Near Death Experience!Let me tell you the story of the time I almost died...twice. As a person with a spinal fusion and severe scoliosis...reactionscomments
Insurance DenialsI always hoped and wished for a day that we would see incredible achievements in the medical world for the SMA community...reactions2comments
Uncovering State ProgramsI have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion...reactionscomments
Smart IndependenceAs an independent disabled adult, one of my fears is that I will be alone with a caregiver and the caregiver will...reactions2comments
An Open Letter to Newly Diagnosed ParentsIf you are reading this, you have probably been recently told that your lovely child has spinal muscular atrophy (SMA). You probably...reactions1comment
A Young Man’s Social YearsEvery parent can relate to those years of watching your adult child living those carefree years after college, beginning their working careers...reactionscomments
New Year, New CareWhen the New Year rolls around, everyone reflects on the previous year and sets goals for the new one. For those of...reactionscomments
Thank You for Taking Our Survey!We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with spinal...reactionscomments
Getting Christmas Sorted with SMAAs a 31-year-old with SMA, Christmas is always pretty exciting. Ever since I was little, I’ve adored the sparkle of December. But...reactions1comment
How My Elf On The Shelf Turned Into Something MoreMy daughter Stella is two and a half years old. Lately, Stella's development has revolved around exploration. Continuing to push her limits...reactions1comment
Why is He in a Wheelchair?"Why is he in a wheelchair?" If I had a dollar every time I heard that phrase, I would be rich. I...reactionscomments
Top Tips for Hiring a PCALet’s begin with what a PCA is, and what a PCA is not. A personal care assistant should entail three things: Personal...reactionscomments
Managing CaregiversWhen I was of college age, I was fortunate enough to attend a school that at the time offered a dormitory providing...reactionscomments
A Conversation Between Myself and HeavenOne night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had...reactions1comment
Self-Care RoutineWhen I first began to read blogs and see posts about others doing their “self-care,” I remember my first thought: “Well I...reactionscomments
Hiding Medical EquipmentGrowing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP...reactionscomments
When Your Significant Other Becomes Your PCASuzanne and I met over 6 years ago. We both had an attraction to each other. Our friendship grew into a relationship...reactionscomments
The Freedom to SwimSometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and...reactions1comment
Office of Vocational Rehabilitation (OVR)I mentioned this program briefly before. This was extremely helpful to our situation when we first were introduced to it in 1995...reactionscomments
Talking With Children Who Have SMA About Their BodyI remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical...reactions6comments
