Sleeping all the time...early stages

Thanks Laurie for the info. Re: kids school - they go to public school so the only plan is to stay in our home. This is for many reason, not just for school.

We have a financial plan worked out. I told him he could stop working whenever he wants to and that we would work it out. I think he knows he gets to decide.

I think he will work as long as he can for his mental health even if he has to give up other things. We’ll see

Ah, got it -- thought you were implying money was a factor in the schools.

Staying put is always desirable if possible, e.g. the home is adaptable to equipment needs and the rest pencils out.

You're right, it's hard to be on board with some decisions, but enabling him to make them, as it sounds like you are, is a very precious support.

I'm not sure if it has been mentioned or if anyone has yet asked... does your husband use a BiPAP during the day or night? If the answer is "no", I've got a story to share. If the answer is "yes", then I'll defer to all of the things said earlier. Keep hanging tough. You're right... it is not an easy endeavor but you are doing a great job!


My best...


Jim

Jim - he does not.

All good advice here. You are not a jerk. He needs the sleep. How about suggesting a wheelchair for the trip he wants to make ? Explaining it will save energy that will be welcome then and also make YOU feel better about it.
You mean he really wants to go alone ?

There was one time when my PALS was going to go on a trip and I had no idea how he was going to make it without walker in the hotel room and I was definitely nervous about it. I told myself that so many things will be falling away for him that I have to deal w. my own fear and just let him go. That was hard for me.
A few days before the trip he cancelled it.
I was greatly relieved.

I just want to say that my heart goes out to all of you in families with young children. Mine are a bit older now (college and out of college). It sure is not easy.

Not sure he wants to go alone but he wants to go and no one can go with him. So, I’ll do what I can to make sure he is safe and set up. Wheelchair us s good idea. It’s so hard - want him to go AND be safe and okay.

I’ll try to have a contingency plan if he should need another person. Not sure what or how but I’m trying. Ty!

Darcey showed her first indications of "something being wrong" in Nov of 2012. Through all of 2013, they chased a misdiagnosis of CIDP. In the spring of 2014, she was referred to Johns Hopkins for another opinion. The doctor asked Darcey for information on how she was feeling and what she'd noticed. After she answered and he discussed her answers, he asked me the same question about Darcey... from MY point of view.


I told the doctor that I'd noticed that Darcey was losing weight... and doing so at a rate that seemed much to rapid to be healthy. I also explained that she'd fall asleep multiple times during the day. In fact, it had gotten so bad that we'd be in the middle of a conversation and she'd fall asleep. I mentioned that at night, she wasn't comfortable laying flat in the bed. Laying flat made her feel like she couldn't breath well. Sleeping at a slight incline, she felt much better. He nodded his head and went on with his questions and fact finding. Before we left that first visit, the doc said something along these lines...


I know this isn't what you would like to hear, but I'm pretty certain that you have ALS not CIDP. We'll run all the tests you've already taken, but we'll do them to verify our findings. Before you go home today, I'll call in a prescription for a BiPAP machine to help you with your breathing. He continued...


"The reason you are losing weight is that you are having problems breathing correctly... and especially at night. Your body is trying to get rid of CO2 that is building up, but it is having problems doing so. At night, you're working so hard to breath and to get rid of the CO2 that it is like being in a marathon. You're actually burning calories and that is what is causing the weight loss.


From the first moment that Darcey got the BiPAP, she began to feel better. For quite some time, she only used it at night. She regained energy that she hadn't realized had been lost. She quit losing weight. And she quit falling asleep and feeling like she needed to sleep all of the time. She really felt as if she was atop the world again.


I don't know if this is what your husband is experiencing or if it is something else. But by knowing what Darcey went through you all can try to determine if this same type of thing might be what is causing your husband's feeling of needing to sleep so much. Anyway... that is our story. I hope it helps you find your own.


Again, my best...


Jim

Jim (and others) -- We saw his doc. at MGH yesterday who said there was a new paper on early BiPap use released last week.

When I get more info on it, I'll post it here if it the info. is relevant. Thank you for raising the issue and making me sound wicked smart with his doc.

Hope everyone is doing okay today.

If you could get the citation for the paper I would really appreciate it. I have seen some earlier work but would love to see this

Nikki - Sure thing!! You will have it as soon as I get it. I have a doctor friend of mine trying to find the paper.

Also -- are you or have you tried Elysiumm? You probably know about it already but I thought I would mention it....

https://alsnewstoday.com/2018/04/03...ug-designation-amyotrophic-lateral-sclerosis/

Hopefully will be back soon with more info on that BiPaP paper.

Faster than I thought. Here is the abstract. I can get the full paper if you want it:

https://www.ncbi.nlm.nih.gov/pubmed/30394534

this is from last July:

https://www.frontiersin.org/articles/10.3389/fneur.2018.00578/full

There is a growing body of evidence. For those who lack reading time, the Frontiers paper supports early BiPAP (FVC 80% or better), more hours of use (>8/day) and potentially combining with CoughAssist. I say "potentially" for CoughAssist because it does not help everyone, but the data support trying it.

The paper also points out that ex-US, some countries routinely initiate sooner.

Thank you for this - so important for the impact on quality of life.

If our PALS don't sleep well we are all behind at the beginning of every day.

If our PALS is fatigued then they are frustrated at missing out on life.

If our PALS is depressed then the monster is winning.

Let alone the impact of those 3 things on us as CALS - if our PALS doesn't sleep well, you can bet we don't. If they are fatigued we are doing more. If they are depressed we are trying to bring us both back up to a higher more positive place.

Anything we can do to fight these 3 things can make all the difference!

Thank you.
If you were asking me about Elysium I don’t. I was looking into it but reading the study and some anecdotal reports I decided against it. Did your doctor voice an opinion? Or not discussed because you are pursuing trials?