Voice 90% Gone

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Beach Bum

Distinguished member
Joined
Oct 5, 2010
Messages
142
Diagnosis
08/2010
Country
US
State
SC
City
Conway
Good morning friends,
Another beautiful day here in SC.Having spent 40 years in sales,with my voice gone I could not give an apple away today.I know there are help,tech tools out there,which ones are the best,any ideas?
 
Ken, I'm sorry your voice is so shot. I wanted to suggest you state here how your hands are doing--it may make a difference in those suggestions for replacing your voice... it's good to know what there is to work with, if you know what I mean.
Hugs,
Ann
 
Ken,
So sorry your voice is gone=( Mine also is gone! Nothing you can do about it other than alternate forms of communication. My question for you is how is your swallowing?
I have the follow communication devices
Dynavox with phone it to make phone calls
Lightwriter- most people do not understand it as it talks to fast.
IPOD with perquo2go nice for shopping and outings if it has a good speaker
My daily use is dry erase board
 
My hands are great and strong,I get around very well,Swallow can be an issue,I do go out to eat and eat well,every now and then if I dont pay attention or get distracted,I can start choking while eating.On Dec 7th I will be at Duke Univ again,they want to show me all the devices and if I like something they will let me take it home and play with it.Of course this forum will be my first choice,my friends here are Pros!
Hugs Ken
 
As someone who's voice is 99.99% gone, I'll just say 'What Joel said" and that I also use an iPod with Proloquo2go with the speaker that Joel has on his website. I just velcroed the speaker to the back of the iPod for more volume.
 
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Any suggestions on how one who has lost the use of his hands and who's voice is very soft can communicate? Is there a speaker or microphone gagdet that could be tried?
 
Devices seem a little different over here. My pals speech has been completely gone for almost a year. Sound possible but no articulation at all. She used a lightwriter but never really bonded with it. She still uses it a little but has moved on to a say it sam made by possum. It is a combination of keyboard with predictive text and pictures you can self program & personalise with your own phrases. It has a touch screen so needs less effort than a lightwriter. We are just at stage of needing to find a way of using it without hands. I have been told it works with a scanner switch device that can be used with whatever part of the body that can move. Don't know how easy it is but it is possible. Will know soon enough what the experience is like! I've seen dynavox mentioned on the forum. don't think it's so available here but maybe it could work for you hezc? Good luck beachbum trying out the devices. Hope you find one that suits you well.
 
My hands are great and strong,I get around very well,Swallow can be an issue,I do go out to eat and eat well,every now and then if I dont pay attention or get distracted,I can start choking while eating.On Dec 7th I will be at Duke Univ again,they want to show me all the devices and if I like something they will let me take it home and play with it.Of course this forum will be my first choice,my friends here are Pros!
Hugs Ken

beachbum,
I am a bulbarian. At the time I was able to get my SGD, my limbs were working fine. I had decided, since I was ambulatory I would focus on something light weight. I knew if it was on the heavy side, I would not want to drag it around when I was out and about. I felt I would end up resorting back to my dry erase board.

Before I got my SGD, I used a 8x11 dry erase board and the dry erase markers. My husband dressed the board up with a shoulder strap and also a place where I could hold my marker. If you look real close, I am wearing it in my photo.

When I started doing my homework to see what was out there, I went online and found many companies that offer the devices. I studied the ones that I thought would work for me until I had it narrowed down to 2 companies. When my Medicare kicked in, I was ready to see a (SLP) speech language pathologist.

I chose a Word Plus product called Say-it-Sam Communicator Version 2. It is an HP iPAC. It weighs 14oz. It does the same functions as the larger laptops, but on a smaller scale. It is not adaptable to the eyegaze accessory, should you need that in the future. My rep told me I could trade it in for another kind, if I could not use it any longer.

Have you applied for Social Security Disability? Once approved they automatically offer PALS Medicare. I had to wait 2 years for Medicare because my Dx was PLS. Medicare paid 80% of my SGD and my Supplemental Ins. picked up the remaining 20%.

Happy hunting,
Judy
 
Hi HezC. A friend (since gone) had a headset mic and small amp on his chair to amplify his voice. Not surre if he got it from ALS Society or OT from the ALS clinic.

AL.
 
Hey gang Ken is my brother and I really appreicate you all giving him suggestions from your own expereinces. Ken is not kidding , his upper body strength is gerat right now...........but his voice is more of an issue since my first visit to him last August....I will be in MB on 5 Dec for about 8 days. he and I will go to Duke together..............thanks for the support from all of you God bless to all
 
Thanks Al. Dad's voice is completely gone now. He is still breathing on his own and eating very well, but no voice. He also has no mobility though we are thankful he can use his ereader. Someone mentioned that you can get a device that allows you to communicate by blinking...this is what I am looking into now.
 
HezC,

WordsPlus and Dynavox are two major companies that have speech generating devices [SGD] plus the eyegaze accessory. They cost quite a bit. If your dad is on Medicare, they will pay [did pay in 2008] 80% and his supplemental insurance should pay the remaining 20%. His primary doctor will need to refer him to a speech pathologist to request a SGD.

joelc might know of some equipment that you can get without involving his insurance. You can send a visitor message to joelc.

Judith
 
Post #5 above.
 
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