Lisa,
As I sit and think about it, I don't think my brother "coughs" anymore. When he needs suctioning, he'll type "SUCTION" and it gets done. His cuff is always closed so saliva does sneak down and his mouth is constantly being suctioned as well. In the beginning when he was being suctioned (when he was 1st trached and vented) he sort of gagged during the process.....he doesn't do that anymore. Strange the things that pop in your mind.....anyway....
I am so glad Gary is doing well....and so glad you are back too.
Alison

Alison ..
Although Gary's cuff is inflated to the max ..stuff gets down in his lungs..it is weird but he has an overexagerated gag reflex ..and if I don't use the cough assist ...that vent would alarm ... no lie.... 50-100 times a day..due to a whimpy cough over and over again.for hours on end..
I know because after his pneumothorax we had to wait 6 weeks to use it after the chest tube was taken out..we had to wait for the chest tube wound to close completely and then have confirmation it was completely gone internally by x-ray..though most of it resolved internally before the chest tube was pulled 5 days after it was inserted while still in the hospital ..( the pnuemothorax they think was caused by too high of a peep for his respiratory drive)...so vent settings were changed...he can breathe on his own for quite awhile and at times over breathes the vent substantially..causing too much pressure to the lungs...the pulmonologist dropped him from a peep of 10 to a peep of 3......hopefully knock on wood the change of settings will help reduce the pressure when he over breathes the vent...as this is an experience he nor I care to go through again...
But not being able to use the cough assist drove me and him nuts.. I was in tears and literally a zombie from lack of sleep for awhile ...but after getting the cough assist back... he alarmed the vent again by coughing no more than 4 or 6 times a day...as the cough assist pulls clumps of stuff out at once..much more junk than I could suction without it..and we could both sleep through the night again..
As hard as it was on me..it was harder on him..he has endured so much..and is quite a fighter..Lisa

I tested the vest two month after my last bout of pneumonia. I have a strong cough even after all these years. I've had numerous chest tubes and have gone through everything Linda Lisa mentioned with Gary. The vest didn't make my cough more productive so we sent it back.

Linda Lisa, if Gary's high pressure alarm went off 50-100 time a day his high pressure alarm sensitivity needs turned up some. Mine's on 65, I have a LP10. No we didn't get permission from the doctor to change that setting either. Who needs anyone's stinkin permission?!? LoL

Hi Dave..
The sensitivity setting has always been at 65..
Chest tubes stink... and I feel for you...we had a problem where after it was put in his blood pressure dropped and they could not awaken him...his vent tidal volumes dropped in half..because the tube went into far..I was watching the volumes drop an 1/2 hour after the insertion ..and requested a nurse to immediately page a doc to come back up...
His blood pressure kept dropping .as soon as the doc entered the room monitors and alarms started going off..blood pressure raidly fell and pulse was erradict...finally Dopamine was ordered to pull the blood pressure back up and the chest tube was pulled back out a little further.....but it was a scary night..6 people jumping on him to get him stable...and finding the right amount of dopamine to keep him stable was a rocky night..
Gary 's cares are tightly supervised by the VA on the vent . I 'm inspected once a month. at irregular intervals as part of the VA 's standard protocol for in home care here...infact Gary is only one of two people in our area that was allowed to be placed at home by the VA. on a vent ....so I do have to ask permission to change vent settings to be allowed to keep him home in my care ..the only other option would be to refuse the care entirely and go strictly Medicare ..however he does have a good doc..and they go well beyond what Medicare would provide in regards to providing a rotaing air mattress and back up generator.. plus I would not feel comfortable changing the seeting myself anyway...but due to his history of over breathing the vent and pnuemothorax the pulmonologist himself turned the "peep" from 10 down to 3 to try to avoid another occurrence..so far so good......
The coughing 50 -100 a day "only" occured for the 6 weeks he was unable to use the cough assist.. ..before the cough assist stopped and after the cough assist was able to be used again ...he only typically coughs 4-6 times a day...Lisa

Hey Lisa,
Through the years of "knowing" you and Gary through BT1 and know BT2, it has always been apparent how much fight the both of you have. I am proud to "know' you.
Chris's peep has always been set at 5.....right from the day he was vented....I don't think Chris can be 1 minute off his vent. It boggles my mind that he is in the state he is in in such a relatively short period of time.

Dave, I wish my brother would want to get on the internet and see your drive. Don't get me wrong, he hasn't given up....he would have given up a long time ago if that was the case. He just doesn't seem to have any interest but to lay in bed and watch TV.....the last time he got out of bed was Memorial Day to watch the parade for 45 minutes...then back in bed. What is your secret??? You are truely an inspiration.

Love to you all,
Alison

Alison,
I still enjoy participating in all life has to offer and I look at all the obstacle ALS provides as an adventure. It would be easier to just lay in bed all the time but that isn't me. I'm a people person and I like interaction with others.

If I never got out of bed or participate in life I wouldn't expect my family to provide care for me at home. It's not like I really expect them to even now but they want to because I'm game to get out and go wherever they want to go. If I never got out of bed I'd rather be stowed away in a nursing home somewhere.

I don't always side with the PALS every time I hear of the CALS leaving after a period of time because of that very reason.

Hey Dave,
That's what gets me about my brother....he was always on the go. He worked alot, rode a motorcycle, loved walks in the park...all those things. Now I guess his room is where he feels safe. If it is mentioned that he get outside on the deck, he then types he needs a better wheelchair. When we say we'll get him one, he types "not now". I guess he is dealing with ALS the best way he can....the only way he knows as he doesn't seem to be interested in getting on the internet to see what other PALS can and do do. I just wish he was more proactive....I wish he was more like you. Regardless, though, I will respecthis wishes and keep him happy and comfortable for as long as I can.
My best to you....and thanks!
Alison

Alison,I admire you and am proud to know you as well..
Gary does not get out of bed either has not for years..not because he is depressed... but because it hurts him physically too much it puts to much stress on his elbows and back...he no longer can hold himself up without being propped and strapped in the chair.....plus he feels it is much harder work on us to try to continually get him in and out of bed..he had several issues with bedsores as well that he longer has since staying on his airmattress..he does get up for showers however..
Now our livingroom is pretty much my bedroom..he and I sleep in the same bed..as I combined his hospital bed with mine by taking down one of the rails and attaching them together..my bed is adjustable so they are both at the same height as well...the kids take over my bed in the afternoon..to talk to him about there day and watch tv etc...
As far as ALS goes..he just doesn't like thinking about the disease itself too much..but does take a huge part in determining his cares..he watches everything , that everyone does..and if something goes wrong often he himself will tell us what it is..just because he prefers being comfortable in his bed..doesn't mean he does not take an active role in our lives...he just does what he feels is easier for him and us..Lisa

Lisa,
Maybe the reasons for Chris not getting out of bed are the same as Gary's....and I could understand that. But all he does is watch TV. He doesn't seem to have any interest in getting on the internet, he doesn't listen to books on tape. I know he misses his independence but I know there are things he can do to get a little of it back....he just chooses not to.
Alison