Columns

I have a vivid and beautiful memory from a few summers ago, as my late husband, Jeff, and I lived with his ALS. We were spending a day on the water, as we often did. Jeff had lost his voice and most of his ability to walk,…

Remember “MacGyver“? In this TV series from the 1980s and early ’90s, the titular secret agent always found himself in an untenable predicament and used whatever was around him to devise a solution. Whether it was a paper clip, a thumbtack, or a toothpick, MacGyver was able to…

A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could…

Last week I felt sad. I had to unravel a knitting project that had consumed a good part of my summer. “What’s the big deal?” you might ask. Well, the big deal is that living with ALS has me feeling hypersensitive to time. How I spend my time…

I’ve lived in the shadow of my husband Todd’s ALS for the past 13 years. My days have been clouded by the bitter reality of knowing that life will only get harder until it’s over. The daily stresses of my caregiving are intense: clearing his airway when he…

There was a time when I could twist off the lid of a new jar of peanut butter with ease; I always enjoyed hearing that distinctive pop when the lids finally gave way. Pickles, spaghetti sauce, whatever: Those jars were no match for my grip strength and determination. Now, although…

“Find your own Calcutta. Find the sick, the suffering, and the lonely, right where you are — in your own homes and in your own families, in your workplaces and in your schools. You can find Calcutta all over the world, if you have eyes to see.” — Mother…

Last week, I set my husband, Todd, up on his computer before heading out for my weekly ukulele group. It’s difficult to leave my husband for long, because he’s paralyzed by his ALS. But my class lasts only an hour and I’d be less than 10 minutes away. In…

Last week was good; nothing bad happened to me. Not that I was expecting bad things to happen, but as someone who lives with ALS, I feel pretty darn successful whenever I can look back and note that things went well. I know, I know: Writing about a calm,…

As I’ve pointed out several times in this column, public awareness of ALS is vital to obtaining and sustaining progress in finding solutions to the myriad issues associated with the disease. Have you ever heard of NurOwn? It’s a stem cell therapy that is being considered for…