DIFFICULT TOPIC TO TALK ABOUT - DRIVING


Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,08:18   Archive
This is part of an article in MEDSCAPE that I received today - if you would like to read the full article go to the link

"Driving is a highly valued activity for most individuals, [1] and the loss of this ability greatly reduces a person's sense of independence and well-being.[2-4] However, in the interest of public safety, most states restrict driving privilege for people with certain medical conditions.[5] Adequate vision is arguably one of the most important capacitie for safe driving, and visual impairment is a common reason for people to restrict their driving. [6,7]

Previous studies have shown that 13% of drivers over the age of 55 have a best-corrected visual acuity worse than 20/40.[8] Although visual impairment may lead to a higher rate of adverse driving incidents, the exact effect of visual impairment upon adverse driving incidents is not known because of conflicting data. [9-12] Adverse driving incidents include citations, crashes, and at-fault crashes. Some types of eye
disease, such as cataract, may lead to a particularly elevated risk. [13,14] The question becomes even more complicated when one considers that individuals with visual impairment still legally drive, albeit with graduated restrictions, in many states.

We compare the rate of adverse driving incidents in individuals with impaired vision and driving restrictions to unimpaired, unrestricted drivers. We compare the citation rate, crash rate, and at-fault crash rate of non-commercial drivers with and without visual impairment for the entire state for a five-year period. The purpose of this study was to determine the adverse incident rates of impaired drivers at specific levels of restriction and impairment and thereby determine if these restrictions appear to be adequate."

June in Toronto (beb/meige
Related link: http://www.medscape.com/viewarticle/429064?srcmp=ms-031502




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Kelly Saffell , Mar 22,2002,09:07 Top of Thread Archive
Thanks for the info June. I will probably join the ranks of the restricted soon. (Hopefully it won't be the ranks of the revoked) Since most of us blephros restrict ourselves, being legally restricted really won't be a change. I've never had an accident since "getting" beb. Keep you posted on my whole process - who knows, one of you might be next to fall under scrutiny.
Kelly



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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Kelly Saffell
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,09:56 Top of Thread Archive
Kelly, I'm sure you will get your restricted license - but thought the information might be useful to all of us (even though in Canada the driving rules might be a bit different). As yousaid, keep usposted.

June in Toronto (beb/meige)




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Gisela Rentmeister , Mar 22,2002,16:03 Top of Thread Archive
Hi, June, Thanks for pasting this info for us. I've now registered with Medscape and look fwd. to other interesting material on their site. As to Canadian driving rules, I'm no longer sure I know everything that should be known. What I do know however is that I am the only one to know and evaluate my driving capabilities - if there's no evidence of unsafe driving on my part to others, how could anyone else become aware of it.
There are days when I don't feel like driving and I wouldn't enjoy sitting in the driver's seat. Other than that, there are some precautions that are helpful to me. Tinting the front side windows (not legal in Canada)is one of them. Sure, our oh so watchful RCMP stopped me a couple of times, but as soon as I showed them an explanatory note from my neurologist, Dr. Tsui, UBC Movement Disorders Clinic, they thanked me, saluted and let me go (THEY BETTER... lol). Special Sunglasses that don't let in excessive light from the sides (with those, I still enjoy skiing and driving my beloved Helix) help also.
Well, I better sign off now. Although I love my grandchildren (3, 6 10 yrs.) who are visiting, dearly, they drive me bananas right now. I thought I'd be able to keep them in the fitness room (Opa supervised) for a longer period of time. But it didn't take long for them to try out all that 'machinery' in there. They are back and continuing their workout right behind me - with the help of my poor piano.
Take care, June.

Gisela from B.C.'s beautiful Okanagan

--modified by Gisela Rentmeister at Fri, Mar 22, 2002, 21:21:22




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING/GISELLA

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Gisela Rentmeister
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,19:09 Top of Thread Archive
Oh, believe me Gisela, I know where we are all coming from on this subject of driving (both sides of the story). I agree that you know best if you are safe to drive or not and I, too, don't drive until my botox injections are working fully and then not under stressful conditions and only on short trips. But it still remains that IF our doctor(s) decide to report that we have beb to the driving authority, then we could be in trouble! Judy said it before that insurance companies could be disastrous (not her words exactly) if they knew we had beb and were involved in an accident fault or no fault. Just commenting on an interesting article that I read. I'm sure you will enjoy the Merdscape e-mails - lots of intresting stuff.
Also enjoy your grandchildren and have a good rest when they are gone:-)

June in Toronto (beb/meige) who was in Okanagan last year and agrees it sure is beautiful (and the wine is very good also)!

--modified by June in Toronto at Fri, Mar 22, 2002, 19:10:49




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING/GISELLA

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING/GISELLA --- June in Toronto
Posted by Gisela Rentmeister , Mar 23,2002,00:02 Top of Thread Archive
Hello again, June,
Thanks for the response. I'm glad you enjoyed your stay in our valley. Which of the wineries did you visit? Goodness knows we have many of them in the Okanagan - paradise for wine connoisseurs, no doubt.
As to the subject of driving, my neurologist assured me once that with botox injections I should be able to continue with safe driving. However, he also pointed out that I myself would be the best judge to know when driving is no longer safe for me and others.
Flying sailplanes in Germany for many years, safety always had to be and still is (I ride a motorbike) of utmost importance to me. As to possible insurance objections, I guess I would have to invite them to take a test drive with me. Botox has always been a blessing where my eyes are concerned. Injections into my jaws, however, are no longer effective. The agony of eating food becomes more and more difficult to tolerate.

Gisela - who hopes that you're going to drop in, if and when you are in the Okanagan Valley again, and wishes they'd hurry up with their research efforts in finding a cure for every form of Dystonia.




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DRIVING THROUGH THE OKANAGAN/JAW INJECTION SITES?/GISELLA

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING/GISELLA --- Gisela Rentmeister
Posted by June in Toronto (June Floyd,June in Toronto), Mar 23,2002,11:05 Top of Thread Archive
Hi Gisela (that's a lovely, different name),
We didn't visit any of the wineries in the Okanagan - just drove through enjoying the beautiful countryside - do hope, sometime to do it again. Of course, I can enjoy the wines from that region at home! I might mention on this topic that, whilst sorting out bebrf printed material yesterday, I saw a couple of letters/articles by doctors about drinking (moderately) helps beb - so there we go:-)
So you still drive a motorbike? I used to own a Triumph 300 twin when I was in the U.K. - it was an ex-police bike and I loved it. I never was one of those gals to sit on the BACK of a boyfriend's bike! It would be worth a lot of money now. You seem to have had an interesting life - flying sailplanes in Germany for many years.
I'm sorry you are having so much problem eating and the injections not working in your jaw area. Kelly talks about using a night mouth guard, etc, etc. - any help to you do you think? I don't know what to tell you - I wonder if injections sites are as super important for individual people in the jaw area - does anybody have any ideas about that?????
I'm with you about finding a cure for Dystonia - its got to be just around the corner! Keep smiling.June



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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Gisela Rentmeister
Posted by Katrina , Mar 22,2002,19:39 Top of Thread Archive
Gisela,
What did they pull you over for and what does the letter of explanation say? Also, what is a "restricted" license? Thanks,
Katrina

--modified by Katrina at Fri, Mar 22, 2002, 19:40:16




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Katrina
Posted by Gisela Rentmeister , Mar 22,2002,22:21 Top of Thread Archive
Hi, Katrina,
They pulled me over because my front side-windows are tinted, which, as I mentioned, is illegal in B.C. It would be interesting to know whether this is illegal in other provinces/territories of Canada as well.
Dr. Tsui's small note, with letterhead 'The University of British Columbia, Neurology/Movement Disorders Clinic', reads as follows:
"TO WHOM IT MAY CONCERN
This patient has blepharospasm (involuntary closing of eyelids) and
her eyes are very light-sensitive. Windscreens & windows have to be tinted for safe-driving."

The bright sunlight was unpleasant to me while driving. I asked my doctor for an explanatory note in case I am stopped, had the windows tinted and really like it this way. The note has nothing to do with my driver's license which has no restrictions.

Forgot to wish you well, Katrina. Take care, Gisela

--modified by Gisela Rentmeister at Fri, Mar 22, 2002, 22:23:28




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Gisela Rentmeister
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,23:13 Top of Thread Archive
In Ontario, Gisela, there is a level of darkness at which the front and side windows in a car can be tinted legally (I forget what the level of tint is). The back windows can be tinted much darker. I even have tinted film on our windows at home - it sure helps with light sensitivity.

Best wishes.

June in Toronto where I can't sleep again!




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Shanasy in IL , Mar 22,2002,09:52 Top of Thread Archive
This is a great subject to be brought up June! I say this as a warning to others. When I first got BEB I continued to drive for about a year and a half. As my symptoms grew wore, my driving became more hazardous. Of course, I was "VERY CAREFUL" and didn't drive far and tried to go slow. I should have stoppped driving long before I did. You know you can kill someone only going 30 mph. Most accidents happen within 5-10 miles of your home. Fortunately, I didn't have any mishaps, but I feel I was just lucky. It only takes a second to make a fatal mistake and/or completely ruin your life or someone elses. The thing that convinced me to finally stop driving was 2 things:

1. I ABSOLUTELY ABHOR DRUNK DRIVERS! (Although I must admit I did my fair share of occasional "intoxicated" driving when I was a stupid, ignorant teenager and young 20's.) When I did drive intoxicated, I was always very "careful and drove slowly" and figured I could at least get home which I always did safely - STILL STUPID! I am saying this because I realized that as a BEB driver I was WORSE than a drunk driver, NOT because of my driving ability, but because I KNEW I was not driving with my full capabilities. At least a drunk driver "thinks" he/she is driving Ok. As a BEB sufferer I KNEW I wasn't driving completely safely - and that is no excuse to be on the road - yet I continued.

2. Reason No. 2 - some smart people of this BB talked about this before and it further convinced me I was wrong to be on the road. Thank you friends!!!!!

So those of you that are still driving and not doing it too comfortably because of your BEB I hope you will really think about the dangers/possibilities of driving impaired. To me, even a mild case of BEB would be driving impaired.

Love to you all!
Shanasy (determined to get back on the road again - but only at 100% capacity)




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Shanasy in IL
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,10:00 Top of Thread Archive
Hi Shanasy, yes I knew you weren't driving and what a difficult decision that was for you. Judy Blackman has mentioned a number of times how the insurance would feel (act) if we beb'rs had an accident and knew we had an impairment but continued to drive - even if we were in the right during the accident it might well go against us. Its such a difficult decision for all of us to make. Your right - it should prove to be a good discussion on the board.

June in Toronto




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Delaine Inman , Mar 22,2002,22:04 Top of Thread Archive
It's something I struggle with every day and make a decision a day at a time. My common sense says don't do it because of the liability, but it is so hard to give up completely. I don't go far and I do better on interstate and in my conversion van, but it takes all the energy I have and I'm exhausted from forcing my eyes open and the singing and noises I have to do to keep them open sometimes. It is harder to keep my eyes open riding than driving even on a day I feel is a good eye day. It has been harder to give up driving when and where I want than giving up my job. I keep telling myself that there are millions of people who never learn to drive and they survive and I will too, if I have to stop altogether. But I won't like it and I pray and believe that I am going to find that something like Jeannie did that will give me my independence back.



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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Delaine Inman
Posted by Shanasy in IL , Mar 23,2002,00:19 Top of Thread Archive
Sorry but I don't read many of the posts (lack of eye power) so what did you mean by 'you're going to find that something like Jeannie did that will give you your independence back?'



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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Shanasy in IL
Posted by Delaine Inman , Mar 23,2002,11:35 Top of Thread Archive
Botox and Benadryl keep her driving. Doesn't work that way for everyone, including me.



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Re: Driving -- you think YOU have a problem...

Re : DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Lynn Yarbrough , Mar 22,2002,13:16 Top of Thread Archive
Thanks for raising the topic. It's a traumatic one for me, but maybe my experience will help someone make up their mind about taking that risk.

When I was in my early 20's (long before the BEB showed up) I was driving and had a lethal accident. As it happens, I was not at fault, but that didn't change the fact that I was traumatized by the experience and continued to be so for most of my life. The cause was very simple: Driving at legal speed on residential streets, I was distracted by a movement on my left (which turned out to be the reflection of the car approaching from a blind corner on my right) and by the time I recovered from that, the other car was directly in front of me and one second later the driver of that car was dying.

Consider that fact that a BEB spasm, over which you have NO control, lasts from 2 to 10 seconds. What can happpen during that time? Right: anything. And living with BEB does not hold a candle to living with that kind of trauma and guilt.

If you continue to drive with BEB, be assured that eventually it will catch up with you. I have said here before that adrenalin is your friend, and I am sure that it keeps us out of trouble more often that we deserve. You can't depend on it. And you have no clue just how bad a driver you can become when BEB strikes you.

--- Lynn




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Re: Driving -- you think YOU have a problem...

Re : Re: Driving -- you think YOU have a problem... --- Lynn Yarbrough
Posted by Dee in OR , Mar 22,2002,14:19 Top of Thread Archive
Lynn,

Thanks for your post and words of wisdom. I didn't drive for the first two years that I had blephs because I didn't want BOTOX. Now I get botox and I can drive again, but I feel that I am still very cautious and if I am having a bad eye day, I don't get behind that wheel. I don't like to drive long distances or in heavy traffic. If our public transportation system was better I would consider giving up driving altogether. But it ain't so I won't!

Dee in OR




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Re: Driving -- you think YOU have a problem...

Re : Re: Driving -- you think YOU have a problem... --- Lynn Yarbrough
Posted by June in Toronto (June Floyd,June in Toronto), Mar 22,2002,14:34 Top of Thread Archive
You said it like it is Lynn - thanks

June in Toronto




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Re: Driving -- you think YOU have a problem...

Re : Re: Driving -- you think YOU have a problem... --- Lynn Yarbrough
Posted by Christel-California , Mar 22,2002,21:36 Top of Thread Archive
I had my wake-up call almost a couple of years ago. I drove down to our little country market, about 3 miles and my eyes closed, don't know for how long, perhaps only a few seconds. I veered off the road and onto gravel and lost control. My car spun out, across the road and came to rest with the back wheels against the rail road tracks.
Fortunately there was no oncoming traffic nor was there anyone behind me. Thank God, I shudder to think what could have happened and it would have definitely been my fault. That's when I knew I had to give up driving.

Christel in Ca. who is stuck without her wheels.




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Re: Driving -- you think YOU have a problem...

Re : Re: Driving -- you think YOU have a problem... --- Lynn Yarbrough
Posted by Pete in Or. , Mar 23,2002,12:34 Top of Thread Archive
Lynn, there it is, I can relate to the last two paragraphs of your post. Too bad about your early experience in life. I do a lot of driving on my job and personal life both hiway and logging roads and consider myself a very good driver. (I'm adept at dodging log trucks, so far anyway). Problem is, since I have had this condition, I have become hyper alert when driving which most of you folks know makes the spasms even worse. Lately, I have had a couple of near misses which got my adrenaline going, but I'm going to hang in there (probably slow down a bit).

Gisele, meine frau ist auch Deutch, von Kaiserslautern. Okanagen is beautiful, about 10 yrs ago I worked on a forest fire near there, in NE Washington - Curlew and Republic.
Pete in Or.




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Jeannie Day , Mar 22,2002,21:33 Top of Thread Archive
I've had BEB since 1991 and I had a period of several months in which I was unable to drive. After starting Botox in 1992, I was able to drive again. After a couple years I started having trouble again. After starting Benadryl in 1997, I don't have any trouble driving at all. Jeannie from Ohio



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Re:Long time no see

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Jeannie Day
Posted by Shirley-Arkansas-USA , Mar 22,2002,21:39 Top of Thread Archive
Hi Jeannie. We haven't seen you in ages. It's good to hear from you again. Glad to hear that the Benadryl is still working for you. I'm pretty sure that you are the one that got me started on it.
So what have you been doing?

Shirley in Arkansas




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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- Jeannie Day
Posted by Delaine Inman , Mar 22,2002,21:53 Top of Thread Archive
Good to hear from you and it's nice to hear a story about something that works so well for you. Gives us hope that we will find the formula that works for us, too. Don't be a stranger.



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Re: DIFFICULT TOPIC TO TALK ABOUT - DRIVING

Re : DIFFICULT TOPIC TO TALK ABOUT - DRIVING --- June in Toronto
Posted by Shirley-Arkansas-USA , Mar 22,2002,22:07 Top of Thread Archive
Driving has been one of the more difficult things for me to give up. It's an independence issue. And I always loved to drive. I was a good driver. One of the reasons that I don't get out anymore than I do is because I have to ask my husband or one of my sons to take me. Sometimes I can't even make myself ask even though I know that they are all usually very willing to take me wherever. It's a self-inflicted thing.
There are times when I feel that I probably could drive for short distances but I'm not always sure that I could get back home so I just don't do it. It's just not safe. No matter how much I want to, the fact is that I don't know how my eyes are going to do in 10 minutes or in 20 and I'm not willing to risk other people's lives or put my own family's financial assets at risk. My neighbors all know that I have difficulty walking out to my mailbox some days and finding it-what would they think if I headed out in the car?
I'm just glad that I don't have people that are dependent on me for transportation. My youngest son was just reaching driving age when I developed BEB. That was a very difficult time for me and he got his license sooner than he would have if I had been able to drive.
Tough decision not to drive but a wise one for me.

Shirley in Arkansas




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