A Day in the Life... With ALS

I only ever remember seeing one man with ALS before my own diagnosis 3 1/2 years ago. My kids were selling Christian books with a group in Kentucky  and came to a house where the man had ALS. I was shuttling books and kids around and remember seeing the man sitting in an electric wheelchair in his carport. I'm not sure why that haunting image stuck in my mind but it did. I never dreamed that one day I would have this dreaded disease and be sitting in a similar wheelchair.

So what does a day with ALS look like? It's different for everyone, but here's a few glimpses into a typical day in the Powell home.

I wake up between 5 and 6 am and immediately have prayer, praising God for another day of life. Kevin gets my water and then begins my involved morning routine while we listen to some scripture or a devotional reading.

For the last almost year my dear husband has chosen to be the one to give me my bed baths and do my morning toileting routine to serve me and to help preserve my dignity. Although I never pictured him having to do such things for me he has never flinched from my increasing dependency, but risen to the occasion with growing competence and skill. He's even perfected three hairdos for me: "the ponytail", "the headband" and "the clip." Lol!  Since "acts of service" is his love language he tenderly shows me Jesus through his daily caregiving during even the most mundane and unpleasant tasks. He often reminds me "ALS is OUR journey not just YOUR journey." I am so thankful for my devoted man and realize that I am blessed among women! 

Part way through my routine Beth and Micah join in our room for breakfast in our adjustable king bed while Kevin shares a worship thought. He then alternates eating his breakfast with feeding me my puréed meal through my feeding tube. 

One of my favorite moments of the day is when our youngest, Micah, finishes eating and leans his head on my shoulder and holds and strokes my nearly paralyzed left hand for a few moments before rushing off to class across campus. That brief expression of love and sympathy from my 16-year-old warms this momma's heart. 

Kevin then finishes my morning routine and gets me up in the wheelchair. He's the only one that has done this maneuver; the equivalent of transferring a 120 pound rag doll while fully supporting her neck and body. 

In the mornings and afternoons I have much time to pray, text friends, write (although it's becoming more difficult with increasing weakness in my right arm and hand), listen to sermons, and music, study the Bible, sit in the sun, nap, enjoy the little things.. There are many things and cares of life that I don't have to worry about now! Kind of a strange "life of leisure," when you think about it, lol🤪. 

But don't let me fool you, it ain't always easy! 😫 My "leisure" is often interrupted by many caregiver  needs such as giving me water, suctioning my trach, using the cough assist machine, wiping my drool, potty-ing, stretching, repositioning, then repeating the above.

Because Kevin is working half time, teaching just two classes at Ouachita Hills College, we are usually able to juggle my care between him and our daughters, Hannah and Bethany, with occasional help from other family and friends. Someone knowledgeable with trach care has to be with me all the time.

Bethany opted to stay home this year to help and is such a sweet blessing to me. She put her elementary teaching degree on hold (just teaching English classes in the high school a couple hours a day) and devotes much time to my caregiving, even relieving Kevin with night duty a couple times a week. She is the main one to make and freeze ahead my organic, sprouted, puréed tube feeding meals as well as making the family meals. Quite an undertaking! 

I look forward to "spa days" on Monday and Friday mornings when my loving daughter, Hannah, comes to wash my hair, spoil me a little and help with whatever she can. She's also a busy RN and a private duty nursing job on Sundays helping with a young girl who has a trach and feeding tube (was the Lord helping her hone those skills?) and also a couple days a week in labor and delivery at a local hospital. She and her husband, Jonathan, live just 10 minutes away. Her schedule may change in September when they have our first grandchild (a boy!)!! We are thrilled! Now that's something to write about! 😀 

Our caring sons help when they can. Micah faithfully does his chores, makes me fresh vegetable juice, does stretches for me and can even suction my trach if needed. Nathan, is an associate pastor in Texas, but is very in touch with what's happening at home. He comes home whenever he can and keeps in daily encouraging contact. My kids and son-in-law (he's great too!) are a tremendous blessing to me!

The day passes quickly and by around 6 pm I'm weary of the wheelchair and ready to stretch out in bed. We usually eat supper in bed as well, often watching an inspiring documentary or nature video or just sharing about our day.  

Kevin then starts my lengthy evening routine while we often listen to an audio book together. We've listened to around 25 faith- inspiring audio books together in the last year or so. It's a fun way to redeem the time. He tries to have me settled and have my lights out between 8 and 9 but it's often later. 

Usually every day is intermingled here and there with a few tears, but as you can see there are many smiles too (although my smile muscles are weakening too and my smile looks a little off). I am thankful for each day and know there are many in even more difficult situations than me.

One of my favorite hymns is "Day by Day." The first verse says:

Day by day, and with each passing moment,

Strength I find to meet my trials here;

Trusting in my Father’s wise bestowment,

I’ve no cause for worry or for fear.

He, whose heart is kind beyond all measure,

Gives unto each day what He deems best,

Lovingly its part of pain and pleasure,

Mingling toil with peace and rest

Each day is a gift and my Savior is the only one who knows the length of my days. He will sustain me day by day and give me an inheritance with Him! Looking forward to better days ahead!

The LORD knoweth the days of the upright: and their inheritance shall be for ever. 

Psalm 37:18