Ft. Myers support meeting


Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Nov 19,2001,21:04   Archive
Dear Friends, Hubby Ed. and I attended the Ft. Myers Fl. support meeting run by Chuck Morse, and his wife Wilma, It was held at an Eye Center. About 25 or so were there.A slide presentation on "Dry Eyes" was shown and explained, I learned a few new things, I brought up the subject of the BEB bullitin board, and told those with computers they should read it.One woman made the comment that we all looked so normal, another said, that is becauce we get Botox injections.I was the only one there wearing a BEB T. shirt. There were several men there with BEB.
It was a good meeting. Edith in Fl.



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Re: Ft. Myers support meeting

Re : Ft. Myers support meeting --- Edith Nalepa
Posted by June in Toronto (June Floyd,June in Toronto), Nov 20,2001,14:56 Top of Thread Archive
Glad the support group meeting went well, Edith. Can you tell us about the "few new things" you learnt there, I'd be interested? Thanks.

June in Toronto where the day can't make up its mind whether to be cloudy or sunny and its much colder.




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Re: Ft. Myers support meeting

Re : Re: Ft. Myers support meeting --- June in Toronto
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Nov 20,2001,21:23 Top of Thread Archive
Yes June, I found my notes of the meeting, a few things I did not know, the rest of you may know already.Some causes for dry eyes, Age,Hormornal changes, Medications, such as antihistamines, we may be creating our dry eyes.Some have used flax seed oil capsules, they help some.He spoke of a preservative eye drop that becomes non preservative as it is being used, and not burning the eye.I did not hear him use a brand name for it.He said that those of us with cataracts should not wait until they are "ripe" as this makes them more difficult for the Dr. to remove.I think that is about it.Edith in Fl, wishing you all a Happy Thanksgiving.



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Re: Ft. Myers support meeting

Re : Re: Ft. Myers support meeting --- Edith Nalepa
Posted by June in Toronto (June Floyd,June in Toronto), Nov 21,2001,07:54 Top of Thread Archive
Thanks Edith for replying. I think the preservative, that is ok for us to use, in the small bottles is Purite. When Purite hits light (as in when we squeeze it into our eyes) it becomes salt water, and that's fine. Its found in the Allergan Refresh Tears and perhaps in Gen-Teal. All of the bottles need a preservative of some kind - the individual eye-drop containers don't need preservatives. That's how I understand it anyway.

June in Toronto (beb/meige)




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Re: Ft. Myers support meeting/ june

Re : Re: Ft. Myers support meeting --- June in Toronto
Posted by kathy , Nov 23,2001,16:10 Top of Thread Archive
well you seem to know something about this. i followed your suggestion when my eyes were in acute spasm and light sensitivity and used the eye lubricants at night and everything still was terrible. could these lubricants make your eyes more sensitive to bright harsh light? because those were the conditions i was facing each day, along with wind and extremely dry weather. i am okay right now as we are getting rain and the sun is under the clouds, thank god!



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Re: Light Sensitivity/Lubricants

Re : Re: Ft. Myers support meeting/ june --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Nov 23,2001,17:31 Top of Thread Archive
Kathy, I don't think (?) the eye drops/creams have anything to do with light sensitivity. The drops/creams simply lubricate your eyes from wind and dry weather and the drying effects of botox and/or beb (can't remember what came first beb or light sensitivity!). They are a must in trying to prevent further damage to your eyes, i.e. glaucoma. For eye nutrients I take a bilberry tincture that I get from a naturopath. I've discussed bilberry before but....I believe it helps me with light sensitivity. (It has been used for a thousand years or more and was given, for example, to WW2 pilots to help with the flashing of bombs and their recovery rate.) I've come off bilberry (thinking it might be a placebo) a few times and each time found my eyes more sensitive to lights again. For the first 2 years I had beb I couldn't be in the same room as a tv or computer - now I can and I can also go to the movies (not the flashing kind). I still wear a brimmed hat or visor and dark wrap around sunglasses outside, have a tinted film on my sunny windows at home, so am still sensitive - its certainly not a cure. I hope this information explains somewhat.

June in Toronto (beb/meige)




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Re: Light Sensitivity/Lubricants

Re : Re: Light Sensitivity/Lubricants --- June in Toronto
Posted by marie berger , Nov 26,2001,08:08 Top of Thread Archive
Hi June, How do you administer the Bilberry tincture .. orally or topically? I presume it would be available in a Natural Foods store. Thanks,
Marie in sunny Florida where the sun makes it difficult to enjoy the outdoors.



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Re: Light Sensitivity/Lubricants

Re : Re: Light Sensitivity/Lubricants --- marie berger
Posted by June in Toronto (June Floyd,June in Toronto), Nov 26,2001,09:03 Top of Thread Archive
I take the bilberry tincture orally - 3 times per day with a little water, before meals. I know you can get various forms of bilberry (liquid, capsules, etc.) at health food stores, but I don't know about the quality, I rely of the naturopath for that.

June in Toronto (beb/meige), where its a dull but mild day.




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Re: Light Sensitivity/Lubricants

Re : Re: Light Sensitivity/Lubricants --- June in Toronto
Posted by kathy , Nov 26,2001,17:38 Top of Thread Archive
thanks for this info; light sensitivity was my nemesis this time and sent my eyes into spasms more times than i care to remember. perhaps i'll have to explore this bilberry thing. injections tomorrow.



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Re: Ft. Myers support meeting

Re : Ft. Myers support meeting --- Edith Nalepa
Posted by marie berger , Nov 22,2001,22:59 Top of Thread Archive
Hi Edith,
I haven't been able to "lurk" lately, but I saw your message about the Fort Myers Meeting. I live in Port Charlotte and would like to know more about where and when these meetings are held. I can no longer drive and my husband would have to take me, but I would like to meet some other Blephs in this area. Thanks and Happy Thanksgiving.

Marie, full and satisfied after family and turkey




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Re: Ft. Myers support meeting

Re : Ft. Myers support meeting --- Edith Nalepa
Posted by kathy , Nov 23,2001,16:05 Top of Thread Archive
thanks for being so informative edith! the dry eye info is interesting , wish we knew the name of the eyedrops. SO there are some men there also with beb? how come none of them ever post ? we need more male input on this disorder, i think.



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