Finding a Disability Friendly Hobby...Recently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was...reactions6comments
Grips for a Wheelchair Joystick...Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that...reactions1comment
Stop Surviving and Start Living...Recently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in...reactions2comments
Feeling Left Behind at Times...With most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel...reactions1comment
Accessible Summer Activities for Kids with SMA...Summertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads...reactionscomments
Removing Wisdom Teeth While Dealing with Respiratory Issues...Around the time I got my g-tube, I also realized that I was having problems with my jaw and teeth. After I...reactions1comment
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
Dating and Intimacy With SMA...Having spinal muscular atrophy (SMA) does not mean it is impossible to date or have sex. Adults with SMA still have happy...
"When I’m an Adult, I Will Walk"...Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This...reactions4comments
My Process For A New Wheelchair...Hello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't...reactionscomments
On Being Told To Live Independently...“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how...reactions1comment
Types of Spinal Muscular Atrophy...Spinal muscular atrophy (SMA) is a group of inherited disorders. SMA causes certain muscles to become weak and waste away (atrophy). SMA...
Raising Awareness About Early Diagnosis and Immediate Treatment...As someone living with spinal muscular atrophy (SMA), I know firsthand the challenges and triumphs that come with this condition. That's why...reactions1comment
Why Are You in a Wheelchair?...This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
If I Knew Then What I Know Now...When I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
Summertime With SMA...Good old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
The Number One Beach Accessory You Might Not Know About...The beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment...reactionscomments
Debunking Myths About Living With a Rare Disease...Since spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to...reactionscomments
SMA Awareness Month 2022...August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading...reactionscomments
A Sense of Belonging...I can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible...reactionscomments
