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Wow, Jrzy is right Sue - you are on a never-ending roller-coaster of stress, demands & emotional pain!

Maybe this is not the place to mention this, but 5 months ago at our 2nd to last ALS clinic, the neurologist told us that nowadays quite a few ALS patients do not need to be invasively vented ...... that an ALS patient with respiratory insufficiency which is on a continual downhill spiral may be "maintained indefinitely" on a Trilogy or other fancy BiPap machine and use of a full face mask? I think the neuro told us that because Dave never had any excessive saliva or difficulty swallowing to complicate matters. His respiratory volumes were lower with each clinic visit, but Dave could still breathe independently for about 2 min. Anyway, I guess there are some patients who can continue to be maintained with non-invasive ventilation, barring infections, secretions, etc?

Strap that lap belt down tight in your roller-coaster Sue!
 
Buckhorn;

My wife does have secretion issues and cannot swallow but she is able to control the secretion using tissues. Based on info on this forum I suspect these secrections will increase.

We have elected not to vent and are encouraged to learn that the Trilogy can achieve somewhat the same results but we were unaware that these secretions (excess salvia, swallowing issues) could complicate matters.

Can meds be used effectively to control the excess salvia to mitigate the Trilogy issue?

Ernie
 
Jrzygrl and Buckhorn - yep roller coaster running full speed ahead. Funny as that is one of my fav rides at an amusement park, but there is nothing amusing about this one. :)

As to the ventilation, not sure a full time bipap would have worked for Brian, even with it on, his shoulders were coming up around his ears when he breathed. He couldn’t get used to the nose pillows, so it was nose mouth face mask which inhibited his talking. Brian was a talker, so that wasn’t something he liked. He used it at night and would do a little during the day, but he refused full time use of it.

For him, in the beginning, he could talk around the trach. That was huge. He really struggled when the bulbular area finallly gave in and his talking went. That’s when we were up continuously until he got the eyegaze. I can only imagine losing the ability to communicate. I’d find it pretty devastating myself.

We will see what today brings.

Still not sleeping as well as I’d like. Hopefully it will improve. It will be noted to the Dr when I go back in 3 weeks. Plus I’ll need to see what happens when I up the dose this weekend. If sleeping gets worse, I will call and cut back.

For now, I’m enjoying the gnawing feeling in the pit of my stomach being gone. Now to break the habits that created. Not good ones. No one needs to eat continuously.

And my shoulders are slowly moving back to the position they belong and are not as tight. That is also a good thing.

Hugs
 
Yes, my husband is on a Scopalamine patch (behind his ear) and it really dries things up. Downside is the severe itching that comes with being dry.
 
Ernie - there are a few other things that can be used for mucous as well. Brian has been on Robinul (glycopyrolate) but we stopped that recently as he was getting to dry. Atropine drops also can work. Some swear by plain Alka Seltzer too.


Well we are status quo once again. Fever here and there. The ups and downs of ALS at it’s finest.

On a good note, I finally got all the paperwork and my folks file cabinet sorted yesterday. I will probably need to do it again, but for now it’s in working order. I have a box of things from 2017 and earlier that need to be put in storage. That takes a load off of my mind. Today I will get the stuff that need to go to storage put away, then hopefully just the file cabinet let in my BR.

Well sleep seemed pretty good last night, although I was awake by 5. I’d love to sleep just a bit more. Thinking though this med is giving me the energy to get a few things done. Time will tell, it’s only been 6 days and it takes weeks to come to full power.

Hugs
 
Yesterday was again productive. I put those boxes in storage and now the room doesn’t look so overwhelming. I also took care of some personal papers that needed filed as well. Did some work stuff and even took time to chill in the afternoon. Got in a walk after dinner when DD was here. All in all a really good day.

Brian is back to using his computer like nothing happened. I’ll never understand this man, as hard as I might try.

Went to bed early last night and slept well. Was up twice to use the bathroom, but fell back to sleep quickly. Today I up my med, I’m interested to see what that does.

Today I take my Dad to the Dr for a follow-up, and blood work. Since I had a nurse on Monday, I’m trying to give my SIL a little break. She’s still dealing with her Dad and all the work she did on my folks apt getting that cleaned and turned back in.

Have an awesome day all.
 
Today turned out pretty well. Brian is status quo.

Took Dad to the Dr and they ordered him .5 Ativan for at night to help him sleep. Let’s hope that’s all it does and doesn’t exacerbate his dementia. Only time will tell.

I upped my med today and boy am I tired.

I also managed to get some of my filing and desk work done, plus some work stuff.

Life
 
I think I’m going to have to call the Dr about this med. Around 10 as I was getting ready for bed, the tiredness left and I didn’t have a very good nights sleep. I woke with a nasty headache. And I’m still tired. This isn’t working very well for me, and it takes time to build up.

Brian is status quo.

Off to the funeral this morning.

Hugs
 
Did you talk to your Dr? Can't you take the meds in the morning on getting up rather than at night? I hope you can find the right balance with it Sue.
 
Darn, Sue - I'm sorry! If anyone I "know" needs a good nights sleep, it's YOU sister! I too am hoping you find the right balance, as Tillie says, or some workable solution to find some brief respite in SLEEP!
 
Tillie - I did take my med Friday morning, that’s what had me so tired all day, then I “woke up” at bedtime. Yesterday I decided to try moving it to dinner time and see how that worked out. That was better, but still not “perfect”, although moving it later doesn’t seem like the answer either. I’m just thinking this particular med isn’t the right one for me. I didn’t have any of these issues with Celexa, although I chose not to use that one again. I’ll get it figured out. I’ll call the Dr tomorrow. Saturdays and Sunday’s they are closed.

Sleep last night was decent although I would not call it good. Lots of dreaming which leaves me feeling not as rested as I’d like. I also seem to be retaining fluid with this med - also not good. Yeah, this one is definitely not staying. At least not at this level, it’s too much.

Brian is Brian, what can I say. We are seemingly past whatever it was, at least for now. Who knows, tomorrow could be a whole different story around here.

Still loving the recipes from the Mealime app. Will make a new menu this evening and go shopping tomorrow. Good food. The only problem I had, was I love to eat fresh and I’m also limited to when I can get to the grocery. Some of the fresh produce went bad before I could use it. Have to look for a better mix of recipes or plan for 4 days, then shop again on Friday for the weekend. I hate to have to make two grocery runs, but I don’t like throwing away good food either.

Have an awesome day all
 
Ok, so I’m waiting on a call back from the Dr. Yesterday I took the lesser dose of my med and still had major side effects. I am not taking it today. Hoping the Dr calls soon and we can try something different maybe. Not sure why so sensitive to this particular med, but I am.

Brian is status quo

Had a nurse today, so got my payroll done and other work stuff. Then had lunch and went to the grocery. Came home, put things away and went and visited with a neighbor for a bit.

Good day.
 
Glad you had a good day, Sue!! You just so deserved one!! I hope you get those meds figured out soon.
Tara
 
Thanks Avacado.

Did not hear back from the Dr yesterday. I’m hoping this morning will bring a call. If I don’t hear by noonish, I will call again.

Slept ok last night, not perfect.

We will see what today brings.
 
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