The Frustrations of Broken EquipmentWhen living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is...reactions2comments
How Expensive Is That Minivan?I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of...reactions4comments
My Journey to Becoming A Mom in a Wheelchair: Part 1Finding the right doctor. As a little 4-year-old girl, I used to pretend I was pregnant. I would stuff a pillow up...reactionscomments
Transitioning To Adulthood with SMAI was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I...reactionscomments
Parenting From a WheelchairBeing a mother is an adventure in itself, but when you add two young children and a wheelchair to the mix, things...reactions1comment
Embracing Independence: My Journey with IncontinenceGrowing up with spinal muscular atrophy (SMA) and relying on a wheelchair, my daily life was an intricate dance of navigating the...reactions2comments
Getting Comfortable In My StyleLiving with spinal muscular atrophy (SMA) brings its own set of challenges. Some challenges are glaringly obvious. Others play out behind the...reactionscomments
The Importance of Wearing Your Seatbelt with SMAIn my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my...reactionscomments
Perks of Living With SMASome might think living with spinal muscular atrophy (SMA) is all bad. That life is full of doom and gloom, but I...reactions4comments
Things That Make Me Angry About SMAHaving a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly...reactionscomments
My Experience With SMA & AnesthesiaEvery two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in...reactionscomments
When Your Equipment BreaksMy worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether...reactionscomments
Transitioning to Adult CareSomething that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough...reactionscomments
Having Adult BracesPreviously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my...reactions1comment
Why I Love and Hate My G-Tube“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have...reactionscomments
What to Bring to the HospitalPreviously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so...reactionscomments
Planning a Family With SMA: Things to ConsiderIf you have a child with spinal muscular atrophy (SMA) or are a carrier of the SMA gene, you face some serious...reactionscomments
Preparing for Pregnancy When You Have SMA - Questions for You, Your Partner, and Your DoctorDeciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had...reactionscomments
Spinal Muscular Atrophy: Self-Care Tips for CaregiversSpinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of...reactions1comment
Modifying Your Home for More IndependenceHaving an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
