Tuesday, November 18, 2014


The best news:

Luther's gained 8 pounds!

ALS is a muscle-wasting disease, which basically means your muscles die.  It's not like he can go to the gym and lift weights and get them back.

The more weight you lose, the faster an ALS patient dies because it just makes you weaker, faster.

So yay!  After losing 50 pounds in the first 9 months of testing and diagnoses, he's been pretty stable and now, gaining weight is good.

Better news:

His swallowing hasn't gotten worse. 

This is pretty major!  Think about NOT being able to swallow and what that might be like.  No eating, no drinking, you could choke on your spit - that's when the dying faster part kicks in.  

I've been pretty worried because I've noticed Luther's words slurring a little and his coughing is OUT OF CONTROL.

Luther and I never fight because he's too cool of a cucumber to engage in a fight. But today, we had something that came close to looking like a fight.  

We were in with the speech therapist (who looks like an Abercrombie & Fitch model, by the way) and of course, Luther would not cough.  Bo (yes, that's the speech guy's name) even fed him graham crackers to get him to cough and no go.  

It makes me feel like I'm crazy.  I hear Luther coughing and choking and I see his face getting red and making weird coughing faces and I worry.  He's all like "I have no idea what you're talking about."  Wait... what?   Luther doesn't think he coughs at all.  His coughing wakes me up, for heaven's sake.

The good news is his coughing is NOT related to swallowing issues.  Bo thinks it's due to acid reflux which IS due to the extra saliva building up as well as smoking (that's a whole 'nother lecture) and drinking coffee.  Fortunately, there's some medication Luther can take as well as the whole stop smoking campaign I'll be waging.

The not so good news:

His mobility is worse.  That's been clear over the last month.  He's fallen twice, he can't get up out of a chair anymore, his arms and hands are basically useless.  A month ago, he could feed himself if he ate finger foods (remember the pronto pups from previous posts?).  Now, someone has to feed him.

His legs have some strength and he can walk, just not very far.

On a related note:  because his hands are so weak,  they're putting a "foot drive" on his wheelchair. Right now, he uses a joystick on his armrest and his hand cramps up.  Next Monday, they're putting something on his foot rest which allows him to drive the wheelchair.  Cool!!

What his loss of mobility means is I need to stop working.  We've chosen to stop using a home health care worker because we've had so many bad bad bad ones.  Because we're leaving in January to head south, we decided not to continue going through health workers for the next two months.  

I thought reducing my hours to around 25 hours a week would be good.  It isn't.

The therapists expressed some concerns over leaving Luther alone - which I do for a few hours when I work.  I do have people coming in to check on him for an hour or so but not stay with him.  If he couldn't get up out of his chair or had to go to the bathroom or fell down... well, it would be awful.  

The idea of not working at a job - a career - I've built over the last 17 years is just a whole different blog post.  

I'll just leave it at my perspective is changing - HAS changed.  

It should be so simple, right?  My husband is dying and I want to spend every single second with him. 

There are a zillion million things at play - work, finding time, being emotionally tired, getting affairs in order, grocery shopping, packing to leave - things that keep me from spending time with him.  

But you know what?  I'm trying to cut through the bullsh*t and make it simple.  Wait. That's a bad word.  Cut through the stuff we are never really exempt from doing - the way life just goes on with or without us.  Sometimes it feels really really hard but none of us really gets a pass from making dinner or cleaning the house or feeling emotions (I try sometimes but... those dang emotions tend to squeak out...)  I never ever want to look back and remember I was at work or I was too tired to be with Luther.  

Ok wait.  This post isn't about me.  Funny how that works.

Overall, Luther is good.  Luther is GREAT.  I can - we can - deal with his not moving issues.  Sure, it's a struggle to adjust but many people live with some form of paralysis.  There are nifty gadgets to help get him up, get him out.    The fact he has maintained his weight and his swallowing / breathing hasn't changed is most excellent news.  

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