My COVID ExperienceYou’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID...reactionscomments
The Expense of Maintaining a Power ChairI know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of...reactions1comment
Coming Up With A Treatment PlanRecently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some...reactions2comments
SMA and Snow Days I don’t think I am alone when I say that winter is just not our favorite season. I tend to run cold...reactionscomments
Finding the Right Healthcare TeamThere are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Managing Appointments for SMASpinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
The Power of ResearchFor those of us living with SMA, these are exciting times when it comes to research and FDA-approved treatments. I’ve always been...reactionscomments
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
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
Goodbye 2021, Hello 2022New year’s resolution: avoiding hospital stays. Preferably try to stay healthy and happy as much as I can. Because looking back at...reactionscomments
A Letter to My Parents: WE are Living with SMAParenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I...reactions4comments
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
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
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
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
Frustrations Around Able-Bodied People Using the Accessible BathroomsIf you’re following along, this is Part 4 of my story. The first three articles are linked below: The event that prompted...reactionscomments
Fashion Within the Disability WorldThis is a topic that I think the world is expanding upon: fashion within the disability world. For a long time, I...reactions1comment
