Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 In the very beginning before I even knew I had PLS I went to speech therapy. They knew I had some type of vocal cord disorder but didn't have a name but later they labeled it Spasmodic Dysphonia. I saw a ENT doctor at University of South FL. Medical Center. Who thought that it might be motor neuron disease and told me to see a neurologist and the rest is history. Anyway to make this short, I went to the therapy. I did the stretching of the neck making the e,i,o,u sounds, shoulder excersies,even had the video down throat that was fun!! Nothing helped but I did start botox shots. Its not for everyone your vocal have to be squeeseing together its like a strain strangled sound not slurred. Most PLS'er who have voice problems have their vocal cords in a relaxed state all the time they should move in and out so in that case botox would not work.............thats my story.......Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Dont feel bad Sara One day after my wife went to work i had a balling spell over how frustating it is to talk .then i decided that iam who i am and if people dont like it then i dont need them .So now i talk funny but if and people look at me like im strange when i talk .i keep talking anyway. Im finding out how frustrating it is for those poor people whove had this for years .this is when you better like you for what you are .i have been calling long distance looking for a place to live in Fla. at first their silent and then their off for a minute then back on like their telling their office mate they got a drunk on the phone .Then when they come back on i tell them what i have and excuse me for my speech and then they feel like a heel .you can tell .Then they say oh no your fine .But make sure you tell them so they know when to turn on the compassion . LOL GEO From: fossil_walts2002 To: PLS-FRIENDS Sent: Thursday, April 01, 2004 8:00 AM Subject: Speech Therapy I have been attending speech therapy for 10 sessions now and I do not see any benefits. Has anyone has great results with attending speech therapy? I have been doing all the exercise 3 times a day and my voice is slurred and very slow. This started about 6 months ago for me. I had a beautiful voice and the company that I worked for -used my voice on the answering machine. Now when I leave a message on someoneâ?Ts machine - I sound drunk.... This can be so embarrassing when you are speaking with people and they do not understand whatâ?Ts wrong. Any advice? God Bless. Sara ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Geo, Thanks for your reply. It seems these days that I have to explain to many people about my condition. You are right - they feel like a heel when you explain. It seems like I have good days - then the next day I can hardly talk. I'm more nosal at times. Where are you moving to in Florida? I have a sister that lives in Cape Coral - by Ft. Meyers and she would be happy to help if you needed anything. God Bless my friend. Sara > Dont feel bad Sara > One day after my wife went to work i had a balling spell over how frustating it is to talk .then i decided that iam who i am and if people dont like it then i dont need them .So now i talk funny but if and people look at me like im strange when i talk .i keep talking anyway. Im finding out how frustrating it is for those poor people whove had this for years .this is when you better like you for what you are .i have been calling long distance looking for a place to live in Fla. at first their silent and then their off for a minute then back on like their telling their office mate they got a drunk on the phone .Then when they come back on i tell them what i have and excuse me for my speech and then they feel like a heel .you can tell .Then they say oh no your fine .But make sure you tell them so they know when to turn on the compassion . LOL GEO > From: fossil_walts2002 > To: PLS-FRIENDS > Sent: Thursday, April 01, 2004 8:00 AM > Subject: Speech Therapy > > > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someoneâ¿ " s machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand whatâ¿ " s > wrong. Any advice? God Bless. Sara > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Thanks Flora for your reply. Went to my last speech therapy today and they suggested that I see an ENT doctor to see if anything else can be done. She explained that my vocal cords are fine - it's more in the nose with the nosal sounds. I really appreciate your feed back. Knowledge is Power at this stage of the game. Your Friend. Sara > In the very beginning before I even knew I had PLS I went to speech therapy. > They knew I had some type of vocal cord disorder but didn't have a name but > later they labeled it Spasmodic Dysphonia. I saw a ENT doctor at University of > South FL. Medical Center. Who thought that it might be motor neuron disease > and told me to see a neurologist and the rest is history. Anyway to make this > short, I went to the therapy. I did the stretching of the neck making the > e,i,o,u sounds, shoulder excersies,even had the video down throat that was fun!! > Nothing helped but I did start botox shots. Its not for everyone your vocal > have to be squeeseing together its like a strain strangled sound not slurred. > Most PLS'er who have voice problems have their vocal cords in a relaxed state > all the time they should move in and out so in that case botox would not > work.............thats my story.......Flora > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Sara, I, too began my speech problems with people thinking I was drunk. I used to sing in a women's group, and now can't talk, much less sing. I've had vocal cords examined and they are fine. Problem is my tongue, as is the problem with many PLSers with bulbar problems. My lifeline is my Talking Computer. Mine is Enkidu. I understand that Dynavox has just purchased Enkidu. There are websites for augmentive speech devices in the Internet Resources of Synapse site. http://www.synapsePLS.org These devices are durable medical goods, and covered by insurance. I'd be happy to explain loads to you about using a computer to speak. It has its frustrations, but it does let you 'talk'. Also, both my husband, daughter and her kids know American Sign Lanuage. I know it too. That's an invaluable help. The alphabet is on the web. Just type into a query box " american sign language " , then print out the symbols and memorize. Bulbar problems will only get worse. You can't control the problem, but thanks to technology, you can remain connected to others. Loss of speech is clearly my greatest daily challenge. I say my " thank you " prayer to the engineers who developed text to voice software every day. As to the phone, we have caller ID. I only answer it if I know the caller. I say hi, then they know I'll hook up my setup with headphone and my Enkidu. If I don't know the caller, I let the answering machine get it. I even can conduct my landscape design business (albiet slowly) over the phone with my computer. Thurza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Well wer egoing down in May -June to look i like the westcoast or middle s ok i have a brothe rin Ft. myers who drinks way too much so i dont want to be bothered by him . Con is in between a rock and a hard place her bank is being purchased and wont be final until Jan. she thinks ?they'll give her a severance package if they eliminate her job. also she will have to buy another insurance when she quits .So i talked her into just getting another job down there .Her best friend is moving there .I dont think theyll give her a severance deal ,she wasnt saleried ? shes hourly .Scares her about how much insurance is going to cost her .Im Ok im on Medicare SSDI. Ive done the internet search and found over a dozen anywhere from Clearwater in the north to maybe Arcadia south and Lakeland to the east .Im thinking Manufactured Double wide in a gated community .. with heated pool whirlpool and a golf course ? she likes water so thats got to be in there she wanted the Gulf but our friends try to talk her out of it as for Hurricanes etc .Maybe a lake ? My Speech is what they call Hypernasal or Dysarthic also . I hope we get this done this Summer as i dont want to do another winter here . When we fall and being stiff as we are the bones will break alot easier . Thats why babies dont get broken bones easy, their limber.Thanks GEO Speech Therapy > > > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someoneâ¿ " s machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand whatâ¿ " s > wrong. Any advice? God Bless. Sara > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Unfortunately there is nothing to help but an orthotic palate lift. It will not help the speed, it will just lift the soft palate in the back of your throat so it won't sound as nasal. I've been trying to find a teaching dental lab that will make one for me. Regular cost is $4000.00 here. Insurance don't pay. A dental lab will charge 1500. Donna > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someone’s machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand what’s > wrong. Any advice? God Bless. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Any suggestions about a drive-through windows? I'd like to order food and they get all frustrated trying to understand me. Donna > Dont feel bad Sara > One day after my wife went to work i had a balling spell over how frustating it is to talk .then i decided that iam who i am and if people dont like it then i dont need them .So now i talk funny but if and people look at me like im strange when i talk .i keep talking anyway. Im finding out how frustrating it is for those poor people whove had this for years .this is when you better like you for what you are .i have been calling long distance looking for a place to live in Fla. at first their silent and then their off for a minute then back on like their telling their office mate they got a drunk on the phone .Then when they come back on i tell them what i have and excuse me for my speech and then they feel like a heel .you can tell .Then they say oh no your fine .But make sure you tell them so they know when to turn on the compassion . LOL GEO > From: fossil_walts2002 > To: PLS-FRIENDS > Sent: Thursday, April 01, 2004 8:00 AM > Subject: Speech Therapy > > > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someoneâ?Ts machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand whatâ?Ts > wrong. Any advice? God Bless. Sara > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi Sara, Doesn't it just upset you? I used to sing soprano in my church. I loved to play the guitar and sing. I also used to answer the phones at my job and my boss would get compliments about how nice the person answering the phone sounded. Now..., the other day I left a message for my husband on the cell phone and when I played it back a few days later I died laughing because I could not understand what I said. No wonder the poor man never answered me back. Oh it's better to laugh then cry!! I will definitely have a lot to praise God for when I am cured/healed or whatever. Soon Sara we will all have a wonderful testimony. Take care and... God Bless Yolanda Speech Therapy I have been attending speech therapy for 10 sessions now and I do not see any benefits. Has anyone has great results with attending speech therapy? I have been doing all the exercise 3 times a day and my voice is slurred and very slow. This started about 6 months ago for me. I had a beautiful voice and the company that I worked for -used my voice on the answering machine. Now when I leave a message on someoneâ?Ts machine - I sound drunk.... This can be so embarrassing when you are speaking with people and they do not understand whatâ?Ts wrong. Any advice? God Bless. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Sara, I tried speech therapy four different times. I still talk slow. When people don't understand what I said because they weren't listening, I talk even slower and stick a finger in one ear. It makes them feel stupid. Then they begin listening. The best advice I have is don't let it bother you. When you're doing the best you can, and they refuse to understand you - just let it go. If it's really important, write it down - if it's not important, stop talking. I guarantee, the next time they will listen closer. What I think is amusing is the number of people who begin talking louder - as if you can't talk plain you must be hard of hearing also. I also find that if you lean toward them and whisper, they pay more attention. None of the above may make you more easily understood, but I guarantee some of them will make talking gibberish much more fun. Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 My friends who are deaf hand write it out and then give it at the window. Shell Fisch http://shellfisch88220.tripod.com/ Pack 255 site http://shellfisch88220.tripod.com/theshellfischconnection/ Family site > >Reply-To: PLS-FRIENDS >To: PLS-FRIENDS >Subject: Re: Speech Therapy >Date: Fri, 02 Apr 2004 01:44:48 -0000 > >Any suggestions about a drive-through windows? I'd like to order >food and they get all frustrated trying to understand me. >Donna > > > > > Dont feel bad Sara > > One day after my wife went to work i >had a balling spell over how frustating it is to talk .then i decided >that iam who i am and if people dont like it then i dont need >them .So now i talk funny but if and people look at me like im >strange when i talk .i keep talking anyway. Im finding out how >frustrating it is for those poor people whove had this for >years .this is when you better like you for what you are .i have been >calling long distance looking for a place to live in Fla. at first >their silent and then their off for a minute then back on like their >telling their office mate they got a drunk on the phone .Then when >they come back on i tell them what i have and excuse me for my speech >and then they feel like a heel .you can tell .Then they say oh no >your fine .But make sure you tell them so they know when to turn on >the compassion . LOL GEO > > From: fossil_walts2002 > > To: PLS-FRIENDS > > Sent: Thursday, April 01, 2004 8:00 AM > > Subject: Speech Therapy > > > > > > I have been attending speech therapy for 10 sessions now and I do >not > > see any benefits. Has anyone has great results with attending >speech > > therapy? I have been doing all the exercise 3 times a day and my > > voice is slurred and very slow. This started about 6 months ago >for > > me. I had a beautiful voice and the company that I worked for - >used > > my voice on the answering machine. Now when I leave a message on > > someoneâ?Ts machine - I sound drunk.... This can be so >embarrassing > > when you are speaking with people and they do not understand >whatâ?Ts > > wrong. Any advice? God Bless. Sara > > > > > > > > -------------------------------------------------------------------- >---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Sara, My advise is to not overwork your voice muscles. That is when they are at their worse. I tried speech therapy and all it did was tire me out. My neuro told me he thought I was instinctively do what I could to improve my speech. I choose easier words when tired. Try not to speak too loudly and get a really good nights rest. Breathing exercises might help you project your voice without so much strain. But other than that, there isn't much you can do. Thomson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Speech Therapy did no good for me i went to several the nice young girl had never encountered speech problems like mine i could tell .The second time with her i was getting so frustrated i had just been told by Iowa i had 3 yrs. to live .I began to cry in her office .She had no cleanex thats how i knew shed never encountered this . She problably worked more with stroke victims .and not Motor Neuron disease . They dont say i havent encountered this before they just give you the excercises they know so she gave me the important ones to do at home . Speech Therapy > > > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someoneâ?Ts machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand whatâ?Ts > wrong. Any advice? God Bless. Sara > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Really good (and amusing!) advice, Vaughn, especially the leaning up close and whispering. I'm going to try to remember that for when/if I develop speech problems. --Mata > Sara, > > I tried speech therapy four different times. I still talk slow. > > When people don't understand what I said because they weren't listening, I > talk even slower and stick a finger in one ear. It makes them feel stupid. > Then they begin listening. > > The best advice I have is don't let it bother you. When you're doing the > best you can, and they refuse to understand you - just let it go. If it's > really important, write it down - if it's not important, stop talking. I > guarantee, the next time they will listen closer. > > What I think is amusing is the number of people who begin talking louder - > as if you can't talk plain you must be hard of hearing also. I also find > that if you lean toward them and whisper, they pay more attention. > > None of the above may make you more easily understood, but I guarantee some > of them will make talking gibberish much more fun. > > Vaughn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi Donna: I am having the same problem and am thinking maybe I should avoid trying to speak and just drive up to the window with my order on a piece of paper!! Just a thought. Jo. Speech Therapy > > > I have been attending speech therapy for 10 sessions now and I do not > see any benefits. Has anyone has great results with attending speech > therapy? I have been doing all the exercise 3 times a day and my > voice is slurred and very slow. This started about 6 months ago for > me. I had a beautiful voice and the company that I worked for - used > my voice on the answering machine. Now when I leave a message on > someoneâ?Ts machine - I sound drunk.... This can be so embarrassing > when you are speaking with people and they do not understand whatâ?Ts > wrong. Any advice? God Bless. Sara > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Just make sure you use a gun to get their attention... Just a thought ;-) dale Speech Therapy > > > > > > I have been attending speech therapy for 10 sessions now and I do > not > > see any benefits. Has anyone has great results with attending > speech > > therapy? I have been doing all the exercise 3 times a day and my > > voice is slurred and very slow. This started about 6 months ago > for > > me. I had a beautiful voice and the company that I worked for - > used > > my voice on the answering machine. Now when I leave a message on > > someoneâ?Ts machine - I sound drunk.... This can be so > embarrassing > > when you are speaking with people and they do not understand > whatâ?Ts > > wrong. Any advice? God Bless. Sara > > > > > > > > -------------------------------------------------------------------- > ---------- > > Quote Link to comment Share on other sites More sharing options...
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