Tuesday, April 28, 2015


Two a.m.  Can't sleep.  We're in Tennessee,  on the way home.  I feel really alone.  I know I'm not.  Love and support are a phone call away. Plus Luther.  :)  
I guess I should say I feel like a lone driver.

This drive home is taking a lot out of us. I pack,  unpack, drive drive drive.  I've been really bitchy.  I get the most aggravated when it's windy and I have to light Luther's cigarette.   Isn't that the dumbest thing? 

We're visiting Luther's son.   I know Luther wanted to spend more time with him.  He even had a vision they'd spend some time at the gun range.  

I was surprised to hear he thought he'd be able to shoot.   He can't lift his arms or hold my hand.   Shoot a gun??

I'm realizing Luther's brain hasn't caught up with the fact his body doesn't work.  
Take Disney world for example.   He wanted to go for 5 days.  At the last minute he changed reservation to 3 days but still wanted to get to all the theme parks.  He figured we'd get to two parks a day.  I knew there was no way but tried to put it on me.  That I didn't love parks as much as him.

How can I say YOU CANT DO IT!?
After the first park, he slept most of the next day.   He figured it out.
I love LOVE Luther's optimism.   He's amazing.  He's my perfect match, off-setting my glass - half - empty world view.

I hate HATE this disease is chipping away at the core of who he is.  He's lost so much weight.   Is he losing his spirit too?  I'm guessing it's this drive home.  It's a grind.   I'm not much of a cheerleader but I'm giving it my best.  It's my turn to be optimistic,  let him rest for a while...

Sunday, April 26, 2015

Who is this ALS person and why don't you like him?

At Disney world a few days ago.   A man stops us and says,  "Who is this Als?"

Not A L S but the plural of the name Al.  Like the guy who owned the diner on Happy Days or everyone's favorite climate change guy Al Gore.

We were busy eating an elephant ear so we didn't really get it.  Plus he was German so it came out a little spooky, as if we were being interrogated.  Imagine Laurence Olivier in The Marathon Man:  "is it safe?"   became "who is Als?"

Actually,  he was a pleasant looking man wearing a pretty cool cap so we weren't too concerned!  We could've used the powdered sugar on our elephant ear as a distraction and run if it was remotely Marathon Man-like. 

Sidebar:   Put it on your list of movies to see if you haven't.  I was going to post a clip of the infamous dentist drilling "is it safe" scene but found it too disturbing out of context.  Still...see the movie Marathon Man if you can.

"Who is this Als?"  He pointed to the sticker on the back of Luther's wheelchair.

It says ALS SUCKS in big letters.  Under it is Let's find a cure for Lou Gehrigs disease.

I told him it's a disease and that's why Luther is in a wheelchair.

What is the disease?  he asked.   I said do you remember everyone who put the ice bucket water over their heads last year?  Oh yes, yes, he remembered.   He said he was sorry and glad to see Luther was having fun in Disney.

He laughed and said he thought Als was a politician and wanted to know why we didn't like him.

I'm thinking about getting a new sticker.

Sunday, April 19, 2015

Skinny Luther

11 pm Sunday night.  One last day here and we head home Tuesday.   Via Disney world,  northern Florida,  Georgia then Tennessee.   It will take us about 8 days to get home.

Luther's lost about 12-13 pounds since he's been here.  Not a good thing.  We have a clinic on May 18.  It will be good to see where he's at with all this. 

To me, he's great!  Still eating, talking, walking just a bit.  I haven't seen big changes and that makes me happy.

I attached a map of where we've been living.  You can see how close we are to the Gulf.  To the north you see Beach road. To the south Little Gasparilla Island.  Both about 15-20 minutes away.  Beautiful!  

It's been an amazing 3 months.  Luther and I have grown closer.   We've enjoyed spending time with my parents.  

Most important,  we are heading home with a sense of connection.   Of how special our time together is. 

We need to make time for each other, time for friends and family.   Life is truly far too short to stay frustrated or angry or stuck. 

Time for bed.  Lots to do tomorrow.

Sunday, April 12, 2015

Dream world comes to an end

I haven't posted much lately.  Some of it is because being busy.  Some of it because I have to actually form a thought and write something.  Which would take effort.

I lie in bed at night and my brain zings around, filled with a zillion worries, thoughts, lists.

Morning comes, we sleep late, the sun eternally shines and worries, lists, and frankly any thoughts fly out of my brain. 

This past three months has been a dream world.  My biggest worry is what to make for dinner.   I have had some scares with Luther... the fall when we first got here.  His coughing issues.  

Mostly though this has been the best.  For his health.  For us.  For me.

Having the luxury of this time, of no worries, it's given me this open heart or maybe a lighter space to enjoy being with Luther,  with my parents.

Luther and I have grown closer.  I love him so much.   We've become better friends.  My heart aches for his frailty, for his future.

We leave for home in two weeks.   Life starts back up!  Decisions to be made.  Lots of stuff to do. 

This low key languid really warm life comes to an end soon.  I'm excited in many ways to start the next chapter, to see friends again, to move.  But I'm sad this excellent winter is coming to a close. 
How lucky I am we've had this. 

Thursday, April 2, 2015

Today was a good day.

Nothing eventful.  Warm, a little lazy.  I jumped in pool.  We had a great dinner with mom and dad. 

Just wanted to report that today was a good day.

Wednesday, April 1, 2015

Helpless at 4 am

Luther is sitting in his chair.   He's been there for about 20 minutes.  I'm blogging. This feels wrong.

I was staring at him, huddled over but that seemed wrong too.

I've played 100 questions with him but that was futile.  The best thing is to leave him be.... I think.

He's coughing.  His nose is super stuffed up so he can't breathe through his nose.  The coughing is always an issue in ALS. 

It's because the throat has muscles.  ALS weakens and eventually paralyzes involuntary muscles.  Right now, Luther doesn't swallow as much as you and me.

Spit (mucus) builds up on the back of his throat causing him to cough. 

He'll cough a ton after eating.  Doctors say it's because food gets trapped in wrong place.

Anyways,  at night, when you lie down, all that spit mucussy (?) gunk builds up more and his nose gets really stuffed up.

Every night he wakes up and coughs a little.   We got Benadryl and that seemed to help.  But tonight, not so much.

It's really hard to sit here and do nothing.  It sounds like he's choking.   I'll rephrase.   He is choking.  

I gave him another Benadryl.   It's been 10 minutes...it seems to be working. 

This has been the longest cough/choke episode so far.   I hate this.