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mel

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Hi. My mom was recently diagnosed with Bulbar palsy. I am wondering if there is any one out there who has suffered with her same symtpoms - which are unusual so accepting this diagnosis as true is difficult. She began with a slight slurring of her speech approx. 14 months ago. She had almost no saliva in her mouth. These symptoms occurred shorlty after she changed her high blood pressure medication. We all thought it was an adverse reaction to the drugs. However, when we took her off the medication, she never improved. Actually, she has gotten worse. Her speech has detriorated and her tongue suffers from atrophy. After taking saligen to get saliva, she now has too much saliva and is drooling excessively. She is afraid to go on the "patch" to control it because she fears that she will lose all her saliva again as she had experienced during the beginning stages of her illness. Does any one have any suggestions or a similar experience? Is it normal to start out with a dry mouth and no saliva and then get too much later on? ALso, when she first tries to talk in the morning, her speech is almost impossible to understand for the first minute or so. After she talks for a bit, her speech improves dramatically and it flows quite well. Is this normal? We are all so desperately trying to find an outreach group for my mom. She needs to talk with others who are going through the same thing.
Thank you.
 
Hi Mel;

Excessive saliva is part of the disease for many people with ALS. Mine is partially controlled with a drug called "desipramine" an anti-depressant which reduces saliva as a side effect.
As undignified as it may seem, I control my excessive saliva by sticking a folded hanky in my mouth which absorbs the saliva.
It sounds to me like you two need a referral to the nearest clinic that deals with ALS.

Bert
 
RE: SALIVA

Dea Bert:

Thank you for your reply. Did you also have speech problems along with your excessive saliva? I think we are going to go with the patch. The saliva is so bad that we thought we would take the chance.

What type of ALS are you suffering from? It seems it hits in all shapes and forms.
mel
 
Hi Mel:
My wife also suffered from saliva control when she had ALS and used antidepressants to control it. She also used a motion sickness patch that include scopalomine called transderm. It is an over the counter patch that lasts for about 3 days and is available at our local pharmacy. Good luck!
 
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