Samantha Lackey...Samantha was previously an advocate on SpinalMuscularAtrophy.net. Samantha is a first-time mom to Stella, who has spinal muscular atrophy (SMA) type 1...
Top Tips for Hiring a PCA...Let’s begin with what a PCA is, and what a PCA is not. A personal care assistant should entail three things: Personal...reactionscomments
Managing Caregivers...When 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 Heaven...One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had...reactions1comment
Self-Care Routine...When 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 Equipment...Growing 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 PCA...Suzanne 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 Swim...Sometimes 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 Body...I remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical...reactions6comments
Frustrations Around Able-Bodied People Using the Accessible Bathrooms...If you’re following along, this is Part 4 of my story. The first three articles are linked below: The event that prompted...reactionscomments
Thanksgiving & Difficulty Swallowing...So, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered...reactions1comment
Fashion Within the Disability World...This is a topic that I think the world is expanding upon: fashion within the disability world. For a long time, I...reactions1comment
Tips for Talking to Your Doctor About SMA...Most people living with spinal muscular atrophy (SMA) need care from multiple doctors. Regular doctor’s visits help you or your child manage...reactionscomments
Giving Up Driving...I touched on this topic a little in my article “How Expensive Is That Minivan.” I drove without any driving adaptations for 24...reactionscomments
Preparing For the Working World ...With college behind him, it was now time for Mike to apply for that first job in the business world. I know...reactions1comment
How To Be a Good Friend...Recently I’ve read a few posts regarding being disabled and having friends. One was in a Muscular Dystrophy Facebook group where someone...reactionscomments
Healthy Holiday Boundaries...We all just survived a pandemic. That is no small feat! As the holidays come around, we are going to be surrounded...reactionscomments
SMA Mama – Preconception, Pregnancy, and Postpartum...I have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer. I use a manual wheelchair and power...reactionscomments
Traveling With SMA: What to Consider...Traveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA)...reactionscomments
