Guess I Should Slap Myself With a Wet Noodle!


Posted by June in Toronto (June Floyd,June in Toronto), Nov 26,2001,09:28   Archive
I guess I should slap myself with a wet noodle because I obviously have NOT DONE a good job in EDUCATING our Dystonia support group about BEB. (our beb group only meets about once per year, while the dystonia group meets monthly, more or less).

We had a pot-luck supper on Saturday, honouring 2 fine ladies who started and ran the dystonia group for about 10 years and are now stepping down. It was held at a sailing club and the drive there was very difficult for me as it was in the dark and, I don't know about others, but even as a passenger I have to cover up my eyes from the dang brake and traffic lights - I was already feeling nauseous when I arrived! When I walked in to the event I was faced with flashing Christmas lights on the wall, millions (at least it seemed like that!) of flickering candles and, of course, my eyes closed shut. The person running the event (she has torticollis - as most of them do and I seem to be the only one who attend events with beb) tried to be helpful but obviously she doesn't understand. I guess its "if you don't walk in my shoes"....and I guess I can't understand her pain either. I had spoken to her a week before though and told her I couldn't attend as she had said they were having `loads of candles for ambiance' - she said she would change that when she realised my problem. There were flashing lights on the outside of the windows as well, reflecting onto other windows, people taking flash photos, ....oh the evening was HELL (eyes shut down most of the time, and the pain...) - I was so shattered I spent the rest of the weekend in bed. MY POINT BEING, that I obviously have not shared sufficiently the beb experience with those at the dystonia support group - I thought I had, but now I have to choose not to attend these events in the future or educate them. I guess the latter is right, but I need time to regroup now. I felt so awkward being the only one with these problems and didn't want to `call the shots' for the evening either. Thanks to everybody for `listening' to me, I know you understand.

June in Toronto (beb/meige) who takes bilberry for light sensitivity but it doesn't help with extreme light conditions!




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by Sally - in - Idaho , Nov 26,2001,13:47 Top of Thread Archive
June,

I'm so sorry for your unpleasant evening when it could have been a happy night out! Sounds to me like the planners need the whop with the wet noodle.

As for educating, perhaps you could write out in simple, plain, everyday language just what the lights do to you (and others with BEB) and then give suggestions as to what lighting conditions would be tolerable for you. I can really empathize and light is deadly to me also. That seems to be difficult for people to understand. I'm always being asked if I have macular degeneration and then told about some little article someone has read about possible help for slowing it down. I appreciate the thought, but wish I could better explain what is really happening.

Sally in snowy North Idaho where my crab apple tree is right now filled with little black birds. They will all be staggering and falling off the branches soon!




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Dystonia Group Doesn't Understand About BEB

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- Sally - in - Idaho
Posted by June in Toronto (June Floyd,June in Toronto), Nov 26,2001,15:21 Top of Thread Archive
Thanks Sally for the reply and suggestions. If I can figure out how to do a certain kind of attachment on the computer I might try and send an explanation about sensitivity to lights and beb in general, to the person that does the newsletter. Perhaps he could put it in one as I know they are looking for news items. The Dytonia pamphlets describe beb, and I described the candle sensitivity to the person running the event (she even promised to not have them), so its strange that they had them and more...

June in Toronto (beb/meige) who hopes Sally's black birds won't hurt themselves if they fall off the tree!




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Re: Dystonia Group Doesn't Understand About BEB

Re : Dystonia Group Doesn't Understand About BEB --- June in Toronto
Posted by Dee in OR , Nov 26,2001,16:35 Top of Thread Archive
June,

I agree with Sally - sounds like they need to be whopped with a wet noodle - not you! Education is your best weapon and after you regroup, I think you should write something for the dystonia news letter. I'm so sorry you had such an unpleasant experience.

Dee in OR who also hopes Sally's black birds don't hurt themselves and who hopes Sally is feeling better.




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Re: Dystonia Group Doesn't Understand About BEB

Re : Re: Dystonia Group Doesn't Understand About BEB --- Dee in OR
Posted by Sally - in - Idaho , Nov 27,2001,20:45 Top of Thread Archive
Dee ... Maybe if I went out and got stoned on the fermented crab apples like the little birdies, the sciatic pain would be forgotten! A point to ponder.

Sally in North Idaho who appreciates your concern and is better.




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Re: Dystonia Group Doesn't Understand About BEB/sally

Re : Re: Dystonia Group Doesn't Understand About BEB --- Sally - in - Idaho
Posted by kathy , Nov 29,2001,03:31 Top of Thread Archive
sally you are really very funny! i am reading all this really very serious stuff and your descriptive interventions are helping me LOL!

--modified by kathy at Thu, Nov 29, 2001, 03:32:00




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Re: sciatic pain

Re : Re: Dystonia Group Doesn't Understand About BEB --- Sally - in - Idaho
Posted by kathy , Nov 30,2001,05:25 Top of Thread Archive
sally, what are they recommending for this in addition to the painkillers? heat, stretching exercises, hot baths, chiropractors, anything? the one i had years ago , i worked out with stretching. i am not that limber now but maybe some sort of physical therapy that way would help.



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Re: sciatic pain

Re : Re: sciatic pain --- kathy
Posted by Sally - in - Idaho , Nov 30,2001,15:14 Top of Thread Archive
Kathy ... So far the recommendations have been rest, heat and the pain pills (which I have been able to cut way down on as long as I stay off my feet). The doctor wants me to try therapy, but I don't know if that will be possible at this time.

Thanks for your concern.

Sally in North Idaho ... making a big pot of chili and cornbread to go with the snow flurries, which will turn to rain tonight ... then ice.




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Re: Corn Bread and Chili/Sally

Re : Re: sciatic pain --- Sally - in - Idaho
Posted by June in Toronto (June Floyd,June in Toronto), Nov 30,2001,17:01 Top of Thread Archive
Now that sounds just what the doctor ordered, Sally, yum, yum. Save me a cyber plate, I'll be over.

June in Toronto (beb/meige)




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Re: sciatic pain

Re : Re: sciatic pain --- Sally - in - Idaho
Posted by kathy , Dec 01,2001,04:43 Top of Thread Archive
how about even some gentle massage in the lower back and thigh and calf areas? someone in your family could do that. mine, when i had it , radiated all down that area.



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Re: Dystonia Group Doesn't Understand About BEB/june

Re : Dystonia Group Doesn't Understand About BEB --- June in Toronto
Posted by kathy , Nov 29,2001,03:34 Top of Thread Archive
i know how you do the attachment but i can't do it my self. you compress your article into a word file and send that as the attachment.



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by kathy , Nov 26,2001,17:31 Top of Thread Archive
what a nightmare!! you were very brave to go but the miscommunication was obvious or maybe they just didn't care; hard to believe but i cannot believe you went thru all that.



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by Kelly Saffell , Nov 26,2001,18:26 Top of Thread Archive
You poor thing! I know that my friends who don't have dystonia (or any health concerns for that matter) don't always listen to what I say or understand the severity of my condition. That I would expect. But you would expect people with any kind of dystonia to be sympathetic and to "believe" you. They should understand the quirky nature of the symptoms and get the concept of "triggers" even if they don't have beb. I'm sorry that in your quest to do something positive and to be a role model for others you ended up miserable. I think you should write a piece for the newsletter.

I also have trouble even being a passenger. We went to New Orleans to my grandfather's for Thanksgiving. Just getting out of Dallas was a nightmare. I spent most of the 9 hour trip with my eyes closed. The lights bother me some but the motion bothers me even more. Any motion makes my eyes close (bathing my kids when they were young and didn't know not to splash was a nightmare!). It makes me nauseous as well.

Kelly in Dallas (still in short sleeves but we are "supposed" to get sleet on Wed.)




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- Kelly Saffell
Posted by catherine pender , Nov 26,2001,19:23 Top of Thread Archive
Kelly

I have posted this info before but do not know if anyone has tried this or not. For travelling in the car (passenger or driver) I take children dosage of Gravol.. It is over the counter med. that we get in Canada. I don't know what they call in in the US but it is for motion sickness Maybe it is called Dramamine? I find it also helps with breathing problems. I find that sometimes when I am trying to keep my eyes open I have hold my breath. I also use it when I feel a bit anxious. It totally helps calm me and so I don't have to use as much lorazapam. The adult dosage puts me to sleep and the childrens is chewable. I keep them in my purse.

June.... have you tried this yet?




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- catherine pender
Posted by Kelly Saffell , Nov 26,2001,21:49 Top of Thread Archive
Thanks for the info, I'll have to try that. I keep childrens dramamine in my purse because my 6 year old get motion sickness and has thrown up both on the plane and in the car. I'll try it for myself next time!



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Re: Gravol/Catherine

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- catherine pender
Posted by June in Toronto (June Floyd,June in Toronto), Nov 27,2001,09:03 Top of Thread Archive
I mentioned on the outgoing trip to my husband that I should have taken a 15 mg Gravol - but didn't, so suffered. I have tried them, Catherine, they help, but I hadn't been out in a car when its dark for some time and had forgotten! I will now put them in my purse. Thanks for reminding me.

June inToronto (beb/meige)




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Re: Gravol/Catherine

Re : Re: Gravol/Catherine --- June in Toronto
Posted by Catherine Pender (catherine pender,Catherine Pender), Nov 27,2001,13:46 Top of Thread Archive
June
Glad to hear someone has tried them. I get relief for spazms too by taking the childrens dosage. If you need help sleeping at night take the adult dosage. My doctor told me that they are non habit forming so I try to take them once to ease up on the Lorazapm.
Try them for different sysmptoms. It really does work!

Catherine in Calgary, where it is about 10F, and lots of fluffy white stuff, and my little Chloe (pooch) not want to go out and freeze her little paws.




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by carol brown (Carol Brown,carol brown), Nov 27,2001,13:44 Top of Thread Archive
June, I am so sorry you had to go through that. You know, when I was diagnosed with beb/meige, I read up on everything I could get my hands on about dystonia -- every kind, so I would have a better understanding of it. There are some good phamphlets out there on beb/meige. Maybe you should hand them out if you ever go to this support group again. I think that sometimes people get so caught up in their own problems, they forget feelings of others.

Carol in Naselle where I'm due for shots on the 19th of December, but my eyes are starting to get weird on me already. Not only that, I have to renew my driver's license this year as my b'day is next month. I'd better hurry up and do it!




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- carol brown
Posted by June in Toronto (June Floyd,June in Toronto), Nov 27,2001,17:25 Top of Thread Archive
Carol, The Dystonia groups have their own pamphlets on ALL the dystonias including beb/meige. I have talked to most of the people that attend about beb, over the 5/6 years, that I have been going (I even spoke to them as a group once or twice) - it hasn't made any difference, obviously. I really feel its "if you don't walk in my shoes, etc." - although I hope I have a better understanding of their dystonias, mainly cervical torticollis and writer's cramp - perhaps I will see in the bebrf pamphlets are better and hand those out - thanks for the suggestion. Good luck with your Dec. 19th injections and with getting your driver's license (happy birthday in advance!

June in Toronto (beb/meige)




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- carol brown
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 29,2001,07:49 Top of Thread Archive
Carol I too have to have my drivers licence renewed the month of December. I had Botox injections this past Monday so I am hoping that in the next several days I will be able to go try for them. I only have to do the eye test and the road signs. When is your birthday? mine is December 19th. I enjoy my birthdays becauses I am thankful that I have made it another year. If I don't get my licence I will feel so defeated even tho I don't drive I still want to have that security in case I should have a really good day (after Botox) and could drive. (to Wal-Mart of course)

Joyce in NC - I am going to put up my Christmas tree today and clean my house. Anyone want to help?




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Re: Guess I Should Slap Myself With a Wet Noodle!/joyce

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- joyce whitt/NC
Posted by kathy , Nov 30,2001,05:29 Top of Thread Archive
everyone needs a picture id for identification purposes. i don't even think you can buy a plane ticket without one. too bad they take the worst pictures in the world!



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by grace anne , Nov 27,2001,16:59 Top of Thread Archive
Hi June, I don't post often nor get on here often cause it's so hard on my eyes. I understand everything you said. I've been there many times. This past Sunday we went to a Roarin' 20s dance and I had to wear my night darkening mask, eye patch on right eye, my FL-41 darkest glasses and wrap around dark glasses because I knew there would be pictures taken. People just don't know, and there were pictures taken. Somehow I could still tell when a flash went off. We go dancing reguarly on Saturday nights and something special like Halloween, many pictures are taken. The pain is horrible. It feels like the huge bright spotlights that criss-cross in the sky just hit my eyeballs right through all the glasses. It also feels like a welding torch smack in the middle of my eyeball. At one dance (not a special one) the band used one of those rotating different colored balls on the stage and my husband asked if he could please turn it off. He explained why and the band guy didn't want to because, as you mentioned, he got it for ambiance. I told my husband I'd like to put his ambiance right up his ambiass. He was really nasty about it, but someone must have convinced him cause he did turn it off. Maybe someone told him my husband was the newsletter editor for the club. Whatever it was.... Another time there were similiar lights on the stage where the band was playing and the band guy's girlfriend took our side saying there are people who go into siezures from those types of lights. Someone needs to educate the bands also. Fortunately, I have a couple of "guardian angels" at these dances cause when they spot someone with a camera, they hover around me, blocking out the area where the flash is going off. It helps, but let me tell you, it manages to ping my eyes. Even educating people, they forget so easily.
I tried to figure out which is worse: bright sun, bright hazy days, night headlights and tail lights, etc. The list goes on. I'm like you - as a passenger, I have my eyes closed almost the whole time. I've gotten lately where I can't stand light at all and I usually type things like this with my eyes closed.
SIDE NOTE: I know this is totally crazy, but while I'm here I thought I'd share it. I have to use a white cane to navigate, but I have this funny urge to walk into a driving school and ask to sign up for driving lessons - just to "see" what their reponse would be. Then carry it on a little further with discrimination if they won't. I know I wouldn't be able to carry it off, cause I'd bust out laughing too fast into the conversation.

graceanne in port orchard who is waiting for snow (:




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- grace anne
Posted by June in Toronto (June Floyd,June in Toronto), Nov 27,2001,17:33 Top of Thread Archive
Hi Grace Anne, I'm glad you understand where I was coming from - but sorry you have to experience so much pain with lights as well. In the car, as a passenger on short trips, I have to hold a large piece of cardboard in front of my eyes, as I can see lights through my lids otherwise - this cardboard helps as I can see sidways (where the lights aren't moving perhaps) which helps with the nausea problem. I loved your "put his ambiance right up his ambiass" - I got a huge chuckle out of that. Your side Note was great as well - go for it:-) Take care and thanks.

June in Toronto (beb/meige) who is still laughing at Grace Anne.




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by kathy , Dec 01,2001,05:28 Top of Thread Archive
i didn't know about the cardboard trick, somehow i think i am driving the car even when i am a passenger and feel i have to look out for everything. maybe i should make it easier on myself in such situations.



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Dec 01,2001,18:37 Top of Thread Archive
At least holding the cardboard in front of you allows you to look out to the side windows of the car, which helps with the motion nausea, but blocks the oncoming lights. For longer night-time trips I peg the cardboard to the visor so I don't have to hold onto it all the time - oh the tricks we have to use and the joy of this disease:-)

June in Toronto (beb/meige)




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by kathy , Dec 02,2001,06:18 Top of Thread Archive
as i said, thanks for the tip. does cardboard come in colors?



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Dec 03,2001,10:45 Top of Thread Archive
Yup

June in Toronto (beb/meige)




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- June in Toronto
Posted by kathy , Dec 05,2001,05:25 Top of Thread Archive
june, i had the opportunity to test your trick last night. actually a simple magazine can do this. do you actually get nauseous from the lights and movement when you are in a car? and when you were at that trying meeting that was so hard on your eyes?



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Re: Car Lights Etc.

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Dec 05,2001,08:22 Top of Thread Archive
Kathy, yes you are right a magazine will do the trick as well - I leave cardboard in the car so that I can also peg it up to the visor and not hold it for a longer trip - can't do that if a magazine is thick!

I get nauseous in the car sometimes from having to cover up my eyes because the lights hurt so much (brake lights, traffic and headlights) - the nauseous comes from the motion and not being able to see. Its a toss up between that and having the eyes slam shut and hurt like heck I guess! That particular evening, when I was going to the dystonia support group pot luck, it was particularly bad on the highways - stop and go traffic and brake lights flashing everywhere. I had to hold the cardboard really close to my eyes and that and the motion I was ready to throw...... Then when I arrived there was all those flashing lights used for decoration, candles and people taking flash photography - and, of course, then there was the return journey!. Anyway I'm over that now. I wrote the group a letter and said I would write a piece about `living with beb' for their newsletter - perhaps after Christmas, when things quieten down. We leave for Vancouver and Seattle next Wednesday for an 8-day trip. Take care.

June in Toronto (beb/meige)




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Re: Car Lights Etc.

Re : Re: Car Lights Etc. --- June in Toronto
Posted by kathy , Dec 05,2001,13:41 Top of Thread Archive
those are pretty awful reactions to the things you are sensitive to. i hope they will think about the letter you send them. have a safe trip!



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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- grace anne
Posted by Sally - in - Idaho , Nov 27,2001,20:38 Top of Thread Archive
Hi Grace Anne ...

Thanks for my laugh of the evening! When you go for your driving lessons, be sure to tell the photographer that you need to put a cardboard in front of your face for the picture.

Your sense of humor is a major asset to you.

Sally in North Idaho where it was a clear, gray day to begin with, and ended up sunny and pretty. Had to drive to Spokane and did okay. We are supposed to get slopped on tonight and tomorrow.




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Dystonia meetings & BEB

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- grace anne
Posted by Moderator-JB , Nov 28,2001,11:12 Top of Thread Archive
Grace Anne:

I'm sure both you and I could attest to the lack of knowledge in our nearest dystonia group meeting with regard to BEB. They do not understand what causes our problems. It's not because they haven't been educated either. I think it's more a case of 'since I don't experience it, I can't relate.'

Since I also have ST I know that they both are a pain in the backside, however, if you can't see where you are going or feel like someone is sticking an icepick in your eyes it limits your movement a lot more.

Just my opinion.

Judy (who ran outside this morning after the news said it had been snowing and found only rain :(




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Re: Guess I Should Slap Myself With a Wet Noodle!

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- grace anne
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Nov 29,2001,07:42 Top of Thread Archive
Graceanne you cracked me up. You really said it just perfect. I had my Botox injections this past Monday and my eyes are a little better but before injectins I could go out into the early morning sun and that was it for the day. My eyes shut down because of the sunlight. I have riden with my husband with either a newspaper in front of my face or if we didn't get it out of the newspaper box I would hold my husbands light jacket in front of my face.

I congratulate you on going out to dance even tho it hurts your eyes. We can't give up the fun things in life. Why do I subject my self to early morning sun? Food - food that I don't have to cook. We go out for breakfast on Friday or Saturday morning.

Joyce in NC where we will be in the 70's again today. I want some cooler weather. Not cold just cooler so it will seem more like Christsmas.




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Re: Guess I Should Slap Myself With a Wet Noodle!/graceanne

Re : Re: Guess I Should Slap Myself With a Wet Noodle! --- grace anne
Posted by kathy , Dec 01,2001,05:21 Top of Thread Archive
yes there have been several stories about especially rock musicians who have developed the sensitivy and almost seizures to the extreme lights they have at these events and on stage. there fellow musicians were really unsympathetic to this and regarded it as an excuse, they certainly do not know unless they have experinced the things you have described themseves.
also our fl41's were developed for among other things ,chidren with visual epilepsy which is brought on by exposure to bright lights, such as the sun and sometimes those flashing computer games. i myself am having more problems with light sensitivity and finding certain things will again set off my eyes into spasms that take a long time to get under control.



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