Just when you think you have things figured out...

[soonerwife]

This disease is really a moving target... Every symptom that arises, you make an adjustment which causes another symptom.

Cliff has had two bad nights out of the last three due to saliva that he is unable to swallow while sleeping.

I think I already told you all that the lady that I was going to hire to stay with him when it is too hard for my SIL is moving to Florida.

Today my SIL came by to tell me she has been diagnosed with breast cancer. This breaks my heart on so many levels. Especially for my 88 yr old FIL who lost his wife in March of 2016 right after Cliff was diagnosed with ALS. Now he has a daughter with cancer.

She came by to let me know because she considers me her sister and also to let me know that she is hoping she still can but there is a possibility that she won't be able to help with Cliff.

Her husband is also having a stress test on Tuesday after a scan showed some issues. UGH!

Sometimes I wonder why things have to be so hard?!

 

[JimInVA]

They say that things are hard to help one "build character". Well, I'm already a "character"... so I'm ready to move past all the challenging things. I want this to end... but I SO DON'T WANT IT TO END. Such a constant struggle, eh? Know that you're not alone and that you are being thought of!

My best...

Jim

 

[bigmark1954]

JUST a thought....I use Mucinex for those nights when I can't keep up with the mucous. You prolly already know this but just in case you haven't tried it.

 

[KateEmerson]

All I can say is I am so sorry you are and your family are going through all this. It is too much. You are in my thoughts, Kate

 

[Narrowminded]

Sooner I am sending huge hugs. Unfortunately it never seems to get easier. I know about the figured out part that never seems to go as planned. The worst part of it, is what changes the figured out part. You and the entire family at in my thoughts. Vent all you need to here, cry whatever - we got you.

Also benedryl can help too.

Hugs,

sue

 

[soonerwife]

The dr suggested benedryl but in the past he wasn't able to use benedryl because it would keep him awake?! Is it possible it could affect him differently now?

 

[affected]

what about alka seltzer?
is he sleeping semi upright and with bipap?

It really is too much when others in your family are now going through their own health issues. You will want to support her, but she was going to be supporting you, and it's not easy for any of you!

huge hugs

 

[soonerwife]

He is using alka-selzer everyday. He is sleeping semi upright and he uses bipap all the time that he is in bed.

 

[affected]

Has he tried mucinex as Mark suggests? Might be worth a shot?

 

[soonerwife]

Yep, we have tried mucinex as well. Some day's its better and some days it's not. I can't figure it out. I thought more water was helping with all the thick stuff and then he started having rough nights with excess saliva. Even with the scopolamine patch, still up off and on all night.

 

[Narrowminded]

Sooner - Brian also takes Robinul. They do get used to it and you have to keep upping the amount, but it has it's limits and Brian has just about reached those. Maybe ask his neuro for other suggestions.

Hugs,

Sue

 

[4tloml]

All of this must feel like a "testing ground" for sure. I'm sorry your FIL is getting hit with 2 ill offspring after so recently widowed--that's a lot for one person. And between your need for help and your concern for your SIL, you must feel like the rug got pulled out from under you. My hope is that she'll have incredibly successful treatment and a cure and that her husband's issues end up a fluke instead of something serious.

Has Cliff ever tried prescription Glycopyrrolate? We found the Mucinex really helped with mucous, but when the saliva got out of control his doc prescribed glycopyrrolate and it's worked great.

My thoughts are with you all.

 

[JimInVA]

Darcey noted that milk based things caused her lungs to fill. So she avoids those things (milk, cheese, etc) as much as possible. When she does splurge (i.e. a small bowl of ice cream), she takes a [generic] Mucinex.

Jim

 

[soonerwife]

The first thing they put him on was glycopyrrolate. He worked well but he was gagging and throwing up from thick mucus. So they switched us to Atropine 1% drops.

Then I started doing his feedings and upped his water intake. That seemed to help with the thick he started the waking up all hrs with excess saliva while sleeping. So they gave us Scopolamine patches. They don't really see to be taking care of the nighttime problem. I also make sure I give him Atropine right before bed. It just seems like nothing really takes care of it?!

When he has trouble with the thick stuff, I use Mucinex. He also uses Alka-seltzer every night.

 

[sunandsea]

Sooner - Just wanted to tell you I'm thinking of you as well. So much to deal with, it's overwhelming I'm sure. I can't advise anything beyond what has been said - Mucinex has helped us so far with the mucus and saliva isn't yet a problem, though I feel it's coming. Hoping things improve soon, on all fronts. Judy