Speech went first, although swallowing has been an issue as well. My husband could not voice bank (he tried) just months after he was diagnosed, as his speech had already deteriorated too much for the software to work. Most people cannot understand my husband now and he has aspiration/swallow problems. Kind of a simultaneous thing with speech and swallowing, but speech has really been a big problem for him.
What goes first Speech or Eating
- Thread starter GlenBrittle
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I have been reading these posts with interest. My dad has just started , in the past three days, experiencing brief times when he cannot speak, he just can't get the words out, they last from between 5 and 20 minutes , but his speech comes back , so far. Swallowing seems to be okay at this point. We are waiting on results of a carotid ultrasound that was done today
Susan
Dad diagnosed 02/09
Susan
Dad diagnosed 02/09
GlenBrittle
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I find that after I yawn , my jaw muscles stay stiff and I cant talk for a couple of minutes.
I yawn a lot.
I can speak best in the morning when I am well rested.
Are we having fun yet ?
Glen
I yawn a lot.
I can speak best in the morning when I am well rested.
Are we having fun yet ?
Glen
thelma313
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My dad has some pretty gigantic yawns.... some real doozies. Glen, I hate to hear that you have progressed even a bit, and I so hope with all my heart that you hit a major plateau starting today!
Hugs,
Rosella
Hugs,
Rosella
handinhand
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ok Glen, you keep your spirits up ? You always make me laugh. I look for your threads... What is going on with you these days. What do you feel is progressing? I know that I have been on a roll lately. Almost no talking. Very limited on what i can eat. Just the soft stuff and smoothies,lots of soup.... My hands look like they are 100 years old. What has been bothering me most is that when I raise my arms up to brush my hair,make my bed, anything they feel so heavy. i have been getting soooooooooooo tired. I am trying real hard to stay possitive but it is hard. I hope I stay just like I am today for a long while.... Another thing is that my chin quivers..lol funny,kinda? Oh how I wish this would all go away. I wake up every morning and for just a moment I forget what is going on with my body. Then it'starts all over again with a new day with als... sending big hugs your way.. Linda..
GlenBrittle
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Hey Rosella,
Does Angelo shake when he yawns? When I have one of those "real doozies" , I shake like crazy. I have to stop everything at that time. Even driving the PWC has to stop, or I could run into things . and be charged for driving under the influence of vibrations/twitches
Hey Linda,
We need to always find a way to cheer yourself up. "WooHoo , I get to be a smartass for another day" Look for a positive thought every day. Its ok to use the same thought over and over. Make someone laugh today. SMILE, someone will think you are up to something.
Have a great day everyone. Reading this is great, as you are still here.
Glen
thelma313
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Yes Glen, Angelo does indeed shake when he yawns. Plus he is wearing his bipap 24/7 now so sometimes the doozies cause the mask to make a fart sound which of course still makes him laugh. Angelo will always find fart jokes funny, no matter what shape he is in. 
GlenBrittle
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Yes Glen, Angelo does indeed shake when he yawns. Plus he is wearing his bipap 24/7 now so sometimes the doozies cause the mask to make a fart sound which of course still makes him laugh. Angelo will always find fart jokes funny, no matter what shape he is in.
I dont know why , but farts are funny.
Even Budwieser thinks they are funny.
Rocket Sled
Katie C
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First thing that made me think Glen had something wrong was a constant clearing of his throat.. then his voice started becoming hoarse. I would say eating is somewhat harder than speech (which is slow, slurred and very low volume) but really, the losses have been pretty concurrent. First extremity we noticed was a slight weakening of his left hand. Now neither arm raises above shoulder level, and we're starting to see weaking in his legs.
paleshia
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yep linda, happens to me me too...if i open my mouth just so...sometimes chewing gum...i am limb onset though.... hope this stuff slows down too....for me, for you, for glen, and the rest of us pals oo
Tiziana
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For me it started with the slurred speach, that was in Jan 09. By March it was accompanied by difficulty in swallowing, especially with liquids. The end of summer it both had gotten considerably worse . Around Christmas I could barely project my voice and eating has become a nuisance. I try and eat softer foods, but I am starving all the time!
I find it very hard to talk right now, and I'm tired of repeating myself to others. I heard about the Ipod, would love to get one,,going to look into it for sure. I also have thought about the Haitiians and how they're suffering, I had no problems donating $200.
We have to remember that there is always something far worse out there, when we feel down. My spirits are up, I love the Lord,,I just have so much to say!
God bless all of us
. Around Christmas I could barely project my voice and eating has become a nuisance. I try and eat softer foods, but I am starving all the time!I find it very hard to talk right now, and I'm tired of repeating myself to others. I heard about the Ipod, would love to get one,,going to look into it for sure. I also have thought about the Haitiians and how they're suffering, I had no problems donating $200.
We have to remember that there is always something far worse out there, when we feel down. My spirits are up, I love the Lord,,I just have so much to say!
God bless all of us
BarryG
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Hi Tiziana, you got me worried when you said that you were hungry all the time. That is NOT good, the best thing that you can do with this disease is to not lose weight, which you will if you are going hungry. I know that the only reason I am still here is because of my PEG tube, there is no way that I would have been able to keep going without it.
As far as talking goes, you have to have a voice! I love my $180 8gb IPod Touch and the $180 Proloquo2Go speaking app. I also use a netbook and speaking software that cost me about $450. Not cheap but if you can still type then it is way cheaper than the Dynovox stuff (how can they really charge $5000+ for a PDA, speaker and some software when my IPod does the same thing in a smaller package for under $400?).
You have to eat and you have to talk!
As far as talking goes, you have to have a voice! I love my $180 8gb IPod Touch and the $180 Proloquo2Go speaking app. I also use a netbook and speaking software that cost me about $450. Not cheap but if you can still type then it is way cheaper than the Dynovox stuff (how can they really charge $5000+ for a PDA, speaker and some software when my IPod does the same thing in a smaller package for under $400?).
You have to eat and you have to talk!
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