Genetic Counseling...I was born in the 1970s and, while genetic counseling started in 1969, it wasn’t what it is today. There was no known history of any kind of muscular dystrophy... By Mike Noon3 min readBookmark for laterReactions 0 reactions Comments0 comments
Using Your Disability to Impact Lives...The beauty of sharing our stories lies not just in the telling, but also in the impact they can have on others. My recent journey to a different state for... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Finding Humor in the SMA-PCA Bond...Living with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal care assistant (PCA), adds some much-needed comedy and... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Personal Growth...Being born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled people. As a child, we experience this from... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments2 comments
Getting Back In the Pool After Surgery With SMA...Having spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense of freedom, nothing beats the sheer delight of... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
Art and SMA...12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to paint these? I make art for a living... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments0 comments
Pros and Cons of Owning an Accessible Van...I feel as though having a disability is a constant balancing act of freedom and cost. Owning an accessible van can be a ticket to freedom for many with mobility... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments5 comments
Why Are Car Repairs So Expensive?...Maintaining a reliable vehicle is vital for individuals living with spinal muscular atrophy (SMA) to maintain their independence and overall well-being. Unfortunately, vehicle repairs can often be a financial burden... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Social Media and Mental Health...Social media can be a game changing tool for anyone, especially people in the SMA and disabled communities. I've chatted about this before – it allows homebound individuals to make... By Jennifer Greer2 min readBookmark for laterReactions 0 reactions Comments4 comments
Getting Out Of My Head...I know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For me, this has helped me to survive when... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments2 comments
My Ewok Companion...In the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These stories often involve the rescue of dogs from... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments1 comments
Support Animal...Do you have a support animal/pet? What do you love about them? Would you recommend a support animal for other SMA patients?...Reactions 0 reactions Comments0 repliesTips & Advice
The Joy of Finding My Four-Legged Support...Life has its moments – some challenging, some joyful. As a full-time electric wheelchair user with limited arm mobility due to spinal muscular atrophy, I've experienced my fair share of... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
Grieving Over a Spoon and Fork...Who would've known that a seemingly simple pair of utensils could carry such emotional weight? The other night, my sister invited us over to her house for dinner. This wasn't... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments1 comments
Self Advocacy...Do you consider yourself an advocate for yourself? If so, how did you start advocating? How has it impacted your life with SMA?...Reactions 0 reactions Comments0 repliesTips & Advice
The Importance of Wearing Your Seatbelt with SMA...In my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my teeth. Annoying? Undoubtedly. A safety measure? Absolutely. As... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
The Gift of Self-Advocacy: Teaching Kids To Use Their Voice...Growing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching me to be my own advocate. This journey... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 put a positive (but also realistic) spin on... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments4 comments
Diffusing Awkwardness With Humor...When living with spinal muscular atrophy, there are moments when you're getting some help dressing or with personal care, and something hilariously awkward happens. For instance, that time when my... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments0 comments
Making Friends as an Adult with SMA...Back in elementary school, the worry about making friends lingered—I feared judgment based on my wheelchair and back brace. My hope was always that my peers would see me just... By Jennifer Greer3 min readBookmark for laterReactions 0 reactions Comments0 comments