Re: Looking Down
Hi Barbara,
You answered your own question. Your left eye is almost totally closed and your right eye is partially closed. Looking down is the easiest thing for you to do in your current predicament. While walking, I taught my guys a long time ago that they should (or at least one of them) lead the way as I knew that I could probably keep my eyes open just enough to watch their heels and I would follow their feet. They now know that this is the "gentlemanly" thing for them to do for me. They had to be retrained, just like my collie. If I can't look straight ahead, I usually can or could peek through little slits by looking down. You're right, though, this isn't safe when you are walking alone unless you know the area real well and then you can count on someone to have moved a "cabinet" or something that you will plow into.I must say this is not as bad for me now as it was before I had the limited myectomy but does still occur. Tell your family that Shirley says that it is normal to look down to at least be able to see where your feet are going and they should clear the way of any obstacle in your path that isn't above your head. I will always remember when I plowed into my son (I was carrying a metal mail box) and knowing that I had hurt him, he still very quickly said (after he got his breath back and I had started crying) that he was sorry, that it was his fault for failing to yield to a person with their eyes closed. The people in your work environment do need to understand that you may not see them coming and to be on the lookout for you coming around a corner or just walking down a hall. Are your eyes squeezing closed or are we dealing with a ptosis due to the botox and or apraxia? Aren't you glad that you went to the conference and learned about all these things? Although I could walk and keep my eyes open a little and look down, if I tried to read or watch TV or do needlework by looking down, my eyes would close. Bummer. Hopefully things will get better for you. Make a plan of action concerning your treatment and its effectiveness and try different things. Have a doctor that will work with you and try different things and know when you've tried something or someone long enough and if you aren't getting anywhere, move on. If you are unable to continue work without hurting yourself, don't kill yourself proving something. I never for a minute thought that I would ever be on disability until I developed this. And then I had the misfortune of having a doctor that tried to make me feel guilty when I told him that I could not work and asked him about helping me to obtain disability. He wouldn't write me a letter of support as he said that nobody with BEB ever got disability. Not so. It most definitely can be done. I'm going on about things that you haven't asked about so I will shut myself up. I've been where you are at. It's not fun.
Shirley in AR.
Re: Looking Down
I still contend that, for the safety of others around us, we should wear something that beeps when we start to move ... like the sound of heavy equipment backing up.On the serious side, I seem to always be looking down also. There is usually a little squint of an opening of my eyes if I look down and that is often enough to guide me. On the other hand, when I attempt to read, I have the most success by bending my head down, but looking upward. When the dentist has me upside down in the chair, my eyes open just fine looking at his ceiling. All sort of idiosyncrasies (I'm not going to look up the spelling!) go with this strange malady. Sally in North Idaho, where my Dolphin son is elated and my Raider son is dejected, but I attended an uplifting church service.
Re: Spelling Correct- and looking UP
Sally,
You may continue on in the spelling bee. :-) Your word was spelled correctly. I don't usually check people's spelling but did in your case as I know that you would want to be in the spelling bee.I, also can look up at the ceiling without difficulty. Those muscles seem to work properly and don't receive mixed signals from the brain. Shirley in AR. whose sons have left to go back to college. No more laundry to do. sniffle, sniffle :-(
Re: Spelling Correct- and looking UP
Thank you, Ms. Bee Master. I'll move forward (while looking down).Chin up, Shirl; those boys will soon be back again for more of Mom's TLC (thoughtfully laundered clothing). My sons all went to college close enough to home to bring their laundry regularly (sometimes a bit of laundry from other guys also!). Makes a mom feel loved. Sally in North Idaho where it is stifling hot this afternoon. I'm about to melt again.
Re: Looking Down
Thanks everyone. It's good to know I'm a pretty normal blephro!Shirley, I wish I knew whether the problem is ptosis or apraxia.
I had 50 units of botox on 6/25 & 50 more units a week later. Only two good days followed. When I was at the conference, Dr Stacey thought that closing my left eye was a sensory trick to keep my right eye open. When I got back from the conference, I had another 50 units of botox. No relief. Two and a half weeks ago, I went to an opthomologist for a good eye exam. The guy was local & I figured it couldn't hurt. Of course, I had no symptoms as soon as I entered his office. He glanced at the careful history I had brought, asked me to squeeze my eyelids, and ended up giving me 50 more units -this time only in the forehead and cheek (no ice, no EMLA - what a Prince!)
No relief as yet. Have I had too much botox? Is that why today I can barely open my eyes at all? I'm scheduled to see Dr Bressman in the City on 10/30 and I'm very hopeful that she will be able to help. Thanks for listening. Barb
Re: Frequency of botox-eyes won't open
Barb, I don't know if you have had too much botox or not. Some doctors will give the botox every 6 to 8 weeks, but not all. You were getting 50 units at a time. The first two times that you mentioned were fairly close together but totaled out to 100 units which is not necessarily too much. Then it was another 6 to 7 weeks before you had another 50 units. When you saw this last doctor, he apparently felt like you were still squeezing pretty good so felt comfortable enough giving you another 50 units in your forehead and cheeks. He probably looked at where the squeezing was coming from and placed the injections where he felt they might help.I'm glad that you are going to see Dr. Bressman. I doubt that she will give you more botox at that time, though. I believe that she is one that will not give botox any more often that every 3 months. I personally think that is a good idea at this point, though. Let it wear off and let her start from scratch. She has a good reputation and Mindy says that her injecting technique is really good and very easy. You'll be in good hands with her. The botox can weaken things so much that you can have difficulty opening your eyes. A ptosis is where one or both of your lids just kind of hang there at half mast (there doesn't have to be any squeezing going on). This is usually technique related and has to do with injecting close to the midline of the upper lid where the levator muscle is(the muscle that opens your eye).
Apraxia also can be in the absence of squeezing where you struggle and struggle to try to get your eyes to open but just can't seem to get those lids up and once you do, they close again. This can be due to a variety of reasons. Up at the top of the bb page where it says Main Pages there will be information on apraxia and ptosis that you can read (when you can). Sorry that you are having so much trouble. Hang in there. It does take a while to get dosage and sites adjusted for each individual. I'm proud of you for being so brave-without the EMLA or ice. You go girl. For me the thought of the injections around the eyes was much worse than the injections themselves. Shirley in AR.
Re: Looking Down
no! barbara. no matter what is happening in this current world, we are still stuck with our disabling BEB.it is also a leveler for me, because while we can conjecture on solving the world's problems and lament them, we also have severe limitations. i also look down alot , mainly because it's easier to have your eyes kind of go with the lids that don't want to open all the way alot of the time, and i have had several painful foot injuries that make me watch out for what i'm walking into.
Re: Looking Down
Hi BarbaraI, too, do this all the time !! Particularly around the property and as I often wear a hat outside in the sun and of course big dark glasses I often walk into things like overhanging branches etc. No great harm done to date. It is much easier on our eyes to look down - looking up can be a great strain. Lyn in Spring in Western Australia Why does the BB tell me I have an incorrect password EVERY TIME I log in to post, then accepts it when I type in the same word ??????
Re: Looking Down
The password thing happens to me, too. I don't have a clue why it bothers to say "Remember my Password" when it isn't going to do it.Looking down also allows you to not step in chook poop. Is there a special name for that in Australia? Be nice. Shirley in AR.
Re: Looking Down
Hi ShirleyNo, just the usual terms !!!! Lyn
Re: Looking Down
Lyn, I'm sure that many people are pleased to hear this (or not hear). I just had to ask.Shirley in AR.
Re: Looking Down
Shirley - while on the subject, there was an item on the news tonight about a group of 70+ ladies in Tasmania who decided to publish a fund-raising nude calendar with themselves as the stars (instead of the more usual sporting stars who are prone to do this sort of thing, at least in Australia !) One of the months featured was a lady feeding her chooks from a strategically placed bucket entitled: "From one old chook to another" or something similar - it was on and off so fast I couldn't read it all but that was the gist of it. I immediately thought: I must tell Shirley about this !!!
Lyn
Re: Looking Down
Lyn, that is hilarious. What a great idea for a fund-raiser though.
We don't have that many 70+ ladies on this board, but us 60+ ladies should get together for a nude calendar shoot, just think of the money we could raise for the BEBRF.Christel in Ca. who is ONLY KIDDING!!!
Re: Looking Down/ lyn and christel
maybe we could only be wearing our masks.
Re: Looking Down/ lyn and christel
Good Idea, Kathy. But you aren't 60+ yet, are you?
Re: Looking Down
There was a group of ladies that did just that a few years ago. I can't remember exactly where - may have been England or USA. The calendar was a huge hit, and it was available in all of the local book stores, etc. Attractively done, I may add! Mary
Re: Looking Down
I saw the ladies on T V They looked pretty good.
Colleen in IL.Ibet that we wouldsell a lot of calendars.
Re: Thanks for thinking of me
Lyn, Gee, thanks for thinking of me. We must get in touch with Nilda, our fundraising person for the BEBRF and get her thoughts on this. I'm sure Don Peaslee would approve it. (Sorry Don)
I could provide fig leaves if people were uncomfortable with just their satin masks on.
Or somehow we could incorporate this into the bowling fundraiser. Instead of buckets, people could hold bowling balls (high or low)in strategic locations. We could even "catch" people on the back swing. (Sorry, that was bad)
Another "eye opening" experience.Shirley in AR. who probably will be banned from any and all fundraising events.
Re: Thanks for thinking of me
well no, i'm not 60 yet. since when did age have exclusivity over this marvelous fundraising idea? lol!!!!!!
Re: Thanks for thinking of me
Kathy, since we older folks don't want to be seen next to gorgeous young bodies.Christel in Ca.
Re: Thanks for thinking of me
Shirley, Christel, Kathy, Mary, Colleen and Sally - the focus was on the CHOOKS not on the naked lady !!!!! I am glad it gave you a laugh - it appears nude calendars for fund raising are everywhere!! Lyn going out fully clothed to feed the chooks
Re: Thanks for thinking of me
Lyn, don't distract us with your chooks,just when we are having fun.Christel, who will never be seen in a nude calendar, chooks or no chooks
Re: Thanks for thinking of me
Me, neither ... not even wearing Shirley's fig leaves! And certainly not posing with chooks!Sally in North Idaho
Re: Thanks for thinking of me
Right, Lyn, and our focus will be on the bowling balls ,fig leaves and satin peeper masks.I'm surprised at the people that are coming out of the woodwork on this.
And they say, shame on me. Shirley in AR. wondering if Lyn talks to her chooks. She'll have quite a story to tell them today.
Re: Looking Down/lyn
nice to hear from you again lyn. i think you have to go thru the moderator who is judy if you have problems with this.
Re: Looking Down
Welcome to the company of those who do better looking down. If I watch TV I must sit right in front of it in a recliner back as far as it will go so that I can look down and see TV. My computer screen is sitting on a low table so I am looking down at the screen. I drive and ride better in my conversion van because I am looking down. I walk and talk looking down. I do better working in the yard because I'm looking down. Looking up makes my eyes close or spasm more. So tell your family they are very observant of one of the classic symptoms some of us have in common.
Re: Looking Down
I sure am glad for this board.. when I walk my eyes spasm shut and then my eyes and face is very sore and I have a headache most of the time. I hadn't figured out that looking down while I walk I can see the floor. How neat.... I can see alittle more than I thought. Tomorrow I have an appt. for my injections and this is a new optomoligist he said he might give me 100 units. I don't care right now since I haven't been able to open my eyes since last July 2000. I really want it to work.
Re: Looking Down
Hi Becca, I hope things go well for you tomorrow. I'm so sorry that you have had so much difficulty with this for that long a time. Let us know how things go. OK? We want to know so if you can post, do so.
Another thing that you might try is humming softly (but out loud) while you walk or do whatever and see if that helps your eyes to open for a while. It's called a sensory trick. When I first tried it, it worked for several months really well. Well, not great but it was an improvement. Then my brain caught on and it didn't help as much. A little bit of relief for awhile, though, is worth a whole lot sometimes.We'll be waiting to hear from you. It's been a while since you posted if you are the same Becca. Shirley in AR.
Re: Looking Down - 1st human collision last Friday
Barbara,I am noticing that I am putting my head back and looking out the bottoms of my eyes more lately. I had botox in July and guess the eyes are going downhill more now. I had my first human collision (spelling?) on Friday. I was walking through the office cubicles and before I could get to someone's cubicle my eyes closed and I found my hand touching someone's abdomen. My eyes opened to find the guy in the mailroom face to face with me. Needless to say we both seemed to be embarassed. I think he had cut the corner short and ran into me. I did not have any time to respond as I did not see him. Lucky for me he was carrying a stack of journals and they were between us. I told him that I was sorry and my eyes had closed on me. He is one of the people in the office that complained because I can no longer go out into the plant where the moving equipment is and he walks around the office and expects others to move out of his way. That is the reason I use my cane when the eyes are really bad to alert others to go around me. Hope everyone has wonderful fall weather as we have had this weekend in PA......Coleen
Re: Looking Down
My massager said my neck muscles seemed shorter in front than in the back. She said that was probably from too much looking down in most everything I do, ie work crossword puzzles, read, play cards, etc. She recommends standing up , looking up , taking frequent breaks from whatever I'm doing, & keeping the chin up. Now that I have BEB don't we look down, at least while walking, to be careful not to stumble, miss a step, etc.
Joann from Ark., temporarily in Shreveport with my 15 yr old grandson.
Re: Looking Down
Hi everyone, I look down also when I walk and even when I do that my eyes still close. My eyes close whenever any movement is involvment even riding in a car. I am wired wrong. I too tho look down at my computer and also the keyboard. I read on the Bulletin Board a long time ago, someone posted that when they walked backwards their eyes stayed open. I tried it a time or too and it did work, but who can walk backward all the time. I think you would be more likely to collide with someone or something.Joyce in NC whose broken foot has put a damper on my getting around. It takes all my energy to lift my 130 lb. body weight plus whatever this cast weights. I took 4 Motrin to day because I had a bad headache and it helped the pain in my foot also. I have to wear this thing until October 19th and then I will have to wear a shoe/boot.
Cane with rearview mirror
Have any of you seen the gag gift - cane with rear view miror, whistle, & more (I cant remember what). If walking backwards helps keep eyes open, it might be worth a try. I do volunteer work at a hosp. gift shop & they sell the canes.
Joann from Ark., reading BB in Shreveport.
Re: Looking Down
Walking backwards does not keep my eyes open either.
Joyce, your cast sounds like a major drag, I think you need to have
a "cast-off-party" come Oct. 19. What are you favorite foods, so we know what to bring.Christel in Ca. who thinks we should party while we can.
Re: Looking Down
Joyce, I can sympathize with you. I broke my heel last November and had a cast on for quite awhile. I weight almost twice what you do so you can imagine that I did not get around very well at all. I am sure that you will see progrss soon and it will get easier. As for looking down, I find that because of my Meige, my neck pulling just forces me to always look down. To be honest, I cannot remember when I first got the BEB whether I had that problem or not. I think that I walked into things more because my eyes were closed than if they were looking down. If you had followed my posts over that last few years, you would see (no pun intended) that I have walked into some very strange things which if I was only looking down, I would have seen. Anyway, I hope that your foot gets much better soon....Alan
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