Columns

The Many Challenges of Getting Out

Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most…

Time Travel With ALS: What If We Could?

I’ve been thinking about time travel after watching a couple movies with my husband, Todd, who has ALS. We enjoyed “About Time” during one of our date nights and “The Time Traveler’s Wife” during another. Both movies have subplots that involve love, marriage, and children. If time travel…

Babbling On About Current Events

“So, round and around and around we go, Where the world’s headed, nobody knows. Oh, great googa-mooga, can’t you hear me talking to you? Just a ball of confusion, Oh yeah, that’s what the world is today.” The Temptations song “Ball of Confusion” was released in 1970, following the…

2 Things That Make My Life With ALS a Little Safer

Among the many challenges of living with ALS are the physical symptoms of muscle stiffness and weakness. I have both. During my first year with ALS, I’d wake up and walk into the bathroom doing a good imitation of the clumsy, lurching steps of Frankenstein’s monster. On other days,…

The Pressure of Caregiving Makes Self-care Difficult

Knowing that so much is riding on me creates a lot of pressure. I don’t get sick days, vacation, or weekends off. Taking time off to attend to my health issues requires finding and paying for caregivers for my husband, Todd, who is paralyzed due to ALS. For example, I…

How I Fine-tune the Voices in My Head

I’ll admit to hearing voices — the voices in my head, that is. We’re all listening to our mental voices. It’s the constant chatter of inner dialogue or self-talk that leapfrogs through our thoughts, beliefs, questions, and ideas. Mostly the chatter is background noise, accompanying our daily activities and conversations.

Grabbing Bits of Beauty to Rejuvenate

“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug that he’s been fighting for two weeks. His lungs keep filling with mucus, and I keep clearing them out. Just when we think he’s on the road to recovery because he has a long stretch…

United We Stand, Divided I Fall

“It wasn’t me she was foolin’, ‘Cause she knew what was she was doin’, When she told me how to walk this way.” Run-DMC’s hip hop adaptation of the Aerosmith classic “Walk This Way” conjures up images of every therapy session I’ve had during the ALS portion of my…

Will This ‘New Normal’ Ever Feel Normal Again?

The other day while watching TV, I heard the newscaster announce, “We’re in the ‘new normal’ folks, and everybody wants to get out and travel again!” “Well, I don’t,” I thought, and just as quickly wondered, “Am I the only one who doesn’t feel comfortable yet to go out…

ALS + a Cold = Stress x 10

My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out. Todd had a sore throat and a runny…