Tuesday, April 15, 2014

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.

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