Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Another question i meant to ask is for people that cant talk and have a hard time using their hands how do you/they communicate? Right now my mom can make noises and me and my sister came up with " look at me for yes " " look away for no " because thats almost the only thing she has complete control over. Are there any devices that make this type of thing eaiser? At the emergency room one time the nurse asked if we had a board of some sort with the alphabet on it. I think it is to be held infront of the person and she can look at the letter to spell out things, but i dont know how well that will work. Anyone know anything about this type of thing? Thanks again, > Hello, > > My name is . My mom has PLS. She started having symptoms in > late 2000 and has progressed to where she cant walk, talk, or use > either of her legs and her right arm. Her left arm she can barely > raise to give us acknowledgement, on a good day. > > I just joined and wanted to introduce myself. My mom is currently in > the hospital because of a bed sore that got so bad she has to have > surgery on it. > > Her pain specialist says she is a good candidate for the baclofen > pump but her insurance wont cover it. They covered the test but they > wont cover the perm one for some reason. I'm still working on finding > out why. A lawyer suggested that maybe it was rejected strictly on > price ($15k+) and didnt reasearch weather or not they should cover > it. > > She doesnt qualify for medical/medicare because my dad makes $60k+ a > year because he works 7 days a week and we live in souther california > where it is really expensive and if he didnt work the overtime we > wouldnt be able to afford to live out here. He has a really good job > at Solar Turbines. > > Does anyone know if there is a way around the fact that he makes so > much money but she has the need for medical and possibly to get a > monthly disability check would help out tremdeously. > > Has anyone heard of the Neuromove ( www . neuromove . com )? If so, > does it help at all? > > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi , What a wonderful son you are to be so supportive, and helpful in searching out assistance for your mom. I am sorry that she has PLS, and has progressed so much. I'm glad you found us though, and there's lots of good people here who will be very helpful to your family. Hugs to all of you, Laurel Hello everyone... Hello, My name is . My mom has PLS. She started having symptoms in late 2000 and has progressed to where she cant walk, talk, or use either of her legs and her right arm. Her left arm she can barely raise to give us acknowledgement, on a good day. I just joined and wanted to introduce myself. My mom is currently in the hospital because of a bed sore that got so bad she has to have surgery on it. Her pain specialist says she is a good candidate for the baclofen pump but her insurance wont cover it. They covered the test but they wont cover the perm one for some reason. I'm still working on finding out why. A lawyer suggested that maybe it was rejected strictly on price ($15k+) and didnt reasearch weather or not they should cover it. She doesnt qualify for medical/medicare because my dad makes $60k+ a year because he works 7 days a week and we live in souther california where it is really expensive and if he didnt work the overtime we wouldnt be able to afford to live out here. He has a really good job at Solar Turbines. Does anyone know if there is a way around the fact that he makes so much money but she has the need for medical and possibly to get a monthly disability check would help out tremdeously. Has anyone heard of the Neuromove ( www . neuromove . com )? If so, does it help at all? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Hi THOMAS My hubby Dorian has pls ands cannot talk very well ,its hard to understand him. We have been going to speech tharapy,and they gave him a board with the alpha bet, if he is trying to tell me something and i cant understand him , he points to the letters and i am able to spell out what he is trying to say. At the bottom of the board is yes and no that he can point to .We have found this board to be a great way to converse and it has taken a lot of frustration we were both going though.They also had a board that had picture on it with phrases written below them as a example .... i would like a drink and there was a picture of a glass of water .I hope you may find this system usefull we sure have ,our regards to your mother and Dorian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 In a message dated 6/14/2004 12:20:24 AM Eastern Daylight Time, PLS-FRIENDS writes: > Another question i meant to ask is for people that cant talk and have > a hard time using their hands how do you/they communicate? > Hello , I am sorry to hear your mother has PLS but glad you found this group. Lots of great people who understand what you all are going through. We have several links regarding communication devices at our Foundation's Recommended Links webpage: http://sp-foundation.org/forum-links.htm#Communication. We also have posted a few message from PLS Friends on this topic at our Foundation's Patient Forum Articles webpage: http://sp-foundation.org/articles-speechtips-print.htm Best of luck, Kathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Since I have ALS, I read that board as well as this one and I'm learning about all kinds of assistive devices that I don't see mentioned here. One of them is a Lightwriter that actually talks for you. It's not your voice, of course, but it does the job. There are other softward programs also that you can use with a laptop. I suggest that all PLSers read living-with-als (it's also on Yahoo). You'll learn a lot. Edith > Hi THOMAS > My hubby Dorian has pls ands cannot talk very well ,its hard to understand > him. We have been going to speech tharapy,and they gave him a board with the > alpha bet, if he is trying to tell me something and i cant understand him , > he points to the letters and i am able to spell out what he is trying to > say. At the bottom of the board is yes and no that he can point to .We have > found this board to be a great way to converse and it has taken a lot of > frustration we were both going though.They also had a board that had picture > on it with phrases written below them as a example .... i would like a drink > and there was a picture of a glass of water .I hope you may find this system > usefull we sure have ,our regards to your mother > and Dorian > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 HI EVERYONE WE ARE IN THE PROCESS OF GETTING A TALKER FOR DON. YOU CAN EITHER TYPE IT IN OR PUT A LITTLE REFLECTOR ON HIS GLASSES OR FOREHEAD AND TYPE WITH IT. WE ARE HAVING HIS ATTACHED TO A JOY STICK FOR NOW. HE IS STILL ABLE TO USE HIS HANDS ENOUGH FOR THAT. WE ARE GOING THROUGH THE SPEECH DEPT. AT OUR LOCAL HOSPITAL. HIS IS ON ORDER BUT I'M NOT SURE MEDICARE HAS APPROVED IT YET. IF THEY WON'T I GUESS MEDICAID WILL. HE IS EXCITED ABOUT GETTING IT. HE HAS ALWAYS BEEN A MAN OF FEW WORDS BUT BOY WHEN HE TALKS HE WANTS TO BE HEARD. HE HAS BEEN SO GOOD ABOUT HIS LOSSES EXCEPT THIS ONE. HE DOESN'T HEAR THE PROBLEM WITH HIS SPEECH AND THINKS WE ARE NOT LISTENING. I HAVE THOUGHT ABOUT TAPING HIS VOICE BUT DECIDED IT WOULD HURT HIS DIGNITY. I'LL JUST GRIN AND BEAR IT AND HANG ON TIGHTER TO MY ROPE. LOVE TO ALL BONNIE Re: Hello everyone... > Since I have ALS, I read that board as well as this one and I'm > learning about all kinds of assistive devices that I don't see > mentioned here. One of them is a Lightwriter that actually talks for > you. It's not your voice, of course, but it does the job. There are > other softward programs also that you can use with a laptop. > > I suggest that all PLSers read living-with-als (it's also on Yahoo). > You'll learn a lot. > Edith > > > > > > Hi THOMAS > > My hubby Dorian has pls ands cannot talk very well ,its hard to > understand > > him. We have been going to speech tharapy,and they gave him a > board with the > > alpha bet, if he is trying to tell me something and i cant > understand him , > > he points to the letters and i am able to spell out what he is > trying to > > say. At the bottom of the board is yes and no that he can > point to .We have > > found this board to be a great way to converse and it has taken > a lot of > > frustration we were both going though.They also had a board that > had picture > > on it with phrases written below them as a example .... i would > like a drink > > and there was a picture of a glass of water .I hope you may find > this system > > usefull we sure have ,our regards to your mother > > and Dorian > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 HI EVERYONE WE ARE IN THE PROCESS OF GETTING A TALKER FOR DON. YOU CAN EITHER TYPE IT IN OR PUT A LITTLE REFLECTOR ON HIS GLASSES OR FOREHEAD AND TYPE WITH IT. WE ARE HAVING HIS ATTACHED TO A JOY STICK FOR NOW. HE IS STILL ABLE TO USE HIS HANDS ENOUGH FOR THAT. WE ARE GOING THROUGH THE SPEECH DEPT. AT OUR LOCAL HOSPITAL. HIS IS ON ORDER BUT I'M NOT SURE MEDICARE HAS APPROVED IT YET. IF THEY WON'T I GUESS MEDICAID WILL. HE IS EXCITED ABOUT GETTING IT. HE HAS ALWAYS BEEN A MAN OF FEW WORDS BUT BOY WHEN HE TALKS HE WANTS TO BE HEARD. HE HAS BEEN SO GOOD ABOUT HIS LOSSES EXCEPT THIS ONE. HE DOESN'T HEAR THE PROBLEM WITH HIS SPEECH AND THINKS WE ARE NOT LISTENING. I HAVE THOUGHT ABOUT TAPING HIS VOICE BUT DECIDED IT WOULD HURT HIS DIGNITY. I'LL JUST GRIN AND BEAR IT AND HANG ON TIGHTER TO MY ROPE. LOVE TO ALL BONNIE Re: Hello everyone... > Since I have ALS, I read that board as well as this one and I'm > learning about all kinds of assistive devices that I don't see > mentioned here. One of them is a Lightwriter that actually talks for > you. It's not your voice, of course, but it does the job. There are > other softward programs also that you can use with a laptop. > > I suggest that all PLSers read living-with-als (it's also on Yahoo). > You'll learn a lot. > Edith > > > > > > Hi THOMAS > > My hubby Dorian has pls ands cannot talk very well ,its hard to > understand > > him. We have been going to speech tharapy,and they gave him a > board with the > > alpha bet, if he is trying to tell me something and i cant > understand him , > > he points to the letters and i am able to spell out what he is > trying to > > say. At the bottom of the board is yes and no that he can > point to .We have > > found this board to be a great way to converse and it has taken > a lot of > > frustration we were both going though.They also had a board that > had picture > > on it with phrases written below them as a example .... i would > like a drink > > and there was a picture of a glass of water .I hope you may find > this system > > usefull we sure have ,our regards to your mother > > and Dorian > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 HI BONNIE, DON WILL ENJOY IT!! I HAVE A LIGHTWRITER ON LOAN AND IT IS VERY HELPFUL. MY SPEECH GETS WEAKER AS I GET MORE FATIGUED. THE ONLY PROBLEM FOR ME IS WHEN I PULL IT OUT MY KIDS WANT TO PLAY WITH IT. WE ALSO HAVE A VOICE AMPLIFIER ON LOAN TOO. IT IS VERY SIMPLE AND INEXPENSIVE. IT IS FROM RADIO SHACK. BONNIE-HOW ARE YOU DOING? I HOPE BETTER!!!! TAKE CARE. LOVE LISA NICHOLS Re: Hello everyone... > > > > Since I have ALS, I read that board as well as this one and I'm > > learning about all kinds of assistive devices that I don't see > > mentioned here. One of them is a Lightwriter that actually talks for > > you. It's not your voice, of course, but it does the job. There are > > other softward programs also that you can use with a laptop. > > > > I suggest that all PLSers read living-with-als (it's also on Yahoo). > > You'll learn a lot. > > Edith > > > > > > > > > > > Hi THOMAS > > > My hubby Dorian has pls ands cannot talk very well ,its hard to > > understand > > > him. We have been going to speech tharapy,and they gave him a > > board with the > > > alpha bet, if he is trying to tell me something and i cant > > understand him , > > > he points to the letters and i am able to spell out what he is > > trying to > > > say. At the bottom of the board is yes and no that he can > > point to .We have > > > found this board to be a great way to converse and it has taken > > a lot of > > > frustration we were both going though.They also had a board that > > had picture > > > on it with phrases written below them as a example .... i would > > like a drink > > > and there was a picture of a glass of water .I hope you may find > > this system > > > usefull we sure have ,our regards to your mother > > > and Dorian > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 I hope everything works out for you and Don. Of all the things about this disease that I am scared about is looseing my ability to talk. That is one thing my hubby and I love to do with each other. Have a wonderful day. Sandy Re: Hello everyone... > Since I have ALS, I read that board as well as this one and I'm > learning about all kinds of assistive devices that I don't see > mentioned here. One of them is a Lightwriter that actually talks for > you. It's not your voice, of course, but it does the job. There are > other softward programs also that you can use with a laptop. > > I suggest that all PLSers read living-with-als (it's also on Yahoo). > You'll learn a lot. > Edith > > > > > > Hi THOMAS > > My hubby Dorian has pls ands cannot talk very well ,its hard to > understand > > him. We have been going to speech tharapy,and they gave him a > board with the > > alpha bet, if he is trying to tell me something and i cant > understand him , > > he points to the letters and i am able to spell out what he is > trying to > > say. At the bottom of the board is yes and no that he can > point to .We have > > found this board to be a great way to converse and it has taken > a lot of > > frustration we were both going though.They also had a board that > had picture > > on it with phrases written below them as a example .... i would > like a drink > > and there was a picture of a glass of water .I hope you may find > this system > > usefull we sure have ,our regards to your mother > > and Dorian > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.