Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 ...My wife has had PLS for over five years and she has been receiving periodic botox injections for almost as long and they work great. When her speech is at it's worst, she is at times barely intelligible. It is slurred and halted and she has trouble forming words. As you know, no two PLS patients are alike, so I'll share with you her experiences and hope the same holds true for you. Her otolaryangologist works in concert with her neurologist to administer the shot. The area around the Adam's Apple is desensitized and a mico-fine needle is inserted to probe the area. The neurologist is reading a screen of some type and giving instructions to his partner. When the affected tissue to located, the botox is released and needle removed. The entire procedure takes about 20 minutes and is relatively painless. The thought of that it is actually happening is the most freightening part of the whole thing. Generally, the wait in the doctor's office is longer than the actual procedure. Botox is actually botulinum toxin (food poisoning). When administered in a very minute dose for this purpose, it has a dramtic positive effect on her speech. Immediately following the injection, her voice becomes very squeaky for a few days, then breathy. Eventually, within about two weeks, her speech begins to improve to a point where it's almost normal. It's amazing. The affects of the shot can last from three to six months depending on the patient. The body slowly builds up an immunity to the toxin and the procedure needs to be repeated. When this was first suggested, we looked at the doctor like he had two heads. But after some consideration, my wife very bravely decided to give it a try and we have been thankful ever since. The key to all of this is finding a doctor who knows what he is doing. We did have an injection administered by a Tampa physician that failed due to his ineptness. It was terrifying and painful for her. Fortunately, we have two doctors here in St. sburg who know their stuff and we are very satified and confident with them. The procedure has become more and more common over the past few years. It is medically proven and covered by insurance (at least ours is). Botox is used for a number of medical procedures from removing crow's feet and age lines, to eliminating muscle twitching, severe writer's cramps and so on. Good luck, . I encourage you to move forward with this opportunity. With all the ailments and symptoms associated with PLS, this is one of the very few that the patient can actually improve and enjoy quality of life. Let me hear how it goes. Kind thoughts always...Doug Brand _______________________________________________________________________________ Subject: botox From: <PLS-FRIENDSonelist> at ~Internet Date: 9/16/99 4:13 PM I would be interested to learn about the experience of others with botox injections to help with speaking difficulties. This is something recommended by an otolaryngologist which I am contemplating but haven't tried yet. The botox actually weakens the vocal chords, alleviating the spasticity, although it may also create the danger of swallowing difficulties. It won't be a total solution but it might help. But any help would...well, help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Dear PLS ers, I have had over the last four years at least 6 injections of botox. It has help to speak more clearly and be understood more. I have at least two per year the last lasted me a year but I should of done earlier. It takes me about a month to regain full speaking voice. The first week nothing is noticeable then the second week just whispers each week its stronger. I do have trouble with liquids but not soilds foods liquids cause choking but I make a practice of no liquids while out in public. Believe me it has worked for me I dont know what I would do without. The first shot you get they give you a small dose and then you see how long it last the second shot they either decrease or increase the dose. My husband loves it I cant talk for several weeks!!! My nero and Ear nose throat Doctor are present along with a tech that monitores the injection and together they are able to see how close they are to the vocal chord then when they know that the needle is in the right spot the botox is injected. Hopes this will you Flora/St Pete Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Doug, I had the botox injection today. I appreciated the encouragement that you and Flora provided. We will see happens. By the way, do you know the dosage that she receives? As a first-timer, I got one and a half whatevers. Jeff botox > From: <PLS-FRIENDSonelist> at ~Internet > Date: 9/16/99 4:13 PM > > I would be interested to learn about the experience of others with botox > injections to help with speaking difficulties. This is something recommended by > an otolaryngologist which I am contemplating but haven't tried yet. The botox > actually weakens the vocal chords, alleviating the spasticity, although it may > also create the danger of swallowing difficulties. It won't be a total solution > but it might help. But any help would...well, help. > > > > ---------------------------------------------------------------------------- ---- > <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " > > <HTML><HEAD> > <META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type> > <META content= " MSHTML 5.00.2014.210 " name=GENERATOR> > <STYLE></STYLE> > </HEAD> > <BODY bgColor=#ffffff> > <DIV><FONT size=2>I would be interested to learn about the experience of others > with botox injections to help with speaking difficulties. & nbsp; This is > something recommended by an otolaryngologist which I am contemplating but > haven't tried yet. & nbsp; The botox actually weakens the & nbsp; vocal chords, > alleviating the spasticity, although it may also create the danger > of & nbsp;swallowing difficulties. & nbsp; & nbsp;It won't be a total solution but it > might & nbsp; help. & nbsp; But & nbsp; any help would...well, help.</FONT></DIV> > <DIV> & nbsp;</DIV> > <DIV><FONT size=2> </FONT></DIV></BODY></HTML> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Hi friends: I am Laurel, age 51, female, and new to PLS. I was diagnosed just about 2 weeks ago. I would like information on lecithin, how much to take, stretching & exercise, how much to do, and what has helped others to slow down the progression. I am just so tired most of the time I can hardly stand myself. I still ambulate fair, with no aids, work full-time, & do all my own housework, plus help outside with chores and a little gardening. The only problem with my voice is that I cannot sing very well anymore, and used to be a soloist until about 2-3 years ago. Plus, my voicebox hurts. Strange feeling. I have really enjoyed all the comments and emails so far from PLSPals. I think this support system is really going to help me. Thanks to all and God bless! Laurel Re: botox > > >Doug, > >I had the botox injection today. I appreciated the encouragement that you >and Flora provided. We will see happens. By the way, do you know the >dosage that she receives? As a first-timer, I got one and a half whatevers. > >Jeff > botox >> From: <PLS-FRIENDSonelist> at ~Internet >> Date: 9/16/99 4:13 PM >> >> I would be interested to learn about the experience of others with botox >> injections to help with speaking difficulties. This is something >recommended by >> an otolaryngologist which I am contemplating but haven't tried yet. The >botox >> actually weakens the vocal chords, alleviating the spasticity, although >it may >> also create the danger of swallowing difficulties. It won't be a total >solution >> but it might help. But any help would...well, help. >> >> >> >> > > >--------------------------------------------------------------------------- - >---- > > >> <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " > >> <HTML><HEAD> >> <META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type> >> <META content= " MSHTML 5.00.2014.210 " name=GENERATOR> >> <STYLE></STYLE> >> </HEAD> >> <BODY bgColor=#ffffff> >> <DIV><FONT size=2>I would be interested to learn about the experience of >others >> with botox injections to help with speaking difficulties. & nbsp; This is >> something recommended by an otolaryngologist which I am contemplating but >> haven't tried yet. & nbsp; The botox actually weakens the & nbsp; vocal >chords, >> alleviating the spasticity, although it may also create the danger >> of & nbsp;swallowing difficulties. & nbsp; & nbsp;It won't be a total solution >but it >> might & nbsp; help. & nbsp; But & nbsp; any help would...well, >help.</FONT></DIV> >> <DIV> & nbsp;</DIV> >> <DIV><FONT size=2> </FONT></DIV></BODY></HTML> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 1999 Report Share Posted September 24, 1999 Bettie Jo.....Let me give you the " layman's " understanding of what botox does. My wife has been receiving injections into her vocal cord area for several years with a high degree of success. Her speech improves dramatically, which of course, puts her more at ease. Botox does not cause the muscle to die, but rather " puts it to sleep " for a period of time. Eventually, the body builds an immunity to the toxin and the procedure must be repeated. The dosage can last for three to six month or longer depending on the patient etc. Botox has been used effectively for a number of reasons. Plastic surgeons use it to eliminate crow's feet and aging lines around the mouth, eyes and forehead. It also has been used to correct some forms of facial muscle twitching, severe writer's cramp, spastic gaits etc. It's apllication does not work for everyone. My wife just happens to be one that responds favorably to the injections. Perhaps Dr. Bill can be more specific. In any event, if you are experiencing speech problems associated with PLS, it would be worthwhile to discuss the possibilites of botox treatments with your neurologist. If you are a worthy candidate, botox will make all the difference in the world to you. Good luck and kind thoughts always....Doug _______________________________________________________________________________ Subject: Botox From: <PLS-FRIENDSonelist> at ~Internet Date: 9/23/99 7:16 PM Dear Bill, MD, I am confused about something and thought you might be able to set me straight. I recently read a posting regarding Botox injections. The writer said that Botox was a protein which was genetically engineered. I had experience with Botox when I worked as a social worker in a long term care facility for medically fragile children. Several of our children had in increased muscle tone and severe contractures. They received Botox injections to improve range of motion and decrease tightness. I was informed that Botox was a derivative of botulism toxin, hence the name Botox. It reportedly worked by causing a small portion of muscle,at the site of the injection, to die. This produced a decrease in muscle tone thereby making personal care, range of motion, etc. much easier to provide. Forgive me imposing on your medical expertise. I would, however, be mortified if the information we gave to parents was inaccurate. Thanks, in advance, for any information you can provide. Take care! Bettie Jo Received: from mail.sptimes.com [206.156.137.5] by cc.sptimes.com (ccMail Link to SMTP R8.31.00.5) ; Thu, 23 Sep 1999 19:26:10 -0400 Return-Path: <errors-92704-493-dbrand=sptimes.comonelist> Received: from onelist.com ([209.207.164.225]) by mail.sptimes.com (Post.Office MTA v3.5.3 release 223 ID# 0-58344U100L100S0V35) with SMTP id com for ; Thu, 23 Sep 1999 19:13:54 -0400 Received: (qmail 13937 invoked by alias); 23 Sep 1999 23:53:03 -0000 Received: (qmail 13731 invoked from network); 23 Sep 1999 23:53:00 -0000 Received: from unknown (HELO out4.prserv.net) (165.87.194.239) by pop1.onelist.com with SMTP; 23 Sep 1999 23:53:00 -0000 Received: from newmicronpc (slip-32-100-44-203.nc.us.ibm.net [32.100.44.203]) by out4.prserv.net (/) with SMTP id XAB47604; Thu, 23 Sep 1999 23:25:20 GMT Message-Id: X-Sender: bettiej@... (Unverified) X-Mailer: QUALCOMM Windows Eudora Light Version 3.0.5 (32) Date: Thu, 23 Sep 1999 19:16:29 -0400 To: PlsPalsonelist Cc: PLS-FRIENDSonelist Mime-Version: 1.0 Mailing-List: list PLS-FRIENDSonelist; contact PLS-FRIENDS-owneronelist Delivered-To: mailing list PLS-FRIENDSonelist Precedence: bulk List-Unsubscribe: <mailto:PLS-FRIENDS-unsubscribeONElist> Reply-to: PLS-FRIENDSonelist Subject: Botox Content-Type: text/plain; charset= " us-ascii " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Thanks for the information. When I receive your messages, they are difficult to read, I am receiving them black print, on dark gray. Anyone else see it that way, or just me. Bye! Love Old#63 aka Rita, Ma, Me or Auntie Rita or Grandma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Unfortunately, I wasn't able to read the article at all... My program doesn't show the attachment... Can I somehow get a copy, please? Thank you Heike from Michigan *doing the research for her dad* Quote Link to comment Share on other sites More sharing options...
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