PLS Coughing/choking/end stage

[Robertjmnyc]

My husband has serious coughing and choking throughout the day and especially at bedtime and during the night. With or without food/liquids. I know sometimes it is the collection of mucus because I can hear it. He almost sounds like he is drowning. Other times it seems dry so I assume it is spasms but I don't know that for sure. I use all the suction machine, cough assist, nebulizers and medications prescribed which sometimes temporarily stops it, and sometimes does nothing. During a serious attack his breathing is affected but usually his breathing is fine during rest. Do the choking, coughing episodes that are very frequent now, an indication that his breathing in general is about to become chronically compromised? Also, he is 79 yrs old, and seems to be more difficult to handle in the evenings and during the night than during the day (physical and emotional issues). Is this usual? In addition we are in year three of all this. The first two years were mainly slow decline in motor functions affecting walking, using arms/hands, and speaking. This year the swallowing/choking/coughing issues became the main issue. He has lost 27 lbs and is 99lbs. Is he in the end stages of this disease? I know I've asked a lot of questions. My first time on this site so I guess I am getting it all out. Thanks.

 

[Robertjmnyc]

My husband has been told he has PLS because he tested negative for ALS. However all his symptoms are textbook ALS and have been progressing now for almost 3 years. He currently has serious coughing and choking throughout the day and especially at bedtime and during the night. With or without food/liquids. I know sometimes it is the collection of mucus because I can hear it. He almost sounds like he is drowning. Other times it seems dry so I assume it is spasms but I don't know that for sure. I use all the suction machine, cough assist, nebulizers and medications prescribed which sometimes temporarily stops it, and sometimes does nothing. During a serious attack his breathing is affected but usually his breathing is fine during rest. Do the choking, coughing episodes that are very frequent now, an indication that his breathing in general is about to become chronically compromised? Also, he is 79 yrs old, and seems to be more difficult to handle in the evenings and during the night than during the day (physical and emotional issues). Is this usual? In addition we are in year three of all this. The first two years were mainly slow decline in motor functions affecting walking, using arms/hands, and speaking. This year the swallowing/choking/coughing issues became the main issue. He has lost 27 lbs and is 99lbs. He doesn't want a feeding tube. Is he in the end stages of this disease? I know I've asked a lot of questions. My first time on this site so I guess I am getting it all out. Thanks.

 

[ShiftKicker]

Mod note: Robert, I've moved your thread and rolled in the post you made in another thread on the forum. I am hoping it will get a bit more traffic tha in the PLS subsection.

Oh my goodness. That sounds very stressful for all involved.

Is your husband under the care of a neurologist? Do you go to an ALS clinic? It sounds like your husband needs to be reassessed, as his symptoms have progressed. Weight loss like that is quite concerning.

More experienced folks will post with excellent advice- you came to the right place.

 

[KimT]

Does he have a feeding tube and what did his last breathing test (pulmonary function test) show?

I hope he is under the care of a neuromuscular specialist?

 

[stevt]

Yep I have P:LS and I feel you......

 

[Robertjmnyc]

Yes he's with an ALS center in NYC. Tri-monthly visits. All the advice they give, I do. Not sure any of it helps much. I feel at this point I just have to see this through to the end and not expect much of a change in his condition. I'd be interested in knowing what the late or end stages are for this disease. I know it can vary by individual. They say malnutrition is not usually the cause of death, but this seems to be what is causing the deterioration, not breathing issues. He doesn't want a feeding tube.

 

[lgelb]

Since he does not want a tube, and is 99 lb, I would say the question is, does he want to go on? If so, you'll find a lot of advice here about blenderizing "real food" for tubes that could be applied to nutrition by mouth, as far as he can go. Smoothies and soup would be staples.

You are right, malnutrition and dehydration are the major limitations on the length of his life if you do not actively intervene at this stage. It is OK not to if he's had enough, but I can't tell from your posts if that is the case.

Best,
Laurie

 

[Robertjmnyc]

Thanks. We've discussed feeding tube many times, as well as with his medical team, and he says no to it. I remind him of what will happen and he says he understands. I'll remind you he is totally paralyzed for the most part, cannot speak, has lost use of bladder muscles and has a catheter, and needs picked up and carried to get from point A to B, and full assistance in every single thing he does i.e. hygiene, toileting, eating, drinking, dressing, etc. etc ,. He's also approaching 80. So he doesn't have much of a life, as he's acknowledged as well. So I doubt a feeding tube is going to make that much difference in the quality and longevity of his life given all this. And going off home hospice care to have surgery at this point is also something he doesn't want to do. Though I still try to feed him and hydrate him with nutritious and weight gaining foods and beverages, it takes a long time to get it all in during a day. it is very painful and uncomfortable to watch this happen to him and not to be able to make it better.