Just as I knew it would, ALS has become my warden. Can’t go out, it’s too cold. Can’t call a friend, they don’t understand my speech. Hell, no one does. I can’t even complain out loud.
I sit in my wheelchair watching the disarray around me. There are Christmas decorations to be put away. Coats to be hung. Laundry to fold. None of these are on my bucket list. In fact, there’s no point to a bucket list because I can’t write it or accomplish it from here.
Every aspect of my life is dictated to me by the ALS that holds me prisoner. I used to feel sorry for a cousin whose Dad would constantly ask her to fetch him things while he sat in his easy chair. Now I’m that uncle. Even though I can get around most of the house, I usually cannot reach the items I need. One misplaced piece of furniture can ruin my best laid plans. And if an item is moved from its usual spot, I can spend the good part of a hour searching for it before I give up.
Visiting hours too will soon be on a well-orchestrated ALS lockdown. The need for a nighttime aide to get me ready and into bed will see to that. But in truth, visitors are rare.
ALS takes control of caregivers too. It is a hard disease to manage because it constantly changes its modus operandi. Tuesday’s clinic visit was exceptionally hard on both my husband and myself. My forced vital capacity fell another 10 points. We met with the pulmonologist who ordered a Trilogy machine to help fully inflate my lungs at night and a Cough Assist machine to help clear out built up mucus. The worst was yet to come.
Listening while the doctor explained a tracheotomy and ventilator was a real depressant. Although I asked for the information, my PBA kicked in so she had to stop several times. Now armed with the information it is clear that it is something I will not do. Even though it could extend my life by two years, what kind of life would it be? It requires 24-hour care which few people can afford. So when my time comes to an end, I will go peacefully to sleep. I will die in the general population rather than live a life of solitary confinement.
ALS and ME 
I cant even imagine to say..I feel your pain. You are a strkng wimen Kathryn. I wish I lived closer and I could stop by and fold those clothes for you. Having surgery last fall myself was hard not being able to do anything but sit still about drove me crazy. I pray God continues to give you the strength you and Joe need to handle such an overwhelming disease. Your love of God and for each other will hold you both Strong!!
Love you.
XOX
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Wish we could visit you. I can’t drop by but we can communicate via text / email anytime. Please reach out to me. We were always able to chat for at least an hour… we can type for as long as you want. Always in my prayers!
Love to you & Joe😘
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very well said- i only have Bulbar but managing mucous is my life now. Truly limits visiting and even going out. Getting me ready for what’s to come. And I agree on the tracheotomy – too mich for the family and what would life be like in that prison?
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Good Morning from North Texas!
God is with you and Joe.
The miles separate us but Kikkie and I think about y’all daily. We wish we were closer to help.
We know your Love and Faith we make you spiritually stronger every second.
Please let us know if you need anythng.
Peace.
Love, Kikkie and Paul
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Your strength and words are an inspiration!!! Thank you for sharing your journey! You & Joseph are always in my prayers!.
Love,
Valerie
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Good morning from MA! I can relate to everything you said. Prayers yo you and your family.
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Kathryn, my heart is so with you and Joe on this journey. You’re in my prayers everyday. I hope Susan and I can come back soon. I love you. ❤️
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Oh Kathryn,
How I feel your every word.
You see, my Brian passed on the 15th of this month……..I didn’t have enough time to LOVE him💔
He too was in prison, couldn’t hug me, hold me, or help me.
I did 99% of his care, wouldn’t trade that time for anything, we enjoyed when I shaved his face, brushed his beautiful hair, rubbed his legs and fingers……we enjoyed everything in a way only an ALS couple could.
I can only hope you can be released from YOUR prison as peacefully as my Brian.
💔❤Brian’s wife
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You are a warrior. You and Joe are always in my prayers. Sending much love and peace ❤️
Love,
Suzanne
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Kathryn, you are a true inspiration to humanity. You have gone above and beyond any expectations with this God forsaken ailment. May the Lord continue to give you strength and most of all peace. God bless you both.
Love to you and Joe, Syl
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