This lifestyle of the moderate middle class and retired is great. Lazy days doing nothing. Physical therapy outside by the pool. Time to relax, sightsee, enjoy each other.
From the outside, Luther seems to be in a holding pattern. No arm movement, very limited hand movement (his right hand is shot. Left hand has some grip and movement).
He can still get up (if the chair is high enough) on his own and walk a few feet. Steps/stairs are virtually impossible. Anything longer than 10 feet wears him out.
But all in all there's been a languid, unhurried feeling down here. A little bit like time's stood still.
Under the surface though, I think there's a little more going on. Luther never says much. I complain about a gnat bite but he's pretty stoic about pain.
The signs are there. He's not drinking as much water. Not eating hardly anything. Asking for pain meds more often. More naps.
I ask him what's wrong. He says he's fine. I've stopped asking what he wants to eat and force him (in a gentle way) to eat lunch.
He was visibly uncomfortable a couple days ago when we were traveling, seeing sights. I asked him if he wanted meds. No, he said, I don't want to become dependent.
I asked him to think of it a different way. I wanted to shake him and yell WHAT THE HECK? But I've learned that doesn't really work when trying to get someone to change their mind.
I figure planting a small seed in which my idea (the correct idea!!!) is sown will soon become a bigger seed of an idea he thinks he came up with.
Back to him not wanting to take pain meds, I told him it's about being comfortable. Enjoying the time here. Not trying to power through the pain. There will be a time where meds might not help. .. enjoy this time right now.
Besides, between you and me, it's not like he's taking pain meds a million times a day. We're talking one. And the prescription is for 1-2 every for 4 hours. If he takes any, it's been one every third day.
So now that Luther thinks it's his idea to take pain meds more often, it's a conundrum, right? (My ten dollar word for the day) Hmm. I just looked up the definition. The answer to a riddle. A paradox. I guess it is, in a way.
Luther's taking more meds which is great so he's not in pain. But Luther's taking more meds which isn't great because it means it's a change... He's in more pain than before.
Little changes. Luther will never get better.
I read all these blogs and articles on people who say they are slowing down ALS by taking mega doses of supplements. Going strictly vegan. Exercising (which we've been told deteriorates your muscles faster). Rubbing coconut oil on limbs.
I wonder if I should be more firm about that stuff. I do the coconut oil because we stretch his limbs. I figure why not coconut oil? Its all the rage, it smells great and I'm rubbing anyways. Should I insist on all natural meals? Add kale shakes to his diet?
Am I giving up by not trying to find a way, any possible way to slow it down?
Early on, Luther decided he wanted to lead his life as normally as possible. Eat the food he loves. Hang out with friends, family. Do the stuff he enjoys. We're still trying to find a way to get him fishing.
He didn't want to be consumed with the disease in terms of new foods, adding supplements, rejiggering his though process in some mystical way.
That's the issue with ALS. Everyone's symptoms and subsequent decline is different. Stephen Hawking has lived 40+ years with it. That's rare but it happens.
Some people get it in their throat and mouth first. I've read of folks who are still driving, working because their limbs haven't been affected. Luther is the opposite.
In the end, though, regardless of the differences of the disease, it does seem to lead to the same place. A difficult decline, a change in the life you had planned. For most, a shorter life.
Luther just asked if I'd help him to bed. It's noon. This has been the case the last couple days. Back in a sec.
We went sightseeing earlier in the week. On the go, lots of walking and rolling. It occurs to me he's wiped out from that. It lurks in the back of my head that it's a little more. That he's in more pain, he's not eating, sleeping more. Is another change in the works? Is ALS planning something new?
Probably doesn't matter. As before we'll just adapt.
Mom and dad are gone. Luther's napping. A lazy afternoon ahead. That's why we're here.