How Bad Can Belpharospasm/Meige's Get? Thank You!!!
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Posted by: Ken Murray ®

01/09/2003, 09:10:30
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To say that I was overwhelmed by your responses to my question is an understatement - thank you to everyone for your information, sensitivity & concern. I have printed off all your comments and will forward them to my mother, Doreen, and follow up on your specific advice. She is having a particularly hard time of it right now and it really cheered her up when I read some of your thoughts out. And from all over the world too - isn't this technology thing just great!!

At the risk of being too sychophantic(!), thanks in particular to:

June for your welcome & comforting comments (I was working in London last month and the City skyline seems to be changing all the time)

Claire for the advice re. BEBRF and using the BB - will follow up (hope your eyes are better today - has it snowed in Macclesfield?)

Anita for BEBRF contact details - printed them all for posting

Mary for your thoughts on medication

Sally for your understanding - hope the fog has gone

Ann for sharing your thoughts and e-mail address - I'll pass it on, thank you

Kelly - your children sound wonderful (and so does the kilt - mine is Murray of Atholl...!)

Anyway, I'll keep dropping in from time to time (need to keep an eye on all of you too, you know!!) and will bring my mother on next time it's convenient (she lives 300 miles away, unfortunately). In the meantime, I hope that all af you are having a good day today and a belated Happy & Healthy New Year to all.

Ken







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Re: Thank You!!!
Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Ken Murray Top of Thread Archive
Posted by: June in Toronto ®

01/09/2003, 09:44:00
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You are more than welcome Ken. Belated, but well meant, Happy and a Peaceful New Year to you and your family. We look forward to hearing how Doreen is doing.

P.S. I don't think there's anywhere else but the skyline in London, U.K. to build anything - its so crowded there:-)

June in Toronto







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Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!!
Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Ken Murray Top of Thread Archive
Posted by: ClaireW ®

01/09/2003, 12:13:35
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Thanks for the thanks...we got snow here...yes! The boys had great fun on their tobogans. Eyes are a bit better today..thanks.

Just thought to put in link tothe BEBRF order form that I used. Hope you can access it...

I seem to remember reading somewhere that if you are "disabled" or "visually impaired" then there is help available..financially and educationally...to get you online. It may be a way to get your mother into "new technology". I can't for the life of me remember where I read it..but if I do then I'll post the info. maybe your local library would know?

Lots of love to you and your Mum.

Claire

http://www.blepharospasm.org/bebrf-pub.pdf







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Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!!
Re: Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- ClaireW Top of Thread Archive
Posted by: ClaireW ®

01/09/2003, 12:19:07
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http://www.abilitynet.org.uk/content/home.htm

Ken...I've found this link that may help to get your Mum online!

Sounds useful..I'm going to follow it up too!

Claire






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Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!!
Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Ken Murray Top of Thread Archive
Posted by: Anita Croce ®

01/09/2003, 12:33:20
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Ken,

I was pleased to see the interest that you had in your mother's disorder, since so often I hear from people who have absolutely no interest in their loved ones condition. Stating this, I might mention that those of us that have great support should count our blessings. I may mention that I have been dealing with blepharospasm, Meige's Syndrome since 1980.

I'm sure any questions that you or your mother might like to ask can be answered by those of us that have been coping with the disorder. At one time, we referred to it as a disease, but the reason BEBRF changed the wording to disorder was because people thought it might be contagious and of course it is not.

Besides using Botox, some of the doctors are using Myobloc which is the botulinum toxin B put out by Elan Pharmaceutical. I don't know if you can get it there in your country. It doesn't seem to last quite as long, but some have found that it may give them better results then what they receive from the Botox. I have used Botox, as well as Myobloc.

I would like to thank you and comment you for personally thanking each of us for our input and I hope that we hear from you again and

that your mother is doing better and having better days ahead. There is a light at the end of the tunnel and I hope her light shine brightly.

Best Wishes,

Anita Croce, North Central District Director, BEBRF







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Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!!
Re: Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Anita Croce Top of Thread Archive
Posted by: ClaireW ®

01/09/2003, 12:57:08
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Anita JFYI Myobloc is available over here!

BEBRF are so great...thank you for the wonderful work they do!

Claire






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Re: Disease/Disorder/Dis-Order
Re: Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Anita Croce Top of Thread Archive
Posted by: June in Toronto ®

01/09/2003, 13:59:19
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A very prestiguous doctor here in Toronto always refers to beb as a disease because, according to him, anything else takes away from the extent and complication of beb - he also believes the word `disease' should get him more funding for research rather than disorder! He suggested, at a support group meeting that we might use the word disease. Each to his own, as long as we get awareness out thre.

June in Toronto - F.Y.I. only







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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- June in Toronto Top of Thread Archive
Posted by: ClaireW ®

01/09/2003, 15:26:31
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I love the beauty of my mother tongue...although I understand why Anita prefers the use of disorder, the word disease, when broken down becomes dis-EASE! that is...NOT at EASE. That describes just how I feel!

Claire

Having said that I'm probably out of order too! Oh well!







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Re: Disease/Dis-Ease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- ClaireW Top of Thread Archive
Posted by: June in Toronto ®

01/09/2003, 17:07:48
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That's another way of looking at it Claire - neat (not as in tidy)!

June in Toronto

--modified by June in Toronto at Fri, Jan 10, 2003, 05:59:29






Modified by at Fri, Jan 10, 2003, 05:59:30

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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Dis-Ease/Disorder/Dis-Order -- June in Toronto Top of Thread Archive
Posted by: MaryNY ®

01/09/2003, 19:05:20
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I always say, "I have this condition......." Mary






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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- MaryNY Top of Thread Archive
Posted by: Ann Doyle ®

01/10/2003, 09:13:07
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I'm all for calling it a disease if it will attract more attention and therefore more money for researcy. Under my breath I call it something else . Ann Doyle






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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- June in Toronto Top of Thread Archive
Posted by: Alan Phair ®

01/10/2003, 12:55:50
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June, I tend to use the word disorder when talking with other people with BEB but I use disease when talking with neophytes. By calling it a disease, it does not minimize the problems I am having and they tend to understand that it is something that has a name and is valid. Disorder tends to assume that there is a problem but it is just something that is out of whack and will get better. Does that make any sense?...Alan






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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- Alan Phair Top of Thread Archive
Posted by: June in Toronto ®

01/10/2003, 14:36:19
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Yes it makes sense,alan, but I'm still calling it a disease - stubborn to the end:-)

June in Toronto where its very cold and snowing and blowing!







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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- June in Toronto Top of Thread Archive
Posted by: Jeannie Day ®

01/11/2003, 01:00:19
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We're sure getting a lot of mileage with definitions. Here goes:

DIS- EASE

DIS- ORDER

DIS- GUST

DIS- STUPID PROBLEM

From Jeannie who cannot sleep.







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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- Jeannie Day Top of Thread Archive
Posted by: Ann Doyle ®

01/11/2003, 08:50:59
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Jeannie, how about sick :-(*) Ann Doyle






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Re: Disease/Disorder/Dis-Order
Re: How Bad Can Belpharospasm/Meige's Get? Thank You!!! -- Ken Murray Top of Thread Archive
Posted by: Jeannie Day ®

01/11/2003, 19:51:15
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Ann,

DIS- SICK?

JEANNIE FROM OHIO







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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- Jeannie Day Top of Thread Archive
Posted by: Sally - in - Idaho ®

01/11/2003, 21:35:11
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How about just plain sick and tired of dealing with whatever it's called.

Sally in North Idaho







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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- Jeannie Day Top of Thread Archive
Posted by: Ann Doyle ®

01/12/2003, 07:24:48
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Dis is really sick. Ann D






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Re: Disease/Disorder/Dis-Order
Re: Re: Disease/Disorder/Dis-Order -- Ann Doyle Top of Thread Archive
Posted by: Jeannie Day ®

01/12/2003, 21:56:54
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Dis is de way we keep from crying. We use humor.

Jeannie from Ohio







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