Becoming My Boyfriend’s Full Time SMA Caretaker ...I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by...reactionscomments
How I Find Worth in Caretaking...Taking 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 Caregiver...Caring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience. One of...reactions1comment
Maintaining Relationships with Family and Friends...Caretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I...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 Swallowing...So, 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 Trips...My 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 Bond...Living 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 Humor...When 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 Steps...My 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 SMA...When 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 Evrysdi...Hi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision...reactionscomments
Comparing Spinraza and Evrysdi: Things to Consider...If you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are...reactionscomments
My Spinraza Experience...I just want to remind everyone that their medical journey will be different from everyone else’s. I share this story in hopes...reactionscomments
Red October...Any 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 In...We all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals...reactions2comments
A Family Affair...I have been writing about my spinal muscular atrophy journey for a few years now. I often wonder who out there is...reactions2comments
Traveling with SMA...When it came to my level of independence, I have been pretty lucky. An area of my life that was always a...reactionscomments
Trying to Experience an Inaccessible World...I have so many stories to tell regarding this topic. I have talked about how lucky I consider myself in previous articles...reactions3comments
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...reactions3comments
