So here's the scoop:
It's all pretty dang good in the scheme of things.
There you go!!
In talking with the dietitian - who is giving a lecture on weight gain and ALS at a national symposium next month - he said this is the number one thing Luther can do to live longer. Keep his weight up. ALS is the only disease where obese people have actually lived longer because of their obesity. Eat eat eat. Even with Luther's diabetes, the dietitian said don't even worry about that. Do whatever he needs to do to keep on the weight.
Good news #2: Swallowing/talking are all in good shape
ALS affects people in two ways: limb and bulbar. Limb onset is what Luther has: he's losing his mobility and is now in a wheelchair the majority of the time. He can't dress himself. I brush his teeth, wash his face. It's become extremely difficult to feed himself. He has no upper body strength. If you saw him naked, he looks like a concentration camp person. All skin and bones. No muscles. It's painful for him to sit - no fat on his butt!
All of this being said, he doesn't have much bulbar onset yet. Bulbar is when your swallowing, your tongue, your speech and finally your breathing is affected. He has some minor issues but these issues haven't declined over the last 3 months.
At some point, the limb and the bulbar stuff meet up and the bulbar stuff is what makes you die. You stop talking, you stop swallowing, you stop eating, you could choke, eventually you stop breathing. Some people choose to be "vented" - putting a hole in your windpipe to pass a tube attached to a ventilator, which allows you to breathe. I am very very happy to report he has some minor issues with swallowing but: I will say it again!! The good news is his speech, his swallowing, his breathing have NOT declined in the last 3 months.
Good news #3: He found a robot arm to help him eat!
In the past couple weeks, his arm strength has diminished even more. It's almost impossible to eat on his own. He's been a pretty cool cucumber about letting me do stuff for him but I think it was the last straw when he thought about not being able to feed himself. We both realized this was the next step in figuring out... the next step. How could we leave him alone?
God bless the VA. Specifically Kristen and Sonya, his physical and occupational therapists. They came up with this arm thing - it's something they rigged up and once we're done, we have to give it back so they can pass it on to the next ALS person.
While I was thinking this would be kind of cool:
He is getting something that looks like this:
He still has to move his arm up and down - it's not electrical or robotic in that sense. So at some point, that will be tough. Or impossible. But we'll cross that bridge later. For now, we're both feeling better about his ability to eat on his own.
So it was a great visit. We put the arm thing in perspective. If I have to feed Luther every single day, I'll take that over not being able to talk with him or worrying about his swallowing or breathing.