Sleeping all the time...early stages

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Thomas933

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CALS
Diagnosis
12/2018
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Uni
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Hello: My husband was diagnosed this past Dec. He has limb (legs and arms) onset. He is still working and driving. But...he sleeps a lot. Like almost all the time when he is not at work.

I'm just trying to be patient with it and I know extreme fatigue is part of this awful disease. I also know that he may be trying to escape a bit which is also fine however...it's hard to watch him sleep this precious time away. I feel like we have limited days and he is sleeping through them.

Tell me I am being a jerk and should leave him alone to rest. I know I should it's just hard.
 
I am sorry you are going through this.

I urge you not to underestimate how fatigued PALS can get and how valuable rest is in delaying progression.

I found that while I was still working I did nothing but work and sleep. Yet, even with that, I was not getting sufficient sleep and my progression was moving along at an alarming rate.

I stopped work shortly after diagnosis. I believe all I did for the first 3 or 4 months was sleep and talk to insurance folks. I was sleeping up to 20 hours a day.

The good news is that for me, once I stopped working and started getting the rest my body was demanding, progression seemed to slow down. I don't know if that would be the case for other PALS, but it certainly was the case for me.

Now, I simply get the sleep I need. It is not just sleep, but it is conservation of effort that I believe has made a big difference. The more time I spend and bed and in my wheelchair (where I am properly supported), the better I feel.

I also think you are wise to consider the potential for depression contributing to what he is going through. Be aware that true depression is not overcome by willpower. It requires medical intervention. If you suspect depression is a contributing factor, you need to work with your PALS to see appropriate medical folks.

Steve
 
Steve --- THANK YOU! This is the check I needed...and yes, depression is part of the equation, has been for years and I know that it is not a will power thing (at all). He manages it well and I know it's real.

I was not aware that sleep slows progression but I am so glad you were able to get the sleep you needed. I hope you are doing okay. Be well.
 
100% agree with Steve. I worked for several months after diagnosis and I did nothing but sleep (or be cranky) when not at work. I felt like I was at the bottom of a deep well. Once I stopped working, saw a psychiatrist and got adequate restful sleep and work out proper meds, I was able to be present- before that it was all irritability and deep grinding fatigue all the way.

Sorry to jump in here- I don't normally comment on caregiver threads, but had to agree with Steve.
 
I will pile on and agree too.

PALS have such huge demands on their energy every day and if they push themselves they actually progress faster.

I understand you wish he would give his time to you, I totally get that. Is he considering giving work away?
 
Couple of things -- I don't really expect him to give his time to me. He feels bad when he misses stuff. His thinking is...I possibly have 1000 days left on this Earth and I don't want to waste them.

I would be happy if he was doing anything he loves. I'm trying to get him to pick a few things each week that he wants to do and then I work out the other stuff. So, it's not me...I just want him to live.

As far as work goes, he wants to work. Plus we have a young family and my salary is not enough for us to stay in our town/school system. Also, work is good for him mentally.

It's good to hear from you guys. I don't doubt the exhaustion -- I know it is real. He also has a lot of trouble sleeping at night if he sleep to much during the day so it's a cycle too.

We are finding our way. I do appreciate your input - I'm sorry you are all here, too.
 
If he wants to work that is one thing. If he is working mostly for the money though have you run the budget with his ssdi plus the benefit that each child is entitled to once he receives ssdi? It isn’t going to make up the difference but maybe possible? Just a thought
 
Nikki - Thank you. He does want to work and his work is letting him work from home when possible. We spent most of Jan. doing all our finances and estate planning stuff so we have a sense of the budget.

I think he's finding a balance of quality of life and working. His favorite thing to do is watch our boys play their various sports so as long as he has energy to do that, I think he is okay working, too. He gets a lot of satisfaction and purpose from his job.

What I'm noticing is that he needs to plan and "save up" his energy to do the things he wants to do. Or, he needs a lot of recovery time after he does something. I think we both have had trouble with trying to maintain a normal-functioning home for our kids but also making sure he get the rest he needs.

He feels guilty resting so much. It's just hard to know what is the right thing to do because we are constantly reacting. For example, he insists that he can go to MGH from Rhode Island on the train, by himself, for a clinic visit. I insist that I should drive him so he can sleep up and back and he gets mad because he doesn't want me missing work. And, he won't let anyone else take him. But, I know that the clinic visit just by itself is too much for him to do alone.

I love him but geesh, this is not easy to navigate. Thank you and I know that is way more narrative than you asked for....
 
You are right about saving energy and recovery time. I actually put a day before mgh and 2 days after as blocked out days in my calendar
So I don’t inadvertently make a commitment. MGH isn’t the only thing but the biggest energy drain. It is great that you are driving him. I am sure you want to be there and he is glad for the support.

He will figure out his limits though of course they change over time.

He is lucky to have you
 
Nikki -- thank you for saying that. I think he mostly agrees :).

Good point about saving energy for MGH -- I will suggest that he thinks about extra rest before and after his visits.

He is also planning a solo trip with our 12 yo to Spring Training at the end of March. I'm happy he's doing it but so worried about how taxing it will be for him. The trip is an important one as he wants to do it now while he can with our son. But, I'm concerned it's going to be too hard for him and he is going to feel like crap if it is...

We tried to find someone to go with them, but no one can swing it right now. All I do is worry and then try to figure out how to intervene without being a nag or making him feel like he can't do anything.

Nikki and everyone else - you have all been such a helpful resource to me, I hope to return the favor one day.
 
Ditto to everything noted above.

Energy conservation is key. Ways to conserve energy include the obvious getting enough sleep. But other ways that might not be obvious to someone recently diagnosed include:

1. Early use of BiPAP. He is probably getting PFTs and the clinic will advise on when to start BiPAP. But getting started earlier rather than later, if possible, can save a lot of energy.

2. Early use of assistive devices for walking. Cane -> walker -> wheelchair. Think of them not only in terms of enhancing mobility and preventing falls, but also in terms of energy conservation.

3. Help with dressing and bathing if hands are compromised.

4. Maintaining adequate hydration and caloric input. If chewing is tiring, then time for a mechanical soft diet with lots of blended foods. If swallowing is difficult, then a feeding tube. Weight loss burns more muscle, speeds progression, and drains energy.

Definitely consider depression as a contributing factor to fatigue and poor sleep.

And, if he absolutely loves his job, is there a way to do it part time?
 
Excellent points Karen. I will add afo for energy conservation if he is walking without one. I got one early and although I could walk without it I noticed days I wore it I got less tired. The orthotist said getting it early makes a big difference and most people get theirs too late. And you may have to ask for it to be ordered that soon
 
He is using a cane and I have a walker in the house for when he wants to use it. He ordered his afos about 10 days ago -- they should be in soon.

His caloric input is okay -- he knows the "fat mice" progress slower so he's making sure to get enough calories. I hand him water every chance I can.....

His lung function is still over 100 and yes he is getting pfts when he sees the doc.

You guys are awesome....ty!
 
And I need to ask: does sleep really slow progression down? I have not heard that as a way to slow progression, just as a strategy for coping with ALS.

If so, I’ll make him sleep more!!!
 
In re sleep and progression, ALS burns energy at an abnormal rate. Sleep, during which metabolic demands are low, helps restore that.

There are also known relationships among depression, anxiety, pain and sleep -- if one is out of whack, the others often are as well. You literally feel pain more when you are tired, and it is harder to maintain mood as well.

And of course being diagnosed with ALS and starting to deal with that reality, whether with legalities, work changes, going to clinic, what have you, saps energy in its own right.

He can have a balance with working as long as he can, after which his focus will have to shift. So if he wants to work, watch the boys and sleep more than anything else right now, I say, let it be. And if continuing to work speeds up his progression, that is his choice as well, because he knows the tradeoffs as well as any of us.

Is there a plan for the boys' school when he has to leave work? If not, he may be worried about that? So if it can be worked out, maybe that would ease his mind.

Best,
Laurie
 
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