AM or PM


Posted by Ken C. , Apr 01,2002,13:26   Archive
I would like to ask you guys with BEB out there if your symptoms are better at night or in the morning. I have a reason for asking and after a couple of days I will tell you why. I don't want to influence your answers. Short replys are fine or type away. I always learn something here. Thanks so much, Ken



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by June in Toronto (June Floyd,June in Toronto), Apr 01,2002,13:39 Top of Thread Archive
My eyes are better in the morning, Ken - after resting them - even if I don't sleep so well they are at least full of night-time cream and covered up with a mask.

June in Toronto (beb/meige)




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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Sally - in - Idaho , Apr 01,2002,14:28 Top of Thread Archive
It varies. When I first get up in the morning, they are very bad and I stumble around (but I am NOT a morning person anyway). After awhile, they sort of wake up and do better. The remainder of the day depends on what I have to do: if I have to drive any distance, they get worse; if it is a take-it-easy day, they might be fairly good, tapering off to more strain and closing late in the day.

Sally in North Idaho




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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Joann Humphrey , Apr 01,2002,15:02 Top of Thread Archive
Better in the mornings. After 4 p.m. I do lots more blinking even tho I take clonazepam.
Joann In Beautiful sunny Arkansas, 78 degrees.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Pippa , Apr 01,2002,15:39 Top of Thread Archive
I am better in the morning, Ken.
Pippa



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Joanne Matuzas , Apr 01,2002,17:23 Top of Thread Archive
Used to be that I would be ok for a few hours upon awakening in the
morning and after some meds, it would continue to improve throughout
the day. Now, the symptoming begins immediately upon awakening and
comes and goes during the day depending on how I am feeling and how the meds are kicking in. I find that lately I have started becoming symptomatic again in early evening say 7 or 8pm. Just when there seems to be some rhyme or reason, it changes. The nature of this disorder..
Joanne M. San Diego, CA



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Shirley-Arkansas-USA , Apr 01,2002,17:31 Top of Thread Archive
Ken, when my BEB first started, I was definitely better in the mornings and my symptoms would progress as the day went on until I pretty much just gave up and went to bed.
After about 6 months to a year, my symptoms would be just as bad in the morning as in the evening.
Now, things vary like others have said but generally, I'm at my very worst first thing in the morning. Things usually improve somewhat later in the morning and then I never know how my symptoms are going to be. How's that for an answer? I wish that there was some consistency in all this-it would sure make life easier.

Shirley in Arkansas with BEB/Apraxia




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Re: AM or PM

Re : Re: AM or PM --- Shirley-Arkansas-USA
Posted by Ann Doyle , Apr 02,2002,17:49 Top of Thread Archive
Shirley just wrote my story word for word. Ann Doyle



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Virginia , Apr 01,2002,17:56 Top of Thread Archive
Now it is definitely better later in the day. But, like Sally, I'm not a morning person anyway.

When this first started it was evenings when I noticed it.




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Re: AM or PM

Re : Re: AM or PM --- Virginia
Posted by colleen , Apr 01,2002,19:34 Top of Thread Archive
I am a morning person. I try and get done with anything i want to dothen
The rest of the day it off and on. never know when
Here lately i have been waking up at night with them shut.
Bolleen in IL



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Dianne Beavers (dianne Beavers,Dianne Beavers), Apr 01,2002,19:57 Top of Thread Archive
Hi Ken,
When I wake up my eyes are ok for a short while. As soon as I get into a vehicle to go to work they start closing. I haven't been able to drive since January. They do poorly all day but are worst in the late evening until I go to bed.
Dianne B. from NC



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Tim Johnson-PA-USA , Apr 01,2002,20:03 Top of Thread Archive
For the first few years of BEB/Meige, my symptoms were better first couple hours in the morning. I always tried to arrange my schedule around those "good" hours I could count upon. But in the last 2-3 years that has all changed. Most mornings I awake with full-blown symptoms. Some days they continue until bedtime, even with rests and every possible treatment I know of to try throughout the day. Other days the symptoms do improve after rest, meds, etc. But every day by late afternoon to early evening, I am shutdown 90% of the time. This is the only really consistent thing I can count on, and I wish it weren't so.
Tim in PA



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 02,2002,02:48 Top of Thread Archive
My eyes used to be the worst in the morning. Now they seem to be better, but sometimes it can take hours for them to feel okay. The symptoms vary. Sometimes they are good at night, but being a morning person I am too tired to do anything but relax and I usually have to go to bed early.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Linda in CA (Linda Tuttle,Linda in CA), Apr 02,2002,03:55 Top of Thread Archive
It varies day by day and hour by hour. Sometimes the Klonipin seems to help, and at other times, it doesn't. At night, with all the lights on low or just the colored lights on, it is sometimes better.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Marlyn , Apr 02,2002,06:09 Top of Thread Archive
Hi Ken, I had to join the ranks. Most of what people have said applies to me too. But I needed to add that if it is a bright sunny day, the days are not as good. It is bad when we have snow on the ground with sun or not. My eyes are super sensitive to light.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Apr 02,2002,08:44 Top of Thread Archive
Ken, My symptoms are worse in the morning. My eyes start squeezing shut as soon as I get up and even the indoor lights hurt my eyes. I usually am doing every thing with my eyes closed. My husband knows to stay out of my way because we have colided many a time. As the day goes on they do seem to get better and by evening they are open most of the time.

Of course each day might vary if I go out - but I am better in the PM than in the AM.

Joyce in NC where the Sun is shining and I have to go out after while and the sun will close them down.




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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Shirley Shepherd , Apr 02,2002,15:48 Top of Thread Archive
Hi Ken, My eyes feel more relaxed when I first wake up. However the severity of my spasms are equally as bad in the AM and PM depending on what I am doing. Shirley in Atlanta



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Christel-California , Apr 02,2002,20:22 Top of Thread Archive
My eyes spasm quite badly in the morning. I'm not a morning person either, but don't think it has anything to do with it, since the eyes spasm badly after an afternoon nap also, one would think they'd be more relaxed for a while. Midmorning to early afternoon they improve a little, as a rule, then are quite bad the rest of the day. If I'm lucky my eyes may be quiet later at night, if I'm relaxed, alone and nobody is talking to me, but I can't count on it. There just isn't any real pattern to these symptoms.

Christel in Ca. BEB/MEIGE




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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Rita Molnar , Apr 02,2002,20:45 Top of Thread Archive
My symptoms are always better in the morning, even when my Botox shots are wearing off. This applies to my Meige symptoms as well.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Christine Grainger , Apr 03,2002,15:39 Top of Thread Archive
In the beginning my eyes were good in the mornings, not now. I'm not a morning person either and I stumble around. Evening is probably worst for me as I am tired and I want to watch tv but I can't.



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RESULTS Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Ken C. , Apr 03,2002,15:41 Top of Thread Archive
Thanks to all for doing my survey. It looks like from my best guess, we have 10 AM 2 PM and 7 variable. Certainly not scientific, but enough to tell me what I already knew. As fatigue and stress set in, the spasms seem to get worse, at least for me. I am trying to illustrate to my employer that I need a morning shift, as it is much easier to work after a good rest. I work in a union shop so there are other issues to deal with. Seniority rules, as it should, I just know that I can drive in to work in the dark a lot easier than midday blazing Texas Sun. I知 not counting on it but Ill let you know on this thread if any good news develops. Thanks again, Ken




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Re: RESULTS Re: AM or PM

Re : RESULTS Re: AM or PM --- Ken C.
Posted by Virginia , Apr 03,2002,16:49 Top of Thread Archive
Ken,
If the survey helps, that's good. But the main thing is explain that this disorder affects us differently and only you know when you are at your best. Your doctor should back you up on this. If I were working, I might have responded differently. I wish you success in working out your job situation.
Virginia in AL - you couldn't pay me enough to drive in to DFW at any time of day.



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Re: RESULTS Re: AM or PM

Re : RESULTS Re: AM or PM --- Ken C.
Posted by Scott Harvey , Apr 03,2002,17:07 Top of Thread Archive
Ken

just for the record and some food for thought for you. My eyes are closed every morning and remain so until I have my meds (Isoptin). I then usually am reasonably stable if I don't do anything that involves concentration. I have been keeping a close eye (pun intended) on what triggers closure - it is fairly consistent with me

1 hour of reading
30 minutes on the computer
2-3 hours of driving
2 hours of playing cards

interestingly TV doesn't seem to be a factor - probably because it is not something that you have a fixed focal point with.

Once the eyes have closed - usually left totally with right open about 25% - they will remain that way until the next morning and the next dose of meds. Additional doses of meds are not effective.

Good luck with your boss - I am off today to see a Dr about my application for benefits - hopefully will get a positive result soon.

Scott




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Re: RESULTS Re: AM or PM

Re : RESULTS Re: AM or PM --- Ken C.
Posted by Shirley-Arkansas-USA , Apr 03,2002,18:16 Top of Thread Archive
I agree with what Virginia had to say about this. Your employer needs to know that the disorder is somewhat unpredictable. Symptoms may change and what works for you now might not work for you further on down the road. They are going to need to be flexible. Good luck. You've been asking some good questions and given us food for thought.
Hang in there and let us know how things work out.

Shirley in Arkansas




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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Alan Phair , Apr 04,2002,11:12 Top of Thread Archive
Ken, as for the time of day relating to the spasms or how my Meige is, I certainly can directly connect the differences to the medication I take and when I take it. For example, my doctor will only prescribe the Klonopin .5mg for three times per day. I am firly convinced that I need it four times but he is afraid because of the nature of the drug. However, I am a big guy so my system is probably much different than a small woman for example. Anyway, I typically take a tablet in the morning when I get up at around 7:00AM. I then take one at around noon and then another one around 6:30. At all these times, the time that I feel pretty good is around 2:00Pm which is I think because I have a little of the &;00AM dose still in me and the noon dose is just kicking in. The problem is that when I wake up in the morning, my eyes are terrible. The noon dose has long worn off as well as the 6:00PM one so there is nothing in my system until the 7:00 dose starts to kick in which may not be until 9 or 10:00AM. I have tried taking a fourth dose at 11:00PM on occasions when I knew I had to be good in the morning and what a difference it makes for me. I am still trying to convince my Dr.

I also fee that the weather affects me particulartly if we have low barometric pressure when a storm is coming or it is just rainy. A sunny day is so much better even if the bright sun is worse for me. Then again, everyone feels better when the weather concitions are good BEB or no BEB....Alan




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Re: AM or PM

Re : Re: AM or PM --- Alan Phair
Posted by Shirley-Arkansas-USA , Apr 04,2002,12:35 Top of Thread Archive
Alan, I can so relate. My eyes are terrible in the morning until the medicine starts to work. I can tell when it is wearing off but I still try to space the Klonopin and Benadryl out for as long as I can. I do remember those days in the beginning of BEB that I had good mornings. Now, I wake up with the eyes being really bad. Some days I will get up early, take my Klonopin and Benadryl and then go back to bed and listen to the morning news with my eyes closed. In about an hour, it is easier to get up and shower and get on with my day.
My symptoms through the day do largely depend on the medication with other external factors adding to the equation (such as weather or stress).
I've intentionally not taken any of the Klonopin or Benadryl for a day just to see what happens. Total shutdown and then it seems to take longer for my eyes to do "well"(if you can call it that) when I start the medication the next day.
I agree with you that you could take a fourth dose of the Klonopin at .5mg. Ask your doc again and tell him he can worry if you keep asking him to increase it. I think that for most of us, we can find a dose that works for us and be able to stick with it without increasing the dosage.

Shirley in Arkansas who does best on those sunshiny days, too.




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Klonopin dosage

Re : Re: AM or PM --- Alan Phair
Posted by Virginia , Apr 04,2002,16:50 Top of Thread Archive
Alan,
Have you tried splitting the tablets and spacing them more throughout the day - for example, take a whole one first thing in the morning and then half the other 2 and take them every 3 to 4 hours or so? I do fine most of the day with just one in the morning, but I take an extra half in late afternoon because I'm a little better first thing in the morning when I do. May not work - just a thought til you get the doctor convinced.
Virginia in AL - also better on sunny days, but the wind we've had lately is not fun.



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Re: Klonopin dosage

Re : Klonopin dosage --- Virginia
Posted by Alan Phair , Apr 04,2002,20:36 Top of Thread Archive
Virginia, thanks for the input. I just might try that and see what happens. I may just go around my eye Dr. and have my GP prescribe the Klonopin 1 Qid.....Alan



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Re: AM or PM/barometric pressure

Re : Re: AM or PM --- Alan Phair
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 05,2002,06:11 Top of Thread Archive
The barometric pressure is also a very strong factor in my eye spasms and that is when I have to really up the celebrex. I can also feel storms in advance.



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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Kathy in Atlanta
Posted by Pete in Or. , Apr 05,2002,10:48 Top of Thread Archive
Same with me Kathy; been that way for years, and long before I had Beb. I generally get some type of body aches as if one had the flu, usually pronounced since I work outdoors rain or shine. Asperine usually helps with the aches, but the Artane does not always help with the spasms.
Pete in cool, damp Or.



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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Pete in Or.
Posted by denise mckew , Apr 05,2002,10:56 Top of Thread Archive
I am the same way - barometric pressure means more aches and spasms. One of my doctors told me that since I was not planning on moving to Arizona any time soon, that I have to learn to deal with it. Not too sensitive - but to the point. Weather here in Maine is finally getting spring like. Now I just have to wait for the wind to slow down.
Hate pushing drugs but I have done better with the aches since I started taking Paxil.
Take care,
Denise



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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Kathy in Atlanta
Posted by pippa (Pippa,pippa), Apr 07,2002,12:23 Top of Thread Archive
This is so interesting. I too am deeply affected by the barometer. I have intense headaches, can't open my eyes, and am so irritable when a thunderstorm is due. I have been like this all my life though, not just since I developed BEB.
Pippa



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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- pippa
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 08,2002,06:25 Top of Thread Archive
Thanks, Pippa. Yes it is interesting but unfortunate. So the barometric also closes your eyes? Does intense humidity also aggravate you?



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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Kathy in Atlanta
Posted by Pippa , Apr 08,2002,16:57 Top of Thread Archive
Intense humidity? What is that? Remember it is Scotland I come from! ;)) I don't really know, Kathy, as believe it or not we have had wonderful weather here during the last few months, although winter is almost past. So, not much rain which would be the norm, and would be the only way to get any humidity here. But I think I AM better in rainy weather slightly. I must look out for that.
I went sailing on Sunday for the second time this year and unfortunately this time I found I could not cope with the wind and the glare of the sun on the sea. It was very calm the first time i went out and dull, so the light intensity would maybe not have been as bright. But I had hoped that the humidity from being on the water would have helped. So I feel rather anxious about going again. And that worries me too because it is something my husband and I have always done together, to the envy of other sailors who normally can't get their wives, and therefore crew to sail with them. I don't want to spoil my husband's pleasure in it. So you can maybe understand my anxiety there.
Pippa..the anxious seadog! (Actually, my dog did pick up on my anxiety and it made her anxious and troubled too. Guilt, guilt.)



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Re: AM or PM/barometric pressure/Sailing Glasses

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by June in Toronto (June Floyd,June in Toronto), Apr 08,2002,19:09 Top of Thread Archive
Hi Pippa,

Debbie e-mailed me and told me the make of sun glasses she wears and, lo and behold in the newspaper today, there was a `Shoestring Shopping Guide' (cheap places to shop for bargains) that advertises a sale of more than 2,000 brand name sunglasses and accessories. I phoned them to see if they had the brand Debbie told me about and, in general, to ask about wrap around glasses. A very knowledgeable lady told me lots of stuff - especially mentioned that they had POLARIZED snow and water sports glasses (I'm not 100% sure they ar wrap around). Polarized lenses are darker than most. Last time I went out on a boat I wore 2 pairs of wrap around sunglasses and it really hurt my nose with the weight. So I'm going to check out this store for sure asap. Perhaps you can check out the polarized lenses `over there' - that plus a visor should help you a lot - hate to see you give up going sailing with your husband. Good luck

June in Toronto (beb/meige)




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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by Gisela (Gisela Rentmeister,Gisela), Apr 08,2002,22:53 Top of Thread Archive
Don't give up on sailing, Pippa, if that's any possible. It's got to be one of the most stress relieving activities there are. Even when the lake becomes rough and we have our work cut out for us, especially on the Hobie cat, it's pleasantly hectic, and stress is the last thing one feels.
You are right, of course, about the intensity of glare on sunny days. I always wear my visors and the darkest sunglasses I own on the water, but only those with protective temples. There are my "CD"s with a very wide solid temple that protect you quite well from sun and wind, which I take with me wherever I am and are perfect for skiing as well underneath goggles. Then there are those with protective leather on the temples and the ones I use when driving the motorbike.
These also have wide temples but have large see-thru areas in them, which are necessary for shoulder checks. You, June, will know what I mean since you also enjoyed riding your motorbike and of the freedom and joy open air movement generates. I refer to mine as "my psychiatrist on wheels". You leave with stress and return without it.
We'll probably be able to continue sailing, but my days on the bike, even the good days, are numbered, no doubt.

Best wishes and keep the wind in your sails!

Hugs, Gisela - on a beautiful sunny Okanagan day.




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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Gisela
Posted by Pippa , Apr 09,2002,16:45 Top of Thread Archive
Oh you are so encouraging! What do you mean by CD's and visors though? How brave to go on a motorbike too! it strikes me from reading the Bulletin Board the last couple of weeks that we are a pretty active lot, or have been until this "frustrating inconvenience" as I mildly call it with some understatement, struck and seem to be the same type of person who gets ME...(ie something Fatigue Syndrome?)
I am having a very bad day today. I was fine until I sat down to watch the Queen Mum's funeral and just watching the cars moving triggered off the longest spasms I have had yet. I was desperate to go the toilet and asked the friend sitting with me to make sure I didn't bump into the iron standing on my ironing board when i was making my way there hands outstretched. "You're clear!" she said and let me walk straight into a chair! Which I fell over. Then she watched, probably in amazement, as I then extricated myself and still with hands stretched out walked into a jutting corner on the wall, hurting myself. I was so upset. Just how do you explain to people that you can be fine for hours and then this happens and you need help. I don't want it all the time, but when I ask for it I expected her to understand that I needed to be told if I am in danger of hurting myself. This continued for 2 hours,and then my eyes started opening again for longer over the next few hours. But my confidence has taken a battering today. Both in myself and in other people. I suppose i should be charitable and say that she has never seen me that bad before, but I've got a sneaking suspicion she thought I was putting on an act. And that does upset me, and worry me.

Pippa, relieved to be able to pour this out to you lot.




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Re: Pippa Falling!

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by June in Toronto (June Floyd,June in Toronto), Apr 10,2002,07:46 Top of Thread Archive
Glad you told us about your accident, Pippa - sorry you had to go through this, but it seems to be par for the course with beb! People (family/friends) just don't live in our shoes and can't possible imagine what we are experiencing. Even telling my husband over and over again he doesn't always get it, and I can't blame him. I try to understand his medical problems but I'm sure I don't fully. Perhaps we have to change somewhat - had you asked your friend for her arm to lead you to the washroom it might have convinced her of the dangers more easily. Try it next time (I hope there isn't a next time though).

The Queen Mum's funeral was so sad. I enjoyed seeing pictures of London as I was born there. Poor Charles looked really upset.

DO TAKE CARE

June in Toronto (beb/meige)




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Re: Pippa Falling!

Re : Re: Pippa Falling! --- June in Toronto
Posted by Pippa , Apr 10,2002,09:56 Top of Thread Archive
I have just reread my message today, June, and Boy was I sorry for myself! As you say, it is par for the course for us. I think I was just too proud to ask her to take my arm as i thought I could blunder my own way about in my home. And yes it is difficult for even husbands to understand completely especially when we are never predictable ourselves. I will have to be the one to change and not be so proud, because my husband told me later she was upset for me. Now I feel guilty!
I think Charles got a lot of sympathy for not hiding his fee;lings. A real and modern man in many ways. I think he was very close to his Grandmother as she was more of a mother than the Queeen. she is very aloof and doesn't approve of him not being aloof to fit the image of Royalty. The Royal family are paying for that now though.
Pippa, feeling more positive today. Maybe the rehydration of my body and eyes has helped too.



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Re: Pippa Falling!

Re : Re: Pippa Falling! --- Pippa
Posted by Sally - in - Idaho , Apr 10,2002,19:37 Top of Thread Archive
I've always been a royalty lurker; in fact, when I was a little kid I thought I could grow up to be a princess.

Charles has never been one of my favorites, but I saw an interview with him right after the Queen Mum died and he seemed so genuinely sad to have lost this important person in his life. He said he had been much closer to her than to his mother. He came across as being much more human than ever before.

Sally in North Idaho who had the rude awakening of not turning into a princess!




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What do you mean I can't be a queen?

Re : Re: Pippa Falling! --- Sally - in - Idaho
Posted by Virginia , Apr 10,2002,22:21 Top of Thread Archive
Sally - you remind me of Lucy in "You're a Good Man Charlie Brown"

LUCY:

Linus, do you know what I intend? I intend to be a queen. When I grow up I知 going to be the biggest queen there ever was, and I値l live in this big palace with a big front lawn, and have lots of beautiful dresses to wear. And when I go out in my coach, all the people will wave and I will shout at them..... What do you mean I can稚 be a queen? There must be a loophole. This kind of thing always has a loophole. Nobody should be kept from being a queen if she wants to be one. IT担 UNDEMOCRATIC! It痴 usually just a matter of knowing the right people. I値l bet a few pieces of well-placed correspondence and I get to be queen in no time.

I know what I値l do. If I can稚 be queen, then I値l be very rich. I値l work and work until I知 very very rich, and then I値l buy myself a queendom. Yes, I will buy myself a queendom and then I値l kick out the old queen and take over the whole operation myself. I will be head queen. And when I go out in my coach, all the people will wave, and I will...




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Re: What do you mean I can't be a queen?

Re : What do you mean I can't be a queen? --- Virginia
Posted by Pippa , Apr 11,2002,03:36 Top of Thread Archive
Brilliant! Brilliant!



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Re: What do you mean I can't be a queen?

Re : What do you mean I can't be a queen? --- Virginia
Posted by Shirley-Arkansas-USA , Apr 11,2002,11:25 Top of Thread Archive
Virginia, I think that you are finally losing some of that shyness and starting to come out of your shell a little. :-) Or it could be the drugs. ;-)
Anybody that can quote Lucy, could not possibly spend all of their time in botanical gardens.

Shirley in Arkansas who can't quote Shakespeare much less Lucy.




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Re: What do you mean I can't be a queen?

Re : What do you mean I can't be a queen? --- Virginia
Posted by Sally - in - Idaho , Apr 11,2002,11:36 Top of Thread Archive
Virginia, you got my day off to a wonderful start! I loved it. Had forgotten that "Lucy" one. Are you a "Peanuts" fan also? I think they are just the greatest ... and so wise! I just looked at my cookie jars (I have Charlie Brown, Lucy and a couple of Snoopy ones) and told them I'd had a good reminder of them today. Now I'll have to dust them. I probably owe you (Lucy) 5 cents for that bit of knowledge, but you can put it on my tab.

Sally in North Idaho still mourning the death of the "Peanuts" creator. No other cartoon can take its place.




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Re: What do you mean I can't be a queen?

Re : Re: What do you mean I can't be a queen? --- Sally - in - Idaho
Posted by Virginia , Apr 11,2002,17:17 Top of Thread Archive
Yeah, I'm a peanuts fan. When I was in college taking a French class, someone gave me a book of Peanuts cartoons written in French. Much more fun to read than the text.

Virginia in AL, who figures you've already worked off the debt.




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Re: What about a princess?

Re : What do you mean I can't be a queen? --- Virginia
Posted by denise mckew , Apr 11,2002,13:31 Top of Thread Archive
I have a neice that insists that she will be a princess when she grows up. When her baby brother was born, she had to wear her velet dress, her best shoes, and her tiara. She has been wearing tiaras and jewels since she was three, she is five now. I hope the attached picture came out.
As for me, I want to be a mermaid. In warm tropical waters of course.

Uploaded file
Jacob7.jpg  



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Re: What about a princess?

Re : Re: What about a princess? --- denise mckew
Posted by Evelyn , Apr 11,2002,13:46 Top of Thread Archive
That's an adorable picture.
Evelyn



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Re: What about a princess?

Re : Re: What about a princess? --- denise mckew
Posted by June in Toronto (June Floyd,June in Toronto), Apr 11,2002,14:18 Top of Thread Archive
What a couple of cuties! Thanks for sharing.

June in Toronto (beb/meige)




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Re: What about a princess?

Re : Re: What about a princess? --- denise mckew
Posted by Sally - in - Idaho , Apr 11,2002,15:24 Top of Thread Archive
Such an adorable picture! Thanks for sharing.

Sally in North Idaho who never wanted to be queen, just the lovely princess.




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Re: What about a princess?/Denise

Re : Re: What about a princess? --- denise mckew
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 12,2002,09:16 Top of Thread Archive
How adorable! I wouldn't mind being a mermaid. Of course I'd have to take my lower half off and get me some legs to go get my injections. I wonder if they look good in glasses.



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Re: Pippa Falling!/sally

Re : Re: Pippa Falling! --- Sally - in - Idaho
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 11,2002,06:00 Top of Thread Archive
Sally, i tried to e-mail you and e-mail was returned? What happened?



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Re: Pippa Falling!/sally

Re : Re: Pippa Falling!/sally --- Kathy in Atlanta
Posted by Sally - in - Idaho , Apr 11,2002,11:38 Top of Thread Archive
I have no idea, Kathy. That has happened to others. In fact, Shirley had to set up a special account to keep our correspondence going. Now that really makes me feel like a VIP!!! My e-mail address has not changed, but I have put it on this message. Please try again. I miss hearing from you.

Sally in North Idaho who gets perturbed with the ISP!!!! (And I don't mean the Idaho State Police ... so far, I'm okay with them!)




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Re: Pippa Falling!/sally

Re : Re: Pippa Falling!/sally --- Sally - in - Idaho
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 12,2002,09:19 Top of Thread Archive
the same thing is happening with shirley when i try to write her.



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Re:falls

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by Shirley-Arkansas-USA , Apr 10,2002,10:55 Top of Thread Archive
Pippa, your experience reminded me of the time that my husband and I went to visit my father at the assisted living facility where he lives. In the lobby area, there are chairs all around for people to sit. This was at a time before my surgery and when I was being led around quite a bit. As we finished our visit and were leaving, I was having a great deal of difficulty with my eyes. I knew that the chairs were there but my eyes had closed and I misjudged where I was and I was in one of those independant modes where I felt that I could at least walk down a hallway which was clear the last time I managed to get my eyes open. My hubby was walking beside me and a little ahead and didn't realize that I didn't see the chairs. I took out three of them and went sprawling across them. I was unhurt and thankfully nobody was sitting in any of the chairs. I was horribly embarrassed and managed to keep my self together until we got outside where I immediately started crying and couldn't stop. I hid in bed for the rest of the day feeling sorry for myself. It did serve its purpose though unintended. My hubby no longer takes it for granted that I see an obstacle in the way. In fact both my sons and my husband watch me like a hawk-it's sometimes irritating. :-)
Whenever we go out anywhere, they are scouting for curbs, steps, cars and low hanging things. We'll be walking along and somebody will mumble "curb". What's amazing is that my sons can do this while checking out all the chicks, too. Multi-talented! :-)

I can really relate to you not wanting the help all the time but when we need it, it needs to be there for us. I'm not good at stopping when my eyes close although I am better than I was. It's a difficult situation as our friends and family can't read our minds and we don't know when we are going to need someone's help. But it is a given that those that love us and have seen us fall, will be more vigilant for us whether we ask them to be or not.

Shirley in Arkansas Beb/Apraxia




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Re: Re:falls

Re : Re:falls --- Shirley-Arkansas-USA
Posted by Pippa , Apr 10,2002,14:41 Top of Thread Archive
I don't know why your letter made me laugh..it is quite sad really isn't it the pickles we get into...but my imagination took flight at the thought of all the old folk watching you fly across three chairs...and of your sons with eyes going in all directions to check EVEYTHING out. What a nice family you have.
Do you walk with a stick when you are out? I have given in to getting one of them and sweep it out infront of me when I am walking. Dear help anyone who stands in front of me!
Can you tell me how Apraxia affects you? I think i may have it but the consultnt hasn't mentioned it to me. i find that when the spasm stops my lids still stay shut for a few seconds to maybe minutes and they just gently "let go" or "unzip", and open, sometimes ever so slowly. ( and yet sometimes theyjust fly open if i think i am going to bump into something.) The Botox has stopped the severe spasms and just now it is just that they close as though they are zipped up. But I am aware of a period of them not wanting to open immediately after that. Could this be what you experience with apraxia? Or is it just how the Botox works?
Pippa from Bonny Scotland, with all the Daffodils continuous as the stars that shine.....



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Re: Apraxia of lid opening

Re : Re: Re:falls --- Pippa
Posted by Shirley-Arkansas-USA , Apr 10,2002,15:28 Top of Thread Archive
Pippa, it is rather funny now when looking back at it.
I've not attempted using a walking cane. Others on the board have used them, though. At that point when my symptoms were so very bad, it probably would have been the thing to do.
My apraxia of lid opening is best described by saying that my brain is telling my eyes to close. BOTOX takes care of the intense squeezing but my eyes still want to stay closed. When they are closed, it is very difficult to get them open. (This is better since my surgery, but still there). It may take me 20 to 30 seconds to open them. I'll lift my brows, or shake my head or grimace in varying ways to try to get them to open and then they immediately want to close again. Benadryl helps this for me. If I don't take the Benadryl, I might as well go park myself somewhere. It is kind of like my brain is not getting the proper signals. At times, the harder I try to open them, the more they will squeeze closed. To me this has got to be signals in the brain malfunctioning for some reason. I took Adderall (a stimulant drug) for about a year and it helped with this problem but with it being a central nervous system stimulant, it also increased my pulse rate and blood pressure so eventually had to stop taking it. Adderall is a drug similar to Ritalin or Dexadrine that is used for kids and adults with attention deficit disorder (hyperactivity). They believe that these stimulant drugs help people with ADHD by helping the neurotransmitters in the brain to connect properly. I also feel that is how it helped my apraxia problem.

It does sound as though you may have apraxia of lid opening. Different doctors define it differently. I'll post a link to the site telling about apraxia.

http://www.blepharospasm.org/blephar4.html#A1

Shirley in Arkansas




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Re: Apraxia of lid opening

Re : Re: Apraxia of lid opening --- Shirley-Arkansas-USA
Posted by Evelyn , Apr 10,2002,23:23 Top of Thread Archive
Hi Shirley, Even without having BEB, I can relate to so much of what you go through. I have to hold onto someone's arm when I walk outdoors, unless I use my walker. When I was legally blind, whoever I was hanging onto had to say, "Step Up, step down, watch out for this, watch out for that". It's somewhat better ater my surgeries, but I'm now experiencing dry eye...just got Refresh liquigel tonight, burry vison, even after washing as best I can, the Refresh PM away in the mornings. I'm just feeling alone and sorry for myself, I guess. I miss the visits of friends and my granddaughter, who rarely come anymore, and the LOOONG, rainy months have seemed endless. Thanks for letting me vent..even if you didn't have a choice:)
Evelyn



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Re: Long Rainy Months/Evelyn

Re : Re: Apraxia of lid opening --- Evelyn
Posted by June in Toronto (June Floyd,June in Toronto), Apr 11,2002,05:13 Top of Thread Archive
Cheer up, Evelyn, better days ahead I'm sure. Sorry you feel so gloomy but long, rainy months, can do that. I remember the rain when I lived in England! Did you see my post that I'd made your lasagna recipe and it was a great hit? We loved it - thanks so much for typing out the recipe for us. I trust you are putting in preservative-free eye drops during the day as well as at night? Do hope your dry eye gets feeling better soon. Vent anytime you want - you've listened to us long enough:-) Hugs,

June in Toronto (beb/meige) who is going for a glucose test today - a long 3-hour appointment!




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Re: Venting

Re : Re: Apraxia of lid opening --- Evelyn
Posted by Shirley-Arkansas-USA , Apr 11,2002,11:19 Top of Thread Archive
Evelyn, you know like June said that you can come here and vent anytime you want to. If you get too gloomy on us, we'll have to start telling jokes or talk about Roy's underwear or something. And Alan really does want to know if Sports Illustrated swimsuit edition is out in Braille. You maybe could check into that if you get bored.
Rainy, gloomy days really get me down, too, and they are also harder on my eyes.
Unlike June who has tried your lasagna recipe, I have not gotten up the nerve yet. I did buy a block of Tofu, silky style-firm. That was about the only thing that my local grocery had so I will probably need to go to the Health food store. At least I got to "step 1". And I figure if I don't get the rest of the items, I can always use that block of Tofu as a door stop. :-) Only kidding-I'll eventually get all the stuff and give it a try.

Shirley in Arkansas




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Re: Venting

Re : Re: Venting --- Shirley-Arkansas-USA
Posted by Evelyn , Apr 11,2002,14:19 Top of Thread Archive
Thanks, Shirley. I'm not quite as down today, and I think it will get better, as I just noticed that the sun has come out:)
Don't wait too long to use the tofu, or it will go bad. If I'm not going to use mine right away, I rinse it, drain it, put it in a freezer bag and freeze it till I need it. The consistency changes a bit after freezing, but it still works. If you wait too long, it won't be good even for a doorstop...it will be too moldy:)
Give us a joke anytime you like. The most laughs I get are usually here on the bb. I did get really tickled the other day. My brother and I were remembering funny things that happened in church when we were children, and how we would get the giggles.
Evelyn



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Re: Venting/Evelyn

Re : Re: Venting --- Evelyn
Posted by June in Toronto (June Floyd,June in Toronto), Apr 11,2002,15:22 Top of Thread Archive
Evelyn, I just posted to you under the heading 'glucose intolerance testing' - but I just wanted to tell you, what I thought was funny, oh so many year's ago and my hubby and I were laughing about it on our trip by subway to the hospital (for the testing) this morning.
I worked in London, England, year's ago and each morning got the steam train (with small carriage compartments, seating about 4-6 each side and maybe 4 standing, maximum) into the city (about a 35-minute trip). The train was stopped at a station and over the microphone came this voice saying "everybody please move into the carriage as there are many people trying to get on". A man, standing next to me strap hanging in the train said, I'm standing on one b.....leg right now, does he think I'm a ballet dancer?:-) I almost croaked with laughter - perhaps its an English-type joke and maybe nobody else will think its funny, but oh boy, I do.

June in Toronto with fond memories of the English sense of humour (I love those tv shows) and I hope I have some of it left myself!

--modified by June in Toronto at Thu, Apr 11, 2002, 18:36:08




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Re: Venting/Evelyn

Re : Re: Venting/Evelyn --- June in Toronto
Posted by Sally - in - Idaho , Apr 11,2002,15:31 Top of Thread Archive
June, I laughed. However, I do have English ancestry!

Sally in North Idaho who loves to have reason to laugh.




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Re: Venting/Evelyn

Re : Re: Venting/Evelyn --- Sally - in - Idaho
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 12,2002,09:22 Top of Thread Archive
Does tofu cause gas?



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Re: Venting/Evelyn

Re : Re: Venting/Evelyn --- Kathy in Atlanta
Posted by Evelyn , Apr 15,2002,23:44 Top of Thread Archive
I haven't been reading the bb since Thursday...did I miss something? I don't know if tofu causes gas. It doesn't with me.
Evelyn



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Re: Venting/Evelyn/tofu

Re : Re: Venting/Evelyn --- Evelyn
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 16,2002,06:03 Top of Thread Archive
I was wondering if it caused the same gas as those who had lactose intolerance, and had difficulty digesting dairy products.

--modified by Kathy in Atlanta at Tue, Apr 16, 2002, 06:04:45




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Re: EVELYN

Re : Re: Venting/Evelyn --- Evelyn
Posted by June in Toronto (June Floyd,June in Toronto), Apr 16,2002,10:11 Top of Thread Archive
Please see my post `Glucose Intolerance' - your comments/help would be appreciated.

June in Toronto (beb/meige)




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Re: Venting

Re : Re: Venting --- Shirley-Arkansas-USA
Posted by Alan Phair , Apr 12,2002,14:52 Top of Thread Archive
Regarding the SI Swimsuit edition, I checked and it is available in Braile. They told me that I could let my fingers do the walking...Alan



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Re: swimsuit edition in Braille

Re : Re: Venting --- Alan Phair
Posted by Shirley-Arkansas-USA , Apr 12,2002,15:08 Top of Thread Archive
Go for it Alan! I mentioned this to my sons and now they are eager to learn Braille. :-)

Shirley in Arkansas




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Re: swimsuit edition in Braille

Re : Re: swimsuit edition in Braille --- Shirley-Arkansas-USA
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 16,2002,06:09 Top of Thread Archive
they can play an adult edition of connect the dots.



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Re: Venting

Re : Re: Venting --- Alan Phair
Posted by Ann Doyle , Apr 14,2002,13:48 Top of Thread Archive
Alan, Catch the message at the top that I wrote to you. I still haven't figured out how to put a message where I want it. Ann Doyle



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Re: Venting/alan

Re : Re: Venting --- Alan Phair
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 16,2002,06:06 Top of Thread Archive
too funny!! be careful you don't get a case of russian hands and roman fingers.

--modified by Kathy in Atlanta at Tue, Apr 16, 2002, 06:07:54




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Re: Apraxia of lid opening

Re : Re: Apraxia of lid opening --- Evelyn
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Apr 12,2002,15:29 Top of Thread Archive
Evelyn, I find that the refresh liquidgel is thicker so it will make you eyes blurrier, but it is so soothing to the eyes. Again in life, we have to give something up to get something else that works better even if it does turn out to make our vision blurrier.

I have found too that family and friends are so busy with their own lives that they forget we need some company too, even if it is just a phone call. If you are feeling especially down, call them, of course don't let them know you are down, just say you miss them and try to recall a time that you had an especially good time.

I don't hestitate to call my family. They will not leave me out if I can help it.

Joyce in NC, who planted some azeleas today and hope they come up. I do not have a "green thumb". I have more of a "black thumb". My mother told me one time when I planted some seeds and they did not come up , the reason they didn't come up, I planted them upside down.




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Re:planting

Re : Re: Apraxia of lid opening --- joyce whitt/NC
Posted by Virginia , Apr 12,2002,16:01 Top of Thread Archive
Yeah, Joyce, it can be hard to see the "this side up" sign on those tiny little seeds. Don't let anybody kid you - almost anything will find its way up, even if you did plant it upside down. Azaleas can be picky though. I hope you did a little research on where and how to plant them.

Virginia in AL, where azaleas are in full bloom




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Re: Re:falls/Pippa

Re : Re: Re:falls --- Pippa
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 11,2002,06:07 Top of Thread Archive
Pippa, we have discussed this before. Sometimes it's adrenalin that opens our eyes and protects us.



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Re: Re:falls

Re : Re:falls --- Shirley-Arkansas-USA
Posted by Virginia , Apr 10,2002,16:58 Top of Thread Archive
"Whenever we go out anywhere, they are scouting for curbs, steps, cars and low hanging things. We'll be walking along and somebody will mumble "curb". What's amazing is that my sons can do this while checking out all the chicks, too. Multi-talented! :-)"

Shirley - their real priority is the chicks. They are only warning you of obstacles so you don't embarrass them in front of the girls. Also why they "mumble."

Virginia in AL, who has met one of these sons and understands.




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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by Gisela (Gisela Rentmeister,Gisela), Apr 11,2002,05:46 Top of Thread Archive

Sure hope, Pippa, you had a better Wednesday than that really tough day prior to it. There was no time this morning to read other posts but I am fairly sure that you had some responses - it's that kind of people on the bb.
I wish you a good morning, and hope the rest of the day is going to be a good one for you. --- Mine was a long one at the C.C.S. Centre (my reg. shift). I've just finished my last email replies and can't believe how late (or early) it is. However, before I go to bed I'll quickly answer your questions. My CDs are those sunglasses that have this brandname. Everyone in the house knows what I mean when I holler, "Has anyone seen my CDs?" Sorry, Pippa, force of habit made me mention them as such. -- Visors you can get in every golf store (and probably everywhere else). They are great to protect your eyes from sunlight that blinds you from above (that doesn't sound right ??). You still need your sunglasses when on the water to protect you from the glare. -- Motorbiking is no big deal if you do it long enough.

As to some of the activities I still try to enjoy, I guess I've mentioned them now and then on the bb because I thought if I can do it, others with Dystonia may too - to relieve stress, depression or even plain anger with this disorder. Feeling bad about mentioning them, considering the difficulties some of you have to deal with, I offer the following excuse: My siblings and I were forever told by our parents: "DON'T TELL US WHAT YOU CAN'T DO. TELL US WHAT YOU CAN DO." It's tough to hear that as a kid, but these words have done us a world of good in our lives. They are on your mind prior to a first solo flight, a first time on a bike, when protective steel of a car no longer surrounds you, the first time you find yourself on top of a mountain and at many other times when doubt and fear may otherwise overwhelm you.
I think of them now, when I can't eat, read and sleep normally due to Meige, and they help to remember that I've seen a blind person, accompanied by someone who was guiding him, enjoying the thrill of skiing, I watched someone else with one leg coming down the run, and I guess we all know of those wonderful athletes at the Special Olympics, none of them ever feeling sorry for themselves (so why do I so often) I still remember every moment of the days when my husband and I volunteered at the BCSO. These mentally challenged participants had nothing but sheer joy and excitement on their faces, all of them so proud of what they were able to do, even if they came in last in their field of competition. So what in heaven's name am I complaining about.

Thinking of all of these people, each one of them coping so well with their individal handicaps, has to, once again, help to put everything in perspective for me. Dystonia is after all only Dystonia, right, Gisela...

Gisela in beautiful British Columbia - who's happy that she's tired enough by now to fall asleep spasms free, who's pretty sure that this will be her last post for some time to come (gotta get to work outside)and who wishes everyone all the best 'til next time. GOD BLESS

P.S. Is there anyone out there who LOVES gardening ?? We offer warmhearted TLC and free accommodation - satisfaction guaranteed LOL. Just kidding. Who'd want to..., when there are 4 lawns (front, back & surrounding), a doz. fruit trees, countless shrubs, trees roses and an endless hedge - one can practically watch that one growing, crying for attention.

--modified by Gisela at Thu, Apr 11, 2002, 14:00:53

--modified by Gisela at Thu, Apr 11, 2002, 15:33:32




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Re: AM or PM/barometric pressure

Re : Re: AM or PM/barometric pressure --- Pippa
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Apr 11,2002,05:54 Top of Thread Archive
My animals ( a cat and a parakeet) also know when my eyes are bad and become very quiet, Or the cat starts demanding things from me and acts up.



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Re: AM or PM

Re : AM or PM --- Ken C.
Posted by Gisela (Gisela Rentmeister,Gisela), Apr 04,2002,18:16 Top of Thread Archive
Difficult question to answer, Ken, for me that is. After a good night's sleep my eyes don't usually spasm in the morning - i.e. what's left of it (I'm not a morning person). After a bad night with very little sleep, they definitely do - very much so. The same applies to any hour of the day: If I'm relaxed & happy with the world, my eyes are at peace. If stress of any kind becomes a factor, that little woodpecker in my head has a ball again.

Gisela - at peace on a perfectly beautiful Okanagan day.




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Re: AM or PM

Re : Re: AM or PM --- Gisela
Posted by catherine pender , Apr 04,2002,20:47 Top of Thread Archive
Gisela

I'm sorry I have been neglectful in welcoming you to our little world. It is a great source of comfort knowing others know what you are talking about. Have you been invited to a cyper party yet? They really know how to throw a party! They even come from all over the world just to join the party. Any excuse will do.

It is nice to see another Canadian on board. I have lived in Vancouver and all over Canada and the Okangan is definately up there in the beauty department. We drove through last October and have friends in Salmon Arm and Kelowna. I expect I will be back there in the fall. Maybe we could meet for coffee if you are along the trail

THere must be more of us but why are they all hiding. I have not even met one person here who has heard of blepharospasm let alone anyone who has it.


Come out Come out where ever you are.

Catherine




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Re: AM or PM

Re : Re: AM or PM --- catherine pender
Posted by Gisela (Gisela Rentmeister,Gisela), Apr 05,2002,01:56 Top of Thread Archive
Hi, Catherine,

I've been very fortunate to enjoy the warmest welcome messages one could wish for and thank you for your kind words as well. It sure felt good to become part of the bb family and share feelings (good & bad), knowledge and experiences regarding our disorder with so many wonderful people.

Have you checked whether there are Dystonia support groups in your city? There must be, since we in our relatively small town have one. You'll enjoy meeting people who are in the same boat, so to speak, as we are. By the way, I also enjoy having another Canadian on board - most of our b.b. friends live in the U.S., our southern neighbour.

Let me know when you'll be in Kelowna. I look forward to enjoying that cup of coffee with you.

Have a great time in Mexico. It'll do you a world of good. We'll follow May 6th for a couple of weeks - will be in Mazatlan this time.


Take care okay,
XXX from Gisela in beautiful B.C. - who's glad to have her P.C. back, which was totally monopolized by her teen grandsons.





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