Columns

I set my husband, Todd, up on his computer with his HeadMouse and sip-and-puff clicker. ALS has compromised his breathing, so I put on his noninvasive ventilator. I call my mom, who lives next door. She will keep her mobile phone in her pocket. If Todd needs anything, he…

“Will you still need me, will you still feed me, When I’m sixty-four” Paul McCartney wrote the song “When I’m Sixty-Four” four decades before reaching that age himself. McCartney admitted that the number was chosen arbitrarily. He later quipped during an interview that 65 would have been a…

Throughout February, many patient columnists like me who write for Bionews, the parent company of this website, are writing columns recognizing Rare Disease Month, which culminates in Rare Disease Day on Feb. 28. Not only are we encouraging our readers to reach across patient community lines to learn…

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…

Since February is known as the month of love, I’d like to shower some love on all the ALS caregivers around the world. Add a special shoutout to family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS. It’s a challenging responsibility…

I’ve been worried about leaving my husband, Todd, who has ALS, alone after his close call with his breathing last week, but he said he would be fine while I ran to town. I needed to pick the kids up from school and take our daughter to a dentist…

During my professional years working in a hospital environment, we had to be familiar with using medical jargon. Some words sounded odd to my nonmedical ears, while others had double meanings. A few favorites I still remember are “idiopathic,” which refers to something with an unknown cause, and “unremarkable,” which…

In “12 Rules for Life: An Antidote to Chaos,” Jordan Peterson writes, “People can survive through much pain and loss. But to persevere they must see the good in Being. If they lose that, they are truly lost.” Now that my husband, Todd, has ALS, I am more attuned…

“Keep off the path, Beware of the gate, Watch out for signs that say ‘hidden driveways.’ Don’t let the chlorine in your eyes, Blind you to the awful surprise, That’s waitin’ for you at, The bottom of the bottomless, Blue, blue, blue pool, You’re livin’ in your own private Idaho.”…

ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament, Now, 11 years later and with still…