Shopping for Clothes with a DisabilityOne of the biggest challenges of living with SMA is buying new clothes, especially pants. For me, it’s not possible to go...reactions2comments
Weight: Freshman 15 to the Covid 19Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman...reactionscomments
Helpful Government ProgramsDepending where you live, your country or state may have different programs that you can access to help you manage disability caused...reactionscomments
SMA Awareness Month Giveaway 2022The SMA Awareness Month 2022 Giveaway is now closed. Thank you for your interest! August is Spinal Muscular Atrophy (SMA) Awareness Month...reactionscomments
SMA Awareness Month 2022August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading...reactionscomments
Personal Care AssistantsMany people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal...reactionscomments
Traveling and SMATraveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala...reactionscomments
Preparing Emotionally with a Child with Spinal Muscular AtrophyIt is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the...reactionscomments
Tips for Accessible HousingWe asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps...reactionscomments
Finding a Disability Friendly HobbyRecently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was...reactions6comments
Raising a GirlI have lived a life of always confirming my own personal safety. Once I had a child, the awareness grew exponentially. My...reactions2comments
Maintaining Friends While Living With a DisabilityThis topic recently came up while talking with other writers from this page. I am very outgoing and have always loved being...reactions3comments
Taking Care of Myself as Mike’s Full-Time CaregiverIn March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It...reactionscomments
Air TravelMy biggest advice for traveling with SMA through airfare is to communicate, communicate, communicate. OVER-communicate. At least for me, I hate feeling...reactionscomments
Tough DaysSome mornings you wake up and you just know the day is going to be tough. You want to stay in bed...reactions1comment
Eating OutAs I’ve gotten older and my disease, spinal muscular atrophy, has progressed a little more, eating out started to become more of...reactionscomments
Accessible Summer Activities for Kids with SMASummertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads...reactionscomments
Fear of Death Because of SMAMy parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as...reactions2comments
Finding Disabled JoySo many of my friends who are disabled have spoken about the magic of being in a room full of people who...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
