Re: Just Talking/Diane
Don't get overheated in this weather! If you feel nauseous or dizzy after getting too hot, check your water intake and get in a cool atmosphere. You don't want to get a heat prostration or a heat stroke! And don't overdue physical activity in that temperature.
Re: Just Talking
Hi Dianne, here is a fellow North Carolina person who shares your misery with the hot weather. I think we set a record for that date. I too go to Dr. Dutton in Cary and really need the Botox also, but am not sure when I will get to go see him. We are having a debate (argument) whether the Botox is really doing me anygood and it is so far to go. Please everyone, say a small prayer for me to make the right decision. We all live different lives and even with this disesase our lives are very difficult and our decisions affect more than just us.
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Joyce in NC, who is in the house (basesment really)_ with the air conditioner running. (upstairs but it is nice and cool down here.
Re: Just Talking
Hi Joyce, in my opinion you really don't need to worry about making a decision about the BOTOX. I think that sometimes we don't know whether it is working or not but I always know when it is wearing off or is gone. Just wait a few months and if your lids don't feel like they are going to turn themselves inside out, you may not need the BOTOX. I'm just saying that I think that "time" will make your decision for you.
I don't mean to sound harsh and there are no easy answers for any of this but I think this one will answer itself.Shirley in Arkansas enjoying a robin nesting right outside my back door. We're going to have 3 babies. :-)
Re: Baby Birdies
Let us know when the little peeps arrive. Sounds exciting, even though I don't want to be close to birds. You need to have something to be Mother Chook to when the BB is calm.P.S. Southerners ... please keep your heat to yourself! I prefer what I've got now. Everything is green and cool. Sally in North idaho
Re: Just Talking
Shirley, I have already made an apointment with a neurologist here in town (did not know we had one here)A BEB friend susggested that I try him so I am. I will be armed with bunches of questions, after going through 4 doctors I think I will know what to ask, I hope. If he doesn't seem to care what I am going through or has an attitude with my questions, I'll just get up and leave. But he probably will be a very nice caring person. I go to see him Monday (April 22 at 1 pm. I am glad I got to see him so quick.
I am not in a good mood today, I woke up with my left eye hurting me (a lot) I have done no different - I load each eye at night with ointment and even have it by my bedside just in case I need it during the night. I have found out that drops are easier to put in also if you are lying flat on the bed. It has been all I can do today to keep my eyes open, because when one wants to close down, they both close down. I am wearing my sunglasses because the light hurts my left eye.I do appreciate all the help that this BB has been and also the support I get when I do post. I have had this condition for 5 years now, not counting the 1 and a half years of trying to find an answer. I have finally gotten up my nerve to write a letter to the editor of our local newspaper. I will send a copy to you if I can figure out how to do it. Wish me luck. Joyce in NC where the sun is shining but I am down in my cool basement typing away and going back to correct all those typo errors.
Re: Just Talking/joyce
I am sorry you are having so many problems.
Re: Just Talking/joyce
Kathy, I have noticed that you are a very caring person. You always have something positive say to people. God bless you for your sweet spirit. I feel much better today. My "pain in the eye" always comes with a bad headache. Maybe there is a connection there. Joyce in NC who just wanted to say thank you to Kathy and also to say that I would like to meet you someday. You sound like a person who would make a wonderful friend.
Re: Just Talking/joyce
Thanks, joyce! I often get upset about others problems even when i can't do anything about it. Maybe it's to not get upset over my own, Saw an interesting article in Prevention magazine about those with arthritis writing about their affliction and how it definitely helped them cope with it. The same thing is happening here on this bb; there are always people posting and discussing and trying to help. Luckily it is always here.
--modified by Kathy in Atlanta at Sat, Apr 20, 2002, 12:56:45
Re: Just Talking
HI JOYCE. HOPE THE NEUROLOGIST IS KNOWLEDGEABLE IN WHAT YOU NEED; EMPATHY GOES A LONG WAY, BUT I AM LOOKING FOR MORE. MY LAST APPOINTMENT ON THE 15TH WILL BE MY LAST..HOPEFULLY. ALL MY FRIENDS HAD ADVISED "SEE A NEUROLOGIST." HIS FIELD OF EXPERTISE DOES NOT INCLUDE BEB. BETTER LUCK IN NC. KITTY
Re: Just Talking/kitty
What were you hoping to accomplish with your neurologist meeting. Do you not think you have beb?
Re: Just Talking/kitty
Kathy, Oh, yes. BEB, motion frustrations, walk into people and walls, have to rest often in closed blinds room, isolate myself too much, add on macular degener., dry eye syndrome, ocular migraines--the migraines led me to the neurologist...mri (second one for me) and other tests came back "very normal brain", arteries looking good for my age. This neurologist is great in many ways, I suppose, big on empathy, taking two aspirin a day for stroke preventive meassure, he found the cortisone by family doctor caused lowering of immune system thus shingles. His (neurologist) expertise is in pain management, headaches mostly...I reacted to all his pain prescriptions, taking nothing at all for pain. Had some indept discussions along the line of 6/7 nerves, muscles, donating my "normal brain", what to expect in the progressiveness...worse thing that can happen..."giving up", shared materials from BEBR, and have mentioned being dismissed. "But I want you back in another two months." Next app. two months away; have told my daughter I would cancel. Having to see an MD f or eye prescriptions, another MD for BoTox, and staying with family MD who takes care of my annual physicals, etc between times. Sound like "Dead Man Walking"? Sorry about that. Looking for some better understanding about neck spasms, swallowering --progressive supra nuclear palsy. Just thinking about the Amazon Expedition energizes me ssomewhat. Have a tremendous amount of help with Bible school and work at it for weeks before it happens. I can do nothing alone. Nothing. Kitty
Re: PROGRESSIVE SUPRA NUCLEAR PALSY
Kitty, do you have PSP?June in Toronto (beb/meige)
--modified by June in Toronto at Sat, Apr 20, 2002, 19:01:09
Re: PROGRESSIVE SUPRA NUCLEAR PALSY/ june
june, do we know the differences between progressive supra nuclear palsy and BEB?? i understand Dudley Moore, the actor recently had problems with this.
--modified by Kathy in Atlanta at Mon, Apr 22, 2002, 18:04:25
Re: PROGRESSIVE SUPRA NUCLEAR PALSY/ june
I know one person here in Toronto personally who has PSP and he becomes unbalanced, appears drunk, can't walk backwards or even turn, can't talk unless very agitated, excited, etc. Oh but what a beautiful smile he has. I haven't looked up the true definition of the disease, these are just my observations. Unfortunately, Dudley Moore died recently, his PSP seemed much more advanced than the gentleman I know. I grew up in England when Dudley Moore started to make a name for himself at Cambridge Univ. (he was on a musical scholarship there I believe). He and Peter Cook (Dudley was so short, Peter so vry tall) wrote and acted in many, many skits - all comedy - I have an old record that brings back so many memories and good laughs. Dudley then went into movies. I understand he was to star in one a couple of years or so ag" with Barbra Streisand, but she refused to work with him because he was `drunk most of the time" - he wasn't - it was the PSP before he was diagnosed. His death is a great loss.June in Toronto
Re: PROGRESSIVE SUPRA NUCLEAR PALSY/ june
Thak you for educating us on some of this june, the article I read only mentioned that it was rare and occured in the same part of the brain as parkinson's. what a bummer for him to be labeled as such when he couldn't help it!
Re: Just Talking
The longer you take klonopin the less sleepy you'll be. At first, I got real tired & could sleep a couple of hours. I got so I'd set a timer to wake me after 45 min or so, because I wanted to sleep at night. Now I take 4 pills a day & don't need a nap, or even feel like it. My spasms are few. However I did have a limited myectomy in January & have had one batch of botox injections since, April 3.
Good luck, & I hope things get better for you.
Joann in sunny Arkansas
Re: Just Talking
Dianne, I can relate to your job predicament. The first year that I had BEB, I barely made it through the end of the school year (I was a school nurse). My supervisor knew that I was having problems. That summer was horrible. It wasn't until late in the summer that I finally got my first BOTOX injections and then they didn't work like I had expected. My supervisor kept calling me through the summer and asking how I was doing-my doctor was telling me to take a leave of absence-that I would be able to go back to work. I really didn't see how. There was a lot of pressure during that time about what to do or what I was actually going to be able to do. The school term started off and I used up all my accumulated sick days and checked in with my supervisor on a weekly basis. It was a very stressful time. I finally just said I wasn't going to be able to do it and resigned. It took such a great load off to not have to worry about "the job" anymore. I was lucky that my income was a plus but we weren't going under if I quit my job.
Do you really have to let your boss know right now? If you have the option to quit, it might be less stressful for you. If not, can you wait and take any sick leave and make the decision in a few months? I know that is not the best for the school district as it puts them short of people but it might be the best decision for you at this time.Shirley in Arkansas who is glad that Dianne has a place to unload. It works for me.
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