Re: Symptom Free Days
Hi ShirleyAfter my Botox has kicked in, say 1-2 weeks, things are almost normal for me until it starts wearing off. This can be as early as 5-6 weeks and even before that there are the odd spasms but nothing to worry about. I find it works very well - right now I am climbing the walls because it is overdue - roll on next Thursday.
Lyn
Re: Symptom Free Days
Lyn, sorry about your present difficulties but am very glad to hear that you do have "normal" days that let you go on with your life in a fairly normal manner. We are all so different with this. Although, we don't hear from so many on the bulletin board, I do feel that there are many people out there that are well controlled on botox and or medications. It is indeed nice to hear when people are "successful" with their treatments. Now, hang in there until next Thursday. You are allowed to scream and throw things on the bulletin board if you need to. I don't dodge very well anymore so watch your aim.Shirley in AR.
Re: Symptom Free Days
Hi Shirley
My computer is going so SLOWLY !!!!! today ...It took ages to get on - I think it is because it is Saturday morning here and all those weekday workers are trying to get on. Yes, I think I am lucky that I do have good days - so many of you seem to have far more problems than I do. It is so good to discuss things on the BB.. have a nice weekend!
Lyn
Re: Symptom Free Days
The standards I use to rate my days is so different now than pre-BEB. I'm not sure what a symptom-free day would feel like. I have really good days (by current standards) pretty often. But that still means that I may feel sluggish in the evening from the Klonopin or have trouble chewing at one meal or close my eyes in bright sunshine for a brief time. I have very few days when my eyes spasm for hours. I'm more likely to have days when I have trouble breathing.I wish I could tell what makes the difference. I do know that the rainy, humid weather we have had lately has been a problem and physical exertion or stress is a problem. But I can't pinpoint what precipitates a good day. At the conference in Florida, I was fine - got up really early, sat in rooms with fluorescent lighting, watched slides - all those nasty things, and the only time I had eye problems was when I would go outside during breaks into the sunlight. (But I still managed to find a lounge chair in a shady spot without falling into the pool.) The drive down was miserable - the drive back was a piece of cake. I have no idea why. Virginia in AL, not much help
Re: Symptom Free Days
Like Shirley and Virginia, I have not had what I would call a symptom
free day. At the most maybe 3-4 hours. Either the eye muscles or
the breathing does something to remind me I have this disorder.
By the way, Virginia, maybe you and I can chat sometime about this
breathing problem. I wonder how it feels to you in neck, throat and
chest area and if you think there may be anyconnection to your eyelid spasming.Hope to chat with some of you this morning. Joanne M. San Diego, CA
Re:Chat today
Sorry that I couldn't attend the chat today. How did it go? Shirley
Re: Re:Chat today
Was great...Judy, myself, Mindy and Virginia joined us a little later.
Discussed meds, symptoms, emotions, etc. I always benefit from it--must
be some kind of release for me. Missed ya!! Joanne M. San Diego, CA
Re: Re:Chat today
Sorry that I missed it. Will try to catch you guys the next time.Shirley
Re: Re:Chat today
Joanne and all - I would love to be in on the next chat. I just got back from the symposium on movement disorders in Oxnard, so am just catching up on the mail. Tomorrow I launch my summer campaign to conquer this THING before school starts in September! I'll be home all day, every day, except for those excursions that I am going to force myself to take, thus proving to myself that I am somewhat normal! I drove myself over and back to Oxnard (about 4 hours driving total) and did a pretty good job of it. I stayed by myself, found my way around Ventura, tackled a large mall, found B&N and bought relaxation CD's and, best of all, found Target and bought my son, Max, a Pokeman game that he absolutely could NOT live without because he got such a good report card!
Shelley
Re: Symposium in Oxnard
I also went to the Symposium in Oxnard, CA on Sat. and met Shelley Chambers there. It was nice to meet you Shelley and to have a chance to talk to you. I enjoyed the Symposium. I had a chance to talk to one of the doctors afterwards who spoke there and he gave me some ideas regarding my appt. with my Botox doctor on Wed. this week. I have ST but I think I also have Meige. I hope he will give me some Botox around my mouth area to help my spasms in my face. I plan to take a video tape of myself to show him how my face spasms. I learned a lot at the meeting as well as by reading about Dystonia on the internet and especially by reading what you all say on this BB. I also drove myself to Oxnard - also about 4 hours round trip. My husband came with me cause he was worried I wouldn't be able to find it - he likes to travel the back way which we did and found it with no trouble. I'll let you know what happens after my appt. on Wed., June 12. Margo (who's having a little trouble being around people - feeling very self-conscious lately).
Re: Symposium in Oxnard
Good morning, Margo! It was great meeting you at the symposium. I think you are being very brave. Botox has helped my mouth. The drawback is that it sometimes relaxes it TOO much and I have a kind of sloppy smile for awhile. My doctor took videos of me on my first trip for his own comparison purposes. But he is a specialists. Are you seeing an opthalmologist or a neurologist? I know you told me but I've forgotten, as usual!
Sheley
Re: Symposium in Oxnard
Hi Shelly,
Thanks for writing back. I go to a Movement Disorder Clinic in L.A. for the Spasmodic Torticollis or Cervical Dystonia in my neck. I believe the two doctors I've seen are neurologists. One of them gives me the Botox in my neck and he consults with the main doctor before he does it. He used an EMG machine the last time - the first time I was so bad they could tell where to do the injections without use of the EMG machine.
The doctor took a video of me the first time I was there and then the second time to see how I improved. I plan to take a video of myself tomorrow to show the doctor because my face tends to be very calm when I'm in a doctor's office - not sure why. Today was a very bad day at work. I almost left right after I got there. I worked for 3 hours which is what I usually do - sometimes I work for 4 hours at a time.
I also want to fill out the questionnaire regarding the family study on BEB. I am not on their mailing list yet. I'm still trying to get on. We think my father had BEB several years ago. My mother said he had a lot of small shots around his eyes with botulism. He used to blink a lot and close his eyes. At that time they told her it was Degenerative Macular Disease. I think it was probably Blepharospasm. I'm not sure if I have it or not but my mouth opens and my cheeks spasm a lot. I'll let you know what happens after my appt. on Wed. By for now - Margo.
Macular Degeneration
Margo:It's difficult to understand why a doctor would give Botox shots for what they thought was Macular Degeneration. That is a condition where your eyesight degenerates, leaving a hole in the middle of your vision area. (a very simplistic description) Eventually you go blind. It has nothing to do with your eye lids opening or closing. Judy
Re: Symptom Free Days
Virginia, Isn't it interesting the way our standards change? Mine have, too. I was ok at the conference while I was up and mingling but my eyes would close when the speakers would start talking. They would open periodically but I mostly just sat there and tried to concentrate on what they were saying. I was surprised that I did as well at the conference as I did, also. I was taking all my medication, though, that helped to keep my eyes open. On the way up and back, I was shut down in the car, though.Shirley in AR. There was a pool?
Re: Symptom Free Days
I don't think I had a symptom free day for the first
3 yrs. There were days I would wake up feeling "it was
gone" and the first move would correct that thought :(
When I first came on the BB, it was suggested we keep a chart.
I was actually suprised to see in the long run I was doing much better than I thought I was. If I had a few bad days, without the chart
it felt like I had no "good" days for the month.
I had my brother set up a graph that automatically corresponded
with my entries on my chart.
For me it proved to be very helpful to my emotional state, which
in turn helped my symptoms.
Mindy in NY - who prays you all have symptom free days.
conferences and pools
Shirley,
I was referring to the International Master Gardener Conference that I attended in Orlando last week - not the BEBRF conference last year. I used to go to a lot of gardening conferences and seminars, but quit for a couple of years because I got tired of staring at the carpet during the lectures. (Did that during the banquet at the BEBRF conf.) This was the first time I had tried it since the surgery and my eyes did great. And yes, there was a pool - can you imagine a hotel in Florida without a pool? As for the BEBRF conf. - ask Alan.Virginia in AL
Re: conferences and pools and where's Alan?
My world has become so small that I only thought of one conference. I really need to get out more. It's good to hear that you did well.
Where is our Alan, anyway? If he doesn't surface pretty soon, we'll just have to go "fishing" for him. I worry about him when he stays away too long. I don't think that we have heard from him since he had the pin taken out of his heel.Shirley in AR.
Re: where's Alan? You guys need to write things down!
Don't you guys remember anything anymore? Cheesh ... and I thought I had senior moments. You all forgot when Alan told us waaaay ahead that he was taking the grandkids to Disney Worley, and a search party was sent out. Well ... this time, he posted a couple of times (or more) how busy he is preparing for his mother's big birthday gathering of guests coming from all over the world (same time as the conference, remember now?).Okay. I feel so good that I actually remembered something! Sally in North Idaho
Re: where's Alan? You guys need to write things down!
Good grief Sally, that is 2 1/2 months away. His wife is doing all the cooking I'm sure. He couldn't be that busy. I think that he just doesn't love us anymore.Shirley in AR. I've been so depressed today over absolutely nothing that I haven't even checked the bb since last night. Now, I'm going to bed and hopefully my attitude will be better tomorrow. I'm not even going to read anymore posts. Yes, it's been THAT bad.
See everybody tomorrow.
Re: where's Alan? You guys need to write things down!
Sally, you are right, I am still around. I have been real busy with a number of things. My mothers birdthday party is coming along fine although I was not able to move it from the weekend of the BEBRF conference. There were too many people who already had their airfares and it wouldn't be fair to them. I did change it from having it at my house to having it at a hall. We are getting close to 200 people attending and it would be too much of a stress on us which I don't need. I also have been spending a considerable amount of time trying to raise some funds for the foundation on my own. I also just got elected as Grand Knight at the Knights of Columbus in my town. I try to check the board when I can but I find that the formatnow is so difficult as it seems one topic tends to take up a whole page .My eyes uunfortunately are not doing very well. I thought the lower Myectomy would help but it did not do anything. I guess the apraxia is the overpowereing thing along with my Meige. Anyway, I still am alive and have not fallen into the pool this year although I am going in it in about ten minutes when my grandkids come over. I had to put the heater on as they like it about 80 degrees. To me, that is like bath water but you have to please them....Talk to everyone soon and glad that I am on your minds...Alan
Re: where's Alan? I knew what I was talking about, Shirley!
Hi Alan,Glad to hear you are keeping busy (way busy!!) and have just been enjoying the pool and not making a big spash. Good for you ... raising funds on your own. Did you read my post back a bit ago that Dee Linde is being featured in an article that will be published in an Oregon paper? The writer seems to be very interested in getting lots of MEDICAL information included. And June has been doing super in Toronto at getting recognition. Lots of people are working at it, so can a cure be far behind? We'll hope not. Check in when you can, to ease Shirley's mind if for no other reason. I co-chaired an all-school reunion last June for hundreds and I know the stress you are under with the birthday party. Have fun with it. Sally in North Idaho
Re: Symptom Free Days
I'v never written on the bb before, I have read some of the messages and haven't had the nerve to write one. I've have blepharospasms since l994. I also have meige. I get 100 units of botox every 8 weeks. They are starting to not work as well for me as they used to. I have days that are much better than others, but never had a day where I had no spasms at all.
Billie
Re: Symptom Free Days and Welcome
Hi Billie,
I'm glad that you worked up the nerve to post. I read posts for a couple of months before I ever posted anything. I was scared to post and didn't know how to do it. I remember, my kids had to walk me through it step by step. Of course, I haven't shut up since.I was also getting 100 units of Botox every 8 weeks. I had apraxia problems and finally decided to let Dr. Anderson do an upper limited myectomy on me about 7 1/2 weeks ago. I'm still having some side effects from my surgery but things are slowly and gradually improving. Just jump right in and post something anytime you feel like it. If you like, you could tell us a little more about yourself and what part of the country you are from. Even though, I don't have any spasm free days and haven't in a couple of years, it makes me feel better knowing that others do have some symptom free days. I don't feel alone with this like I did in the very beginning and that is very important for me. Welcome to our group
Shirley in AR.
--modified by Shirley-Arkansas-USA at Fri, Jun 08, 2001, 20:44:29
Re: Symptom Free Days
I live in Kansas and have 2 grown daughters. One is married and has a 7 month old son, so I haven't been a grandmother for very long. I was at the conference in Lexington last August. I learned a lot while we were there. It sure was nice talking to so many people who had some of the same things I have. I did talk to Dr. Anderson about surgery, but haven't decided what to do yet. Shirley I'm pretty sure I met you and your husband while we were there. I really can't remember any other names. Bad memory!
Billie in Kansas
Re: Symptom Free Days
Billie, great to meet you and thanks for posting. My name is Joanne
and last year was my first conference. I have the blephs, meige and
breathing dystonia. Let me encourage you to join us on this board. I have not only gained a wealth of information within less than a year's time, but I have been able to vent my emotions; frustrations, sadness and the joys as well. You will find many ears who are willing to listen here since we are all experiencing similar symptoms. It is hard to imagine my life now without the bb. Anyway, feel free and hope to hear from you lots. Joanne M. San Diego, CA
Re:met at conference-link to picture
http://www.blepharospasm.org/forums/beb/56archive.htmlHi Billie, I went back and looked up the picture of some of the people that were at the conference last year that are on the bb. I didn't know if you had seen it or not and thought you might like to so that you can see some of the people that you are talking to. Just click on the link and it will take you there. I met so many people and I have trouble remembering names also. I'm the one that begged people to try the bulletin board. I stood up at the very beginning of the conference and talked a little about it (from my seat) I was not one of the speakers. I have a sister that lives in Syracuse, Kansas. Are you going to be able to come to the conference in Scottsdale, this year? Shirley in AR. PS. after you click on the link you will have to scroll down to where the post says "2000 conference" posted by the moderator(Judy)
--modified by Shirley-Arkansas-USA at Sat, Jun 09, 2001, 21:26:16
Re: Re:met at conference-link to picture
Hi Shirley,
I don't know where the link is, or how to click on it. I don't know if we will be able to go to the conference this year or not. I'd like to. It seems so far away. I am going out of town tomorrow, so I may have to look for your reply on where is the link when I get back. I'm going to church camp for a week, am teaching a class of 5th & 6th graders on Missions. I go every year and always have fun, but I miss my family while I'm gone. Thanks for the welcome.
Billie
Re: Re:met at conference-link to picture
Try this link and click on the photo to enlarge it.
Related link: http://www.blepharospasm.org/forums/beb/archive/7005.html#7005
Re: Re:met at conference-link to picture
Thanks Virginia,
Your link is better than mine. I was just following Roy's instructions, though. Now he's been outdone by a female poster and he is just going to have to deal with it.
Thanks for making it easier.Shirley
Re: Re:met at conference-link to picture
Hi Billie,Perhaps you're not understanding that all you have to do is click on the "stuff" that is showing up in the color of blue on Shirley and Virginia's helpful hints. Have a wonderful time at camp. Persons who are willing to give their time for the spiritual growth of our young people are desperately needed. Sally in North Idaho
Re: Symptom Free Days
Hi Billie ... Welcome to the BB. I'm glad you came out of the shadows. I watched and read for quite a long time before I ever posted. It can be intimidating, I know that. I hope you will find this a happy place to be and will find answers to a lot of your questions. At least, we can all share our frustrations.Sally in North Idaho P. S. I'm sure that Shirley is memorable ... she just can't remember? Just joking, I love her dearly!!!!
Re: Welcome Billie/Symptom Free Days?
Hi Billie, welcome to the bb - I've had beb/meige for 6 years now and receive 90 units of botox every 4-5 months. Except for a month or so of side effects it works well for me, although I, too, never have a day without symptoms. There are many restrictions with this disease but we try and deal with them the best way we can.Glad you finally posted! Best wishes. June in Toronto
Re: Welcome Billie/Symptom Free Days?
Hi Billie Welcome iv'e had beb for 3 years now i get 17 injections every 2 months.Mine last about 3 weeks & i am symptom free most of that time.I also read the bb before i posted I am a little more relaxed now .A lot of nice people to talk to.
Take Care Colleen in IL
--modified by colleen at Sat, Jun 09, 2001, 18:51:03
Re: Welcome Billie/Symptom Free Days?
Thanks for the welcome. I am going out of town tomorrow and will be gone for a week. I will wait on any questions I have until I get home, otherwise I might miss any replys.
Billie
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