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bkbailey

New member
Joined
Jun 30, 2010
Messages
3
Reason
CALS
Diagnosis
11/2005
Country
US
State
WI
City
Woodruff
My husband has ALS and was diagnosed 11/05, so we are so much more fortunate than many others. His progression has been slow, however his speech has deteriorated to be point where he can hardly be understood and he uses a mobility scooter to get around. The reason I am writing is to ask for advice. My husband gets so upset and angry with me when I don't understand what he is trying to say. I can only imagine how challenging, frustrating, frightening etc etc this disease is. Of course, like many caregivers, I do just about everything for him and this really hurts. I love him totally. I guess I live with this disease every day just like he does. Does anyone have any encouraging words I can use with him or maybe I am just looking for somewhere to vent. Anyway thanks!
 
Welcome to the forum! Here's my words of advice and encouragement: time to get a speech device and you don't need to spend a fortune to have a voice again. I have two devices that I use every day that each cost me less than $500.

My wife gets really mad at me when I even try to talk. It is pointless for me to try because I cannot make any language sounds and all I succeed in doing is stressing everyone out but 50+ years of talking is a hard habit to break. I just need to find some flesh coloured duct tape for my mouth!
 
Hi and welcome, I also have bulbar onset. My voice is totally gone. I have had four speaking devices. My very favorite is the new apple iPad.... Fast easy, light weight, everything I could ever want all in one device...hope you ck it out before you decide...Linda
 
Welcome to the forum. Here is a link to what Barry and I use to combat the frustration of speech.

TextToSpeech
 
Thank you so much for your quick responses! I will look into speech devices. Why didn't I think of that?! My fear was that my husband would become isolated from his friends and family because of his speech. Other than the speech thing he is in good spirits. I think that is a very large part of the battle. I generally tease him and don't give him any slack - which he thrives on, except for this major issue. Speech device hunt will begin tomorrow.
 
If you have a laptop computer there is a free program called Etriloquist that can be downloaded at Etriloquist.com and other than maybe a better speaker and a better voice that can be purchased you are all set. Etriloquist will work on a desktop computer too but it's not very portable. Nobody needs to be isolated these days, Good luck!
 
Thanks again everyone. Great info I will be checking out asap.

PS - My son also lives in Canada. Saskatoon.
 
I forgot to mention something very important...along with the iPad I bought proloquo2go...hope you find the one just right for your husband..lots of good devices out there. Linda
 
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