I’d been anxious about our trip to Austin, Texas, for months. I look forward to the annual Cure SMA conference every year around June, but my excitement this time was tempered by a kind of deep-seated dread. I knew it would be fine, but I was still nervous. It…
Columns
Living with spinal muscular atrophy (SMA), I’m often met with this question from others: “How do you do it?” Upon learning how much goes into living a life full of health issues and weakness as well as SMA’s unpredictable nature, many often want to know how I manage…
“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li My sister, Jessie, and I have always shared the closest bond among my four wonderful siblings. Growing up, she understood that I couldn’t walk…
If you had a chance to fictionalize your life in a children’s book, how would you do it? Would you make the protagonist yourself, or would it be a loved one while you are relegated to a secondary role? Would you depict an ideal version of yourself, a character with…
My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency in…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement and…
It’s almost a wrap for this year’s May madness. Whew. For me, the month commences with the birthday of a favorite former student and ends with that of a good friend, as well as my nephew’s wedding anniversary. In between are Mother’s Day, spring sports, end-of-school chaos,…
Note: This column describes the author’s own experiences with naturopathy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started naturopathy over a year ago without much hope. I was living with a skin condition that no one but…
If you haven’t met this celebrity of the SMA community, I’d like to introduce you to my friend Angela Wrigglesworth-Titcombe. She’s 46 years old, has SMA, and is a fifth-grade teacher. She and her husband of six years, Justin, love to travel and enjoy…
Being diagnosed with a progressive neuromuscular condition like spinal muscular atrophy (SMA) often brings a range of physical challenges that significantly impact both the people with the disease and their loved ones. One of these challenges is scoliosis. According to the American Association of Neurological Surgeons,…
