Re: Proud, Proud, Proud
Welcome back to the roost, Mother Chook. This "peeper" missed you!Sally in North Idaho
Re: Proud, Proud, Proud
Hi Shirley,
I really enjoyed your post. I wish I could have made it to the conference to meet all of you.
I'm doing well with my insulin pump, and have been busy, busy, busy.
Evelyn, looking forward to the forecasted rain. Things are so dry.
Re: Welcome Home
Glad you and your family are home safe and sound and glad you had a great time at the conference. When you are rested up we look forward to hearing more about it. June in Toronto
Re: Proud, Proud, Proud
Shirley, glad to hear that you and everyone else had such a great time. As you know, this was the first one that I missed since I came down with this disorder.We had a great birthday party for my ma with close well over 200 people showing up. I then had a follow up party for just the immediate relatives at my house on Sunday and we had 60 there. It was fantastic as it turned out to be a total family reunion. Not only did I get to see some of my nephews and neices that I had never seen, many of the cousins even in California, Texas, Arizona & Ohio had never met each other. I won't get into detail hear but I also found many of them had eye problems and particularly facial movements of different forms. My niece and all her children have problems with their neck and throats and two of my nephews had to wear Tracheotomies when they were young. It really proves to me that this thing is genetic. I will be interested to hear how that part of the program at the conference went. Again, glad that you had a great time....Alan
Re: Genetics
Sally, Evelyn, June and Alan, thanks for the welcome home. Evelyn, I'm glad that your insulin pump is working out and hopefully getting easier for you.
Alan, I'm glad that your party and follow-up party were a happy time for all. You're a good man. I did miss you at the conference, though. Next year's conference is about a week later in August in Houston, Texas, so don't make any other plans without clearing them with us first. OK? OK.Dr. Bressman was ill and was unable to attend the conference so Dr. Adler gave a presentation on her behalf. She was to be the main speaker on genetics. It does seem to be that the gene or genetic link for BEB will be more difficult to find or pinpoint than some of the other dystonias. There was no mention of a cure being right around the corner for us-sorry to say. I'm sure that the genetic information will be in an upcoming Newsletter. I couldn't begin to explain it. Maybe someone else out there will give it a shot. (I hate using that word). I've already ordered and paid for my audio tapes for this conference. Walter Mason was there taking orders while recording the new tapes. I'm sure that you could already send a check for $35 to him and he'll be making them and sending them out pronto. I'll try to post a link in another post for people to do that. Shirley in AR. who missed giving Alan a hard time - Poor Virginia caught the brunt of it. What am I saying? Poor Virginia, my foot! She had my husband and son plotting against me.
Re: Proud, Proud, Proud
Shirley, welcome back, I missed you too. Enjoyed your post and I was in stitches when I got down to the salad. Just think, it'll be another whole year until you have to share another salad experience with a Master Gardener. It must have been fun to meet people from the BB, wish I could have been there. Question: did Carol Thoma ( I think that was her name, am not positive) ever show up. She lives right there in Arizona and was going to attend the conference, but we haven't heard from her on the BB for quite a long time.
It must have been a little strange to meet people who know all about you and you don't even know they exists.
Anyway, glad you all had a good time and are back home again (on the BB) where you belong. And I am looking forward to more detailed reports.Christel
Re: Proud, Proud, Proud
Hi Christel. Thanks for the welcome home. I had a wonderful time picking on Virginia. It was a real treat for me to meet the bb people and others as well. I ran into Anita Croce who used to post a lot. I hope that she starts again. And there were two other ladies that came to our Friday BB lunch and I can not remember their names. I don't believe that I saw Carol Thoma. Maybe some of the others ran into her. And their was another Virginia I think that her last name was Christopher, that I met at the banquet that used to post a lot. She was very nice. She looked at my name tag and said "Oh, you're Shirley, you're on the bb." At least I have name recognition. Don't know if that is good or bad. Probably mixed reviews.Shirley in AR. battling with the university as they assigned my son's room to someone else and now he has no dorm room to go to. I was my usual rational self and told them that I had a signed contract and to call me back when they had it fixed. They did find a spot for him in an un-airconditioned dorm that is supposed to be torn down this year. I told them that wouldn't do-try again.
Re: Proud, Proud, Proud
Shirley, you should have said, "I'll have my lawyer call you", even if you don't have one. That usually works.Christel in Ca. who was freezing this morning, but didn't mind it.
Re: Proud, Proud, Proud
Shirley, It was nice meeting you and your family and all the others I met who post to the BEB. So many names to remember. It was wonderful to see Joan P and her daughter. It was great to see all the people who have had myectomies and how well they were doing. Also it was interesting to see that many of them said, once they had the myectomy and the movements were reduce how it seemed to cause other movements to stop. We were happy that we got to speak with Dr. Anderson. He checked me out and said I was a good candidate for a limited myectomy. Sorry we weren't able to visit too long, but it wasn't a very good weekend for me. We came home Sunday and got the girls(11,8,& 6) ready to start school on Monday. Its sad to have them go off to school, it makes the days at home very long. But at least I have the afternoons and weekends. And yes, you are very pretty lady just like I told you at the conference and my wife agrees. God bless--Rolando
Re: Nice to meet you, too
Hi Lisa and Rolando,
It was nice meeting both of you, also. I'm glad that you were able to attend and got to speak with some of the doctors. I'm sorry that you couldn't attend everything but I understand. I hope that what you did get out of the conference was helpful to you.
Thanks for the compliment.
Take care and let us hear from you.Shirley in AR.
She's making it all up
For the record, the cactus leaves were on the potatoes, not the salad. They were pretty disgusting. I kept looking for the "pricklies" in the prickly pear dessert, but couldn't find them - I hope they were all in Shirley's.I also enjoyed the conference - seeing old friends and meeting new people with BEB is a highlight for me too. As for the master gardener stuff, I've found out it can get you in big trouble. Nilda wants me to do a garden tour for a fund raiser. Come on all you other gardeners, what do you think? I will fess up - we went to several botanical gardens and the Desert Museum in Tucson (ran into Dee and her sister there). All in all, it was a good trip and I'm sure there will be more posting when we've had time to recover. Virginia, just back in AL tonight
Re: She's making it all up/virginia
i think that's a great idea. we have a fabulous botanical garden here in atlanta which i have been to several times and after describing it to phil and even several of his male friends , they even wanted to go. where would you be giving this tour? or maybe it could be a several city thing. Seattle also has a fascinating botanical garden tour. here in atlanta they have several habitats that they have created for all types of plants in their huge collection, including poisonous ones like the venus fly trap and pitcher plant. they also had a poisonous, very colorful frog display. men might find these things interesting. i'm sure alot of women would be interested and young people too.
Re: garden tours
I have visited Atlanta's Botanical Garden and it is well done. I went a couple of years ago when they opened the Children's Garden. I saw the poison dart frogs and the bog garden with the carnivorous plants. I liked the metal frog sculptures scattered around the garden, too.What Nilda actually had in mind, though, was opening private gardens to the public (in other words, letting people see my yard for a donation to the BEBRF). It's not a bad idea, but it would be difficult for me because it might conflict with fundraising activities for other organizations I belong to.
Re: garden tours
oh , then that's a different story. like guided tours of various people's gardens. that sounds like it would be hard to organize.
Re: Proud, Proud, Proud
Martha and I are very thankful we could get to the conference in Phoenix, and meet all the great people there—especially you BB folks! It is true that Shirley was looking for me, but the reason she found me so easily was that I was looking for her too! I wanted to tell her and all on the BB what a tremendous help their posts were to me, and that they were the reason I decided to go to the conference. The conference was excellent in every way. Thanks to all at the BEBRF for a great job.
One thing that the conference confirmed for me was that I should look for another doctor, at least to see if the botox results can be improved. The injections have not been working for me the last few times. Does anyone know of a GOOD botox doc in the western PA area that would include Pittsburgh and east about 100 miles? Also, what was the "test" injection mentioned at the conference to see if one had built up resistance to botox?
My insurance is sticking to its ridiculous policy of not covering botox injections to both eyes on the same day. The Allergan rep at the conference has checked with them again. So I guess I'll have to play their game. If I get a new doc out of town, that will be a real mess. Obviously whoever is responsible for this absurd policy at Highmark Blue Cross Blue Shield never had BEB. Tim in the welcome coolness (after AZ heat) of the mountains of PA.
Re: Proud, Proud, Proud
Hi, Tim,>My insurance is sticking to its ridiculous policy of not covering botox injections to both eyes on the same day. < Maybe you should point out to them that they will have to pay out for two vials of Botox instead of just one, and two office visits instead of just one. That's about $1000 difference around here. Do they give you any justification, however lame, for their policy? Check back with BEBRF for names of other Drs in your area. But that insurance Co. sounds off the wall to me. --- Lynn
Re: Proud, Proud, Proud
Tim,
I'm so glad that you and your wife made it to the conference and it was great to meet you both. What I understood about the "test" injection is that a significant amount of Botox is injected into the forehead (corrugator or procerus muscle, I think) because they are strong muscles and it is hard to give too much there. Then if you can still move those muscles, they conclude you are non-responsive (for whatever reason) to Botox.I have BCBS of Alabama and, thank goodness, they have no such policy. I don't get injections locally and it would be a mess. Pensacola wouldn't be such a problem, because it is a two-day deal anyway, but Birmingham would mean two four-hour round trips and that would be a hassle. Maybe Lynn's strategy of pointing out the cost savings to them would make a difference. Virginia in AL, where it doesn't feel any cooler than AZ
Re: Proud, Proud, Proud
Virginia, that's actually what my Neuro did and since I was still able to move those muscles he concluded that I'm immune to Botox. Now I wonder if the amount he injected into the forehead was "significant" enough.
Christel
Re: Proud, Proud, Proud
Tim ... The tests I had were first, an injection above one eyebrow and when it drooped (for about six weeks) it was concluded that the Botox worked; second test was a simple blood draw, which was sent somewhere to be tested for antibodies. Neither was any big deal, unless you consider having a drooping eyebrow a problem.Sally in cool North Idaho
Re: HI Tim
Just wanted to say Hi to you and Martha. I really liked both of you and was glad that you came to the conference. I'm also glad to see you posting. See, it's easy.
I think that Virginia answered your "test" question.
I wish that you could share some of that PA coolness with Arkansas.
Welcome to the bb. You are officially "one of us" now.Shirley in AR. in hot, hot, humid Arkansas
Re: Proud, Proud, Proud
Tim, just wanted to echo Shirley's comments regarding your post.
I also enjoyed meeting you and Martha and hope the insurance policy can be resolved. Anyone that knows anything about this disorder would have to agree how rediculous it would be not to do both eyes at the same time. It's just another example of the ignorance and lack of education regarding our disorder. Maybe one of our bb folks on the east coast could help suggest another doctor. You might even want to consider
going to NY where Mindy sees Dr. Bressman, who is a well respected doctor in this field. I may have to go to LA or San Francisco Bay area
but we wouldn't be the first to have to travel to get the best care.Best regards and we'd like you to keep visiting with us!!! Joanne M. San Diego, CA
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