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…
We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…
A number of years ago, during my first year of learning to live with ALS, I promised myself that I’d show up every single day. At that time, my notion of showing up meant my goal was simply to get up, get dressed, and go sit in the…
My late husband, Jeff, made a dream come true for me. When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of Annapolis, Maryland. If we had enough time and the weather cooperated, we’d take a…
One evening last week after I’d finished cooking dinner, I grew concerned. My almost 14-year-old son had gone out to ride his dirt bike on an off-road vehicle (ORV) trail that ran next to our property. He’d planned to go only to a nature area a couple miles away and…
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