Sunday, August 31, 2014

Changes in latitude, changes in attitude

New blog look, new blog mission!  It started as a way to get the funk, the fear, the unknown out of my head and in to the world.  9 months later and things have shifted a little.  A lot.

I'm still scared, I still freak out.  That's a given.  I'm still chicken little, thinking the sky will eventually fall.  My rose colored glasses are slightly cracked.

My tendency to overanalyze, look at every possible awful outcome serves me well at work where I can skirt around the worst and end up with the best.  In life, though, this drags me down.  I get stuck in the muck of "what if?"

Luther is my cool cat.  I've said it before, he sits back and lets me do my thing, run around, worry, ask a zillion questions - which he answers.   He tells me not to worry.  I still do.  And finally, all weary from the worry, I come back to him and all is well.

I'm going to stop so much of the unnecessary running.  Time is valuable.  I want to be still, with Luther.  He can't put his arms around me anymore. But I can lift them up, adjust them around me so I can feel safe in his arms.

Jimmy buffet attitude:   

Friday, August 29, 2014

Shake it off, shake it off (updated)

You know how little kids fall down, scrape a knee and dad comes in with a hug and says, it's ok - shake it off? The kid is near tears, he knows his knee hurts.  No tears - shake it off!  You'll be ok.  It's no big deal.

I can't stop crying.  Generally tears are frowned upon, aren't they?  Shake it off.

I was typing out all the reasons why I came to this point but it doesn't really matter.  It's just a moment.

I'm going with this feeling.  Ride it out.  I'm at home, tucked away.  I'll shake it off a little later.


Next morning.  Feeling better.

What a roller coaster!!  Up, down, loopy, rightside up then upside down.  Man.  It's easy to try to close off feelings in order NOT to feel and walk through each day in a somewhat straight line.

Balance.  We're always trying to achieve balance in our lives, right?  That fine line between work, family, friends, how to do it all / have it all and be happy all the while de-cluttering your closets and making meals in less than 30 minutes.

I'm in therapy, learning to embrace the idea ALL feelings are not only valid but good to experience. Tuck away your feelings for too long and you end up eating a box of Lucky Charms for dinner.

My melt-down yesterday occurred at work.  When it comes down to it, I was lucky I got to leave.  I got to come home to Luther who is so patient and kind.

A new day.  We're going to the fair.  A pronto pup makes everything seem better.

Thursday, August 21, 2014

Everything is different

Can't sleep.  Midnight.  My cat is snoring next to me.  My guy is downstairs, I hear him coughing. Probably not asleep.

It's hard to sleep at times.  For both of us, I guess.

Too many thoughts so I try to stay distracted.  My house is never quiet.  Always music, the tv - something to occupy my head.

I remember when we were going through the testing (it was about 6 months of wondering/testing) and ALS was on the table.  When we realized - we really truly realized this could be a terminal illness, we went to this bar and sat in a booth until one in the morning, talking, crying.

Now - ten months later, that feeling of scariness, of hopelessness isn't as cutting or as prevalent.  We try to live our life in the most normal way possible.  You don't really have a choice.

Luther is all tilty now.  He can't sit up straight.  It wasn't noticeable at first but he's super tilty.  We'll be sitting downstairs, watching tv and suddenly, he's all slouched over like a little rag doll.  He doesn't even notice. His neck is all floppy.

I try to figure out how to lead a good life.  Something meaningful for Luther.   It doesn't always work... sometimes it's all I can do to pick up fast food after work, spend a few hours with Luther and then go to bed.

In some ways, life should be simple, right?   This prevailing idea that we need to just live life the best we can should be our guiding force.  At least mine.  How do I make Luther happy today?

Life seems the same and yet, it's all so very very different.  It's a weird feeling.  I get up, go to work, the usual.  But it's not usual.   I'm not sure I can even explain it.  This underlying nervousness, tiredness, this weight of his illness is lurking around right under the surface.  It clouds and colors everything.  Sometimes I stick my head in the sand so I can't feel, can't think.  Other times I'm hyper aware, viligant AND diligent!!

I'm just rambling.  It's good to get it out of my head but it's all so circular.  I started writing this post thinking about how everything feels so different - brushing teeth, getting dressed, eating, making weekend plans, walking.  All those things we take for granted.  The things we don't give a second thought to doing.  All of that takes a ton of thought.

I should get to bed.

Wednesday, August 20, 2014

When - from Luther


My mind had really been wandering lately and I'm not sure why. It could be the vital explosion of the ALS ice bucket challenge. You can't look at Facebook without seeing someone taking the challenge and raising awareness for this awful disease. I'll admit that before I was diagnosed I didn't know anything about the disease except that it existed. I know more now than I really want to but such is life.

These are some of the thoughts that have been weaving there way in and out of my brain the last couple of weeks.

When will I no longer be able to feed myself it is getting harder and harder to lift my hand to my mouth. We went to dinner tonight and I could barely reach into the basket to get a chip and dip it in the salsa. I've got the feeding tube in already but I'll miss the taste of food.

When will my legs quit working. I can still maneuver around my living area, get in and out of bed and take myself to the bathroom (thank goodness for the bidet). The time is coming when someone will have to put me in bed, get me out of bed and take me to the bathroom. This brings up the question of when do you start wearing diapers, I really don't even want to think about this. It also means that someone will decide when I go to bed and when I get up.

When will I no longer be able to hold my head up. I find myself sitting in my recliner and will be tilted to one side or the other without me even realizing it had happened.

When will I no longer be able to talk. My voice is good now but I know it will go. Should Lynn and I develop our own language. I have a vision of sounding like a wooky, imagine taking without moving your tongue.

When will I stop breathing. I've pretty sure that I don't want to be vented but never say never. I think the toll that having to maintain the vent would be significant.

When will I die. I think I've got time left right now but there is nothing typical with this disease. Any of my whens could happen tomorrow, next week, next month or next year. I just know they are coming but I don't when or in which order.

I've accepted the fact that I'm going to die much sooner than I'd ever thought about.

I'm not going to sit and wait for when. I know it's coming but it didn't make an appointment so it will just have to catch up with me. 

Monday, August 18, 2014

We took the ice bucket challenge!!

When the ice bucket challenge started about a month ago, I was pretty skeptical.  How does pouring a bucket of ice water over your head raise awareness as well as money for a charity?

Now, it's pretty amazing how this has taken off.

Prior to this, there hasn't been a lot of info about ALS.  It's a mysterious disease.  People who get it don't live long.  So all of this hoopla is good stuff!

Here is a good article on how this all got started:

Tuesday, August 12, 2014

Walk for ALS

For those of you who aren't my Facebook friends (who are now in the process of being inundated with my pleas for donations!!) - I'm bringing the call for help here!!

On Saturday, Sept 20, we are walking (and rolling) in the Walk for ALS.  We'd love it if you'd join the team and walk with us!

If you can't walk, please consider donating something.

Here are a few things you should know about ALS:

** ALS allows your mind to remain vibrant but systematically takes away every other part of your bodily functions, so it's literally like being buried alive.

** More than 30,000 people live with the disease each day with no real hope for a cure.

** ALS kills motor neurons, the messengers between the brain and the rest of your body, so once it attacks there is no going back.

** In the 75 years since Lou Gehrig was first diagnosed with this disease, only one drug has been made available to slow down the disease --- or two to three months.   No cure is on the horizion.  
Doctors and scientists are honing on promising therapies like gene silencing and STEM cell. Yet, they desparately need more funding.

If you can find a way to donate - whether it's 10 bucks or 50 or more, we appreciate the donation.  Here is the link that will take you to our page for the walk:

I will also say that if any of you has an hour a week and wants to come hang out with Luther, I'd love it.  I know he would too.

We have home health care three times a week - M-W-F from 10 - 1 but he doesn't really like her.  It's great to have someone here to clean a little and help feed him.   Having some company with folks he enjoys would be a blessing.

I'm now working only 4 days a week so that extra day off has been great!!  My parents and my sister and her family live close and they've been awesome in helping out.  But we have a lot of hours in between that he's stuck inside.

He's tired a lot, he can't really go outside for a walk... but having some company just to watch tv or chat or ??? we thought play Scrabble or something but his arms / hands aren't so good for playing games.

We don't have the details figure out yet:  i.e, could someone take our van with the wheelchair to go to Silver Lake park and have lunch and a walk?  Or just a spin in the chair around the neighborhood?  

Let me know!  Thanks for your time, your donations, your thoughts and prayers.

Monday, August 11, 2014

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.

Tuesday, August 5, 2014

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.

Saturday, August 2, 2014

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