So many questions... so many answers


Posted by Shirley Shepherd , Apr 01,2002,12:20   Archive
Hi Everyone, my name is Shirley. I am new to the bulletin board. I have really enjoyed reading about everyone's different stories. It is amazing how many different problems we all experience with this frustrating condition. I would like to share with you my experience and see if anyone can relate to my story.
I am 40 years old and live in Atlanta,Ga. I have beb/meige for about 4 years now. However, before that developed, I had another form of dystonia. Does anyone else have spasmodic dysphonia? It involves the tightening of the vocal cords making it difficult to get your words out. I had that for 11 years, getting botox injections in my neck every 3 months. A little over a year ago I found out about a surgery given by only one doctor at UCLA. To make a long story even longer... I had the surgery and thankfully it was a success and I no longer have to get the injections.. for THAT! As difficult as that condition was to deal with, it was a walk in the park compared to this beb/meige stuff.
My condition has gone through phases just as many of yours have. However mine seem a little different in some ways. Things like driving and sunlight don't seem to bother me like most of you. My biggest problem is being around people... I mean anybody. I can't have a conversation without severe squinting, grimicing and pretty much tension throughout my whole body. I'm not going to go into too much detail right now about the four year process. My biggest question to everyone out there right now is, how many people were able to keep working. And those that are, what type of job are you able to handle. My work history unfortunately is people oriented. I have been in resturant management for years. I also a few years ago got my real estate license to become a sales agent, thinking that would be a little easier on me. Well.. WRONG!! Anyway, I would appriciate any input or suggestions anyone could give me.
Thank You so much,, Shirley



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Re: WELCOME TO SHIRLEY IN ATLANTA, GA

Re : So many questions... so many answers --- Shirley Shepherd
Posted by June in Toronto (June Floyd,June in Toronto), Apr 01,2002,14:00 Top of Thread Archive
Hi Shirley in Atlanta (we have another Shirley who is from Arkansas), welcome to the bulletin board. So glad to hear that you got help with spasmodic dysphonia - there's a whole bulletin board for people that have that.

I've had beb/meige for almost 7 year's now and had to give up my job at a university where I'd worked for 20 years, because of it. I was almost at early retirment age anyway so it wasn't such a big deal as it is for others. You will find that we have a lot of common problems with this disease, but we also have variances. Light sensitivity is one of my problems, but I can watch tv and go to a non-flashing-type of show - I believe that is due to taking Bilberry tincture as I wasn't able to do that for a couple of years, before taking that herb. A lot of us have problems with noise and especially being around people - that's awful for you as you are in a `people oriented' job. Some of us are ok when we are doing the talking but our eyes close when somebody else is talking to us - it cetainly is a strange disease! I'm sure others will welcome you and give you their point of view. Good luck to you and come back and post again.

June in Toronto (beb/meige)




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Re: So many questions... so many answers

Re : So many questions... so many answers --- Shirley Shepherd
Posted by Sally - in - Idaho , Apr 01,2002,14:24 Top of Thread Archive
Welcome to the BB, Shirley in Atlanta. I'm sorry you need us, but glad you are here. I have BEB/Meige and the extreme photosensitivity. It is difficult for me to be around people, especially a large group. Part of this is because I have a severe hearing loss and the BEB doesn't allow me to lip read anymore, so I am very uneasy about missing out when someone is speaking to me or giving the appearance of being asleep or just plain stupid.

I find that my eyes will open when I'm the one doing the talking, but close when listening to others, which can be assumed as rudeness by those who don't know. I am nervous and ill at ease around people for these reasons. Also, I tend to lose my balance and bearings when in a large gathering or the open spaces.

How wonderful that at least one of your ailments has been made better! Hang around and there will be someone else to offer more answers to your questions. I was able to quit working and take early SS when my eyes got really bad.

Sally in sunny North Idaho




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Re: So many questions... so many answers

Re : So many questions... so many answers --- Shirley Shepherd
Posted by Joanne Matuzas , Apr 01,2002,17:31 Top of Thread Archive
Shirley, I am one of those blephros with some meige and breathin irregularities still working as an admin tech at a local community college. The leadership here has changed the lighting
at my work station and provided me with an LCD computer monitor which
is much easier for my eyes as it operates differently from the standard monitor with the jumping pixels!! My co-workers are totally supportive and even casually joke about some of my involuntary grunting and noises that come out every so often....I work several hours a day at the computer and have some contact with faculty and other college administrators. I am able to set my own pace so it is not a very
demanding, stressful job most of the time. I no longer would be able to handle that. I have recently become vested in the retirement system here so I am now free to make some decisions about retirement.
Good luck. Joanne M. San Diego, CA



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Re: So many questions... so many answers

Re : So many questions... so many answers --- Shirley Shepherd
Posted by Shirley-Arkansas-USA , Apr 01,2002,17:55 Top of Thread Archive
Hi Shirley (Nice name :-)) and welcome to our little group. Sorry that you are having to deal with so much. I don't recall anyone on this bulletin board also having SD. There might be, though. Glad that your surgery was successful for your SD.
I've had BEB for about 3 years now. My light sensitivity comes and goes-sometimes very bad and sometimes not noticable at all. I can't drive, though due to the eye closure and Apraxia. My eyes usually will stay open if I am doing the talking but they automatically close if someone talks to me. My facial grimacing that I have when someone is talking to me is usually due to trying to get my eyes to open.

I was not able to keep working. My symptoms progressed very rapidly over a 3 month period and I could no longer perform the duties of my job as a nurse. Nursing is very much people oriented with a lot of documentation and procedures involving being able to see.

Again welcome to the bulletin board.

The other "Shirley" with BEB/Apraxia




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Re: So many questions... so many answers

Re : So many questions... so many answers --- Shirley Shepherd
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 02,2002,03:05 Top of Thread Archive
Welcome, Shirley. I live in Atlanta, also. I have not beeen able to work or drive for many years. I think spasmodic dysphonia has been mentioned before on this bb. I get throat spasms after my injections for awhile , when the botox starts to take effect and this is also when there is some of that grimacing you are describing happens as the eye muscles struggle to get themselves settled. I don't mind large groups of people as long as i know them.
My eyes are often better when I am the one doing the talking, however since I am not a big talker or have ever been, I find that rather exhausting. Hope some of these things help.



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Re: So many questions... so many answers/tiny print

Re : Re: So many questions... so many answers --- Kathy in Atlanta
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 02,2002,03:09 Top of Thread Archive
Who keeps making this print go tiny on me??? I t hurts my eyes!



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Re: So many questions... so many answers

Re : So many questions... so many answers --- Shirley Shepherd
Posted by Debbie Campbell , Apr 07,2002,03:27 Top of Thread Archive
Hi Shirley,

I too am new to the bulletin board (tonight) and I have read some very interesting and helpful things so far. I was just diagnosed with beb in January so it is all very new for me and an hugh learning experience.

For me, when I am in meetings at work, I seem to have grimacing a lot while trying to keep my eyes open but when I speak, my eyes tend to stay open. I get to the point where I don't even want to blink because if I do I know I am going to have to stuggle again to get my eyes open. Driving is an issue and the sunlight and wind affect my eyes as well. I have these hugh sun glasses that I wear to protect my eyes when I go out. They look like big snow goggles but they help. Often when I am working very hard trying to keep my eyes open when I am at work, i am grimacing so much, the whole upper part of my body is quite strained so when this happens I just focus on breathing to help release the strain. Sometimes this seem to help. I can't stop work so I need to do whatever it takes to make it through each day!
take care,
Debbie Campbell, London Ontario




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Re: WELCOME DEBBIE - ANOTHER CANADIAN

Re : Re: So many questions... so many answers --- Debbie Campbell
Posted by June in Toronto (June Floyd,June in Toronto), Apr 07,2002,08:01 Top of Thread Archive
Welcome to the bulletin board Debbie. I'm sorry to know you have this disease but you've come to the right place for caring, understanding, sharing of knowledge and some good laughs.

I've had beb/meige for about 7 years now and had to leave my job at the Univ. of Toronto because of it. I was almost at early retirement age so it wasn't such a big deal for me - but you sound a lot younger and it must be very hard to carry on. I get 90 units of Botox injections every 4-5 months (have you had them yet?) and the side effects last between 4-6 weeks before the eyes settle down. I've tried medications but nothing much seems to help. Stress is a big factor and we should all do what we can to combat this - that's why we have cyber pity parties every so often - they help. Again, welcome - its nice to another Canadian posting - come back and share again. Best wishes

June in Toronto(beb/meige)




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