Living with BEB/Dystonia ...


Posted by Moderator-JB , Jan 16,2002,11:10   Archive
To each of you who are new and those of us who have been on the path for a while ~

New people: What are you having the most problem with?

Not so new: Same as the previous question.

Dealing with this disorder is not/never easy. It amounts to a day to day, how am I doing right now scenario. Just when you think you have it figured out, 'it' changes it's (or your) face.

Hang in there people, we're in this together.

Judy (Who's been sporting a magnificent shiner from my Botox last week. Doc was very apologetic, I thought it was funny!)




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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by Kelly Saffell , Jan 16,2002,14:07 Top of Thread Archive
I normally "cope" pretty well but today I am depessed. I am feeling very stir crazy in this house. I drove the mile to take Cory (my 3 year old) to gymnastics this morning and that is it. (I did the usual laudry and house work). I think knowing there is a very strong possibility that my license will be restricted or revoked is causing me to feel like a caged animal. Even though I restrict myself to only minimal, necessary driving the thought of someone telling me what I can and can't do is depressing. I'm having alot of problems with my meige symptoms. My jaw is killing me. I'm going back again to the TMJ specialist to rebuild my night guard because I have worn it down AGAIN. Fortunately I have my first support group meeting on Sat. I think we will ALL benefit from being able to share our frustrations.

Kelly in Dallas




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by colleen , Jan 16,2002,18:42 Top of Thread Archive
Hi Kelly I am sorry that you are having such a bad day.
My support group mettings helps me a lot.Just being with paoplelike your self does me a lot of good.
How are the little ones doing?
When i start feeling sorry for myself i think of the ones that still has children to care for.It is just me & my husband.If i dont want to do anything i can let it go,but not with children.
Take Care
Colleen in IL



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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- colleen
Posted by Kelly Saffell , Jan 16,2002,22:11 Top of Thread Archive
Thank you for asking about the girls-they are my favorite subject and are doing well. I guess the good thing about having them around is I always have to focus on someone else who needs me. The bad part being sometimes I need to just go to bed and can't. Yesterday Cory was tired after preschool so we got in the rocking chair for an hour while Scooby Doo was on. I cuddled her and just leaned my head back and shut my eyes. Then Morgan comes in the door from school (1st grade) and it is time to do homework-mostly reading and spelling. My grandmother died yesterday and even though she has been suffering for 2 years and we were ready for God to take her home, it is still hard when it happens so that is probably contributing to my "funk". I am sooo looking forward to starting this support group and can't wait to meet everyone face to face.
Kelly in Dallas



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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Jan 16,2002,22:32 Top of Thread Archive
My sincere sympathy, Kelly, in the passing of your grandmother. Even if you were ready for her to go, it still is very hard on everybody. I'm glad you have your 2 girls and husband to comfort you - you are going through some very tough times right now. I hope your new support group brings a new light into your life.

June in Toronto (beb/meige)




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by Sally - in - Idaho , Jan 16,2002,23:46 Top of Thread Archive
Dear Kelly,

I am so sorry that your grandmother is gone. I could tell from previous posts that you loved her very much and that she had been very special in your life. Cherish those memories.

If I were close enough, I'd love to cuddle your little girl and read to her and let you have a restful nap. But that's not possible, so just know that I do care and am thinking of you.

Sally in North Idaho




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by Christel-California , Jan 17,2002,11:41 Top of Thread Archive
My sincere condolences, Kelly. I never had a grandmother, except a step grandmother, who wasn't one to me. I always longed for my very own grandmother when I was a kid, as I noticed that grandmothers held a very special place in the hearts of my friends and seemed to be special.
Be happy you had your grandmother for as long as you did and that her suffering is over. I'm sure she'll live on in your heart for as long as you live.

Christel in Ca. who went from wanting a grandmother to being one.

P.S. Good luck with your meeting. Wish I could "beam" over for the occasion --but alas--this is real life. Don't forget to have some fun too.

--modified by Christel-California at Thu, Jan 17, 2002, 11:49:10




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by Shirley-Arkansas-USA , Jan 17,2002,15:33 Top of Thread Archive
Kelly, I'm very sorry to hear about your grandmother. I have very fond memories of one of my grandmothers. I know that this time is difficult for you.
Don't try to do too much to get things ready for your Saturday get-together-just be there to share with those folks. I even thought of coming myself as I would love to meet you. You're about a 6 hour drive away but both my parents are still having too many problems right now for my husband and I to just leave for a couple of days.
I'll be thinking of you.

Shirley in Arkansas where it is cold and drizzley




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Shirley-Arkansas-USA
Posted by Kelly Saffell , Jan 17,2002,21:11 Top of Thread Archive
Hopefully everyone's interest in the support group will be lasting and we will meet regularly...forever... so maybe when things settle down for you and and your husband you guys can head our way. I would love to meet you and know that you could add alot to one of our meetings!



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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by Kelly Saffell , Jan 17,2002,21:15 Top of Thread Archive
I want to thank everyone for their sympathies. They are felt. The memorial service will be next weekend so I'll be gone only overnight and Aron and the kids will stay here.

Kelly (by the way Sally-I wish you could cuddle Cory so I could take a nap too! I did lay down on the sofa today and was half out of it. She brought her doctor cart over and doctored me!)




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Re: Dr. Kid!

Re : Re: Living with BEB/Dystonia ... --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Jan 18,2002,07:09 Top of Thread Archive
Oh the memories that brought back to me, Kelly - the days when my 2 boys were little! Double enjoy them.

June in Toronto (beb/meige)




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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by Shirley-Arkansas-USA , Jan 16,2002,19:10 Top of Thread Archive
Hi Judy,
I think that one of the hardest aspects of this for me to deal with is the independence issue. I was always a very independent person and never wanted to rely on anybody for anything. That has really been hitting me hard lately with my parents needing so much care and attention. My husband is home now and we go take care of the things together which is fine but I hate the fact that I have to depend on anyone for transportation for the spimplest of acts. I just want to be able to do it myself.

I also have difficulty with not being able to plan anything. I never know how my eyes are going to be on any given day so instead of planning something and then possibly have to cancel out because I can't get my eyes open, I just have to take each day as it comes and what it dishes out for me and roll with the punches.

Sorry about your shiner. My botox, a week ago, left me with no bruising. I usually get little tiny bruises but this doc left nary a sign of injections. Still waiting to be able to tell that they are working, though.

Shirley in Arkansas who just had a "pizza night" for supper. I'm stuffed




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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by r coutant , Jan 16,2002,19:30 Top of Thread Archive
first and foremost i'm going to kelly saffell's support
meeting sat. and i'm going to her doc on tuesday.

my frustration is i'm still trying to work. i'm a
cpa so dealing with the spreadsheets & numbers is
very, very hard. i work very slowly as my eyes
will let me. i ride in to work with my husband and
ride home on public trans. i don't know how long
i'll be able to work. i guess i might have to
file for disability if the new doc can't help me.

this is a bummer.

rhonda coutant in dallas




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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by Tim Johnson-PA-USA , Jan 16,2002,22:16 Top of Thread Archive
Hi Judy,
It is difficult for me to say what I am having the most problem with, as this BEB affects every area of my life, every day. It is relentless. It has stripped me of my life, and put me in a cell. Not being able to drive for three years is probably one of the worst things. But even walking, or riding are bad triggers. Conversations are triggers, so I find myself wanting to stay by myself. My work (I am self employed), which involved much reading and computer work, as well as public speaking, has been greatly affected, at times impossible, always with great difficulty. Since the symptoms of eyes squeezing, facial, throat and breathing problems can come at any time, and do appear several times most every day, I cannot make any plans. I take meds, gels, drops, ointments, extra rest, warm compresses throughout each day just to survive. Botox is unpredictable, but at best is only a small help overall, not really improving quality of life that much. But I still would not want to be without it. The hardest thing may be trying to forge out a "new life" when I cannot give up the other without serious consequences. Also dealing with the worsening of symptoms in severity and frequency.
Tim in PA, 56 years old, diagnosed BEB 9 years.



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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by Sally - in - Idaho , Jan 16,2002,23:53 Top of Thread Archive
Hi Judy,

The problems seem to remain the same ... only more so! The most distressing are the loss of independence, difficulty in reading, pain of light and the fact that my whole nervous system seems to have gone bonkers and I get in a panic over such little things.

It is also annoying to have people constantly asking, "Are your eyes better yet>" "Isn't that Botox stuff working?" I get so tired of trying to explain that Botox is not a cure and that my eyes most likely will never be "better." But I appreciate their concern and should just be grateful.

Sally in North Idaho BEB/Meigh




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Re: Living with BEB/Dystonia ...

Re : Re: Living with BEB/Dystonia ... --- Sally - in - Idaho
Posted by Christel-California , Jan 17,2002,12:54 Top of Thread Archive
Hi Judy,

My condition has definitely progressed over the last year and relief from meds is short-lived. It is so tiring to fight the spasms all day and the only relief found is in closing my eyes and going to sleep, but I can't sleep my life away, what's left of it.

Being around people is very difficult for me, I spasm when they talk to me and even worse, when I have to do the talking, it's so hard, each word seems to be choking me. I've become much of a hermit because of it.

The worst, of course, is the loss of independence, not being able to drive my car anymore and wondering what would happen were something to happen to my husband which would cut short his driving ability.
I live a day at a time, hoping tomorrow will bring improvement, will tomorrow ever come?

Christel in Ca. who hasn't had a good eye day in quite a while, but knows that things could always be worse.




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Re: Living with BEB/Dystonia ...

Re : Living with BEB/Dystonia ... --- Moderator-JB
Posted by June in Toronto (June Floyd,June in Toronto), Jan 17,2002,14:58 Top of Thread Archive
Like others that have replied, Judy, I really miss my independence with this disease. After over 6 years of being diagnosed I had a bit of a crisis realising that this was not going away and was (perhaps not God willing) for life. I have trouble not being as active as I was before. The best quiet time, before beb, was when I was curled up with a good book - that is now not possible - and I can't seem to do the same with a talking book (I know others can). Not being able to work anymore, having to stay home a lot because of weather conditions, lights and general noise conditions, makes June a dull gal I'm afraid. I count my blessings but miss the `old' life so much. I try to take each day as it comes, enjoy it as much as possible (in other ways) and do so enjoy this bulletin board and the caring, quality people here.

June in Toronto (beb/meige)




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