A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS…
Columns
My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy…
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…
Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught…
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,…
“Take my hand, precious Lord, Lead me home. … When my life is almost gone, Hear my cry, hear my call, Hold my hand lest I fall.” Although I fall light-years shy of the realm of gospel music aficionado, certain songs of that genre move me like no selection from…
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…
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…
Recent Posts
- My husband doesn’t get out much, but he enjoys following Comet’s secret life
- Keeping weight steady after tube feeding may help ALS survival
- Trial, error, and toe covers: Learning to adapt in life with ALS
- 5-year survival seen for over 40% of ALS patients on masitinib in trial
- Long-term air pollution exposure shows no clear link to ALS in UK study