In the summer of 2010, my husband, Todd, stopped at the mall after work. It was my birthday, and he hadn’t gotten me anything yet. His mind was still swirling a month after receiving an ALS diagnosis. The shock of it. The grief. He walked through the mall…
Joyful Sorrow - a Column by Kristin Neva
A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom. On Saturday,…
Living With ALS Takes Courage
Editor’s note: This column discusses suicide. Please find resources for help at the end of the column. In the “Safety Training” episode of the sitcom “The Office,” Michael Scott, the boss, wants to prove that working upstairs in the office is just as risky as working in the…
Author and counselor Douglas C. Smith wrote in Health and Happiness U.P. Magazine about five types of grief people are experiencing through the pandemic. As I read through the article, I realized I have experienced all of them — anticipatory, general, disenfranchised, ambiguous, and vicarious grief — with my…
My husband, Todd, gets twice-weekly physical therapy, which significantly improves his quality of life with ALS. Six years ago, Todd was having pain in his shoulders, and his elbows would not fully straighten, making it difficult for him to use his wheelchair. His doctor ordered physical and occupational therapy evaluations…
I got away for a couple of nights during spring break with my 12-year-old son, Isaac, and 16-year-old daughter, Sara. It was good to have a mini-vacation, although I was sad my husband, Todd, couldn’t join us because his ALS progression makes travel too difficult. Three years ago, we all…
An old friend stopped by with a gift of homegrown microgreens. She’s a retired nurse, and she used to help with nighttime care for my husband, Todd, who has ALS. She visited for a while, and we updated her on Todd’s health and decline in lung strength. I…
Last Sunday, the temperature was in the high 40s, making the tracks in the cross-country ski trail smooth and fast. A gurgling brook carried away snowmelt from a long winter. Birds sang. Two chipmunks scampered up a tree, one chasing the other. Spring skiing is one of my favorite…
I felt twinges of grief as I shopped for a card for a young couple’s wedding. First card: “Wishes on this special day for happiness, joy, and love, along with a future that will bring everything you are dreaming of.” Sigh. I wish my husband and I had a future.
Breathing Easier With Support
Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator. It doesn’t help that we…
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