new to this


Posted by Kelley , Apr 24,2002,22:19   Archive
hi--just wanted to get some feed back from those of you living with blepharospasms. my mom was just diagnosed with this and has had one treatment of botox injections--she has been going through a very difficult period. she is so depressed and stressed. this has really hit hard -for her and the family.. i am trying to be positive with her but fear i am not doing a good job--please give me some feed back so i can pass it along to her. we need all the help we can get at this point. any helpful hints as to how to cope would be helpful. this is all new to us so we are searching for some answers/information...thanks and i hope to hear from some of you soon ----kelley

ps...just curious as to one thing..
my mom suffered from terribly teary eyes for years and eventually had tear duct surgery to correct the problem. I've seen some information stating that some BEB begins with very dry eyes. Has anyone ever made a connection between the now "post tear duct surgery" dry eyes and the beginnings of BEB?




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Re: new to this

Re : new to this --- Kelley
Posted by Shirley-Arkansas-USA , Apr 25,2002,10:49 Top of Thread Archive
Hi Kelly and welcome to the bulletin board. It is very nice of you to try to get information to help your mom out. If you haven't already contacted the BEB research foundation, you should do that and have them send you some information. Find a support group in her area, if there is one and make sure that she is seeing a doctor that is very knowledgeable about BEB.
Up at the top of the bulletin board page is "Main Pages". Click on that and there is information regarding BEB. Read as many posts as you can on this bulletin board-some will be fluff, with us just having a good time and others will be very informative. Is your mom close by that you could read her some posts off the bb or can she use the computer? This disorder can make you feel very alone and isolated and is indeed depressing. She does need a support system and needs to know as much about Blepharospasm as possible. If I hadn't found this bulletin board, I would have thought that I was going crazy as my symptoms were so strange to me and I had never heard of Blepharospasm and the doctors didn't seem to know much either.

Ask whatever questions or concerns that you have and we'll try to answer.

Frequently BEB does start with dry eyes. Her surgery may or may not be related to the onset of her BEB. She should be using preservative-free eyedrops during the day and an eye ointment at night if she is experiencing dry eyes.

Shirley in Arkansas with BEB/Apraxia




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Re: new to this

Re : new to this --- Kelley
Posted by June in Toronto (June Floyd,June in Toronto), Apr 25,2002,10:58 Top of Thread Archive
Welcome to the bb, Kelley. How good of you to check us out for your mother - sorry to hear she has this disease, but you've come to the right place for information and caring and sharing.

Your mother needs to work on her stress levels because stress aggrevates any medical condition - easier said than done I know. For me, curling up with a good book was great, but I can't read one now, just short articles at a time, but there are talking books. She should also try eye rest breaks during the day - covering them up with a warm cloth, perhaps, or a night blind - after putting in some good preservative-free drops. Listening to some pleasant music during this time, helps, or just a nap on occasion. Keep posting and let us know how your mother is doing.

June in Toronto (beb/meige)




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Re: new to this

Re : new to this --- Kelley
Posted by Lynn Yarbrough , Apr 25,2002,11:27 Top of Thread Archive
Hi Kelley, and your Mom,

Welcome to the BEB forum. We are all sorry that you Mom has the condition, and want to make you feel welcome here.

What you have been told about stress is very important. While the condition is bad enough, if you let stress build it gets much worse. On the other hand, she may be able to help herself a lot by getting the day-by-day stress under control. And yes, the whole experience is stressful, so it's a pain in the neck!

The second thing I need to say is how inportant SUPPORT is! Find a support group if you can, and get involved.

Cheers!

--- Lynn




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Re: new to this

Re : new to this --- Kelley
Posted by Kelly Saffell , Apr 25,2002,14:16 Top of Thread Archive
Hi Kelley and welcome to the board to both you and your mother. I'm sorry she is dealing with this-it is not easy. I would agree that stress is a huge factor. I have changed my lifestyle completely over the last several years. I no longer work as a CPA, drive only short distances when needed, and just focus on taking care of my girls, almost 7 and 4. I don't suffer from dry eyes anymore but I know I am amongst the minority there. I would encourage your mom to join the foundation so she can get the newsletters and find out about any support groups in your area. I just began the support group here in Dallas. It takes a while to get the correct dosage and injection sites so be patient and try not to get discouraged. And when you do, come here because we understand.
Kelly in Dallas
You will find my story at www.planostar.com about half way down the page.



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Re: new to this

Re : new to this --- Kelley
Posted by Pippa , Apr 25,2002,15:57 Top of Thread Archive
Hi Kelly, from Scotland, UK. Welcome to the Bulletin Board. As you can see we Blephs are all over the world and have banded together here for support. I was diagnosed just in December with blepharospasm, so I can remember my feelings very well. I needed this support group! If you can get your mother able to communicate with us on the this Bulletin Board it will maybe be the biggest single factor in helping her. Apart from the moral support, the questions and answers and advice, it is the knowing that there are people out there exactly the same as we are. Well, we are all different but experience the same odd symptoms, and also of the fear, anger, humiliation and distress this BEB can cause. And we help each other by our empathetic support, and especially by a good deal of laughter!
As for the teary eyes...I believe, although I am no medical expert, that dry eyes can often be shown by having teary eyes, strange as that may sound. The tearfilm is made up of three different, and differing, layers. ie each layer is made up of something different, and each is esssential for healthy eyes. i think when one of them is missing the other two work overtime to keep the eye moist. I didn't have teary eyes but i did have dry eyes and so also had a silicone plug inserted into my one of the two puncta (like drainage holes) in the eye. this was to block it up so that the rate of tears getting washed away down the other one every time I blinked was lessened.
I can no longer drive or walk outside for any distance on my own. I have a dog, which makes me go out though, and i have bought myself a long stick. Not for support but for "sweeping" or "seeing" the ground in front of me when my i can only see out of the bottom of my eyes. It also warns people when i stop walking suddenly that i do have a problem and am not being plain awkward!
I didn't want to go out at first as i didn't want people to see me with the spasms and i felt/feel so vulnerable at times.
But my husband insisted i did go out socially with him, and to not hide myself away. it was excellent advice, although i did not think so at the time. I always need someone with me though when shopping.
Perhaps if your Mum can't use the computer you could ask her to write down her questions and you could type them in and then print off some of the things we reply...?
Anyway, if you keep reading the Bulletin Board you will keep finding things to help her here every day. I find also eye ointment or gels every hour and lots of plain water helps me too if i have had some bad days. My consultant also recommended swimming and saunas. (Both good for moisture and morale!)
Good Luck, and tell your mother she is fortunate to have such a caring daughter!
Pippa, from bonny Scotland at Bluebell time.



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Re: new to this/pippa

Re : Re: new to this --- Pippa
Posted by Kelly Saffell , Apr 25,2002,16:17 Top of Thread Archive
While I've been a regular here for over a year, lately I've been out of touch with the board and somehow missed that you were from Scotland. My grandfather and aunt are researching our family tree and we are from Scotland originally. They visited there last year and are going again this summer for even longer. My grandfather actually bought the "Scott" (my mother's maiden name) plaid and my mom made skirts for herself, my sister, me and my daughters and my nephew a vest. We had a generation picture made at Christmas when we were all together (we cover 3 states) in our Scottish "Scott plaid" clothes.

Kelly in Dallas




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Re: new to this/pippa

Re : Re: new to this/pippa --- Kelly Saffell
Posted by debbie campbell , Apr 25,2002,17:38 Top of Thread Archive
Hello Kelly,
Welcome to the BB. You will certainly find a wealth of information on the BB so read as many of the posting as you can. I was just diagnosed in January and it was pretty shocking for me to hear I had beb. I remember the feeling well and did a lot of crying. At first I didn't know where to turn for support and sort of wallowed in self pity for a few months. It is so hard for family and friends to understand what you are going through to try and find the support and understanding you need. Then I decided it was time to get a grip of this and found the Dystonia web site which lead me right to this BB and it was a real life saver for me just knowing their were others who knew exactly what I was going through and how I felt. My first big discovery was that eyes drop regularly through the day was a must since the botox drys the eyes, as well as the ointment at night and eye mask for sleeping. I hadn't realized the importance. This has help me considerable. I have had my second set of injections and this go around it seems to be going quite well. My eyes have been open for almost 4 weeks now and I am still driving! I hope it lasts. I concur with everyones comments on reducing the stress as being very much a factor in how your eyes are reacting. I know this is not an easy thing to change.
I hope all goes well for your mother and wonderful of you to find help her find some answers. She and you, will get lots of support and useful information to help along the way.
Debbie from London, Ontario



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Re: new to this/pippa/Scotts

Re : Re: new to this/pippa --- Kelly Saffell
Posted by Pippa , Apr 27,2002,15:14 Top of Thread Archive
Your aunt's name wouldn't be Angela by any chance? Angela Scott was my very good friend and i lost touch with her many years ago.
Are you coming to Scotland too? When and where will your family be staying?
Pippa



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Re: new to this

Re : new to this --- Kelley
Posted by Sally - in - Idaho , Apr 25,2002,23:03 Top of Thread Archive
Hi Kelley,

I'm just going to say "Welcome" to you and your mother. You'll find lots of help and support at this site. Your mom is fortunate to have you as her own special support person.

The hints and advice you've been given above are all good ones. I'm having difficulty with one eye so won't say anymore.

Sally in North Idaho




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Re: new to this

Re : new to this --- Kelley
Posted by Kelley , Apr 26,2002,23:19 Top of Thread Archive
THANK YOU all for replying and showing genuine concern and support for me and my mom--i truly appreciate your words of wisdom. i am curious to know your own stories about beb... for example, when were you all diagnosed... what treatments have you had, how are you functioning today (ie. driving, watching tv, reading etc, socializing, working...)how long did it take for you to get to this point.... anyway i would love to hear your stories ---- my mom is in no shape to type on the computer ...yet......--but hopefully soon--her attitude is improving--she has a good day followed by a bad one..we are all being positive and hopeful.. was also curious--i know the botox seems to be the "answer" so to speak -has anyone had the surgery that i have been reading about. was curious why they dont do the surgery more often--seems like it is a last option..must be risks huh?
thanks again for chatting with me--you have already helped a great deal...kel



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New to this: Bios

Re : Re: new to this --- Kelley
Posted by Lynn Yarbrough , Apr 27,2002,12:34 Top of Thread Archive
If you look around on this message and its context you will see reference to "pages". These are current and old -- some VERY old -- messages with a lot of good stuff. One (or more) of them contains biographical sketches of many of us. I don't know precisely where it is but IIRC it was sometime in 2002. It's worth looking for not only for its own value but also for you to explore what's available in our archives that might be useful to you.

Good Hunting!

--- Lynn




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Re: New to this: Bios

Re : New to this: Bios --- Lynn Yarbrough
Posted by Lynn Yarbrough , Apr 27,2002,13:02 Top of Thread Archive
Ah -- I found it. The thread, entitled "Introductions", starts (currently) on P. 25 and continues on more recent pages. Enjoy!

--- Lynn




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Re: new to this

Re : Re: new to this --- Kelley
Posted by Shirley-Arkansas-USA , Apr 27,2002,12:51 Top of Thread Archive
Hi Kelley. What Lynn suggested was a good idea.
Try this link below and it will take you to the last place where a bunch of us introduced ourselves and told a little about our story. Just follow the threads down. You can also click on "Overview" at the top of the bulletin board page and you can run down through it and see if there is anything of interest for you or your mother.

http://www.blepharospasm.org/forums/beb/posts/22464.html

Hope this helps.
Shirley in Arkansas




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Re: new to this/Kelley

Re : Re: new to this --- Kelley
Posted by Joann Humphrey , Apr 28,2002,12:58 Top of Thread Archive
Kelley, I've had blepharospasm since 1997 or so, but wasn't diaganosed till 1999. I've been receiving botox injections every 3 months since then. It usually takes a week or 10 days to take effect & then lasts about 7 weeks. Then the spasms are bothersome till the Dr. will give me more botox, which we doesn't want to do until it's been 90 days from the last one.
Re: surgery. I had surgery in Jan. of this year by Dr. R. Anderson in Salt Lake City. I'm very happy with the results. I can drive, watch TV, read, & "function normally" as my Dr. says. However I do all of this in moderation. I wear dark glasses to reduce the brightness, & when outside I wear sunglasses over the regular glasses. Try to avoid stress & don't get too tired. I also take clonazepam medication which reduces spasms. Botox will still be needed but hopefully not as often.
I hope your mom learns to adjust to the 'situation' since there's no cure. Tell her she'll have lots of friends on this BB. This has been my support group & I love all of them.
Joann in Ark.



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Re: new to this/kelley

Re : Re: new to this --- Kelley
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 29,2002,12:48 Top of Thread Archive
Welcome, kelly. You say your mom had very teary eyes and that led to her diagnosis?



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Re: new to this

Re : new to this --- Kelley
Posted by kerry horton , Apr 29,2002,17:12 Top of Thread Archive
Hi Kelley:
Boy do I ever know what you are going through. My Mom has BEB and we were in your exact shoes just about a year ago. I am sure that you, like me, would literally do anything to take this blasted disease away for her.
We have tried everthing. First and foremost is going to a doctor who knows a lot about BEB. We found a great one in our area from the BEB Foundation and this Bulletin Board, but we did go to many before we finally found her. It is important that your Mom feels like she is getting the best possible medical advice she can find and that she has confidence in the person taking care of her. If this round of Botox does not work, try not to despair too long. The next one may just do the trick.
I think the thing that has helped Mom the most has been the supplements she is taking as well as cranial sacral therapy (CST). It is a form of massage that treats the central nervous system via spinal fluid. It is extremely non invasive and very very relaxing. If you want more info on how we found the CST therapist, you can email me and I'll give you the whole scoop.
I am sure that right now this has somehow taken over life for your Mom and probably for you, too. I think that is really normal, but the good news is that somehow, someway - you and she will find a way to adjust to this and then it will become either something she manages or hopefully a thing of the past.
Email any time-
Kerry in CT



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