Sleeping all the time...early stages

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Tillie -- those are such great points....thank you.

Nikki - re: Elysium - Hubby cannot take it because he is doing a trial but he would consider it seriously if he wasn't. All my info. is anecdotal so I'd ask if you are considering it. I've heard is that it's expensive.
 
My husband was diagnosed two years before yours in December 2016 (and we also have teens). He kept working (and driving) until the summer, but with gradually reduced hours. His was bulbar onset which was particularly hard for him given that most of what he did at work was meeting/talking with others. The speech therapist told us to think of having a jar/bank each day - it starts out full, but as you go through the day, it gets depleted.

So, your observation that it seems he has to plan and "save up" his energy to do the things he wants to do is spot on.

For my pALS, this meant that he made sure to schedule any calls/meetings in the am when he (and his voice) was at his best and then he came home in the afternoon for a nap to recover. That way he would be awake in the evening with the kids and went to sleep around 10pm so he could get a full night’s rest. Although it shortened his work day, it lengthened the amount of time he was able to keep working and kept him on a regular schedule which really helps.

Similarly, when the kids had sports events, he would be sure to adjust his nap schedule and plan accordingly so that he could see them without being too taxed after.

Can’t remember when he started using the biPAP…think it was about 9 months after diagnosis but, in retrospect, he should have started it much sooner (recurrent theme for much of what we did/didn’t do). Definitely echo all said here about the benefit it gave him. He still only uses it at night and naps. He immediately feels energized when he puts it on (so much so that it sometimes takes him a little bit to go to sleep..but in a good way).
 
Also wanted to share my and my husband’s two cents for the Spring Training trip: Highly recommend it.

Shortly after his diagnosis, my husband took my older daughter to his alma mater (trip had been planned before diagnosis). It was a really important bonding time for them. Its too bad that no one is able to go with him (no high school or college friends?). But it sounds like he is still physically able to manage this and it sounds like you are an amazing planner and great at anticipating his needs. Here are some considerations if you have not already thought about them:

1. Driving - is he planning to drive while there? any other options for getting around? encourage him to limit driving later in the day. Are they staying somewhere with lots of restaurants nearby so that he can minimize driving at night?

2. Handicapped parking pass - does he already have one? if not, I’d start the process now since you’ll need one anyway. If he can get it before the trip, then he can bring along and will minimize the walking he has to do.

3. Assistive mobility device - MarieLaure made the great suggestion of a wheelchair*. But if he is stubborn with that, insist that he brings along the walker at a minimum. As with so many things, we started using the walker later than we should have. As soon as my husband started, he immediately embraced it since he was able to move so much better and longer which enabled him to get past the ego thing. Added advantages of a walker is that its means he will never have to look for a chair if tired and avoids needing to carry a backpack since he can storage food and drink… which brings me to next point.
(* maybe encourage him to get wheelchair or other assistance while in the airport at least…last thing he needs is to exhaust himself with a long walk to/from gates before the trip even begins)

4. Food and drink - So incredibly important that he eats frequently and stays hydrated which is especially hard when travelling. Consider sending them along with high calorie/easy to eat items - e.g., protein drinks (and straws!!! especially the wide ones). Or maybe give him a shopping list for things to get as soon as there. One “advantage” of this disease is that all the crappy foods my health conscious husband once avoided were now “good” for him. So on his trip with my daughter, he enjoyed heaping plates of fried chicken, biscuits and gravy, grits, etc.

5. Location tracking - my kids think its creepy but I have findmyphone (tells you where their phone is at that moment) and Life360 (tells you where they are as well as where they have been) on them and my husband. It gives me piece of mind to know where they are.

6. Packing/Dressing - Pack easy to put on clothes (e.g., no button-down shirts; avoid jeans; slip on shoes vs. shoelaces…though flip flops not good given risk of falling), any assistive tools like special utensils for eating or button-helper. Rollaway suitcases (remind your son to be sure he is the one to lift his and your husband’s suitcase to overhead).

7. Daily schedule - Encourage them to so stuff earlier in the day (when energy is highest) and to be sure to have naps built in with no exceptions. Should not push himself too far since he will pay for it later or the next day. And to be sure to eat regularly and BEFORE he gets hungry/tired.

8. Leverage your son - while you don’t want to you stress and overwhelm him, empower him to help in his dad’s care/wellbeing. Teenagers are notoriously self-absorbed, but gently encourage him to be more aware/proactive of things like being sure his dad is eating and drinking regularly; helping him to cut food and get dressed if needed; insisting on taking an afternoon nap; and understanding that he just cannot do everything that he once did so that they may mean they have to skip some things and call it a day earlier than either of them would like.
 
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