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…
Columns
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…
While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago. It’s not because we don’t have a good…
Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you. Before ALS, my life was filled with moving.
Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was stricken with ALS. In retrospect, they feel like mere child’s play when compared with what I go through now. As a…
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