Another BEB patient?

Posted by June in Toronto (June Floyd,June in Toronto), Apr 04,2001,12:23   Archive
I went to the fitness club this week - not to exercise, as I haven't felt up to it for 2 months (will go back next week now my eyes aren't blurred anymore) - but to post flyers on our Lynn Johnston Dystonia Benefit Concert on May 14th. I also posted a `blurb' on Dystonia for information, with my name and telephone number. I had a lady phone me and we visited today for coffee - I believe she has beb (looks like it) but didn't know the first thing about. Its the usual story, she went to her GP, saw an opthalm. - neither diagnosed anything. She blinks, eyes close - mainly on one side though. I gave her lots of information, but tried not to overwhelm her - told her about bebrf and this bb. She's got info to read (and of course, the Lynn Johnston flyer!) -she's to phone me again if she wants a recommendation to a movement disorder neurologist, and more information.

Its so sad that she has beb - but I feel I was able to share with her - something I didn't have when I found out I had the disease/movement disorder!.

June in Toronto

Recommend Current pageAuthor Profile