Did you know that May has been ALS Awareness Month for the past 30 years? Yes, that’s right, 30 years. Some probably think ALS awareness activities began in 2014 with the ice bucket challenge. At least that’s when many first pronounced the letters A-L-S before dumping a bucket of water…
Columns
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…
“I been in the right place, but it must have been the wrong time, I’d have said the right thing, but I must have used the wrong line, I’d have took the right road, but I must have took a wrong turn, Would have made the right move, but I…
ALS life sure involves a lot of sitting. Although I keep myself busy with daily projects, most of what I do has me sitting at a computer. Added to that, I sit when eating meals, watching TV, riding in our van, and riding my mobility scooter. That’s a whole lot…
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…
“The secret of life is enjoying the passage of time.” Time fascinates me, now more than ever. In my own way, in the face of ALS, I’ve learned to enjoy its passing. I am writing this seconds after hearing…
I’m always eager to help others improve their understanding of what it’s like to live with amyotrophic lateral sclerosis (ALS). Likewise, I enjoy learning more about what others in the ALS community think and feel about living with the condition. Recently, I had the opportunity to satisfy both interests and…
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…
“‘The problem is all inside your head,’ she said to me, ‘The answer is easy if you take it logically,’ … She said, ‘It grieves me so to see you in such pain, I wish there was something I could do to make you smile again.’ I said, ‘I appreciate…
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…
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