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terri

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Hi Everyone.

I have learned so much from everyone sharing. I don't seem to have many answers to share much and it seems all I do is ask questions. I hope you don't get too tired of me, I have a lot of questions! Recently, I have noticed LB smacks his lips alot. It's not only when he eats. I ask him if it was extra spit that made him do that and he replied he didn't think so. He thinks maybe it's his tongue . I have not noticed any major swallowing problems. I have noticed that he cuts his food smaller than before als and I have noticed that his voice is softer. Does anyone else notice this smacking and if so do you think it is the beginning of a new problem? Thanks for any thoughts.

Terri
 

Al

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Sorry Terri . I can't remember if LB has Bulbar or limb onset. It could be from either because of excess saliva in both types but from what I understand it is usually more pronounced in people with bulbar onset.
 

terri

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LB has limb onset. It started in his right foot and spread through out the right leg pretty fast. Now, it has calmed down some but is evident in his left leg and left hand. His back is pretty weak also. His softer voice started about a month or two ago. LB breathes through his mouth a lot and the smacking seems (to me) to happen when he puts his lips together and swallows. LB always just says he's fine and doesn't offer explantions.
 

hope

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Hello Terri,

You say LB breathes alot through his mouth, maybe by doing this it causes his mouth to dry out which might be making his lips smack due to the dry mouth. I don`t know just a thought.

Take care,
Hope.
 

alliebt

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Jan 18, 2006
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Hi:

My fiance's mom had limb onset ALS and she found that her medications especially caused her to have dry mouth. She was forever asking for sips of water to help ease the dry mouth feeling. As the disease progressed, she would breathe through her mouth more and more, which only heightened the feeling of dry mouth. It wasn't until she went to the hospital a few days before she passed away that we discovered a tool that would have helped out a lot.

The hospital gave her little devices that looked like a lollipop, a plastic stick with a sponge on the end of it. The sponge could be dipped in water and then she could get the water out of the sponge just by closing her mouth and pressing her tongue on it, much easier that sipping through a straw. The sponge could hold a lot of water and didn't drip either.

That's all for now...

Allie
 

terri

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Thanks everyone for the thoughts. I hope it is just dry mouth.

Terri
 

TBear

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Terri:
Dry mouth can be a side effect of some medications. Amitryptelene is an anti depressant that has been used to control saliva production. If he's taking it , it might be the cause.

CHeers
T.
 
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