newsletter


Posted by kathy , Nov 15,2001,08:54   Archive
i am more than a little overwhelmed at the lack of non-encouraging news about our disorder. Shirley's comments were about the only bright spot in it. and it certainly reaffirmed the fact that this is a physical and not mental condition. any comments? also i still do not understand this concept of "nicking" the botox. how does one alter a protein?



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Re: newsletter

Re : newsletter --- kathy
Posted by kathy , Nov 18,2001,05:42 Top of Thread Archive
well i can see noone is going to respond to this. i did find one thing that keeps me going and that was the section on stress management. i have to tell myself firmly to make time for the things that make me more relaxed and say no to the things that make it worse.

--modified by kathy at Sun, Nov 18, 2001, 05:43:44




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Re : Re: newsletter --- kathy
Posted by Joann Humphrey , Nov 18,2001,09:11 Top of Thread Archive
Kathy, you are certainly right in trying to avoid stress, & taking more time to relax. I wish I could drive & would sign up at the fitness center. I know I need more exercise. Guess I should just walk around our neighborhood. Medication also helps me (Clonazepam).
Joann in Ft Smith, ARK



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Re: newsletter

Re : Re: newsletter --- kathy
Posted by joyce Whitt/NC (Joyce Whitt,joyce Whitt/NC), Nov 18,2001,14:11 Top of Thread Archive
Kathy, I haven't been able to read the BB for several days so when I read your post I wanted to answer but probably not the way you expected.

Let's face it, stress is a part of life. The only way to avoid stress is to do nothing, stay home, in bed, under the covers and then it is no guarantee that stress won't find you.

We all have choices to make. I chose to keep on keeping on. My eyes have been in almost total shut down mode for the past two weeks. I get Botox Nov. 26th and that is 8 days away. The doctors do not have all the answers nor do the researches. I think Delaine explained it so well. This is an imperfect world with imperfect people whose motives are not always pure. I can't do anything about them but I can do something for myself. I will 65 next month (Dec 19) and never in my wildest dreams did I expect my older years to be spent in trying to open my eyes. I have a friend who is 10 years younger than I am and we share the same birthday, I call her my twin sister. She is battling cancer and doesn't have much time left. She has a life threatening disease and mine is just life changing. That changes my prospective. I had rather have this condition than hers.

Even tho the Botox works sometimes and sometimes it doesn't I will continue to try it and hope each time that this might be the time it works. In the mean while I will continue to do all that I can do even if my eyes are closed for 95% of the time. Now is all I have -

I think this would be a good slogan for the BB "Those who have known a problem first hand are usually able to help others walking through the same difficulty."




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Re: newsletter

Re : Re: newsletter --- kathy
Posted by Moderator-JB , Nov 18,2001,15:45 Top of Thread Archive
Kathy:

At times this disorder can be so very frustrating. Take heart in the fact that many people share our problem and are finding ways of dealing with it.

My Mother once asked me what I was going to do now (since I had BEB). My answer was: 'I'll do what I can when I can and when I can't, I'll do something else.'

One step in front of the other ...

Judy




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sorry not much response

Re : newsletter --- kathy
Posted by Delaine Inman , Nov 18,2001,09:45 Top of Thread Archive
Sorry it seems no one paid attention to your remarks. I guess the truth is that the reality of how little the progress has been is hard to face. The conferences on Sat. every year are for physicians who are presenting papers or data on what they have been doing to justify or get more money for research. We want results by finding a cure and they are still studing things that seem to let us know we are far away from it. The rest of the time is spent on treating the symptoms and explaining things most of us already know. Yes it is discouraging, but it is all we've got. 1 in 10,000 have dystonias and we are not getting much money except through the foundation to even look at BEB/Meige. I've mentioned before the politics of reasearch and the book I read that really opened my eyes when I could still sit and read a book. It was by Dr. Candice Pert and it blew me away(Molecules of Emotion). She says if it weren't for the pettiness of politics and competition, Cancer and HIV and many other diseases would already have been cured. It is easy and fascinating reading and might be available on audio now. She was a Noble prize researcher with NIH and it was such a dirty little game she left and is not very popular and many tried to discredit and ruin her career because she tried to expose the truth. So yes there is still no cause or cure and honestly it will probably come from studying a more well know neurological disorder when it does come. The only thing I got out of the conference I attended the year before was meeting others I had talked with on the BB, meeting people from the BEBRF and the panel discussions and Q&A panels of patients and doctors. Sometimes the answers from the doctors were very helpful and sometimes they insulted my intelligence and were rude and narrow minded. But I tried to remember my favorite quote, "If they knew better, they'd do better" or in simple terms, "Forgive them for they know not what they do (or what they are talking about). If all you have is a hammer, all you see is a nail." I try not to let it discourage me from trying to make things better or from turning over every rock looking for something that will work for me and hopefully others. That's the best thing about the BB, we share ideas. It was great the newsletter had so many of the presentations in it, but you are very smart to realize that the best thing they printed was Shirley's comments about the Bulletin Board and the comments from other patients. I'm glad they had something on stress management and printed that too. We can't change the circumstances only our response and attitude about the circumstances. Hang in there and together we can help keep our attitudes positive and our feet planted in reality without losing hope. Just my opinion and it gets me in hot water at times, oh well!



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Re: sorry not much response

Re : sorry not much response --- Delaine Inman
Posted by kathy , Nov 19,2001,10:24 Top of Thread Archive
no, it helps for you to also recognize the utter reality of the things printed also. it helps to read it but i also want something headed towards a cure.



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Re: newsletter

Re : newsletter --- kathy
Posted by Dee in OR , Nov 18,2001,20:59 Top of Thread Archive
Kathy,

I'm sorry I didn't consciously respond to your post about the non-encouraging news. I was at the conference and the only thing of value that I got from it was meeting Shirley and the other bulletin board people. I thought the doctors were rude and arrogant and I walked out of two different workshops because of that. One doctor went so far as to tell me I didn't have tardive dystonia because he didn't like the comments I made about medications that cause dystonia! I have no idea how one alters a protein.

Dee in OR




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Re: newsletter/dee

Re : Re: newsletter --- Dee in OR
Posted by kathy , Nov 19,2001,10:29 Top of Thread Archive
one of my goals is to attend one of these conferences; i think it's very valuable to have them for us. but yes as i read some of the newsletter it seeemed as if they were talking "above our heads". it seems as if the doctors don't want to face some of the things that have been proven to cause this disorder.



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