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pldo

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Can anyone go furhter into what happens if you have bulbar onset ALS? I have trouble swallowing all day except when eating or drinking. Sometimes it feels like I cant swallow and talk at the same time.
 

anne

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My mom had bulbar...She started off with having hoarseness in her voice. The pitch of her voice changed, she developed a slight drool. She started to have difficulty swallowing. At first she would say that the food would get stuck and she really had to swallow hard to get it down. She then started to slurr her words, the drooling got worse and then she began to have difficulty swallowing liquids. She coughed and choked frequently. She was unable to move her tongue, pucker her lips, kiss or blow into a balloon. She was then unable to verbally communicate. She required a feeding tube because swallowing became impossible. Her mobility and fine motor skills remained excellent. However, she did develop weakness in her neck where her neck would droop forward. She also developed respiratory problems. Unfortunately my mom did pass away 15 months after being diagnosed

This disease remains a mystery. Not everyone progresses the same. I suggest you deal with the situation as they occur. Do not look too far into what will happen next.

God Bless.
 

Amanda529

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Anne is right. All the symptoms her mom had my dad had. His first sign was the slurring of words, trouble swallowing, drooling, and then we started to see the muscles twitching. He started showing symptoms the end of 2006 and was diagnosed on 8/1/07. I would suggest going to a doctor and tell them what is going on with your body.
 

juliesmile

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30 year choking problem

My husband has some troubling symptoms of possible MND, lfoot drop, muscle atrophy, twitching, weakness etc. no diagnosed yet, but on this bulbar issue i was wondering if anyone can relate to this scenario. My husband had his first choking experience about 30 years ago. He doesn't literally choke, he just can't get food to go down, he can still breathe, he just can't swallow what is in his throat. So over the course of our marriage (25 years )I have watched his diet change drastically. He basically just eats, cream soups, tofu, eggs, white bread (can't handle wheat bread) nuts, cheeses things like that. As long as he eats like this he can manage not to choke. No drooling, kisses fine all that other stuff isn't a problem. Do you think this is a latent MND issue?
 

Al

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I know a guy with a similar problem and he has to go get his esophagas stretched about every 6 to 9 months. Haven't a clue what it's called though.
AL.
 

CindyM

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A couple of people in my family have that. Plus the proceedue, I am told, is painless.
 

hearts_and_thoughts

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I am sorry about the diagnosis. My brother has bulbar onset ALS. I
I'm glad you are here....this forum is the best one I've EVER been on for ANYTHING! The people here are phenomenal and they are all angels. I thank God for them all.

Please if you have any questions, at all, don't hesitate to ask.

Saying a prayer for you and yours....
Mary Jo
 

Rachel

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I would echo what Anne has said. My mum had Bulbar Palsy and first said that her tongue felt too big in her mouth. Then she started slurring her words, sounding like a deaf person. From memory, swallowing became a problem after her speech was affected and she would choke easily if she didn't concentrate when eating or drinking. She would have trouble with drooling & laughing would make her throat muscles go into spasm which was very scary to witness.

Her neck muscles became very weak & she had to wear a collar & was finally diagnosed in Jan 2007 after having the symptoms for, we think, 2 years.

Sadly she passed away in November.

As Amanda has said, go to your doctor. It could be a number of things but the earlier you get some professional advice, the better.

Take care

Rachel
 
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