Why building an accessible home was the right choice for us
Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his…
Joyful Sorrow — Kristin Neva
Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Reading others’ stories reminds me that I’m not alone
Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare…
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Getting good sleep is challenging with ALS
Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has…
Nature and community feed my soul as an ALS caregiver
It’s hard for me to get away from home because I’m the primary caregiver for my husband, Todd, who has ALS. But I try to take daily walks in the fields and woods…
An AI voice can improve quality of life for people with ALS
I’m thankful for the way technology is developing to improve the quality of life for people with ALS, including my husband, Todd. Six years ago, I encouraged Todd to bank his voice while…
Good memories sustain us when life with ALS is hard
I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular…
What is contentment when ALS is in the picture?
This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he…
Years after diagnosis, we’re still learning how to best manage ALS
The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not…
ALS both magnifies and steals joy from everyday moments
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I…
A friend’s visit reminds me of what now seems a lifetime ago
A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a…
Making a commitment conditional is often necessary as a caregiver
Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going…
The chapter in which our daughter goes away and her father cries
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move,…
