Posted by: Kathy in Oregon ®
12/12/2002, 07:39:03
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this is a perplexing problem. i have had this on occasion when my eyes are bad, a sort of dizziness that happens while i am trying to correct my eyes. It's like the brain can only take care of one thing at a time. also , there was a very interesting article in time magazine , describing a number of people previously thought to have had alzheimers because of their balance problems and actually they had a buildup of fluid on their brains, which was easily alleviated by a simple shunt operation. It was in a special report.
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Posted by: Kathy in Oregon ®
12/12/2002, 07:43:16
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Another thought, kelly. Do you have very high arches in your feet?
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Posted by: Kathy in Oregon ®
12/13/2002, 08:47:55
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I also have very high arches , am tall, and have short feet.As ridiculous as it sounds, when you think about the small area that you are balancing your weight on, which is only the ball of the foot and the heel, sometimes it is easy to lose your balance.
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Posted by: Delaine Inman ®
12/12/2002, 09:15:00
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Kelly I am always bumping into walls, corners, furniture because I sometimes walk like a drunk or lose my balance. It doesn't always mean my eyes are closed either. I stay bruised and sore. I have always done this to a certain extent all my life and it has become worse over the years. I blamed it on my fibromyalgia and as it worsened I blamed it on my eyes slamming shut, but even with them open I do it. I don't feel dizzy......just can't steer straight or feel I can't keep from veering sideways. I do try to stay off ladders.
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Posted by: Kelly Saffell ®
12/12/2002, 12:11:06
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I've bumped into things alot too over the years - usually hips and head. This time I actually feel myself veering off to the side and toppling and I can't stop it. I don't feel dizzy either. I must look drunk to those outside parties who are watching me! I have a huge bruise on my leg from falling onto the end table.
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Posted by: denise mckew ®
12/12/2002, 09:24:47
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Hi Kelly,Maybe it's just this round of botox effecting deeper muscles? I know from my neck problems that if the large neck muscle running from behind your ear to your sterum is in spasm, balance can be effected. I notice it mostly when standing up from sitting, or straightening up after letting my dog off his leash. Take care,
Denise
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Posted by: Kathy in Oregon ®
12/13/2002, 08:51:22
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I think that can also be an oxygen, circulation or blood pressure thing.
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Posted by: Shirley-Arkansas-USA ®
12/12/2002, 09:55:30
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Hi Kelly,
Have you changed your Parsitan dosage recently or any other medication? It could be related to that. Just throwing things out since this is a change for you.I've always had some balance problems sporadically. Sometimes mine is related to my eyes closing and other times I don't feel that it is. Glad that your eyes are working well. :-) Shirley in Arkansas
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Posted by: Kelly Saffell ®
12/12/2002, 12:08:40
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I haven't changed my dosage but I do remember when I first began the klonopin being extremely clumsy. I dropped and spilled things all the time and my neuro told me it was the meds.
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Posted by: ClaireW ®
12/12/2002, 09:56:51
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Funnily enough i am having balance problems too at the moment. We think they are caused by some middle ear problem...my ears get a bit yucky becuase my Eustachain tubes keep getting blocked...the ENT doc thinks it;s becuase of the way i swallow due to dystonic swallowing problems..the tubes get inflamed and then close down as food and acid somehow find's its way inot my Eustachian tubes...then you get middle ear fullness that affects your balance..so I guess what i am saying is get your ears checked out...I don't get earache particularly often ...just dizziness...however i do also have high arches...check out the Dystonia BB and correspondance on "feet"
Best Wishes,
Claire...who is just off to Docs becuase my ears are blocked again and my balance is off!
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Posted by: pippa from scotland ®
12/12/2002, 17:38:59
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How odd. I too have high arches and I also have problems with balance...and labyrinthitis (middle ear fluid sloshing around like a tidal wave,ie over and back making my brain think I was going in those directions too) was how the doctor described it. But she didn't think there was anything much that could be done except give me tablets for any sickness with the dizzyness. But as I don't feel sick I have nothing for it. I think it will go eventually.I have had it before many times.
I thought my middle ear problems had been exacerbated by flyin. I have pain when the aeroplane is descending(and when nobody else seemsto be in pain) and when the pilot hasn't adjusted the cabin pressure enough (for me anyway.) I heard an article on the radio saying they sometimes could save fuel on long haul flights by not adjusting the air pressure. Anyone else know about that?
Pippa from ICY Scotland
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Posted by: June in Toronto ®
12/12/2002, 12:48:51
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I'v had balance problems, Kelly, on and off since getting beb. I put it down to the fact that my brain is trying to get my eyes to focus, etc (during the worst times) and therefore my hearing isn't as effective (brain coping with one thing at a time). The hearing problem, combined with the beb, makes me off balance. That's the way I figure it for me anyway. You take care and no more climbing unless your hubby is around please!June in Toronto
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Posted by: Anita Croce ®
12/12/2002, 13:19:06
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Since I had heard many BEB people complain about balance and I also am having problems, I was interested in finding this article in a book which referred to the basal ganglia and balance. Kelly, I would be glad to copy the article and mail it to you if you send me your address at this email: chetjr@msn.com This was one of my questions for the doctor at our last support group and he had not heard of this, so I mailed him a copy of this article. If your interested, contact me. Hope this might be of some help.Anita Croce, North Central District Director, BEBRF
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Posted by: pippa from scotland ®
12/12/2002, 17:40:35
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Is it possible that you could copy it here on the BB for us all, please? It sound very interesting.
Pippa from Scotland
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Posted by: Anita Croce ®
12/12/2002, 18:29:56
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I don't have a scanner, so I will write what I have found in this book called "The Brain and Central Nervous System". Before I begin to type what the book says, I would like to mention that going back into the 1985 and prior to this time, people have complained of their balance being off and bumping into walls, as well as not being able to walk a straight line or being considered drunk. I'm referring to people who have BEB. I have spoken with numberous blepharospasm, etc. patient's that have asked if someone else has had this problem. Many of us have had sore arms and shoulders from walking into corners of the wall.This is just a short article but hope it helps those that are interested in this problem. "Meanwhile, your basal ganglia---masses of gray matter buried deep in the cerebrum---are also active, controlling fine details such as balancing the rest of your body so that you don't fall over. Fine-tuning of coordination is further helped by the cerebellum. For instance, while you are concentrating on your trunk and arms, your leg and back muscles have to adjust and maintain their tone to help you remain steady and upright--which is where the cerebellum comes in." I hope this is of help to those that inquired. Anita Croce, North Central District Director, BEBRF
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Posted by: Sally - in - Idaho ®
12/13/2002, 00:11:24
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Thanks, Anita. I have balance problems and almost flat feet.Sally in North Idaho
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Posted by: Edith nalepa ®
12/12/2002, 22:46:32
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Dear Friends, I am convinced that some of this balance problem has something to do with Botox. I am about 11 days after botox and am again having problems. I get injections only on the left eye and face, and today I am vering to the left and at times in danger of falling. Also vision is distorted. This has happened after the last 3 times I have had botox.In about a week it gets better.I hope this info. helps. Edith who is now a Fl. resident, we sold our Ohio home.
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Posted by: Kathy in Oregon ®
12/13/2002, 09:00:24
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Since botox does paralyze the muscles , do you then think some of it goes to the brain or what?
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Posted by: Joanne Matuzas ®
12/12/2002, 23:52:51
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I have not experienced this problem myself but have had questions
from some members of my support group about it. There are several
patients taking Neurontin and it seems to cause imbalance or unsteadiness especially at higher dosages. I'm convinced that other meds can as well--klonopin was mentioned here as well. With the changes in our body chemistry as a result of meds and attempting to keep the eyes open, I'm sure it is all somehow connected. Be interested in reading the article Anita Croce mentioned. Joanne M. San Diego, CA
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Posted by: Delaine Inman ®
12/13/2002, 08:43:11
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As I said, I've had these balance issues long before Klonopin, Botox, or BEB and even before fibromyalgia. They just seem to have gotten worse as each of the other things have been introduced into my life. Fibromyalgia is a brain disorder too even though it was ignored for years and then put under the "arthritis category" even though it is not arthritis. I still think FMS and BEB are disorders coming from the same area of the brain in the basal ganglion which affects different muscles and balance. I ran into things as a child and my body ached and I was told it was just growing pains. I've always looked abused from walking into furniture and misjudging corners and walls. I think we can be predisposed to getting FMS & BEB and events such as trauma (both physical and emotional), medications, dry eyes, and chemical imbalances bring on the symptoms at certain points in our lives. That's my 2 cents.
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Posted by: Kelly Saffell ®
12/13/2002, 10:33:50
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I honestly can't remember if I bumped into things as a kid (I'm sure my mom would.) But I do know that Morgan is incredibly clumsy when it comes to the simple things in life. She can dribble a soccer ball the entire length of the field and never lose control, is a brown belt in karate, and can perform dance moves the very first time she sees them but she can't walk around a corner or sit in a chair with out falling or stumping her toe. She also gets "growing pains" in her legs at times.
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Posted by: Moderator-JB ®
12/13/2002, 20:31:11
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Delaine,Hmmm ... you've brought up an interesting point with reference to childhood co-ordination, or rather lack thereof. I couldn't climb a tree to save my life. Running? Forget it. As for playing catch with a ball, my brother finally decided I could chase all the errant balls that flew inevitably into bushes, fields, bramble patches, etc. Swimming, though I loved it, only worked on one side. 'Growing Pains', have been visited on this BB a while back. Legs, I believe, were mainly affected when trying to get to sleep at night. (Sounds like a forerunner of RLS (Restless Legs Syndrome) to me. That's strictly a guess. How about the rest of you out there. Were you physically coordinated or ? Judy
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Posted by: Sally - in - Idaho ®
12/13/2002, 22:50:28
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Physically co-ordinated? Hah! Forget it. I was always last chosen in any game that involved running, catching, hitting, climbing, etc. First chosen, however, in spelling bees, play parts (memorizing), music and other cerebral undertakings. But let's face it: to kids, excelling at sports is everything.Sally in North Idaho where it doesn't look like Christmas.
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Posted by: June in Toronto ®
12/14/2002, 05:34:08
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No problem with physical coordination here as a youngster, Judy. I can still do all the called-for moves in an aerobics class today, even with a new instructor. I don't have to look at what she/he is doing just listen to the moves called. The lack of balance I experience is when I'm doing everyday things and am not really focused completely (as in aerobics) - I still think mine is because my brain is struggling with my eyes, my hearing becomes muddled and I lose balance!June in Toronto who can't possible do aerobics all day, but my eyes do seem better during that 1-hour class:-)
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Posted by: Delaine Inman ®
12/14/2002, 07:41:44
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Oh I could do aerobics, but leaving aerobics I might hit the wall with my shoulder when I rounded the corner or stub my toe on a piece of equipment. I was a cheerleader in high school, but I couldn't hit or catch a baseball as a child. My bed had a low foot board and I kept bruises from running into it and the door facing as I left the room......It was worse when I first got up or if I was tired. That kind of thing followed me all the way to 52 and has gotten worse. What Sally described in open spaces is very familar too.
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Posted by: Kathy in Oregon ®
12/14/2002, 08:48:41
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No! I was the tallest girl in my class in the seventh grade . Our physical education programs in the midwest were like olympic training and i had a hard time with it all. Like climb a rope to the ceiling? My arms were not strong enough to even hold on. I could also do swimming rather well. It was only later in life thru jazzercise , aerobics and other programs that i was able to build up strenght enough to do complicated physical things. And that is why i also need to get back into it or you lose that strength and muscle and your health becomes worse.
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Posted by: Kelly Saffell ®
12/14/2002, 10:56:27
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I was a gymnast when I was younger and in elementary school I could beat all the boys at running, pull ups, push ups, advanced swimming classes...I played volleyball in high school and currently do yoga and weight training. However, like Delaine, I hit every corner I turn and even ran into a car mirror a few weeks ago - talk about hurt! My daughter is just like me - amazing athlete but can't walk around a corner without hurting herself.
Kelly
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Posted by: Sally - in - Idaho ®
12/14/2002, 22:05:03
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Outside mirrors on cars should be outlawed!! I walked into one of those darn things recently, too. Hurts! Embarrassing!Sally in North Idaho where it's still drizzling and dreary.
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Posted by: Ann Doyle ®
12/15/2002, 11:29:52
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Can't do that Sally. Yesterday I walked into my refrigerator at full speed face first(yes, while turning a corner)and we can't outlaw refrigerators. Maybe all car mirrors should be made of chocolate coated rubber. Ann D.
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Posted by: Shirley-Arkansas-USA ®
12/15/2002, 10:49:15
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I was never physically coordinated. Tend to stumble over my own feet and also was always the very LAST person to be picked in elementary school and Jr.High for any type of sports. No cheerleader here. :-(
Also had the "growing pains". I remember crying at night with my legs cramping and hurting very badly off and on for years.
I couldn't catch a ball or throw a ball. In late teens and early twenties, I tried very hard to learn to throw a frisbe correctly. I can throw one but there is no telling where it will go. I took tennis in college and the instructor just shook his head and passed me with a C for effort. Bowling-well let's just say that it is dangerous to stand behind me. Anyway, you get the picture. I can laugh at it now but it didn't use to be very funny for me.Shirley in Arkansas
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Posted by: Delaine Inman ®
12/15/2002, 11:40:42
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I can so identify with everything you said with me too. The cheerleader part was in a small school in a rural area. 64 people in my graduating class from the entire county. Cheerleading was more like a dance to me which I love and could do. I was never atheletic and would not have made the squad in a large school and today's cheerleaders have to be gymnastic experts, which I was not. I could not turn a cart wheel to save my life.
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Posted by: Shirley-Arkansas-USA ®
12/15/2002, 12:02:33
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ahhh! Dancing I could do. Give me music and the body becomes much more coordinated. We're even-I wasn't a cheerleader but I could turn cart-wheels and do backbends, etc. 400 + people in my graduating class.Shirley
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Posted by: Sally - in - Idaho ®
12/15/2002, 17:09:15
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Four (4) in my graduating lcass. We three remaining girls (our one and only boy passed away in his fifties) got together for a luncheon last summer to celebrate our 50th. Seems such a short time ago, but so much water has gone under the dam since then.Sally in North Idaho where we saw the sun today.
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Posted by: Delaine Inman ®
12/15/2002, 21:44:16
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Sally from the 1st-6th grade there were 3 people in my class and then they closed our little community school and bused us 17 miles away and there were 21 in my class in the big town of Linden. Boy was that a shock. The girl I went to school with for 12 years and I still keep in touch and she did well like I did with the move to a bigger school. The third person...a guy...had been smart and competive with us until we moved to the big school and he just never tried anymore to do anything but get by and barely cheated his way through high school and has had a very sad life with drugs and alcohol. His Dad was an alcoholic, but it was still sad to see the change in him.
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Posted by: Kathy in Oregon ®
12/16/2002, 08:30:01
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yes i can do this also (when was the last time??). Music always helps one relax.
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Posted by: joyce whitt/NC ®
12/16/2002, 11:14:37
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I HATE TO BRAG --BUT--- I was a tomboy growing up, rode my bike everyday, everywhere. I played backyard softball, learned to swim when I was about 12 and later on in life played church league softball (coach, played 3rd base and left field). I could catch all those really high fly balls. (Played softball up into my 50's) When the children were young I helped as a volunteer in teaching swimming at the local City Lake for 5 years. (same place I learned as a child) Forget bowling, miniature golf, and dancing, too self conscious to do those.I don't have balance problems when my eyes are shut but I do feel off-balance some of the time. I thought maybe the med's I take might be the source of that. Joyce in NC who still has a 12 yr. old inside that wants to come out and play.
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Posted by: Kathy in Oregon ®
12/17/2002, 09:07:11
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Those things you mention do make one feel that way sometimes. i just like things i can do with my own body alone. I just have never possesed a jock mentality. AND i am not saying anyone else does . oops, except for one thing, it does take 2; in most cases only 2. But that is not exactly a sport.
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Posted by: Sally - in - Idaho ®
12/13/2002, 00:15:31
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Kelly, I have balance problems and know that if I were ever stopped by the State Patrol on DUI suspicion, there is no way I could walk a straight line.The problems is worse for me when in open spaces; I tend to veer off to one direction then. It is better controlled when I am in some sort of enclosure as I have a habit of trailing my hand along the side of walls, chairs, whaterver. Outdoors, there is nothing to relate to nor to touch, except in parking lots where I go from car to car feeling them. I do not have high arches ... almost flat feet. Sally in North Idaho
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Posted by: Evelyn ®
12/13/2002, 20:55:24
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I don't have BEB, but I have balance problems from losing my hearing, I assume. I have only recently been able to walk by myself outside at all. I still hang on to whoeveris available when I go anywhere. I do quite well most of the time when I'm indoors. There's something about those wide open spaces that gives the brain a scare.
Evelyn
--modified by Evelyn at Fri, Dec 13, 2002, 20:58:33
Modified by at Fri, Dec 13, 2002, 20:58:33
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Posted by: Alan Phair ®
12/13/2002, 07:54:37
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Kelly, I have had balance problems ever since I have had the BEB. For the most part, I attribute it to the eyes closing. My neighbors all know by now that I am really not drunk but sometimes at stores, it is a little awkward. It could be the medication reacting differently at other time too. Depending on whether I take it with an empty stomach, or at a closer interval it could affect things. If you are having a lot of serious balance issues, I would look to the medication as the culprit...Alan
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Posted by: Kelly Saffell ®
12/13/2002, 10:27:36
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I definitely think my meds are affecting my balance and coordination. I combine 2 meds daily and I sometimes forget to take my 3:00 dose when things are hectic with the kids' schedules so sometimes I take it late. If I would learn to stay off of things, falling wouldn't be a problem but I can be quite stubborn so I will probably be climbing the attic stairs this afternoon while Cory is in preschool to organize my "Christmas stash."
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Posted by: Kathy in Oregon ®
12/14/2002, 08:53:36
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well, going back to the top of the tread, I just hope we're all not getting alzheimers as there is a definite balance issue there. Our newsletter mentions that there is no correlation between beb and eventual alzheimers and so far my brain is okay so I'll have to take comfort there.
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Posted by: Ann Doyle ®
12/15/2002, 11:46:17
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If we can't walk a streight line without banging into wall, does that mean that none of us will ever be Miss America and walk the aisle to "There she is etc.?" Now I'm really mad. Ann D.
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Posted by: Delaine Inman ®
12/15/2002, 21:51:02
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Not unless they put rails up and widen the run way........and those bright ligts have to go! We'll have to have a stand up comedy contest instead of the bathing suit thing and there is no way I'm wearing heels. The questions will have to be related to BEB and finding a cure and the judges have to be men with BEB........that is the only way I'll enter.
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Posted by: Kathy in Oregon ®
12/16/2002, 08:33:35
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Anyone who has worn high heels for years knows the damage they can do to your whole body's alignment, feet, ankles , abunch of stuff. Too bad they are sooo pretty!
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Posted by: Delaine Inman ®
12/16/2002, 10:20:18
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We've just been brainwashed that they are pretty. They are torture chambers, disfiguring and bad for every part of the body from head to toes. I promised my feet about 14 years ago I would treat them better than that.......I'd treat my whole body better than that. I don't wear things that button or zip in the back either or tight shirts or anything that is not comfortable! I decided that was an insanity I could give up......self inflicted misery.
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