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btreglown

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Hello, I joined this forum about a month ago when my grandmother (who is 75 years old) was diagnosed with ALS. We went to Emory in Atlanta to the ALS Clinic about a month ago to get a second opionion. She has bulbar syptoms. She has massive amounts of salava that run out of her mouth (she has a pill to dry this up but she says it makes her mouth to dry), we can no longer understand her hardly, she gets choked when she eats, and the worse part is that she also has pluminary fibrosis in her lungs. So, she got the PEG tub right after our visit to Emory because the suggested it before her breathing got to bad. Her breathing tests register at 40%. We visited the ALS Clinic yesterday (back to Emory on Clinic day to meet all the theropists and doctors). Dr. Glass suggested that she made a decission about a ventilator and that she stops eating with her mouth all together. Well, she got choked last night and we had to call 911 because we could not get her to breath. Finally my mom did the hymnic and she started breathing. My questions, does anyone have a ventilator and how does it work? How can we convince her to stop eating? How does one deal with the salava that runs out of your mouth? If one is choking and has a PEG tube, is it safe to do the hymnic? Does anyone have the cough assist? How do they think it is useful? Sorry for all the qustions as they have started to pile up.

Beth
 

CindyM

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HI beth. So sorry your family is going through all this! I bet your parents and grandmother are proud of you for being so involved and so caring.

We have a few folks on vents and with peg tubes so I expect you will be getting lots of advice soon. Keep the questions coming- the moer you learn the bettter you will be able to help your family. Also, the search feature on this site provides a wealth of information. Good luck and keep us informed on how it is going. Cindy
 

Icanmanz

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Hi Beth, so sorry for your grandma, hope she is doing better (how can you say this about Pals)? Getting to the saliva issue part, has your grandma's doc brought up the idea of the suction machine? My son was given the use of the suction machine when he started having issues with drooling, and such, and it worked wonderfully. Thought I'd let you know, and God bless you all. Hugs to grandma!

Irma
 

quadbliss

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Hi Beth,

A ventilator is a machine that breathes for you by pushing air into your lungs, then letting it out. It is usually connected to your body through a surgically created hole in your throat called a tracheotomy. They then insert a tube that makes a 90 degree turn and goes a couple of inches down toward your lungs. The ventilator is attached to the outside end of the tube. Without something to stop it, the air would take the path of least resistance and go up the trachea and out the nose and mouth instead of into the lungs. To address this issue, there is a balloon around the tube in the throat that when inflated, seals off the trachea. In your grandmother's case, the vent would help his breathe, and the balloon would prevent her from inhaling (aspirating) saliva. Some ALS patients choose to accept this to extend their lives. Others feel their quality of life would be too low and decide against it.

A cough-assist machine blows air into your lungs, then sucks it out. It is very effective at removing thick secretions, and uses a face mask to interface with your body. This device works very well and is definitely worth having around.

It sounds like it is definitely time for your grandmother to stop eating by mouth.

Mike
 

btreglown

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Thanks Mike-
Do you have a ventilator? If so, what was your breathing number when you received it? How do you know when you need one? Also, does someone have to be with you 24 hours a day?
 

cheryilyn

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she will not stop eating until she decides to. i know this because i have been most stubborn in this area. make sure her food is pureed and that someone is with her.
 

Icanmanz

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kudos to you cherylynn! May God bless you!

Irma
 

quadbliss

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Hi Beth,

I have been on a vent for 3 years. When I was first trached, I had been on Bi-Pap 24/7 for 2 full years, so my FVC was 0 percent. I had to be trached because my swallowing muscles had finally deteriorated to the point that I was aspirating food. I got a PEG at the same time I received the trach. I do have someone with me 24/7. Some people ignore this rule, but I don't recommend it.

Mike
 
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