Fears of the BiPAPLiving with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been...reactions1comment
My Experience With Massage Therapy and SMAI wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving...reactions2comments
Transitioning to My First Electric WheelchairI’ve been using my new Permobil wheelchair for just about a month now. The last few months that I was using my...reactions2comments
The Importance of StretchingBeginning in my early 30’s, SMA started to take away a lot of my strength. As a result, I began sitting more...reactionscomments
Feeling Emotional About Things People SayI gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with...reactions3comments
Patronizing CommentsI was on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment...reactions2comments
The Silent Battle and ResilienceIt’s a bittersweet reality when the person who has always been your guiding light becomes the one needing care themselves. In August...reactions1comment
How I Find Worth in CaretakingTaking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I...reactionscomments
Challenges of Being Your Partner's Full-time CaregiverCaring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience. One of...reactions1comment
Why am I Always the Party Pooper?I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and...reactionscomments
Thanksgiving & Difficulty SwallowingSo, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered...reactions1comment
Tips and Tricks for Day TripsMy friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many...reactionscomments
Finding Humor in the SMA-PCA BondLiving with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal...reactions1comment
Diffusing Awkwardness With HumorWhen living with spinal muscular atrophy, there are moments when you're getting some help dressing or with personal care, and something hilariously...reactionscomments
Navigating My Treatment Journey as an Adult with SMA – 5 StepsMy journey to getting treatment was not a conventional one. I had not been seen for my SMA in over 13 years...reactions1comment
Losing Weight With SMAWhen people think about losing weight, they often envision crafting an exercise routine tailored to their body's needs — a regimen that...reactions2comments
My Journey With EvrysdiHi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision...reactionscomments
My Spinraza ExperienceI just want to remind everyone that their medical journey will be different from everyone else’s. I share this story in hopes...reactionscomments
Red OctoberAny sports fan in the Philadelphia area will understand the phrase Red October. For those of you who are not lucky enough...reactionscomments
Adapting and Fitting InWe all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals...reactions2comments
