We need more help for ALS family caregivers in this country
It’s been a rough season lately in terms of finding care for my husband, Todd. One of his long-term nighttime caregivers gave notice last summer about moving on. Not only did she work two…
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.
Featured Post
As my caregiver duties increase, I need to let other things go
In the field next to our home, a stand of more than 100 Fraser firs provide boughs for my wreath-making operation. It’s a good seasonal gig for me because it’s flexible. Since I take…
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A new experience at home is especially meaningful with ALS
Life at home with ALS becomes like “Groundhog Day,” the 1993 film starring Bill Murray, in which the main character, Phil, is stuck in a time loop and is forced to live the…
Why I can be thankful in the bad situation of life with ALS
As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.” There’s scientific evidence promoting the benefits of…
A do-it-yourself approach to mental health while caregiving
I’m a do-it-yourself kind of gal. This has served my husband, Todd, and I well over the last 14 years as I’ve been his primary caregiver. We do not have an ALS clinic…
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…
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…
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…
