| Posted by Shirley-Arkansas-USA ® , Apr 22,2002,10:58 | Archive |
Editorial
Letter: Botox gives limited relief
April 22, 2002
Every time I turn on the radio, TV or even read the newspaper, there is a story about Botox. Botox parties, Hollywood stars trying to look younger.
What about all the thousands of people with real medical disorders who need this Botox? I am one of those people, and I have a condition called Blepharospasm. What is it? This baffling condition takes its name from the Greek word for eyelid (blepharo) and spasm, meaning an uncontrollable muscle contraction. This is not a twitch, nor does it have anything to do with my vision. This is a neurological condition that starts in the brain in an area called the basal ganglia, causing excess electrical activity in the seventh facial nerve. The cause is unknown.
I have had this condition for seven years, with 1½ years spent in trying to find a doctor who could even give this condition a name. Over the weeks and months, the condition tends to get worse. At its worst, the patient cannot willfully open his or her eyes. Sometimes this lasts a few seconds to minutes. The threat of another spasm coming on without warning makes driving impossible and even walking dangerous. I had to retire early because I could not see to get to work or, once there, do my job properly. Is this temporary? Unfortunately, no. I will have to deal with this for the rest of my life.
Botox injections is the treatment of choice. It works for some, and for some it does not. It takes time to get the correct dosages.
Botox is a poison, botulism. It is injected in very small amounts into the muscles surrounding the eye and eyelid. It semi-paralyzes the muscles so that they, hopefully, will stay open. Given in the wrong places, it can cause droopy eyes. The cost is very expensive. Has it helped my wrinkles? No!
Because of the ineffective treatments of Botox, I have had to have surgery to remove portions of muscles around my eyes. It is not a cure, but it did help the first time. For six glorious weeks, I could see and it was wonderful. But gradually the symptoms came back, and it is back to Botox, which for me gave me only several days of relief out of a two- to three-month time. I had surgery again last August and the results were not as good as the first time.
I am not telling my story so that you will feel sorry for me. I just want you to think of the legitimate uses of Botox. There are others with different forms of Dystonia who need and depend on this drug to help them just to function each day.
There is a foundation in Texas called the Benign Essential Blepharospasm Research Foundation, which could use your help. All money sent to them is used for research. Look it up on the Internet, you might find some interesting reading. There also is a bulletin board where people like me can go for advice and encouragement. I have learned more from this bulletin board than I have learned from the doctors I have seen.
JOYCE WHITT
Archdale
©High Point Enterprise 2002
--modified by Shirley-Arkansas-USA at Mon, Apr 22, 2002, 11:01:28
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Replies to this message
Re: Joyce's newspaper article
GREAT JOB! My doctor recently told me that Mattie Lou has done more for patients than any doctor could ever do. She began the foundation and it is up to the members to keep spreading the word!
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Kelly Saffell ® , Apr 22,2002,11:09 Top of Thread Archive Re: Joyce's newspaper article
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Attagirl! We should all be doing the same or something similar. I will try to find the courage to do this......
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by pippa ® (Pippa,pippa), Apr 22,2002,13:02 Top of Thread Archive
Pippa, nervous about her second set of injections/shots on Wednesday...Re: Joyce's newspaper article/PIPPA
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Good luck on Wednesday, Pippa. Relax, pray, whatever, to get through it - it only lasts such a little while and you'll do great (but none of us enjoy it!). Hugs
Re : Re: Joyce's newspaper article --- pippa Posted by June in Toronto ® (June Floyd,June in Toronto), Apr 22,2002,15:18 Top of Thread Archive June in Toronto
Re: Joyce's newspaper article
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Nice job, Joyce. We should all dedicate these information/awareness letters to Mattie Lou.
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by June in Toronto ® (June Floyd,June in Toronto), Apr 22,2002,15:10 Top of Thread Archive June in Toronto (beb/meige)
Re: Joyce's newspaper article/Joyce
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Great!! joyce, how did you get them to do this?
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Apr 22,2002,17:33 Top of Thread Archive Re: Joyce's newspaper article/Joyce
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Kathy, in our newspaper they have an editorial page and they encourage people to write in and you can express your opinions. Of course it is monitored much like the BB so I decided that this would be a good way to get my message across.
Re : Re: Joyce's newspaper article/Joyce --- Kathy in Atlanta Posted by joyce whitt/NC ® (Joyce Whitt,joyce whitt/NC), Apr 22,2002,17:43 Top of Thread Archive I have written to the editor many times over the years. I just have not done anything lately. Check your local newspaper to see if they have a forum for writing in "letters to the editor".
Joyce in NC - the weather is changing. We are going from the 80's down to the 60's. I think Wednesday morning they are calling for temperatures in the 30's. That is the beauty of living in NC, the weather never stays the same.
Re: Joyce's newspaper article/Joyce
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Joyce, i had to drop the local newspaper years ago; not only did it take me over a week to read the Sunday section alone, I'm allergic to the print. It gets on my fingers, irritates my skin and makes me sneeze and congested.
Re : Re: Joyce's newspaper article/Joyce --- joyce whitt/NC Posted by Kathy in Atlanta ® (kathy,Kathy in Atlanta), Apr 23,2002,10:00 Top of Thread Archive Re: Joyce's newspaper article/Joyce
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Kathy, I know what you mean about reading the paper. I have not been able to read the paper in ovrer 3 months. I can see the headlines but I can't read the print. Our's is a morning paper and my eyes are worse in the morning and by evening, I've heard all of the news on the TV.
Re : Re: Joyce's newspaper article/Joyce --- Kathy in Atlanta Posted by joyce whitt/NC ® (Joyce Whitt,joyce whitt/NC), Apr 23,2002,10:19 Top of Thread Archive Joyce in NC who is really been "talkative" today.
Re: Joyce's newspaper article
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Great article, Joyce.
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Evelyn ® , Apr 22,2002,18:34 Top of Thread Archive
EvelynRe: Joyce's newspaper article
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Joyce-that's wonderful! You've inspired me! I've done some writing for the local newspaper, but have been lazy lately.....I'm going to get busy on it!! Mary
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by MaryNY ® , Apr 22,2002,21:31 Top of Thread Archive Re: Joyce's newspaper article
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Thank you, Shirley, for sharing that with us ... and a big THANK YOU to Joyce for writing it! It should be picked up by AP and wired to every newspaper in the country. It is especially timely and I believe would be widely read. Joyce, please send a copy to USA Today.
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Cynthia ® , Apr 22,2002,21:59 Top of Thread Archive Way to go!
Cynthia
Re: Joyce's newspaper article
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Cynthia, how would I do that? I would be happy to send it to anyone but where do I get addresses?
Re : Re: Joyce's newspaper article --- Cynthia Posted by joyce whitt/NC ® (Joyce Whitt,joyce whitt/NC), Apr 23,2002,09:54 Top of Thread Archive Joycse in NC
Re: Joyce's newspaper article
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I think it is pretty bad when a person can't even spell his/her own name. O well, you all understand my vision is still blurry from ointments. Good excuse.
Re : Re: Joyce's newspaper article --- joyce whitt/NC Posted by joyce whitt/NC ® (Joyce Whitt,joyce whitt/NC), Apr 23,2002,09:59 Top of Thread Archive Cynthia, I did have an idea, I could call Doug Clark who is the person in charge of the editorial page and ask him how to get in touch with other papers. Maybe he will help me?
Joyce in NC (see I spelled it right that time)
Re: Joyce's newspaper article
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That sounds like a good idea. You could also send a letter to the editor at USA Today. Their website is www.usatoday.com Click on "contact us" and it will take you to a page where you can click on "letters to the editor". What's there to lose?
Re : Re: Joyce's newspaper article --- joyce whitt/NC Posted by Cynthia ® , Apr 23,2002,19:03 Top of Thread Archive I know nothing about AP other than they may pick up stories and put them on their "wire" --- (any journalists out there who can help here?)
Good work, Joyce -- and Kelly, too!
Cynthia in IL where the sun is shining but it's still a little cool.
--modified by Cynthia at Tue, Apr 23, 2002, 19:05:19
Re: Joyce's newspaper article
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Go Girl! Great editorial. We are getting the message, one at a time. My article, Kelly's, yours and probably others have had them in the past. We've got to keep this up.
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Delaine Inman ® , Apr 22,2002,22:26 Top of Thread Archive Re: Joyce's newspaper article
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Very well done, Joyce. I'm proud of you for making the effort to write this with all the discomfort you've been having. Sorry the new neurologist didn't live up to your hopes, but perhaps it's just taking time and he wants to be thorough.
Re : Joyce's newspaper article --- Shirley-Arkansas-USA Posted by Sally - in - Idaho ® , Apr 23,2002,00:16 Top of Thread Archive Sally in North Idaho who will get busy trying with our newspaper after tomorrow.
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