Wednesday, May 4, 2016

Luther update: Learning the one thing we can control with ALS is how you die.

It's been six months since we've been to a clinic at the VA.  We had one yesterday.  A clinic is where all the doctors/specialists/therapists see us in one day.  One stop shopping.

Sometimes too much infois shocking.  It used to put me in overdrive.  A panic.  Even despair.  Now, when a change occurs, I feel battle-tested.  Ha!  Maybe battle-worn.

His numbers weren't good.  They measure 3 things:

1.  Weight
2.  Lung capacity
3.  Cough strength


is down to 166.  When I met him he was at 225.  Prior to meeting him, he was at 260.

Losing weight in ALS is NOT a good thing.  You die faster if you lose a lot of weight.  Enough said.


When Luther first entered the VA, his breathing / lung capacity was at 87%.  Now, it's at 53%.  He doesn't use anything to help breathe.  We do own a bi-pap but he hasn't used it.  I don't notice that he's short of breath but his breathing might be more shallow.  It's like having a yawn isn't satisfying because he can't take that deep breath.

If this number gets under 50, he should be using a breathing assist machine several hours a day.  This is not a trache/vent like you see Steven Hawking use.

Luther's decided not to be vented.  It's a big decision.

Selfishly, I'd like him to be around for a long, long time.   Without the vent, most ALS people die within that 2-5 year range.  Luther's coming up to year 3 this November.

I asked him to consider having that hole put in his neck and be hooked up to a ventilator that would breathe for him.  I want him with me!

Ultimately, I respect his decision NOT to have a tracheotomy.  At that point, he'd be totally eating through his feeding tube, not talking.  His breathing would totally be dependent on a machine.

Even as low as 53%, he seems like he's breathing ok.  Not shallow, not panting, doesn't feel air hunger.  The specialist said he will see the change as he gets under 50%.


So the  coughing thing is important because he needs to get that gunky stuff out of his lungs.  A healthy cough has a 500 rating.  Last clinic, it was at 227.  This clinic his cough strength is at 150. His diaghram has gotten really really weak.

This means he needs help coughing.  We have this machine that's a monster.  It weighs a million pounds, there's this vacuum-like tube hooked up to to a face mask.

You put the mask over your nose and mouth and it reminds me of having an octopus smashed on to your face, using those tentacles to suck breath out of you.  Luther hates this machine and won't use it.  My sense is he will soon enough.

Listening to Luther cough is frustrating.  His cough is soooo weak.  I want to smack him on the back to help him get it out.  If he doesn't get this gunk out of his throat, it can leak down in to his lungs and create an infection, pneumonia or choking.

<------ You decide!  Is the face mask just as claustrophobic as an octopus on your face!?

The speech therapist said a provocative thing:  that we can control how Luther dies.

In ALS there is no control.  None.

You have no choice that your hands no longer work, that someone else has to wipe your butt, that you can't get up and grab something to eat when you want.
 I've seen people fight that idea.  They do not want to give up driving, walking, working.  There's a gentleman in one of the groups I belong to who gets up each day to walk.  He should not be walking.  But in his mind, that's giving up.  He's broken ribs, ankles, a foot.

In my mind, acceptance isn't the same as giving up.  Acceptance means you can move on, enjoy your life, stop being consumed with slaying the ALS dragon and enjoy a steak or take a vacation.

So when the speech therapist said this, it was a little shocking.  You dance around the assisted suicide / right to die issues.  His example was Luther has a feeding tube.  This will extend his life.  Many many people choose not to get a feeding tube.  This will shorten their lives.  Luther does not use his cough assist or bi-pap.  These choices will shorten his life.  When it was put in that context, Luther realized that shrugging off doing some of the therapy was a choice that led to big consequences.

This idea of controlling death, of fighting a good fight, of how we choose to live with ALS - I think that's a whole 'nother conversation.

In the mean time, we'll just keep moving ahead.  What else should we do?  I'm familiar with the stuck place.  At times, I feel just as paralyzed as Luther.  The mental tiredness is heavy.

Today, I had a dentist appointment.  I almost fell asleep even as he was drilling.  You know how you jolt your body out of a light nap?  It shook me awake and the dentist thought he hit a nerve.

Nope  I was happily drifting off to some nap space because I was lying back in the middle of the day with no worry surrounding Luther.  It secretly felt pretty good.

Now that we're back in Minnesota, Luther is eating better.  He's chatting with me, helping me be better organized.  I like that.  It's like we're back to being a pair.  Partnered.

It's time to have a fun summer.

1 comment:

  1. Lynn, I admire you and Ed for being upfront with all the very difficult issues that you are facing and your support for Ed's courageous decisions on his treatment options. My heart goes out to you both and please know that you both remain in my thoughts.