Re: Welcome, Leprechaun
Hi Bob,Welcome to the BEB BB. It will be fun to have a leprechaun aroudn as long as you don't play too many tricks. I can't answer the questions you have asked, and hope that some of the guys out there will come forth and "talk" to you. Keep us posted and drop in often with your questions and comments. Sally in North Idaho BEB/Meige and much difficulty seeing lately.
Re: Welcome to the bulletin board
Hi Bob and welcome to the bulletin board. The first doctor that ever gave me BOTOX had a patient here in Arkansas that was also a truck driver. He told me about this particular truck driver with BEB as he said that this man was the only person that he knew of that was able to get SSD due to BEB. Many of us have obtained SSD, though.I am an RN and had to stop working because of blepharospasm. I'd say that there was a definite possiblity that you could lose your CDL. It just really depends on the degree of severity of your symptoms and how well controlled your symptoms become with treatment. Contact the BEBRF if you have not already done so and get information from them. If you can possibly attend the upcoming conference in Houston, Texas in August, it would be very helpful, especially if you are thinking of having a myectomy. Feel free to ask whatever questions you have and read as much of the bulletin board as you can. The BEBRF Main Page at the top of the bulletin board page has a wealth of information to go through. Shirley in Arkansas
Re: I'M NEW with BEB
Hi Bob,
Welcome to the BB. I too am fairly new to the bb being diagnosed early in January 02. After my first injections I thought that I was no longer going to be able to work but so far, I am still working as a planner for an outerwear/skiwear company and have been for about the last 15 years. The last 6 months leading up to my diagnoes in Jan. was my worst time since I was not able to keep my eyes open for more than a very short period of time but I have had my second set of injections (march 28th) and so far they have lasted amost 8 weeks and counting. I am experiencing some grimacing but I am not yet receiving any additional injections in my face or taking any meds. My next set of injections are scheduled for June 20th.
I hope you find someone on the board to help answer some of your questions. Take care and as others have suggested, if you have a chance read the archives. Personally, I have found some invaluable information there.
Debbie, Ontario Canada
Re: I'M NEW with BEB
So sorry to hear about this Bob. IMHO I wouldn’t put any hope in continuing a career in driving if its anything like my symptoms. I was diagnosed about a year after symptoms first appeared. At about a year and a half I told my doctor if I was a bus driver or pilot, my career would be over. Driving for me is the worst. I am still working but with some accommodations, the Botox has helped some with my short drive in to work. Even after the first few injections I still could not get a grasp on this disorder, but after reading posts on this board my jaw hit the ground and I thought, “Hey that’s just like me.” There are not many men on this board but I can tell you that everyone has some experience here. Ask anything you want, and someone will have an answer. Find a GOOD doctor who is VERY knowledgeable of BEB. Talk about it with family and friends, BEB can be very frustrating and sometimes depressing. I’m only 39 and its been quite a bummer, sold my motorcycle and the wife pretty much drives the family around when we all go out. Find a support group in your area, here are some but not all http://www.blepharospasm.org/blepharm.html#SUPG Good luck,
Ken in DFW
Re: I'M NEW with BEB
Sorry to hear of your difficulties. I have had beb/apraxia for 16 years, and was not able to drive for awhile. Botox and medication helped so that I could continue to drive to work and keep my job for 14 years. There is help; find a GOOD doctor. If you are considering surgery, send for and view the tapes from the BEBRF. Talk to several doctors; find out if you have apraxia or anything else, before you have surgery. Medication along with Botox may work for you. Go to support group meetings and learn all you can. Good luck!
Re: I'M NEW with BEB
Top o' the morning to ya, Bob. The luck of the irish certainly got you off the road in time. I'm glad you have already been diagnosed , that's half of the battle. I'm sure not having to be responsible for that heavy rig will take a great deal of stress off you. Perhaps your eyes will also calm down a bit.
Re: I'M NEW with BEB
Welcome to the bb Bob, but sorry to hear you have this disease - its hard to come to grips with. You've been given some good information from others - find out all you can about beb, destress yourself and try not to take any major steps (surgery, quitting your job, etc) before you have thought it through thoroughly and got good advise from a doctor who specializes in this movement disorder. I understand a myectomy is not a cure for beb but may (not in all cases) help the situation. Post again and let us know how you are making out - we care.June in Toronto whose eyes are in a horrible state this week (I need to take my own advise and destress!).
Re: I'M NEW with BEB
Welcome..it's a pain this BEB isn't it..but since I have found this bulletin board I have felt so much part of a family.
I have had to give up my work as it was too far to drive..I still drive short distances but not for much longer I think.
It really got me down being "unproductive" so a couple of months ago someone wonderful suggested to think of two things I could do to make my life better!I thought they were being trite..but I gave it a goI was so low and desperate to do anything to make things better...I enrolled on a Dinghy sailing course that I have always wanted to do..and have had more fun than I have had for years! I feel like a teenager again...I really never thought that it would be possible!
The same person told me that there is a saying that when one door closes another one opens...true.. but often we stand and look at the shut door instead of going through the one that opens..
It can sound trite..but it is so true..
I know that you will find love and support on this BB
Best Wishes
Claire in the U.K.
Re: I'M NEW with BEB
Welcome to the Board, Leprechaun. Do I take it you have a liitle Irish in you somewhere, then? My mother was Irish.
I too, Recently diagnosed in December, have trouble driving now and have only managed it twice in 6 months and that was for about 1 mile each time, but I found the suggestion I found on this site of singing at the top of my voice worked!
You will find plenty of good advice like that on here, so keep looking in.
Pippa, from Scotland
Re: I'M NEW with BEB
Bob, sorry to hear about your BEB but welcome to the bulletin board. As I am sure has been suggested, make sure that you contact the BEBRF for info. They are a great help. I first was diagnosed in early 1997 and by fall, I was really bad. I went on short term disability in Aug of that year and had a very limited Myectomy in Sept. Botox had not been working for me at all. I also had an upper Myectomy in Feb of 2000 and a Lower one one in March of 2001. I ended up getting full disability and social security disability. While I was not a truck driver, I did do a lot of driving as I was a sales executive. Unfortunately, I still cannot drive although I do take a short trip to the landfill which is not too far away from where I live. Even that is tough but it is my test each week to see if things have gotten better. Istill maintain my license but do not take any chances.Good luck and if you need to talk anytime, feel free to contact me through my EMail address or contact the foundation and they will give you my number. I usually get a call a week from patients asking about my experiences which have been vast.....Alan
Re: I'M NEW with BEB
Alan Phair read your reply but couldn't find your e mail address as I am new at this.If you will tell me where to get it I would like to e mail you.
Re: I'M NEW with BEB
Re: I'M NEW with BEB
Hi, Bob, my name is Lynn and I can fully appreciate your concern about driving and making a living. I struggled with this condition for about 30 years before finding a correct diagnosis in 1990. I have been on BOTOX since then. It has enabled me to do anything I want with my eyes, including driving all day, and my muscles are slow to recover from the shots so I get new injections only about every 6-7 months. You are very fortunate to have a reasonable diagnosis so early; take advantage of it and give your Dr. your full cooperation. With luck, patience, and stress reduction you may get a good, if not permanent, recovery.I know, from my father's experience as well as my own, how discouraging it is to lose the ability to drive. It's very easy to go into denial over this. And to experience all the other signs of depression. Don't stay in depression; it goes nowhere. You may have to make some major concessions and adjustments in your life, but it's not the end by any means. Stick around here, ask questions, see what people have done to beat this thing. We will support you. --- Lynn
Re: I'M NEW with BEB
7 years after a fight with encephalitis in 1980 my vision started going bad..took me 6 yrs to get a DIAGNOSIS..i'm now immune to botox i drive very little...HANG ON buddy hope the botox helps ya andd i pray for a cure for us all....john in alabama
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