A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because…
Columns
When you have a rare disease like SMA, there comes a point when you have to consciously choose to trust your doctors. Luckily for me, I grew up with a robust medical team. I had access to a variety of well-renowned medical systems, including my beloved Gillette Children’s, M…
My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…
To say I didn’t attempt to set my complaint about a Sephora event up for success … would be a lie. If I was posting a video on TikTok, I obviously wanted people to see it. Time and effort are required to write a script, film, and edit,…
Because I live with spinal muscular atrophy (SMA), I have used a power wheelchair for most of my life. As far as I can recall, I have had seven different chairs, each one unique in its level of comfort, durability, and advanced functions. I’ve always had a complicated…
Being diagnosed with spinal muscular atrophy (SMA) 20-odd years ago was akin to a death sentence. But for the majority of my life with SMA, my health has been fairly stable. I’ve come to expect that, in the rare instances when I do get a cold, it will be…
In June, my parents and I huddled into our accessible van to head to the annual Cure SMA conference in Orlando, Florida. It’s always my most anticipated time of the year, filled with seeing friends, meeting new people, and spending late nights at the hotel lounge and by the…
I have a really special and pretty large friendship caregiving team, which I write about a lot in this column. Because I live with SMA, I need plenty of help, and I am grateful for all the wonderful friends who do so much. Mostly, my caregivers are…
There are often movies from our adolescent years that we continue rewatching no matter how old we get. They feel a bit like being wrapped up in a cozy blanket. I was definitely a Disney kid, so for me, “Camp Rock” and its sequel easily make that list,…
A generous neighbor recently urged me to pick tomatoes from his garden during his extended absence. Last Thursday, I obliged. Helen Baldwin plays “sorta farmer” after picking tomatoes at a neighbor’s farm. (Photo by Helen Baldwin) I shared some with a friend whose own tomatoes were a…
