From Luther

I'm slipping into a deep dark funk and just need to express how I feel.

I have ALS and I'm dying. The typical prognosis is 2 to 5 years from diagnosis and I'm approaching my one year anniversary so I'm down to 1 to 4 years left.

That sounds like a prison sentence and in many ways it is since I'm confined to a body that doesn't work. I've just about lost use of my arms and my legs are starting to go.

They say that you typically don't have pain but I've come to know there is nothing typical with this disease.

My shoulders hurt every morning from laying on the during the night and my right leg is in constant pain.

I thought retirement was going to be a wonderful time filled with fishing, hunting, golf and travel. I can't leave the house unless someone takes me and I couldn't swing a golf club, cast a fishing rod or hold a gun if my life depended on it.

So my retirement is sitting in the house watching television with an occasional trip out.

I have so much time on my hands with nothing to do and the inability to do anything with my hands.

Thank God I'm not alone on this journey into Hell.

Rainy days and Mondays...

It's Monday morning - 8/11/14.  9:30 a.m.

Luther's asleep downstairs.  I have the day off.  It's rainy and dark out.  Wondering how we're going to wander around in the rain with his wheelchair?  We have stuff to do!  We learned you can rig up a camera to his chair.  Maybe an umbrella, too?

I had the weekend off, too.  The things you learn when you spend time together...

Luther doesn't wash his hands.  He can't.  It never occurred to me.  We were at lunch yesterday and some stuff spilled on his hands.  As I was wiping them off, I noticed a weird color on his right hand.  It's from smoking (ok, yup, that's a whole 'nother discussion.  He still - albeit awkardly - smokes).  I asked him why I've never noticed this before and he said he used to be able to wash his hands.

Ummmm, what?

It's these things that are like a knife through my heart.  Just a quick jab, mind you.  Once I feel that little slice, I go to plan B - let's make it happen!!  Let's wash your hands, for god's sake.

Apparently, Luther and I still have some communication issues!  All I need is a "hey, can we wash my hands?"   Easy peasy.

We had a weird bathroom moment too.  I suppose this might be TMI (too much info) but it really wasn't that gory.  It was our first time out in a power wheelchair that we had to face this issue.

We were eating lunch outside so I had no idea what navigation inside the restaurant was like.  I figured I'd just ask. Fortunately, this restaurant - Washington Square Grill in White Bear - actually has a unisex bathroom that was wheelchair accessible.  Yay for us!

There is nothing that brings a couple closer more than having to use the bathroom together.

I'm not even going to bring up the q-tip, ear cleaning incident. Let's just say he figured out a way to do that himself for now. I can deal with only so many bodily fluids at a time.

The picture above was in the bathroom.  You can find advice in the strangest places.

It also made me think about having a resource for wheelchair places out.   I've googled this a couple times and it seems like there isn't anything in one spot that gives us a quick guide to great places to go in a wheelchair.

Most places we've been have been wonderful about making accomodations.  As a matter of fact, Luther is like Moses parting the Red Sea when we go out - people really ARE Minnesota nice.

When we were out with the manual chair, people came to my rescue many times, helping to open doors or pick up the wheelchair and help put it in the car.  Now in the power wheelchair, we've received awesome assistance at several places:  Target Field, the Dakota, and now Washington Square (yup, we're going out a lot -- that bucket list stuff!)  We're always second guessing parking, seating, and now bathrooms when we think about getting out and about.

These are kind of fun obstacles to think about as opposed to remembering to wash his hands or how I'll help him use the bathroom.  It's always a matter of degree, isn't it?  A matter of perspective.  Although it's a rainy, gray day and my guy is fast asleep, I'm so happy to be home with him, content to be right here, right now.

Update on Luther

We had our third "clinic" today.  This is where we meet with everyone in one day:  doctor, a host of therapists:  speech, physical, occupational, dietitian.

So here's the scoop:

It's all pretty dang good in the scheme of things.

There you go!!

Good news #1:  He gained two pounds

In talking with the dietitian - who is giving a lecture on weight gain and ALS at a national symposium next month - he said this is the number one thing Luther can do to live longer. Keep his weight up.  ALS is the only disease where obese people have actually lived longer because of their obesity. Eat eat eat.  Even with Luther's diabetes, the dietitian said don't even worry about that.  Do whatever he needs to do to keep on the weight.

Good news #2:  Swallowing/talking are all in good shape

ALS affects people in two ways:  limb and bulbar.  Limb onset is what Luther has:  he's losing his mobility and is now in a wheelchair the majority of the time.  He can't dress himself.  I brush his teeth, wash his face. It's become extremely difficult to feed himself.  He has no upper body strength.  If you saw him naked, he looks like a concentration camp person.  All skin and bones.  No muscles.  It's painful for him to sit - no fat on his butt!

All of this being said, he doesn't have much bulbar onset yet.  Bulbar is when your swallowing, your tongue, your speech and finally your breathing is affected.  He has some minor issues but these issues haven't declined over the last 3 months.

At some point, the limb and the bulbar stuff meet up and the bulbar stuff is what makes you die.  You stop talking, you stop swallowing, you stop eating, you could choke, eventually you stop breathing.  Some people choose to be "vented" - putting a hole in your windpipe to pass a tube attached to a ventilator, which allows you to breathe.  I am very very happy to report he has some minor issues with swallowing but:  I will say it again!!  The good news is his speech, his swallowing, his breathing have NOT declined in the last 3 months.

Woo woo!!!!

Good news #3:  He found a robot arm to help him eat!

In the past couple weeks, his arm strength has diminished even more.  It's almost impossible to eat on his own.  He's been a pretty cool cucumber about letting me do stuff for him but I think it was the last straw when he thought about not being able to feed himself.  We both realized this was the next step in figuring out... the next step.  How could we leave him alone?

God bless the VA.  Specifically Kristen and Sonya, his physical and occupational therapists.  They came up with this arm thing - it's something they rigged up and once we're done, we have to give it back so they can pass it on to the next ALS person.

While I was thinking this would be kind of cool:

He is getting something that looks like this:

He still has to move his arm up and down - it's not electrical or robotic in that sense.  So at some point, that will be tough.  Or impossible.  But we'll cross that bridge later.  For now, we're both feeling better about his ability to eat on his own. 

So it was a great visit.  We put the arm thing in perspective.  If I have to feed Luther every single day, I'll take that over not being able to talk with him or worrying about his swallowing or breathing.  

Good stuff.

More fun!!

At target field to see Paul McCartney.  Great seats.  Secret entryway for guy in a wheelchair! 

Update to home early

On the way out!! My man with a fanny pack!  We are ready to roll!!  

The second picture is two thumbs up for a manly fanny pack... We found it in his old hunting stuff. Since I got home early, we took advantage of the nice day and got out and about

Home early

Got home from work early - thinking we'd get time to hang out.

Luther's asleep.  All curled up in his bed, in the dark.

It squeezed my heart to think that this is his existence.

Stalled for the night

I want to write something, something that will bring me clarity or comfort or peace.  Get it out of me, vent, release the pressure in my head.

I was going to just let this go and not say anything, not write anything.  Maybe just close my eyes and sleep. Or watch Sharknado.

It's no one thing.  Well, that's not true.  I had a mix-up in dates with some stuff going on this weekend and now, a friend is upset.  We were invited to dinner and I completely forgot about a concert this Saturday.  I don't really want to go to the concert but Luther really really does.  I'm not sure I want to go to dinner either. I'd love nothing more than a day off to myself.  By myself.

I'm forgetting so much.  I'm tired too much of the time.  I've never been super organized but what used to be manageable chaos has now become unmanageable.

I just got an email that my haircut appt has been cancelled.  Isn't it weird this feels like the last straw?  I really need my haircut.

Time for bed.  Enough of this; it's getting me nowhere.