What it's like to have ALS - from someone who has ALS...

The following is from a post from Jay Smith, who started the 90 Foundation, a non-profit raising money for research toward curing ALS.  He was diagnosed with ALS in 2014.

Ask or Deal, the increasingly difficult game show that is now your life.  Living with ALS is different for each person but one thing is for sure, you will constantly be playing this game.

Sure, the first rounds are easy:  do I try and tie my shoes or ask for help?

As the game progresses so does the level of difficulty.  This constant internal battle of what do I ask help with and what do I just deal with might be the hardest part of the disease.  As much as I am trying to paint a picture for those with the disease, it's virtually impossible to understand how consuming this can be for us living with it.

It usually starts with the spouse or partner but eventually involves everyone around your. Your kids, parents, in-laws, friends and caretakers.  In the beginning, it is almost charming.  Your wife cuts your steak.  Your buddy opens your beer.  Your daughter holds your hand up the stairs..

Then the game gets real.  Your husband wipes your ass, your sister holds a tissue up to your mouth during a coughing fit and your dad has to suction snot out of your nose.  This is where the game gets harder.  Friends start to get uncomfortable.  Family doesn't come around as often.  Your spouse gets tired.  Understandably so.  It's not you, it's the disease.  So they say.

The problem is, you are the disease.

Everyone grows tired of your needs but they get to escape.  Even if that means washing the dishes, sipping a cup of coffee or sleeping.  I can see why so many people get divorced, abandoned and give up.  They had no idea that ALS is just one big game of Ask or Deal.

As the game gets harder, you must adapt.  I used to think you could escape ALS when you sleep but that's no longer true.  Ask or Deal is in full effect at bedtime.  Do I ask for the covers to be pulled down now, knowing that in five minutes I might be cold.  Or do I wait five minutes to see if I'm hot?  The latter requires one ask but still requires a possible wake up.

My wife always gets me positioned and says "happy"?  It isn't about being comfortable, it's about being able to deal.

The real question is can you deal with this amount of being uncomfortable?  If I were to get comfortable, you'd be adjusting me all night.  I always want the last thing my wife hears before she falls asleep is "I love you."  More often than not, it's "can you scratch my ear."  I wish it weren't the case, but that's my life.

It's a sad fact that ALS picks type A personalities to play in this game.  It would be like picking couch potatoes to compete in American Ninja Warrior.  In some ways, it a good life lesson, forcing me to be more patient, less neurotic and easier going, but mostly it's just annoying.

I don't spend my time complaining.  I'm happy to be alive.  I would, however, like to pick this booger that has been lingering since Wednesday.  My best piece of advice for someone newly diagnosed is to become the grand champion of Ask or Deal, it's the only way to stay alive.  And when you master it, let the rest of us know how it's done, wouldya?

click this link to get to Every 90 minutes website

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All is well

A few months ago, I was going to do a 30 days of gratitude thing.  List what I was thankful for each day.  I did it for about 3 days and quit.

The exercise is valuable, for sure. I tend to be a a glass half empty kind of a gal.  I look at the what-if's, the should haves.  I worry about things I can't control.

I wondered why this exercise only last 3 days?? Lazy?  Busy? Ungrateful?

Maybe.  I don't always think about this blog every day.  I tend to come here when I'm frustrated, sad... when I need to sort out the negative emotional stuff.  It helps to get it out of my head.

I realize this leads to a blog full 'o whining.  A blog chock full of negativity.  I want people to know life is a-ok!!  Our life is quiet, slow, we're together all the time.  We're with family, we have a good support system.  But yeah -- it's hard to wrap my head around the idea my husband is sick.  It's hard to be grateful and cheerful sometimes.

I thought the act of writing down each day would hold me accountable for feeling more thankful. Instead, it felt a little manufactured.

Not that I couldn't find a reason to be grateful. Instead,  the motive felt like I needed let the world know (or the world who stops by this blog) I have a happy bone in my body.

Being grateful can't be forced.  I can turn my frown upside down all day long but if I can't find a reason to really truly smile, I better go back under the covers and start over.

Luther's my hero.  He's my happy place.  He's why I really truly smile.  It sucks he has ALS but I am lucky he's in my life.  I'm a better person for it.  All will be well.  All is well.

Waiting for my real life to begin...

We're in Florida.  Been here two weeks today.  Settling in was weirdly difficult.  At home, we have our routine, our equipment - a hospital bed, the lift chair, a roll over the toilet chair...   So it's finding our groove, how to poop over a low toilet (I know, right?  Gross!!  But it's that kind of (I was going to say sh*t but... stuff we gotta deal with).

Luther's losing his legs now.  We're placing bets on when his legs will go.  We've been practicing taking his wheelchair in to the bathroom and only taking five steps to the toilet.  (More toilet talk...)

Prior to this, it was no problem.  His legs were golden!  He could - with the help of the lift chair - get out of his chair and walk to the bathroom without me.  He could get himself in bed.  He could - in awesome ninja-like fashion - kick a restaurant bathroom door in and roll himself in.

Now, I help him in to bed by lifting up his legs.  I follow him in to the bathroom and stand behind him when he pees (he is still standing).

He said he'll walk 'til the last possible moment but he knows he shouldn't be now.  He used to lift his legs so I could put on his pants.  Now, he can barely lift his feet and the struggle to get dressed is even more difficult.

Luther's anxiety is at an all time high.  Super claustrophobic, especially at night.  It takes forever to get him settled and in to bed.  The other night it was up and down and up and down until finally, at 4 a.m., he fell asleep.  If you think about it - he can't move.  He can't roll over.  Covers on him feel coffin-like.  He can't find a comfy position.

Putting him to bed is a delicate dance.  Solving a puzzle.  His head has to be just right on the pillow or he rolls right off.  I lift his legs but sometimes they get tangled - it's dead weight.  His arms have to be moved to the exact right position.  His shirt cannot ride up in the back... if it does, I have to sit him back up, smooth it back down and carefully lie him back down hoping he'll hit the pillow just right, his arms won't get stuck under his back, his legs don't get tangled up.

Things are getting tougher but we're happy to be here, where it's warm.  With family. It's quiet. Slow. Feels safe.  Behind this warm feeling though, is being constantly tired.  Scared.  Sad.  It's not on the surface, though.  It's tucked away.  It comes out in weird ways - unable to do laundry or pick up my clothes.  Not caring too much about what I look like (pj's for days!).

I heard this song today by Colin Hay:  Waiting for my real life to begin.  It brought me to tears thinking about the past, our old life together.  This weird limbo we're in between living, struggling and dying.  Thinking about the future without feeling guilty.  Thinking about how I slay that damn dragon every single day...

https://www.youtube.com/watch?v=Cvrzqcfv9mY&list=RDCvrzqcfv9mY
(click on this red link to hear the song)

Any minute now my ship is coming in.  I'll keep checking the horizon.
And I'll stand on the bow, feel the waves come crashing, come crashing down on me

And you said,"Be still, my love.  Open up your heart.  Let the light shine in"

Don't you understand?  I already have a plan.  I'm waiting for my real life to begin.

When I awoke today suddenly nothing happened. But in my dreams I slew the dragon.
And down this beaten path, up this cobbled lane, I'm walking in my old footsteps once again.

And you say,"Just be here now.  Forget about the past.  Your mask is wearing thin"

Let me throw one more dice, I know that I can win.  I'm waiting for my real life to begin.

Any minute now my ship is coming in.  I'll keep checking the horizon
And I'll check my machine, There's sure to be that call.  

It's gonna happen soon, so very soon.  It's just that times are lean.

And you say,"Be still, my love.  Open up your heart.  Let the light shine in"

Don't you understand?  I already have a plan.  I'm waiting for my real life to begin

On a clear day, I can see, see for a long way

Random Stuff

1.  Eulogy for Luther's hands

At 2:55 today, January 17, 2016, Luther let me know his hands and arms were completely dead.  It happened slowly, over time,  First his shoulders, his right arm, then left arm.  The last couple months, he's been able to use his fingers to hold the remote to his chair and to the tv.  And to smoke.

The remote stuff stopped about 3 weeks ago.  He still holds the remotes, like some sad life preserver. It makes him feel better, so I pretend I'm adjusting them just right and he thinks he has some control.

Imagine that.  No control over anything. Haha!  And having to depend on me to change your channel, wherein I make a comment about every show we click through.  Reminder to self:  Just quietly change the damn channel.

We were at a gas station in Newnan, GA when he told me his hands were dead.  I actually cried - it was the way he said it.  Where we were.  How hard the last couple days have been on him.  I looked at him, so small in his wheelchair, in the parking lot at this gas station.  This man I love so much.  I want to give him back his hands.

2.  Breathing/Coughing

At the last clinic, in November, Luther's breathing capacity remained at 60%.  When he was first diagnosed with ALS and they did a bunch of baseline tests, his breathing was at 87%.   I guess it's called FVC - Forced Vital Capacity - how much air your lungs hold.  60% isn't great but it's held steady at 60% for the last 6 months.

I'm curious to know what it is now.

With ALS, you lose the capacity to swallow. Right now, Luther eats what he wants.  The time it takes him to eat is much longer than even a few months ago.

He's very careful to chew slowly.  He's careful to eat things that aren't too thick (ie, an awesome piece of french bread or a thick bagel). The speech therapist showed him how to lower his chin to his neck when he swallows so he won't choke.  I'm careful to cut his food in to really small bites.

Chewing makes him tired.  At times, he breathes heavy, like he's run really fast, just because he's chewed too much.

He coughs a lot.  It's a gross, "wet" cough, full of gunky phlegm.  About six months ago, he could cough up that junk.  Now, he has this soft, really weak cough and at times, I want to pound him on the back to get that stuff out.

With ALS, it's possible your speech goes because you lose control of the muscles in your tongue. Lately, I've had to ask Luther what he's said over and over.  I can't hear him.  I don't know if his voice is quieter -- it's almost like he's losing the strength in his diaphragm.  Especially when he's tired.

Sometimes I just think it's me, looking for the next thing to happen.

3.  Rollin'  rollin'  rollin'

Luther's wheels have been outfitted with this crazy headset.  Since he's lost use of his hands, he can't use a joystick to propel his chair anymore. He tried using his feet but that just didn't work at all.

He doesn't want me pushing him around!  So the awesome OT crew at the VA rigged his chair up with the headset you see in this picture.

It's a monumental pain in the butt - or maybe his head!? - he has to focus so hard just to turn a corner.  He pushes his head back to go forward and then left to go left, etc. Think about it, though.  We don't really talk when he "drives" -- it takes too much concentration. He's worried he'll run in to a door, over someone's toes, in to the table when we go out to eat.  It's tiring to watch, but he's a champ.

4.  I love Luther

This is such a weird place to be.  Right now, I'm sitting in a motel 8, it's 2 a.m.  Luther was asleep but his electric blanket got too hot and he freaked out.  He thought he was trapped.

Ok wait.  I didn't mean it was weird to be in a motel 8 with Luther.

It's weird to think - after being single forever - I'm finally crazy in love with this gentle, patient, awesome guy.  Who's dying.  Who's deteriorated right before my eyes.  That's the weird place.

In sickness and in health.

Every day I think I cannot do this.  I can't live up to this.  I'm not a caregiver by nature.

I know people have worse things.  I know everyone has a burden to bear.  I don't corner the market on sadness or frustration.

But geeze Louise, this is the hardest thing I've ever done.  I love Luther so much and sometimes I don't know how to make him feel better.  I can't take away his pain or frustration.  Sometimes I just sit, feeling idle and helpless.  I'm his full-time caregiver and often time, I suck at it.  I hide away from him -- he naps a lot and I kind of hide away, letting him.  I'm not sure what to do.

Other times, I make this full-out effort to be Mary Poppins, Florence Nightengale and a sexy Stepford Wife all rolled in to one.  It doesn't really last long because generally I don't get out of my pj's until 3 and I'm lucky to brush my hair.

I suppose there's a middle ground in there somewhere.

All I know is that I look at Luther and I think I can't love him any more than I do.  My heart feels like it will burst.

But every day, I fall in love with him more.  Even when he pisses me off, which happens more and more lately.

This crazy sense of control he wants to hang on to.  I want to take his pain and frustration away and he wants to hang on to it, like some medal won for going the distance.  I get it.  I do.  Which is why I love him more.

How can I not live up to this awful disease?  How can I not be Luther's hero?  He is certainly mine.  I thought we'd be partners in crime as we grew old together. Now I just hope we get through the day.  And when we do, it's awesome.

Tales from the front...

From me:  

It's been well over a month since I've posted here.  I want to write positive, happy things.  I want to say I'm giving Luther the best care, the best life.  I can't do that.  Each day is slow, long, tiring. It's so cold.  It's quiet.  We can't get out.  So I don't write.  There isn't much to say.  

We leave for Florida in less than a week!  That IS exciting news.  We're both hoping for new perspective, new energy.  Just being warm.  Luther's been cold since last year - he never got warm this summer in Minnesota.  

The following are little snippets from other caregivers.  I'm in a couple online support groups.  I find them very helpful; it's good to know there are resources out there for support and advice.  At times, though, it's heartbreaking and a bit scary to look in to a crystal ball and see the future.   These were taken from the last month.

From others:

How long? I wish I had some idea. Down and down and down we go. Each day a little weaker. Each week a little more unbelievable. Options neck down; what worked yesterday doesn't today. Yet we go on because she's still here.
__________


Think I'm going crazy. I really beginning to wonder if I'm strong enough.
__________

Does a PALS being "ready" to be called home have any impact on when they pass? My mom told me today that she is ready and then proceeded to give me a few funeral details. She is completely dependent but her breathing is still good. Isn't breathing what "gets" them? I just feel so bad for her and so helpless, she's just laying there waiting to die.
__________

My pALS passed away in December. My faith for his healing never failed, but God had other plans than the one I cried out for. I would have championed as long as it took to save him but instead we lost this battle and he drew his last breath with me by his side. He is safe in the embrace of Our Saviour Jesus and so I rest in the fact that I will one day see him again. Our young children and I are grieving our loss and are truly devastated. I had hoped that together we could have found a cause for this illness, something that our pALS shared in common that brought this illness on. Thank you for all for sharing your journey and providing insight and help where you could. Be blessed.
__________

I am so sorry for your loss. My husband was convinced that wasp therapy was the cure. We spent the summer before he passed catching wasp and stinging him in his muscles. I really do believe it helped some. It is a long story, if you ever want to compare notes you can pm me.Thank you for your heartfelt words. If I had more time I would have continued with the honey bee stings following the protocol on Healing Lyme with Bee Venom Facebook group. I have such confidence it would have made a difference...my pALS just ran out of time time...  
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Need some advice please. Mom battling terribly with urine incontinence. She is using nappies (diapers) but keeps on getting a feeling like her bladder is pulling. These spasms are becoming extremely painful. She tried a catheter last week which only resulted in loads of pain. Perhaps damage from catheter caused inflammation of urethra? There is some fresh blood in nappy. Tested urine for infection, all seems clear?? She has constant tribe flow that we find difficult to keep up with. Change her nappy constantly.
__________

Sorry for posting so much today. My husband has been having so many secretions lately. I'm constantly doing the cough assist and suctioning. Is this just the progression? There just so much mucus.
__________

Taking care of an ALS patient is like taking care of a baby that never grows up...sigh.
__________

Hospice - Tomorrow we are entering into hospice for my wife, my pals,my love. This step, this final step Is what we need so badly right now. A few months ago, my wife would have nothing to do with it - now she is ready, she knows where she is and the road ahead and she knows we need help. And she is scared, not of death, but of the dying process, and the loss of clarity of mind that morphine could bring.

__________

It's not good when you realize, as you're getting your PALS out if bed, that you're already sick and tired of the next 14-16 hours and they haven't happened yet.

__________

 OMG!  I heard something & went running into our bedroom! There's my PALS laying on the floor with poop everywhere!  His caregiver (AM shift for: bathing, etc...) is freaking out & says: "His legs aren't working"!  I run to the guest room to get the hoyer lift - come back into the room & the caregiver turns around bumping my coffee cup all over my jewelry on the dresser!  In the mean time my PALS is laying in feces & is having a very hard time breathing!
_________


I know every pals is different but how do we know when we are near the end? 

apparently I'm on a blog break....

Well - I can't say I've been "present in the moment" of my gratefulness.  I started off with such a bang!!

Lately, though, it's just trying to get through the day.  Not in a bad way - just the regular way.  One foot in front of the other.

People always say to take "me" time. I get that -- if something happens to me, then how do I take care of Luther?

The thing is, what exactly is "me" time?

I keep saying I want to take a weekend at a hotel and just sleep. To be honest, it's mostly wanting to be by myself.

As much as I love Luther, I want to sleep the night through.  Sleep as long as I want.  Feed only me.

I think, though, I'd miss Luther too much.  I like being with him.  As bogged down and robot like as I feel sometimes, I'd rather be with him than not.

Things are good.  I'm really tired still and pretty sad these days.  I don't want to go out.  I don't think it's because of the sad feelings and tiredness.  Maybe a little.  It's mostly because Luther can't be alone anymore.

A couple times, I've left him for two hours.  I've been able to do that before.  My "me" time -- I'd leave for a few hours, run around, take some time to myself.  The last time I left him alone - this past weekend, I came home and he was sick.  Nauseous, anxious.  I felt awful.  He needed to drink, he needed to eat, he needed the blanket off him.  He can't move,  What was I thinking?

Writing here feels like homework.

I quit going to the Emily Program.  That felt --- like homework?  Like too much.  Emily Program is the eating disorder place.  I know why I'm eating too much!  I just have to stop.  Either stop or don't, right?

At times, I feel so tired I can't do much.  I can't type.  I can't talk.  I can't make dinner.  I don't understand it.  I'm therapied out.  I take drugs.  I go for walks.

Sometimes it's all just too much.

Days 2 - 4 - GRATITUDE!

The biggest deal in the last couple of days has been SLEEP!

Luther and I went to a casino to see a comedian and we decided to stay overnight.

It was tricky since it was the first time he was out and about in the wheelchair using his head to move it forward.

The best way I can explain it is when you ride a bike and you want to take a right, the bike is still moving forward.  With his chair, he has to come to a complete stop and then turn, so it's very jolting.

He looked drunk, moving his head this way and that.  Practice will make perfect!

All in all, it was a really good time. We enjoyed each other's company, it was relaxing, the show was great, we smooched a little and we slept and slept!  It was wonderful.

The other big deal is the weather!  Aren't we all grateful for this weird, warm weather?  It's been a blessing for us both - it's so much easier to get around in the chair.

We had a conversation about moving to Florida for a year or so.  Luther said even this summer was too cold for him.  He got sick in July, he was hospitalized twice and he felt like he hasn't really recovered.  The heat in Florida just warmed his bones and he felt so good.

We're incredibly grateful we have a place to hang out in Florida and we'll be heading south again in January.  We'll make a decision about staying later, once we're there and see if Luther starts feeling better again.

Grateful recap:

SLEEP

SUNNY WARM WEATHER

BEING FLORIDA SNOWBIRDS