This is ALS

Old feeding tube that needs to be traded out.  The food grade tubing gets REALLY rigid after about a month or six weeks of use.  It starts to darken and it is really hard to clamp.  Time to pitch it.

Mouthwash and Calmoseptine

 Two quick tips:

1.  Calmoseptine works wonders on feeding tubes.  We have gone through several different care techniques for Jonathan's feeding tube and integrating Calmo has been awesome.  We put a little Calmo around his feeding tube every morning and every night and cover it with a piece of 2 inch split gause to prevent any skin abrasion.  I also use it occasionally in his armpits when I notice he is starting to get skin breakdown.  Before we got a Roho backrest for his wheelchair he was also starting to get skin breakdown on the tip of his vertebrae.  Using Calmo there helped as well.  You can buy it on Amazon.  If it isn't part of your "cream drawer" I highly recommend it.

2.  Suction canisters can get gross really fast.  I always like to add a little mouthwash to the suction machine canisters so they aren't so stinky so fast.  If I add mouthwash I can go a day or two before I have to wash the canister.  It helps with equipment up keep.  Enjoy💙.

Light and Dark

It is my sincere prayer that this blog post is filled with true gentleness and love.

Several years ago I found myself in a darkness that I had no idea existed.  I had never tasted it before, nor seen anything of its nature in or near my soul.  It was as foreign as anything I had ever known, but imperceptibly it came and stayed.  Unrecognized at first, I didn’t understand it, but saw its influence and effect in every moment of my every day. Undoubtedly, it was bondage.

I believe it was a personal concoction of fatigue, grief, fear, triggers, hurt, brokenness & depression.  I don’t believe that all darkness is bred of the same tincture.  It is fiercely personal and intimately unique.  But I do believe there are moments and seasons and circumstances that meld together differently in each child of God that try us, and test us, and demand that we too, must drink from a bitter cup.

I want to bear my witness that there exists a Redeemer, a Deliverer.  A force and a power, and a love that no matter the darkness, has power to overcome with light.  I truly believe that when we come unto Him, we are changed.

In an effort to overcome darkness I knew I wanted the purest form of light I could find.  So I spent more and more time reading scripture.  And small pieces of light began to come.  For example, in my darkness I found myself “snapping” at moments.  I would lash out in anger in an effort to vent the darkness that swelled.  I didn’t love lashing out, but I didn’t know how to make the darkness leave except explode.  I turned to my scriptures and my mind began to ponder the principle of “temperance.”  Galatians reads: “But the fruit of the Spirit is love, joy, peace, long-suffering, gentleness, goodness, faith, meekness, temperance.”  I reflected on the time my sweet 5 year old Matthew threw a rock into our van window and it exploded.  Glass was everywhere.  But upon inspection, I realized that I could pick the pieces of glass up with my bare hands.  The glass was tempered.  It was broken, but it wasn’t sharp.  Light filled my entire soul.  God never said I couldn’t be broken, in fact, quite the opposite, He asks for a broken heart.  But He did ask that I be temperate.  He asks that I break with temperance so that instead of cutting with sharpness those around me, my brokenness allowed others to scoop me up, hold me, and help put me back together again.  I promised from that day forward, tempered brokenness.  No part of my life circumstance had changed, but a particle of darkness was replaced with light.

In addition to filling my mind with light, I found a similar need for my body.  I needed the breath of life and desire to keep going-

Overcome and defeated, numb, and weary I sat on my couch with my phone in my hand.  I typed into google “how to overcome depression”.  Although just one facet of my darkness, I new it was a piece.  My soul was screaming out: PLEASE someone help me.  A recent scientific study popped up that I clicked on.  It was a study regarding the effects of exercise on depression.  Participants, who identified as being depressed, agreed to perform 30 minutes of exercise, 5 days a week for 3 months. These were the results.  Fifty percent of the participants no longer identified as having any signs of depression at all. Thirty percent identified as having at least a 50 percent reduction in depression symptoms, and 15 percent identified as having a noticeable decrease, while the last 5 percent noticed no change at all.  I trained as a science teacher in college, not math, but a 90% perceptible decrease in symptoms sounded promising to me.  I vowed in that exact moment I was all in.  I wasn’t going to miss a day.  The next 3 months I would devote 30 minutes a day, 5 days a week to finding light.

I began to go for a walk each day.  I left everything that called to me behind and put on my shoes and walked out my front door.  Some days it was all I could do to go, but I made a promise to myself.  So I never missed.  Something I noticed -  almost like clockwork, I would get to the exact same spot on my regular trail and activity in my body led to an endorphin release, which would stimulate an emotional release, and I would begin to cry. I wept and walked for months.  My brokenness found a temperate release.  Nothing in my life circumstances had changed, but darkness was replaced with light. 

I truly believe that:

1. Filling our minds with pure truth every single day, (scriptures and words of apostles and prophets) 

2. Exercise, almost daily and 

3. Repentance (which I didn’t touch on) daily, 

are gentle ways that are ordained of God that allow us to come unto Him, find rest & light.

The darkness that once consumed me didn’t leave overnight.  It wasn’t a one and done moment.   It was a  journey that has involved months of prayer, fasting, temple attendance, counseling with parents, talking talking talking talking to spouse, seeking counsel from priesthood leaders, accessing additional caregiving help, changes in relationships, white knuckle straight up gritty faith.  BUT there exists a source of light that can help us regardless of the terrain. I am so confident of that I would be willing to lay down my life defending that belief.  There is always light.  So keep your chin up.  Believe in good to come… and follow the Savior’s command to “spare not.”

Missionaries from the Church of Jesus Christ of Latter-Day Saints asked if we would be willing to share what we had learned in our life journey.  They compiled this video “Spare Not” that descubes some of this journey.  You can click this link to view it.  ❤️  https://fb.watch/i0c9QrDbL_/

Bedtime Body Positioning with a Trach

There is so much to sift through while navigating ALS.  Jonathan has had his trach for 2.5 years now.  When we first had it placed we had a lot of questions about sleeping. (If you ever have questions, don't hesitate to ask)  We wondered if we needed to bring in the hospital bed, would he need overnight care, would he get bed sores from not turning, how would that influence transfers etc.  ALS is so different for everyone, so take this with a grain of salt.  Honestly, you really can't compare your methods with others but just glean and sift what works for you.  Jonathan has slept in our regular queen bed in the exact same position all night long for the past 2.5 years.  I have no idea how this man has been able to tolerate not moving for 8 hours at a time, but he does it.  I love and marvel at him daily.  This is absolutely not for everyone, but enabling him to stay in our bed has been therapeutic for all of us.  A wheelchair is isolating for us and him so evenings in bed are a slice of heaven.  Being able to sleep next to him and access his suction machine through the night without getting up out of bed every time has been a life saver for my sanity.  Again, this isn't going to work for everyone, but if you sift and glean anything helpful its worth it.  This is a video of how we position him at night. (Bless my sweet 9 year old for being videographer.  I do get a little dizzy watching the video... be wary all ye seasick sailors!) 

How can you not love this???  Every night before bed Anna crawls up next to Jonathan and they read a book together on a YouTube channel called "Story Time with Ms Becky".  She and her dad have spent hundreds of hours snuggled in a ball in bed.  It is all the kids' favorite place.  We read scriptures as a family every night before bed and if Jonathan is in bed it is always a fight for the Dad spot.

Condom Catheters

Single handedly the greatest addition to sanity in early ALS life was the use of condom catheters.  When Jonathan was first diagnosed (2016) he developed an urgency associated with having to use the bathroom.  He was still walking but when he had to go to the bathroom he easily lost his balance.  The minute he had to urinate he had to go to the bathroom NOW and walking to the toilet was like navigating a mine field.  He had more falls associated the unpredictable and immediate need to urinate than anything else.  One night he got up to go the bathroom and I awoke to a death crash and water spraying everywhere.  He had lost his balance and fell wedged between the wall and the toilet.  He ripped the toilet paper holder out of the drywall, broke the water pipe to the toilet and was found in the most kerfuffled predicament with his skimmies around his ankles I have ever seen.  I hope there are replays in heaven.  Because although in the moment it was an awful fall, I believe it would make for comedy gold on replay.  So here's a quick clip about the use of external catheters:

I went back to look for a picture of Jonathan after he fell that night.  While scanning pictures I found these taken the evening before he fell and a few of the bruises after.  Seems like a lifetime ago -

This photo golden nugget is a random finding of a picture of 

Jonathan with Dr. Richard Huffaker (longtime buddy).  

1.  He is the reason we were able to get an ALS diagnosis.

2.  Rich is an ENT.  That means he has been with us every step of the way.

He placed the trach.

He changes the trach.

He does house calls on Valentine's Day @11pm to stop bleeding.

He drafts prescriptions in holy places. 

3. Never a truer brother in the brotherhood.

4.  If the earth were filled with Huffaker's all would be right in the world.

And below - a smidge of war wounds from water pipes and toilet paper rolls.

All you ALS people know these battle wounds well.

Team Gleason Shower Chair

 This is the shower chair we use for Jonathan.  It was gifted to us from Team Gleason (teamgleason.org).  Showering a person with ALS is straight up terrifying at times.  Before our roll in shower was built we used a tiny corner shower to shower Jonathan.  We actually preferred the tiny shower because as Jonathan's balance was waining he could lean against any one of the walls for support.  He did fall several times in the small shower and getting him out was an Olympic sport.  Once again, if there are rewinds in heaven... Oscar winning drama/comedy.  

Once the larger shower was built we started showering him in that bathroom, but with wide open spaces you have nothing to catch your fall, and like a friend with ALS once said, you are like a tree trunk going down.  Jonathan cracked the floor tile with his head on one such shower day.  (Scroll fast if open flesh wounds gross you out.)

And so getting a shower chair that Jonathan could sit safely in while we shower him was huge.  Extremely huge.  It was gifted to us from Team Gleason.  It is a NUProdx Shower Chair.  Here's a quick video about the chair:

I cannot begin to describe the good Team Gleason does in the lives of person's living with ALS.  Steve Gleason, former NFL football player for the New Orleans Saints, was diagnosed with ALS in 2011.  Since that time he has paved a road for person's with this disease unlike any other of our contemporaries.  This man's works is absolutely unparalleled.  If you want to do a good thing, donate to Team Gleason.  Don't doubt your donation.  Don't second guess your gift.  The work of Team Gleason is intimately powerful in ministering to the needs of disabled people.  Hats off to you Gleason Family.

#als #teamgleason #nuprodx #showerchair

https://teamgleason.org/

https://www.nuprodx.com/

A Sweet And Tender Find If A Wheelchair Is Your Life

                       

                 

Last week we had a really sweet tender mercy, that for people that live life in a wheelchair, was a blessing to find.  About three hours from home is a town by the name of Sunriver, OR.  We have been there multiple times during the winter but felt the desire to see it during a different season.  We loaded up food for 10 for a week, computers (yes, laptops and chromebooks and the desk top) and school work, 7 bicycles and all things ALS.  It took two vehicles to get there. A friend that stopped by just as we were leaving said he didn’t know a family alive that would go to so much work just to have an adventure, but that is just our groove.  We were super blessed to find that Sunriver has 30 miles of PERFECTLY GROOMED trails that weave in and around forest and rivers to some of the most beautiful places on earth.  I can not describe how good it felt to put everyone on a bicycle and have Jonathan with us every mile.  He has lost the strength to use his hand to sustain forward motion for long in his chair.  BUT we have a special elbow support that we can push his arm forward thus engaging his hand in the "go" position.  When I shove his elbow support way up he is set for MILES (granted you have to chase him down at times to disengage captain go-go bringing him to a stop).  Getting places you would hike and bike to in a power chair can be extremely limited, and Sunriver was a tender touch of heaven in our lives.  If wheelchair life is your life, maybe consider some time in Sunriver.  Jonathan wheeled out of the accessible home we found to stay in and went right into the trails that led to endless hours and days of sweet blessings together as a family.

I wanted to share this opportunity with any that may also benefit from it, but before I close, may I keep it real for my tribe that lives real? After cruising without contention (which is rare) for hours as a family, and me literally thinking to myself, "This is my newest favorite day of my entire life!," we had a hum-zippy of a snafu 100 yards from the door of our rented home.  I saw Jonathan struggling and beginning to panic and I wasn’t able to discern what caused him to go from bliss to utter distress in seconds.  It didn’t take long for me to realize the source of duress.  We spent the next few hours doing a late night bath, clothing change, disassembly of the wheelchair and a thorough scrubbing of the Roho cushion.  For any that have enjoyed a Roho cushion scrub you know the joy of each individual air cushion and how carefully it tucks treasures between every little fingerling. 

                    

 After hours in the bathroom and not all parts of Jonathan’s wardrobe earning a ticket home his eyes caught mine and his silent lips mouthed the words, “Thank you.”  And adorned in odorous rubber gloves and with every ounce of love I had, I smiled back .  Hoping his heart would know I would do it for him a million times over because nothing brings me greater joy.  And for every imperfect mortal morsel that lives inside of me there is an equal amount screaming out, don’t you ever forget- I’m all in.  I’m broken and weak and weary at times, but don’t you ever forget, I’m all in.

                      

Ya.... we tried a bit of that thing called golf - first time for everything. 

Jonathan tried to see if he can still chew gum.  That was a riot!  He was sooooo close to making a wad in his mouth.  It was more of a wallowing around than wadding.  Good times.  Dang tongue just doesn't
git r' done like it used to.