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
Now Closed: SpinalMuscularAtrophy.net GiveawayThe SpinalMuscularAtrophy.net Giveaway is now closed. Thank you for your interest! We're excited to announce a special giveaway for our community! We...reactionscomments
We Flow with the Changes in Our ChildYes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again...reactionscomments
The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Remembering the First DaysAs you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day...reactions1comment
The Journey BeginsI am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved...reactionscomments
