The value of sitting still

Not much is going on.  I don't write stuff when life is kind of lazy and quiet.  I think it's because it feels like there's nothing in my head.

Which is totally not true.  I get a little restless when things are too quiet.  These days, I always have my nose in the phone or the tv on or am on the computer.

It's like I can't have a quiet moment. I need to occupy my brain every single second.  If left alone with my thoughts for too long, all that stuff starts:  when will Ed die?  what will it be like if/when he can't move?  what will I do for a job?  am I going through menopause?

Life is so weird right now.  We have these long stretches of time, just hanging out.  I was trying to line things up for Ed to do.  He told me to stop.  More and more I realize my expectations of what life "should" look like are forever altered.  I always think we should be doing something.  Anything.  Taking a walk.  Seeing a sight.  Heading someplace.

Ed doesn't really want to do anything.  It's too hard.  He's content being at home, watching tv, getting on to his computer, talking with me. He enjoys his comfort.

I'm realizing the value of just being here with him.  Slowing down.  I'm guessing I'll never have this kind of time on my hands again.

Once I accepted that life looks different and it's ok just to hang out with my husband, I then had to convince friends and family he isn't wasting away in the basement of my parent's home. Most of us are in the "ing" mode.  A verb state, I guess.  Doing, walking, reading, swimming, traveling...  we can't sit and just be.  I feel guilty or lazy or unproductive if I'm not in motion.

It's odd how quickly my brain shifts to the negative

These days, though, I'm getting used to this pace.  Naturally, those demons in my brain wonder what the heck I'll do when I'm required to re-enter the real world.  But I push those thoughts aside.  This is my real world right now.  I'm learning to appreciate this time without those demons screaming out the "shoulds" - you should be reading more!  you should be cleaning the closet!  you should get to the gym!

I'm finally making the shift to realizing this slow time is good.  It allows us to just enjoy each other. How great is that?

Yay for technology!

Happy news from the speech therapist - he said it in sort of a casual way - he told Ed he's slow progressing.  I'd never really considered it in that context.  But he still has his speech, he still eats normally.  As Ed put it - he's not dead... We'll take it!! :)  :)

We were at the VA yesterday getting hooked up with new technology when the speech guy said it.  They were trying to figure out future computer use:  would his voice go first or his neck muscles?  

Ed uses Dragon Speech on the computer - he has no hands to use a mouse.  It's daunting and amazing to watch.  He hollers at the computer:  MOUSE GRID.  8 quadrants come up across the entire screen and he'll say the number the corresponds to where he wants the mouse to go.  It sounds like a football game:  8 7 7 mouseclick!

Now, his voice is getting tired after an hour or so of this.  So we're getting this camera that follows a dot/sensor put on either a baseball hat or glasses.  It will follow Ed's head movement and the cursor goes where his head goes.  Pretty cool.

He's also getting his wheelchair rigged up to the tv, the lights and the fireplace.  Happy happy for both of us -- independence for him so he can use his head to change the channel, turn up the volume, turn on the lights or the fireplace.  A small return to wife status for me vs. robot ordered to change the channel every half hour.  Yay for both of us!  Yay for technology!  Super yay for slow progression!

May is ALS Awareness month.  The picture above is my niece, Molly, spreading the word about ALS.

 

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

WEIGHT

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.

LUNG CAPACITY

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%.

COUGHING

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.