Update

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.  

Taking a blog break.

I suppose when I write things other people read, I open this stuff up for scrutiny.

I think I'm going to take a break.

We have a clinic coming up Nov 18 -- an all day visit to the VA to see how Luther's doing.

I'll post how he's doing then.

Some things you don't want to see...

Do you want to see your future?   Good, bad, ugly??

This is what going to a support group is like.  Or watching or reading something about ALS.   It's hard to hear or see what's in store.  It's hard to hear how tired or desperate or angry people are. Sometimes it's even hard to hear or see people being awesome!  Hard in a different, sort of raw and emotional way.

We decided not to see the ALS movie "You're Not You" for a couple reasons:

I don't want to watch a movie star depict the life we lead.  Neither does Luther.  I'm glad for the awareness, for sure (although I don't think the movie is too popular...).   But it's never really the life we lead - that would never make a great movie.  I'm sitting here in my long undies and a sweatshirt, Luther's downstairs watching college football.  We don't have a kooky home health care worker leading him on crazy adventures.

There are enough real life documentaries to watch, to support, to spend our time opening our hearts to this struggle:

Patrick O'Brien's had ALS for 10 years.  10 years!!!  He's been filming his "journey"  (I hate that word - like it's some adventure down the yellow brick road) - he's been filming his disease.  The documentary is coming out later this year.

http://time.com/3160305/living-with-als/

Hope for Steve.  I follow this couple on Facebook.   Her attitude toward being a caregiver changed my perception of the choices I make in the face of living with ALS.

https://www.facebook.com/pages/The-Documentary-Hope-for-Steve/195021390697220

This is the story of Tempt One - a 30 year old graffiti artist.  The first link is an recap of the amazing technology that's come out of his disease called the Eye Writer.  The second link is the documentary.

http://www.fastcocreate.com/1679433/getting-up-how-a-locked-in-graffiti-artist-inspired-the-impossible

http://gettingup-thedoc.com/

We'll continue to go to support groups.  I go to therapy - which, at times, is like going to the gym.  I never want to go but I'm glad I did once it's over.  I get tired of facing things, of talking about ALS. But facing those fears or anger is good.  It lets it out and gives us space and time for the good stuff.

Pick a cliche

Feeling the immensity of ALS a few nights ago but the last couple of days have been mundane, back to "normal" and for that, I'm grateful.

I'm upstairs, watching some goofy reality show and he's downstairs, hanging out.  We're leaving soon to get his haircut, I'm going tanning (I know!  tanning...) and then we're getting pedicures.  Important, mundane stuff.

Life moves on whether I'm hiding under the covers or fully present.

So pick your cliche of the day:

Today is the first day of the rest of your life.

Live today is if it's your last.

Dance like no one's looking.

Be happy for this moment.  This moment is your life.

Cherish yesterday.  Dream tomorrow.  Live today.

Life is like a bicycle, in order to balance, you must keep moving.

Your struggle is simply a part of your story.

Tough times don't last, tough people do.

We must let go of the life we have planned, so as to have the life we have waiting for us.

Turn your face to the sun and the shadows fall behind you.

Just keep going.

Pick your cliche.  There are 1000 more.  Whether it comes naturally or I have actually say it over and over and over until it comes true - TODAY IS A GOOD - WAIT!! MAKE IT A GREAT DAY!!

My last cliche of the day:  fake it 'til you make it.....

Overwhelmed, under the covers...

The life I had is gone.  The life I thought I was going to have will never happen.

When Luther got sick, I questioned whether I'd be able to live up to this illness.

Tonight, I don't know if I can.

Tomorrow, I will, but tonight, I don't know what to say, what to do to make this any better.  How do I make Luther feel better?

I got in to bed with Luther tonight, his little twin hospital bed and put my arms around him.  I started to cry and then realized he couldn't turn over to face me.

He couldn't even reach down to touch my hand so I had to stop crying so he wouldn't feel any worse.

I get it, I understand that aren't any guarantees.  I know there are people worse off than us.  The world doesn't stop because Luther's sick.

We have a zillion decisions to make.  Some are financial. Some are very personal.  Some we can't make alone and some we don't want to share.  Much of this hinges on the future -- a future that is cloudy and uncertain.  A future I want to be bright and happy and full of things crossed of the bucket list.  How do we balance financial stuff and bucket lists?

Plus I can't cook.  That's been on my mind.  How do I keep Luther fat, staving off more muscle degeneration if I can't figure out how to menu plan.  Popcorn for dinner is ok with me.  It's like sudoku or quantum physics.  My fridge becomes a big black hole.  I've been trying to make slow cooker chicken and dumplings for a week but I have to time it just right to be home an hour before it's done so I can throw in the dumplings.  Just typing that made my brain freeze.

That was a stupid sidebar, I'm trying to take my brain off this emotional tsunami.  Ugh.

What I realize the most is how much my life is changing.  How much I have to change.  How much I have to take on in order to create a good life for Luther.  Tonight I bugged him, I nagged him, I brought up some really tough issues.  Stuff we are both responsible for but I put it on him.  It wasn't fair but I did it out of being scared, feeling insecure.

I think it's time to get under the covers.  Just for tonight.  Pull them over my head and hope to keep the ALS demons at bay.

Tomorrow's a new day.

Some days it's hard to get up.

Things I miss. Things I used to take for granted. Things I try harder to keep in my life that I used to take for granted, so I don't miss them anymore...

I started making a list of things I miss but that was too sad.  One is having the option to sleep in the same bed as my husband.

I just tucked him in.  He has a hospital (twin) bed that continuously moves; I guess once he's in bed most of the time, this prevents sores.

We live in a 3 level townhome right now and he's in the basement.  That's his 500 square foot world.

Our room was up on the very top but now, we never use that.  I sleep on the couch on the middle level so I can hear him.

Truthfully, I slept on the couch a lot when we were able to sleep together.  I don't have the option to join him anymore unless it's a quick snuggle.  Maneuvering in a twin bed is tricky.

He goes to bed really late.  Before, he used to be able to get in to bed by himself.  Now, I have to pull up the covers.  If the covers come off him, he can't get them back up.  :(  

Luther can't reach out and touch me anymore.  No hugs.  No holding hands.  We don't have a couch or loveseat downstairs so we don't sit together.  He's in his chair, I'm in mine.  Edith and Archie-like.

At times, I actually have to remind myself to touch Luther.  Think about it.  Your day flies by and have you made any human contact??  Hugged your kid?  Held hands with your partner?  Simply reached out and touched someone's arm as you talked?

What if, one day, the person you are in love with couldn't touch you anymore?   Would you regret not being more affectionate?

So I've been stepping up my display of affection game, which is actually a little difficult.  I hang out with a group of friends who love to hug.  I am not a hugger.  Well, wasn't a hugger.  At least now, I don't stand, arms stick straight at my side while someone attempts to hug me.  I've gotten a little more gumby like, more flexible and actually do a 1/2 hug back.

With Luther, I have to lift him up out of his chair every so often and I like wrapping my arms around him, giving him a bear hug.  It's hard sometimes to lift him up.  But once we're both up, I take that extra time to lean in to him, just be with him for a minute. Sometimes I take his arms - heavy and awkward - and put them over my shoulders so he can hug me back.

Usually when I brush his teeth, it's pretty utilitarian.  Get 'r done.  Brushing someone's teeth is a pretty intimate act.  I don't particularly like to do it and I'm guessing he doesn't either.  More and more though, I remind myself to slow down, rub his arms, give him a smooch.

It's those things you take for granted when you have them.  Like always making sure we slept in the same bed together, which I didn't always want to do when we could because I was too hot or he snored or I got jimmy legs.

I miss the snuggle.  Touching toes in the middle of the night to make sure he's there.  The little things that keep you connected.