Accessible Housing Tips...Have you made changes to make your house more accessible for someone with spinal muscular atrophy? If so, what changes have you made? Join the conversation....Reactions0reactionsComments0 repliesTips & AdviceAssistive Equipment
Personal Care Assistants...Many people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal preparation and feeding, to transportation and more. For...Reactions0reactionsComments0 comments
Traveling and SMA...Traveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala, Mexico, Cuba, Brazil, India, Vietnam, Malaysia, China, Japan...Reactions0reactionsComments0 comments
Living My Life as a Computer...Hello, everybody! You can call me Smurf because that was given to me from my friends that I have met over the years. Anyways, please excuse how I write this...Reactions0reactionsComments5 comments
Preparing Emotionally with a Child with Spinal Muscular Atrophy...It is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the twins, my daughter, Jessie was born with Spinal...Reactions0reactionsComments0 comments
Tips for Accessible Housing...We asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps to make your house more accessible? If so...Reactions0reactionsComments0 comments
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 either on my computer or watching TV. And...Reactions0reactionsComments6 comments
Raising a Girl...I have lived a life of always confirming my own personal safety. Once I had a child, the awareness grew exponentially. My first experience of personal awareness started in my...Reactions0reactionsComments2 comments
Maintaining Friends While Living With a Disability...This topic recently came up while talking with other writers from this page. I am very outgoing and have always loved being out doing things. Well, that hasn’t always been...Reactions0reactionsComments3 comments
Taking Care of Myself as Mike’s Full-Time Caregiver...In March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It was the beginning of the pandemic and Mike’s...Reactions0reactionsComments0 comments
Air Travel...My biggest advice for traveling with SMA through airfare is to communicate, communicate, communicate. OVER-communicate. At least for me, I hate feeling like a burden and like I need to...Reactions0reactionsComments0 comments
Tough Days...Some mornings you wake up and you just know the day is going to be tough. You want to stay in bed, in the warm comfort of your home, and...Reactions0reactionsComments1 comments
Eating Out...As I’ve gotten older and my disease, spinal muscular atrophy, has progressed a little more, eating out started to become more of a daunting task. However, it’s really important to...Reactions0reactionsComments0 comments
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 people to inaccessible places like the beach, going...Reactions0reactionsComments0 comments
Fear of Death Because of SMA...My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as a young child. I even remember hearing the...Reactions0reactionsComments2 comments
Accessible Summer Fun...Share your tips for accessible summer activities for kids OR adults. What do you do to enjoy the 'good old summertime?'...Reactions0reactionsComments0 repliesExercise & Activity
Finding Disabled Joy...So many of my friends who are disabled have spoken about the magic of being in a room full of people who are just like you. Having SMA, and working...Reactions0reactionsComments0 comments
What to Bring to the Hospital...Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when...Reactions0reactionsComments0 comments
The 2024 Social Health Awards Program...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards...Reactions0reactionsComments0 comments
Making Forever Friends...Making friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty outgoing person. I was always extremely sociable, loved...Reactions0reactionsComments0 comments