ALS advancing?

[hopeful warrior]

It seems my husband is exhausted. Literally and constantly. We had company over the holiday weekend. He stayed in bed all day Monday and I didn't think much about it. However, Tuesday I got him up and put him in the shower. He was exhausted at the end of the shower and was groggy all day. He went to bed Thursday night and has yet to get up.

I am feeding and medicating on schedule. I go in and talk to him and rub his hands. He doesn't seem sad, just very tired. His breathing machine is on 24/7. The Drs. and home health don't say much but don't seem surprised, either. They say to call them if it continues. Really?

My gut is twisted as I sit here listening to the baby monitor, wanting him to call me. ARGH!

 

[sadiemae]

Is the weather hot and humid? maybe he needs more fluids. We are going to neuro on Thurs, and I am going to be asking about Nuvigil, a drug to combat fatigue. Will let you know. HUGS Lori

 

[joelc]

From my experience that is normal. I experience the exact same thing. I just accept it and don't get concerned. What else can be done? LOL.
Try not to worry, it is just this disease.

 

[Miss]

We had company over the weekend, and the same thing happened. My husband was exhausted. It has taken all week for him to appear to gain some strength - then he fell twice today. It worries me because we are going out of town on Wednesday. I just hope it doesn't do the same thing again.

 

[ghii]

My husband sleeps most of the day today. He does that very often these days.

Missy, my husband seldom falls. I read about it here and it occurred to me he does not have that problem. He is able to carry his drink from the kitchen to the bedroom. I was so happy yesterday, I made fruit smoothie with vitamix and he drank it. I tried the same today, thinking at least he will get something to fill him up. He drank half a cup and went to bed. He is tired all the time, too tired to care much about anything.

In a way it was good I got so sick on Friday with stomach flu. I understand now how it is with him, the mind concentrates on surviving only, no other thoughts was with me but to endure the sick stomach.

I hope your trip out of town will go well.


ghii

 

[Miss]

My husband hasn't been able to carry anything from one room to another for months. That's why he had to go on disability.

 

[luvnmm]

I know my mom has to sleep and rest a lot after trips to the doctor, company coming over to visit...things like that. It exhausts her. If it involves physical movement then it wears her out. Just let him sleep. My mom's doctor at Duke Clinic says to listen to your body. If you stop when you get tired, you've done too much. I wouldn't worry too much.

Missy, my mom has had multiple falls. She has to use her walker to go anywhere. She uses her cane when she goes where her walker won't fit.

 

[BarryG]

I have more energy and am panting less since going on bipap at night but I still can't do much without getting tired. Too much to do and no energy to do it!

 

[Miss]

Hopefully, todays falls were a bit of wakeup call, and he will start using the walker regularly. Rough, rough day.

 

[hopeful warrior]

Thanks, you all. I appreciate your input.

 

[Just J]

Barry, you bring up a good piont about bi-pap. My husband does not even want to use bi-pap. He rarely gets 3 hrs of sleep at a time and like Hopeful Warrior's PALS he is exhausted all the time. When preparing for company he gets plenty of rest ahead of time then can socialize for 3 - 4 hours, then he is wiped out for days following. So to Joel's point I do feel it is just part and parcel to the disease.

 

[Miss]

We had company today, and I noticed that, if they move around my husband, he is okay. If we go somewhere, and he has to move around others, he is exhausted. I guess I'll jsut have to start doing some housework and keep the house open for guests here! Clearly, being in his own environment makes a big difference in his tolerance.

 

[JeffP]

im really saddened to here this .someone suggested a bypap i think it was barry as he tried that if not maybe it is an option my prayers go out to your family

 

[irismarie]

sweetheart, is he making things as easy as poss for himself? Why is he not in hiis wheelchair instead of using a rollator?

I did not understand the concept of "saving oneself" to begin with. it is so natural to push ourselves and TRY to do things. But at my hospital they hammered it into me to do nothing outside what comes very easily.

Let me quote the specialist
"You must realise that every effort you make will have the opposite effect to the desired one"
"You must work at total relaxation and a setting up of any and every aid that can diminish effort and tiredness."you

I hope you will be able to help him and yourself and turn this around at least a little
Much love to you all

 

[kelly]

My hubby is also exhausted by anything out of the routine. He looks at me with his gorgeous eyes and just looks tired. I know he hates the fact that his energy is so low that he lays in bed for 3 or 4 hours during the day. He does not sleep...just lays there watching tv. I love the advice Irismarie.