The years since my husband, Todd, was diagnosed with ALS have been hard for both of us, not only physically but also emotionally. I don’t think there’s a way to overcome the grief that accompanies a disease that causes ongoing loss, but we’ve found ways to live with it.
Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
My husband, Todd, is paralyzed because of ALS, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using a sling and overhead lift. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into…
Decisions, decisions. When did making health decisions become so challenging for me? Well, it began after I was diagnosed with ALS. Scheduling annual health screens and medical treatments became complex decisions. Even purchasing a new pair of sneakers came with specific considerations. ALS has created a whole…
ALS patients have many wants and needs to make life a little easier and more comfortable. We know we can’t get everything, but it doesn’t hurt to try. So here it goes. Our bodies were made to move; to be active rather than passive. Lack of movement leads to…
My brothers-in-law made me an incredibly kind offer while I was caregiving for my late husband, Jeff, as he was living with ALS. They offered to spend a long weekend in January caring for him at our home while I went on a getaway. They wanted to fly…
A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…
For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the ALS community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS…
A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS. My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories…
Throughout our relationship, my late husband, Jeff, was the partner who most enjoyed taking care of people and things. He built wooden furniture and personal gifts, tended to flowers, and prepared meals from scratch. He got a great deal of satisfaction from going above and beyond for people. Jeff was…
