Posted by: Cynthia ®
10/28/2003, 07:40:46
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Lyn,Congratulations in getting the attention of the media! Well done! There are always risks in "going public". From an entire segment, media can and does take out just the parts that confirm what THEY want to convey to the public. It's doubtful that you will lose your drivers license because of this, but your hesitation is certainly understandable. The last time I had my license renewed I replied truthfully to the question about anything that might hinder my driving. I wrote "blepharospasm". So far I've not received any citations or revocations :-) ! ! If you do decide to take the risk of being on TV let us know, and keep up the good work! Cynthia in IL
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Posted by: Lynn Yarbrough ®
10/28/2003, 12:36:48
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Going public is a courageous thing to do, and I recommend it. I have not, however, done this in any jurisdiction where it might imply criminal negligence or worse. A lot depends of what the laws are in your locale -- driving limitations are, in the USA, determined by 50 different state laws -- God knows what they are in other countries.Were I fortunate enough to be in your shoes, I would time the shots to be administered while you are at your worst spasming, so viewers can see what symptoms to look for, with a follow-up a few weeks later, so they can see the results and how well you can drive in those conditions. Since my period of treatment exceeds six months, the news media might decide to find another participant rather than wait for me ... Another thought: most of us, I think, have had the experience of spasming just about anywhere EXCEPT the Dr.'s office. Or, perhaps, a TV studio. A dry run to eliminate this potential embarassment might help. --- Lynn
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Posted by: Lyn Down Under ®
10/28/2003, 19:09:02
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Hi Cynthia and LynnYes, I agree - I NEVER have spasms while talking to the doctor ! Have replied asking exactly what would be expected of us and of course I would have to discuss it with the doctor first as he would have to participate ! I feel there are so many people out there who have the symptoms but have no idea what is wrong with them that I should do this. Not that is is going to be a pretty picture of the doctor injecting me - may even put people off their dinner ! Will post back when I have more news. Lyn
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Posted by: Mary, upstateNY ®
10/28/2003, 19:37:52
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Any chance that you could do it under an assumed name??!! I have to renew my license next week, and NY state requires an eye test. I do not intend to mention anything about BEB. It doesn't really affect my driving, anyway. Most of the time, I can drive. I do think it's a great idea! Mary
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Posted by: Rosie ®
10/28/2003, 22:16:24
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Well, seeing as how you like to drive, and need to, I would hesitate. That is one reason I don't apply for the free discounted cabs or the disability sticker for my car in my area,to get to the store, and doctors, etc; YOU have to go to city hall and apply....giving all the particulars of your disability... Hmmmmmm! something to think about isn't it? From city hall to the police dept. all is public info. So, it will be interesting to hear from others on this topic. You are damned if you do and maybe damned if you don't . Here all you were trying to do was offer a public service, What a shame isn't it? But, I would rather see you 'safe than sorry'.
Rosie
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Posted by: Lyn Down Under ®
10/29/2003, 02:18:49
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Hi Mary and RosieYes, it is the driving that is the main concern. Perhaps I could get them not to use my real name. Really, I consider Botox just the same as wearing glasses for driving - but would everyone? I think it is a great opportunity to promote awareness of BEB. The item would be solely on BEB and not any other medical condition. The reporter said the story would be " where we could shatter some of the myths about Botox and show its legitimate medical use". Sounds good to me. Of course I would have to get my doctor to co-operate and unfortunately he is recovering from heart surgery at present. I am going to ring his secretary tomorrow and have a chat and see how the land lies. Lyn
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Posted by: Kathy in Atlanta ®
11/02/2003, 01:12:18
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Sounds like the reporter has the true jist of what needs to be talked about!For once.
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Posted by: Claire from Canada ®
10/29/2003, 08:10:09
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I think that it is wonderful that you have this opportunity to raise awareness about blepharospasm!As for driving, my doctor has told me that he is not revoking my driver's permit because he expects that I will use it intellegently. I have not been driving for many months now. He did clearly tell me that if I got into an accident and it became known that I have this condition, I could be accused of negligence and held accountable for damages resulting from an accident, including injuries and death of others. So it is scary!
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Posted by: Moderator-JB ®
10/29/2003, 13:34:54
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Hi Lyn, Hmmm ... sounds like there could be some big risks for you. The use of another name might make it work. It also depends on the reporter and what they write or not, as the case may be. I've had the same thoughts as likely others have too. Publicity is fantastic for the overall view. Singling yourself out could be a hard price to pay. Nice to hear from you, Judy in WA
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Posted by: diane in virginia ®
10/29/2003, 16:47:38
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lyn..
i really don't think your driving ability would come into question during your tv interview segment..
by the time your "sound byte" is edited, i think that your other "daily living activities" will be the focus...walking, reading, writing, etc.
there are many people with impairments who still have a driver's license...i don't think a doctor has a right to revoke it..it all depends on a person's ability to pass the driver's test.
if it does come up, you can simply say that when you're not able to drive, due to eye spasms, you ask for help from others to do the driving.
bless you for your courage!
diane
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Posted by: Teach ®
10/29/2003, 22:12:36
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Lyn,
I must admonish you to exercise caution. Really think about the consequences before going ahead with this. My family was traumatized by an article which was in a prominent periodical last summer, and if I could turn back the hands of time, I would never do it again. I really regret having naively leaked intimate family information to a reporter who seemed like a friend (I never, ever thought she would print the stuff she did, or that the article would turn out the way it did. Dumb me!) This had nothing to do with blepharospasm (but, come to think of it, they happened at around the same time--maybe all that stress and tension triggered my BEB, which, coincidentally, started this summer??!!)Think about stuff like your job, and if it could be affected in any way by publicizing your BEB. It's definitely not worth it if you could risk losing your drivers license or your job because you are viewed as a person who is unable to perform specific tasks because of your eyes. Keep us posted!
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Posted by: Lyn Down Under ®
10/30/2003, 02:25:13
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Hi everyoneThanks so much for all your advice. It is a real problem. I get so sick of all those silly cosmetic Botox stories that I would love to help in doing one showing the important reasons for using Botox. I wouldn't trust any media person AT ALL. Before I did it, I think I would have to insist on my name not being used. Anyway, I may be worrying unnecessarily because it all hinges on whether my doctor is interested in doing it or not. I have spoken to his secretary and she will test the waters, so to speak. He will be in tomorrow and if he is interested I will discuss it with him. Will keep you posted and thanks so much for your support. Lyn
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Posted by: Claireroe ®
10/30/2003, 16:30:56
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I found this on the UK driving and vehicle licensing authority website. Thoufght it was pertinent!Blepharospasm
8.2.1. It was the opinion of the Panel that untreated blepharospasm would usually be considered incompatible with safe driving, both for Group 1 and Group 2 driving but that Group 1 driving could be allowed if there was Consultant support that the condition was very mild. It was accepted that there would be a small number of cases where botulinum toxin could be used satisfactorily to treat this condition, but it was felt that in principle most cases would not meet this requirement. The use of botulinum toxin for blepharospasm was not considered to be compatible with safe driving because of the variability of response and the short duration of the effect of the treatment. It was agreed that these cases would be brought to the Panel on an individual basis for decision both for Group 1 and Group 2 drivers.
I think this is fairly recent legislation. I suspect that the same would apply in many countries.
Claire
Modified by Claireroe at Thu, Oct 30, 2003, 16:32:25
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Posted by: Ann Doyle ®
10/30/2003, 18:03:54
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I think I would want a signed legal agreement to have a look at the film as it would be shown and to OK it first. Ann Doyle
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Posted by: Ann Doyle ®
10/30/2003, 18:04:35
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I think I would want a signed legal agreement to have a look at the film as it would be shown and to OK it first. Ann Doyle
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Posted by: diane in virginia ®
10/31/2003, 07:19:32
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claire..
thanks for your research on that!
interesting to see that our beb, previously unheard of by most, is now on the record in the uk dept of motor vehicles website.
diane
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Posted by: Lyn Down Under ®
10/31/2003, 17:04:27
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Claire - thanks for that, I think ! What a bummer! Rather frightening. I am beginning to wish it would all go away. If I get asked about driving - what to say? If I dodge the issue, I can just see some enterprising media person doing an item on "Safety on our roads - are there people out there driving with hidden disabilities?" Lyn - thinking very carefully I just did a search for local info and and there is a book intended for the medical profession on all sorts of disorders and conditions that may impair driving - there is a Neurological section and also a Vision and Eye Disorders section - needless to say, neither mention BEB.It does appear however that it is up to a doctor to make the assessment.
Modified by Lyn Down Under at Fri, Oct 31, 2003, 17:27:25
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Posted by: Delaine Inman in TN ®
11/01/2003, 07:50:14
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Thanks for that info. I know many of our docs would go to bat for us, but from past experience of other situations I've heard about, there are no guarantees their testimony or judgment would be air tight if a jury were involved and we are in an accident where lives are taken or damaged. A jury can have a different opinion than our docs and the other lawyers can always find docs who will testify for them that we shouldn't be driving or doing things that could endanger others. I don't think that most of our docs would lay their license on the line for us no matter what they tell us or how wonderful they are. I don't doubt that they are sincere in telling us they would stand up for us.
It is still a gamble no matter what our docs or we think on any given day.
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Posted by: Lynn Yarbrough ®
10/31/2003, 12:03:08
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Last week I renewed my drivers' license and was faced with the question of whether I needed to mention my BEB. After mulling for a moment, I decided honesty is the best policy, and spelled out "Benign Essential Blepharospasm" on the form, where it ran off the end of the page :-). When I handed the clerk the form, she asked, "What is THAT?"
So I gave her the most concise straight answer I could, and she shrugged and went ahead. She apparently had never heard of it (big surprise, right?) and accepted my nonchalance at face value.Again, it's more to our advantage to be forthright than to be evasive (and the clerks are probably trained to recognize B.S. when they hear it) and having been honest about my limitations, such as they are, I don't believe there will ever be an repercussions on this issue, even if I run into a fireplug or something. For those of you in other countries: the state-to-state variance in regulations on licensing in the USA are many. When I was growing up in Texas, we were taught that people in the neighboring state of Louisiana didn't even need driver's licenses of any kind (that's changed since then) and the ages when one can get a license, and other discriminating factors, still differ from state to state. I suspect it's similar from country to country in Europe, although I suspect the formation of the EU tends to lessen variance in most laws there. My own view is that the benefits of going public with BEB far outweigh any risks from doing that. The public needs to know who we are and that they may eventually be in the same boat, and no one can do that more effectively that we can. --- Lynn
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Posted by: Junebug ®
10/31/2003, 20:55:51
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Honesty is always the best policy. I asked my dr. about the driving liabilities and he said, "No problem if I drive when the spasms are controlled". I am very careful to not drive if I think I may have problems but I know in a worst case scenario that he would testify that the spasms were controlled. I had been very concerned that if I were in an accident and the diagnosis was found that I would be found to blame regardless of whose fault it was but he said that "would not happen if he could help it". Joyce
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Posted by: Delaine Inman in TN ®
10/31/2003, 22:15:22
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I did a newspaper story....part was from an interview and part was a story I wrote. My name and picture were used. I later went in to get a handicap tag and the lady remembered me and remarked I should have come in sooner if walking in the sun and wind trigger symptoms. I don't work and I did mention I was on SSD. I thought about the risks of what I was doing verus the benefits and education of others and thought the risk was worth it. If we are on the news, a magazine or the paper, it want matter if we are involved in an accident. We are taking more of a risk driving and working than we are by talking about it I think. If we are injured or injure someone else knowing we have BEB on the job or driving, it could be a real problem for us and the company we work for and if we haven't disclosed our condition to our employers it would be more of a problem for us than them. Living is a risk and we all have to decide what we think is best in each situation. I don't know if I can give up driving when I can, but I'm torn about it because even if an accident were not my fault it could be blamed on my condition in a court of law. It is a moral and ethical question we all must think about and I'm not sure I have made the right decision. Botox is temporary and symptoms and results of treatments vary so it could be a plus or a negative to prove we are capable if something goes wrong and someone sues us for negligence, no matter how vocal or quiet we may be. It is a good topic to discuss and think about as far as consequences of working or driving. Most want to keep doing both for as long as possible.
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Posted by: Ann Doyle ®
11/01/2003, 17:04:01
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I know when it is safe for me to drive and when it isn't. Luckly I have someone to drive me and I don't have children who need rides so I'm not tempted to drive when it is "Iffy". Is that a word?
Sometimes I'll be out shopping and I know that they are starting to go so I leave right then. I don't look at a couple more things. I am not a goody two shoes, I just don't want to take the chance that my liscence will be taken from me before it is absolutely necessary. Ann Doyle.
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Posted by: Junebug ®
11/01/2003, 18:00:25
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I am with you Ann. However, last Sunday night I thought I was doing fine and went to church by myself. Waiting to turn on to my street and facing oncoming carlights, both eyes spasmed shut so I just sat there for a few minutes until they let up enough to turn on to my street. I was so scared when I made it home. I guess I learned to wear my dark glasses even at night. I am still learning!Joyce
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Posted by: June in Toronto ®
11/02/2003, 06:45:06
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I find dark glasses at night make the darkness darker and hence the bright lights brighter (if you get my drift!). Hence I can't drive at night at all. I've even devised an extended visor that has cardboard held on by a couple of pegs, that stops me from seeing oncoming lights - obviously I'm a passenger in the car at that point:-) I then can see from the side and don't get so nauseous from the motion. I really prefer not being in a car when its dark - it really isn't any fun, but sometimes I do need to go somewhere. At this point in time I can't drive at all - my right eye is still completely blurred from the last botox injections (a first for me (9 weeks) in 8 years that this has happened). To drive or not to drive is a very...difficult decision for all of us with beb. Be careful.June in Toronto
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Posted by: Ann Doyle ®
11/02/2003, 10:17:30
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June, I don't drive at night either but then I am usually in bed by eight . When someone else is driving, day or night, I just keep my eyes closed.
S.J. Perlemann had a reproduction of Hemingway's fishing cap. It had a canvas crown and a very long leather beak or bill or whatever. It was more than 10 years ago and I gave it to my husband. Wish I could find one now. Ann
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Posted by: June in Toronto ®
11/03/2003, 07:45:51
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Hi Ann - I must have very....thin eyelids as I can see light through them if I close them whilst being a passenger in a car at night. I also get motion sickness if I do that (or cover them up). I find the 2 visors (plus cardboard and a peg!) up front and being able to look sideways (without the flashing car lights) works reasonably well for me, although I don't go far at night out of choice and am often in bed by 9 or 10. The fishing cap would be a hoot for you to wear! I didn't make any headway trying to make that visor to fit over my sunglasses that was posted here earlier on. My wrap arounds have such a large-size arm and extra across the top of the glasses that the made-up visor just won't bend to the right shape or fit. I must try to make them to fit a regular pair of slim-arm glass sometime. Cheers.June in Toronto
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Posted by: Junebug ®
11/03/2003, 09:23:02
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Thanks for all your input. I told you I am new at this learning. :o) Maybe the dark glasses at night aren't such a good idea and I will just stay home. Winter hours make such a difference with it getting dark so much earlier. I haven't driven at night since that happened. Hope you all have a blessed week.
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Posted by: June in Toronto ®
11/03/2003, 15:53:40
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If you are outside during dark hours think about wearing safety glasses (cheap) as they help keep the cold winds away from the eyes (they have side and top pieces). Just another tip.June in Toronto
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Posted by: Ann Doyle ®
11/02/2003, 10:12:18
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Joyce, I have also learned to plan my routes where I can pull over. Our by pass is a lot safer for me than the city streets. Ann
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