Numbers don't lie

We had "clinic" today.  5 hours of doctor visits in one day.  We'll have this every 3 months as a way to measure where he's at with ALS.

Weight Loss

50 lbs lost in a year.  15% of his body weight gone.  15 lbs in the last 3 months.
If he continues to lose weight at this rate, his life expectancy is shorter.  
Conversely, if he can maintain his current weight, he will add at least 16 months to his life.  

He's getting a feeding tube in the next two weeks.  The tube is put in to his stomach with a piece sticking out of his body.  For almost two months, about six inches of rubber tube will dangle from his stomach.  After that, they will replace that tube with a smaller piece that will be more flush against his skin.

A large syringe filled with nutrients is pushed in to this tube.

Right now, this will not replace his regular meals.  This is in addition to it.  He needs to eat as much as possible of anything and everything.  I asked about 'good' calories vs. 'bad' and the dietitian said there is no good and bad -- eat anything and everything.


Muscle Loss

Grip strength of an average healthy person: 89.
Grip strength 3 months ago: 13. 
Grip strength today:  2.  

Enough said.  Luther's arms don't work anymore and now his hands can't grip.

I get sadder as I type this.  I will say his arms work well enough to hug me.


Swallowing Loss

ALS starts in two ways:  Bulbar and Limb

People with bulbar onset ALS generally live 18 mos - 3 years from prognosis
25% of people with ALS have bulbar onset.

 Bulbar affects your speech, swallowing, eating

People with limb onset ALS live 2 - 5 years from prognosis
75% of people with ALS have limb onset.

Limb affects, well... your limbs.  Arms, legs get weaker and weaker until you can no longer walk or eventually, move.

 Luther's ALS has started in his limbs.  I was always a little relieved it started in his limbs because it felt like we had more time.  Maybe he does.  But I had this sense of comfort - or maybe consolation?  Limb onset wouldn't progress as quickly.

Today, we learned it's affecting his swallowing.  He coughs and chokes after eating, to the point he loses his breath.  Bulbar onset has started.

The good news is it has not affected his speech or his breathing.  Just swallowing.

Part of the deal with ALS is eventually, you can't eat solid food.  This is a baby step in that process.  He can still eat whatever (anything and everything, remember!?) he wants but has to include lots of gooey, slippery stuff:  butter, ketchup, gravy. Food lube, I guess.

Today was a long day.  A kick in the head day.

We didn't expect the food tube. The stark numbers regarding weight and grip loss. The admission that bulbar onset has creeped in.

Each day is another loss.  A day closer to losing Luther.

I usually never think this way.

Every single day I think how lucky I am to have in my life.  How much he's shown me how to love and feel love.




But today, I didn't think that. Today, I remembered Luther is dying and it made me sad and angry and bummed.

It's ok.  It's going to be ok.  And tomorrow will be another day to be together.

Clinic

Tomorrow we go to what's called a "clinic."  It's scheduled every 3 months and it's the big one!  We see everyone from the dietitian to the speech therapist to the social worker and a few more in between.

At the first clinic, my parents attended.  4 sets of ears are better than 2, they said.  At times, I felt awkward for Luther; he was being poked and prodded in front of 3 sets of eyes.  Mostly though, it was great to have them with us for the support.

This will be our third clinic at the VA.  I have a list of questions:  can they put him on some kind of sleep medication?  his bony butt gives him no peace when he tries to sleep.  any pain meds yet?  his coughing is non-stop and to the point he gasps like a fish out of water -- what can we do for that?  when is the hospital bed coming?  Has he lost more weight?

Tomorrow will be an interesting day.

The space between bucket lists and everyday life

Waiting to get oil changed.  Mundane weekend things.  It's a weird place, at times, to be... well, wait.  Not the oil change place!  But this space in my head.  My guy is dying and I'm hanging out in the oil change place.

How do you "live each day like it's his last" or "dream as if you'll live forever, live as if you'll die today" when you have to get the oil changed?

Life marches on, doesn't it?  At times, I get bogged down with the weight of it all:  death, coping, working, oil changes.  Mostly though, both Luther and I just go with the flow of each day.  

We don't dance as if no one is looking or sing as if no one's listening.  I still have to do laundry, he has forms to fill out, we (try) to figure out what's next and then usually end up watching tv.

I operate these days with more intent.  Remember the whole "be present" trend?  Oprah stuff. Buddha-isms:  Do not dwell in the past, do not dream of the future, concentrate the mind in the present moment.  

This means I try to be deliberate with what I say, with how I am around Luther.  So often, I find myself reacting to a situation - I'm tired and I don't want to get him undressed and pull up the covers or whatever it is I'm asked to do because he can't do it.  

We all have that five second rule when food drops on the ground... we'll eat that mcnugget that fell on the floor if we pick it up within five seconds, right?  We all should apply that to the words that come out of our mouth.  Wait five seconds before you reply.  In my case, I have to wait five seconds before I decide to roll my eyes, too.  I have a horrible poker face.  Like taking 10 minutes once a week to help him fill his pill thing-a-ma-jig is such a chore.  Sometimes it feels like it is.  But I just say sure and roll my eyes internally...

Time is a funny thing, isn't it?  

Things done out of love

Luther received a quilt yesterday.  It was from this organization:

http://hopesanddreams.quiltersdreambatting.com/letter.html

Created by a mom who's son has ALS, it's a way to raise awareness about ALS.   I was contacted by Jennifer, the coordinator for Hopes and Dreams Quilting Challenge, via this blog, asking if Luther would like a quilt -- no strings attached!  How awesome is that?

I said yes, we'd love a quilt since Luther is always, always cold.  We received it on his birthday - isn't that cool!?   And it's beautiful.  Manly beautiful!!

<------- the cat on the quilt

I posted the link above hoping those of you who read my blog might take the time to read the organizer's (Kathy Thompson) story and if inclined, donate to this organization.

It makes me cry - in a good way - that people reach out to offer hugs, prayers, thoughts, time, food, quilts - just because.  It's heartwarming and comforting.  Even knowing people read this blog just to keep up with what's happening in our lives makes me feel good.

For those of you who do read all of this self-involved, angst filled, therapeutic blog, you might remember I wrote about an angel named Claire May I met at work.  She was an older woman who asked if she could pray for Luther at her church.  I received a call from her yesterday - I'm at a new store, not the store where she met me - she took the time to track me down and call me at the new store.  She wanted Luther's full name and address because she wanted to send him a note of encouragement.

So I got the call from Claire May and we received the quilt yesterday, on Luther's birthday. It was a lovely day.

Twitching

Think of ants crawling under your skin.  Or when you're really tired and your eye twitches.  That is what happens to Luther every day.

It's called F-A-S-C-I-C-U-L-A-T-I-O-N.

The nerves in your muscles lose their connection from the muscle and create a distress signal for another nerve to come rescue it.  This is the twitching.  You don't notice it at first until the muscles continue weakening.  The distress signal - the twitch - continues more and more aggressively until the muscles get so weak they stop working at all and the twitching stops.

It's like a double edged sword.   The twitching isn't painful, just annoying.  But once the twitching stops, it means the muscle is pretty much gone and you won't be able to move anymore.

At times, I can see the twitch.  Like shooting stars, you see his skin jump randomly.  Even though the twitching is rhythmic under his skin, it doesn't appear that way.  It's a twitch here, a twitch there.

If I'm touching his arm or his leg, you can feel the ants crawling.  It's an odd sensation for me, I can only imagine how odd it feels for him.

I don't want the twitching to stop, though.

Back to real life

Well, we're back.  Almost a week in Florida with my mom and dad.

My brother bought a retirement home in Florida with his awesomely nice girlfriend, Noreen.  It amazes me my brother bought a retirement home in Florida and he's not retired.  We tease him about not mailing Christmas cards in order to save the postage (he gives them to us on Christmas)... I guess the savings on all those stamps added up.

It was a wonderful week.  It was the coldest week they've had in Florida all winter but still in the high 70's. It rained a lot, too.  But we still wore flip flips all week.  No snow!  NO SNOW!

My parents are the best.  They got Luther all the invalid equipment he might need:  a wheelchair, a toilet seat riser, a shower chair.  They worried about what to feed him,  which car to pick him up in.  They gave us space, they carted us around, they fed us and put up with us.

The warmth did Luther a world of good.  It's like it warmed his bones, his muscles.  If you asked me two weeks ago how he was doing, I'd say awful.  He could barely get up.  If you asked me last week how he was doing, I'd tell you he was going to live with me forever.

I think a lot of it was the one level living, too.  We live in a 3 level townhome and it's a drag for me -- a healthy person - to lug myself up and down those stairs.  Sometimes laundry doesn't get done in a timely way... it's daunting, at times, to carry those baskets down two flights of stairs.  So I imagine for Luther it's tiring to lug himself up and down those stairs.

In Florida, we stepped outside the kitchen and there's the pool, under the screen, overlooking a canal with palm trees, big Florida looking birds, fish jumping and lizards skimming.  How can you not feel better hanging out in flip flops by the pool after being snowed under in a three level townhome?

Luther had tons of energy.  So much so that we talked of moving to someplace warm.  It was that dramatic of a switch.  I doubt we will.  Our support system of friends, family, the VA is here.  But we had these moments of thinking we'd fling our winter boots away along with our fear and anxiety and head someplace warm where the warmth itself seemed like a cure.

We're back, it's chilly, rainy.  I worked today.  We're back.  The chill is back in his bones, his muscles.  It was a joy to have this illness put on hold for almost a week.

On vacation!

We are in Florida with my mom and dad.  Luther has had lots of energy which is great to see!  More later...