my Pals is battling with sialorrhea

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Cony

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After tracheostomy was performed on January 2020 my husband suffered collateral damage. What we were told to be something simple and fast became a nightmare. By that I mean that his bulbar muscles deteriorated.

Before he underwent the operation he never choked, drank coffee and liquefied food perfectly. He could hold his head up and move it and did not have saliva problems. After surgery the story changed. First he acquired pneumonia while in the hospital, that prolonged his stay. I remember while in the hospital he told me something was wrong with his saliva. He felt he was over secreting it and it felt heavy. By the time he got out he was weak, he couldn't hold his head upright and his problems of excessive saliva continued. I thought it was because of all the antibiotics treatments he had received and with time he would recover his strength, but to date he can't hold up his head and the hyper salivation problem persists adding that he can no longer drink anything because some of it goes down his trachea not to his stomach.

I have spent time searching for answers. Before Covid I took him to a specialist and he said he had glottis insufficiency.

Questioning if the tracheostomy procedure was done wrong, did all the antibiotics damage his nerves and accelerated ALS, or what happened. His hyper-salivation is a real problem it causes a lot of secretions that he expels thru his cannula. Covid has kept us from going to see other specialists. His quality of life has been compromised. For now I am researching and looking for solutions to stop his excessive salivation. I am trying to avoid anticholinergic drugs because of side effects,

I would appreciate remedies or therapies you have tried with success.
thank you
 
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affected

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Sadly any surgery or trauma can hasten progression and all the things you describe are the kind of bulbar issues PALS have. Now I can't say what happened from here. I would strongly suspect however that the pneumonia really affected his progression - PALS usually find a pneumonia takes a lot out of them. Once something is lost with ALS it is never regained I'm afraid.

He was already having bulbar issues though if he was taking in liquefied food?

I'm so sorry - the trach only gives breathing support, it doesn't prevent progression.
 

PALSdottir

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Let me send pictures of answers to that from the book I'm reading, "Navigating Life with Amyotrophic Lateral Sclerosis" by Dr. Bromberg under the topic, "How Can I manage My Saliva?"
 

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