blasted fluorescent lights hurt --- even with all the shades I had on. (How's this for a near-record length sign off??)
Re: Reading a computer screen
It just amazes me how alike and different we all are. I do terrible to look up (or straight ahead sometimes). That is why the conference drove me into the worst spasms ever last year. The ride up there started the worst spasms I've ever had and then those spot lights in the dark and looking up at speakers and screens were pure torture. That's why I wasn't as sociable as I would have liked to have been. (Also we didn't stay in hotel where conference was and I was dependent on Rusty to get me there and he is a night shift person.) Hopefully flying to get there and having better eye days and staying where the conference is will help this year. To watch TV, I have to recline all the way back in a recliner that directly faces the TV(people get in trouble if they get my seat), I can then watch through the slits of my eyes with my head back. I have to have light behind me, not beside or in front of me. I can go to those stadium seat movie theaters and sit on top row, prop my head back on wall and look down at the screen for certain movies and do ok.
Re: Reading a computer screen
Delaine, My eyes were closed through much of the conference while I was sitting and the speakers were talking. They would open when I got up and walked around and got out of that main room. The lighting was terrible at times. I didn't worry about it too much, though, as there were lots of people with closed eyes. And like you, the drive up there and back was very frustrating as my eyes were closed.
I've tried to do the movie thing a couple of times, even sat up front so that I could tilt my head down and look up but it didn't work. Too much movement and flickering lights. I couldn't even listen to it as I was trying so hard to get my eyes open. I haven't tried going in some time. We used to all love to go to the movies as a family. At first, I could talk my guys into going to the movies without me but they don't even go anymore.
Lighting behind me is also best for me. Our halogen lamp that points upward in our living room works well for me.
Re: Reading a computer screen
Shirley ... You just made me realize that it would be a waste of money for me to go to the conference. I had been hoping (although without much confidence) that someone would say the rooms were dim and there would be no spotlights nor fluorescent lights. I am in so much discomfort, and eventually pain, when in those conditions, that I cannot even attempt to concentrate on what is being said or shown.So I'll just count on the rest of you to post good highlights from the event. Sally in North Idaho who cannot go to movies either. TV-watching is a so-so project in which many variables have to be considered.
Re;Lighting at conference
Sally, I have no idea what the lighting will be like at our next conference. I know that they did dim the lights some at Kentucky. I don't know what kind of set up will be at Scottsdale. Please, don't give up yet. Lots of people wore their sunglasses and visors I know. They didn't have those directed lighting bulbs. I believe that it was mostly flourescent and they did dim them. They were consideratem, even with the laser pointers. I did have my eyes closed during much of the speakers talks but that would have happened to me know matter what the lighting.
Help me out here Joanne M, Alan, Delaine, Virginia. What do you guys remember about the lighting? I know that our state support group meetings have been much worse and like you experienced with "pain" just from the lighting and not being able to listen well. The conference was not nearly that bad. There were no spotlights.
We could also check with the sponsors or Mary at the BEBRF regarding the lighting situation.
Don't give up just yet.Shirley in AR.
Re: Re;Lighting at conference/Lynn Johnston
For me, the worst part of the one-and-only conference I attended, was the laser pointers that the doctors insisted on using! They were `real killer'!!!June in Toronto - beautiful day today - my eyes are still bad from the injections BUT I did get to an emergency meeting on the Lynn Johnston benefit for research for an hour today (husband drove me - he's a sweetheart!). Its definitely A GO for Lynn to appear in Toronto on Monday,May 14th - all hands on the wheel, etc, for the Toronto support group.
Re: Lighting at conference
I didn't have as much trouble as Shirley and Delaine seem to have had at the conference. I remember seeing the slides and listening to the speakers without much difficulty. Of course, I was wearing my FL41's. I do remember spending most of the dinner (while I wasn't eating or talking) looking at the floor. That was a long day, though, and my eyes were tired by then (no naps). I was amazed when Alan got up to dance, because exercise of any kind would shut my eyes. I think that I have altered my expectations and know what to expect from my eyes most of the time, so I wasn't disappointed. Since I started with Botox and my dry eye condition was resolved, I really don't have eye pain with BEB. One thing that bothers me most at things like that is lighting behind the speaker - and they didn't have that. Even if I had to keep my eyes closed the whole time, I would still consider it worthwhile. I can learn a lot from listening. And being able to meet and talk with other blephros was great. The Q&A sessions were good, too, as was the opportunity to speak with the doctors one on one. Another good thing for me was that my husband was with me and he learned a lot. I don't think he had the whole picture before that, even though he had spoken to my doctors and I had tried to educate him too. Didn't mean to run on. Maybe Lori will read our posts and see what she can do to make conditions better for us. Virginia in AL, hoping to see all of you at the conference in Aug.
Re: Lighting at conference
Last year, I made lots of comments on my evaluation form about lighting and slides and laser pointers as torture. At the Nashville meetings I will not let the speakers do slides and it works out great. I tell them they can do all the handouts they want, but we will not do slides. It is amazing that the doctors act like that it never occurred to them that would be torture for us, most seem glad to do it the way I ask. Only one fought me pretty hard but later said she liked the way the meeting was done. And the second doctor said it was the best BEB meeting he had ever attended of any kind. It was because we had our eyes open and could participate without being distracted by misery of clamped shut eyes.
Re: Lighting at conference
Is there anyone we can write to so that we can arrange in advance not to have slide presentations (or movies) or fluorescent lighting at the August conference? I have a feeling that the people who arrange these conferences are like the accomodation specialists someone mentioned about a month ago--they think that the problem is with out vision per se and that the more light, the better! Which of course only makes matters worse. They need to understand, somehow, that light sensitivity and BEB go together.One consolation: if I do go to the conference, I won't be the woman hiding in the back with the visor and the sunglasses. I'll see my double everywhere I look (when my eyes are open). Carol
Re: Lighting at conference
You got that right, Carol. We're all in the same boat--come, learn,
enjoy and see you there. Joanne M. San Diego, CA
Re: conference contact
Lori Howard is the BEBRF Arizona state rep. I'm sure she is involved with conference planning. She used to post on the BB, but haven't heard from her in quite a while. She was at the last conference (unless I'm confusing her with someone else). Her email address is:
Wldflwr4U@aol.comI'm sure that she wouldn't mind any of you expressing your concerns to her. There probably is a limit to what she can do (you know how those doctors can be), but at least she can pass on comments. Virginia in AL
Re: Re;Lighting at conference
In response to you, Shirley, I called Mary at the office before I attended the conference in Lexington to ask about the lighting and if
any special arrangements had been made for us due to our disorder.
She told me no, but that when we arrived, the lighting would be dimmed
or whatever to acccommodate us as best a possible. I actually thought
that a bit odd--that it could be arranged ahead of time but I figured
the office knew what they were doing! The florescent lighting was
dimmed during the scientific day on Sat. but I was bothered a
bit by the slides--especially the white behind them instead of a soft
blue or easier color to look at. I was sitting near Shirley and her
husband and I remember looking around with lots of us with eyes closed
and remember thinking these folks are just like me!!!I was one of those
with the visor and sunglasses. For the dinner and entertainment in the
evening in the same room, the lighting was brighter so had to do some shuteye every so often. I remember thinking why we didn't dim them
as they had during the day. But I would say generally speaking, that
I agree with Shirley--the lighting wasn't that bad. I encourage you
all to attend. It is well worthwhile. And as time draws closer, we'll
talk about it here and make an arrangement to meet at a time and place
at the conference so we can meet face to face!! It'll be great.
See you there. Joanne M. San Diego, CA
Re: Reading a computer screen
Sally when the patients and doctors had panel discussions and Q/A I did fine and meeting everyone still made the trip worth every penny despite the doctors presentations that I usually had to get up and leave. They gave us a notebook of all the lectures so please don't stay away. It is still a bargain and I really do want to see you. What about our family reunion??.....It won't be the same without you. And the awards show??? And the pajama party with chocolate for Dee(hopefully she will share)??
Delaine in TN who would be so disappointed if you didn't come.
Re: Reading a computer screen
this is sort of off the subject, but as far as computer screens go , i got a cable modem so i could use my phone as well as my computer, and my computer does not hurt my eyes as much. Waiting for that slow screen to download and watching it left my eyes in agony and this feeling of "jumping and a bumping", a computer term and a familiar feeling to some people who work on computers alot. I mean before it was really, really uncomfortable. the faster modem has greatly reduced this sensation. Has anyone else a similar experience, as far as previous discomfort and improved after getting a faster connection?
--modified by kathy at Fri, Mar 23, 2001, 14:26:34
Re: Reading a computer screen
Kathy,
We recently got DSL, which is the faster internet connection that you are talking about, but through the phone company. I was able to cancel my second phone line. It has primarily just decreased my frustration level with things going so slow and being bumped off the internet at inopportune times. It's great but is just becoming available and only in certain areas. It is offered by different phone companies and cable companies.Shirley in AR.
Re: Reading a computer screen
good then. iam glad it is helping you also. But do your eyes also not hurt as much when downloading a faster screen? mine are better than before.
Re: Reading a computer screen
Kathy, I have not noticed a difference in that. I would just get frustrated with the wait or getting disconnected all the time like Sally is going through right now.
The noise level in my home has also decreased. We have at least 3 computers networked together at any given time and before the faster internet service, my 17 year old would occasionally(actually quite often) voice his frustrations. I've often wondered how his room has managed to hold up over the years. He is a very gentle soul but give him a PC that doesn't perform the way it should and he turns into----well, he's a guy and I think you get the picture.Shirley in AR.
Re: Reading a computer screen
Re: Reading a computer screen
Spot lights in the dark and screens (presumably movie screens) at a BEB conference? What were they thinking? Is there anything we can do to remind the organizers of upcoming conferences that most BEB patients are light sensitive? It's hard enough to keep your eyes open as you listen to a speaker, but you can always close your eyes and hide behind dark glasses if there's no visual presentation. I hope someone with some sort of influence will read Delaine's message and prevent similar suffering in future. And no fluorescent lights, please!Carol P.S. If I've worded this badly and have stepped on anyone's toes, please forgive me. It just seems to me that there must be a better way of meeting the particular needs of the people most likely to be attending a BEB conference.
Re: Reading a computer screen
I can't look up. I don't know when I can do that successfully. I'm spasmed shut if I do. Even if it's slightly to look up at a person. Shut! However, on rare occasion I can glance up at the TV screen which is slightly above table level. But this is even short-lived.graceanne in port orchard
Re: LOOKING UP!
So I hope you are quite a tall lady, Grace Anne, and can look down on everybody - L0L! Seriously though, I know that feeling when my botox begins to wear off - I can only talk to people's shoes, never their face - funny thing is though, if at that time, I do aerobics, within minutes I can look up at the ceiling. When I stop exercising, back down go my eyes!June in Toronto, where the temperature is going up today - yeah - to 7 deg C and the sun is already shining
Re: LOOKING UP!
Tall? I'm 5'2". I use to be able to claim another 1/4" but can't anymore. It must be all that looking down that did it. The extreme light sensitivity doesn't help trying to look up either. Sometimes I wonder what really takes the lead - light sensitivity or BEB spasms. graceanne in port orchard where the sun is out brightly and my eyes are hurting already
Re: LOOKING UP!
Light sensitivity is waaaaay out front in causing discomfort for me. The spasms are relatively under control with Botox every eight weeks.Isn't it odd how some of us do better looking up, while others need to look down? We should make sure we pair up with ups/downs and then we can go hand-in-hand and see everything!! Sally in North Idaho who is sick of listening to locals moan and groan about the LONG winter! True, we had snow on the ground for the longest time in history, but it was the same darned old worn out snow! I feel cheated. Now I have to endure summer and listen to everyone singing the praises of sunlight and heat.
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