Financial Independence, The Food EditionLet’s talk about financial independence. As you know from my first article here, financial freedom and independence are so hard. With Supplemental Security Income (SSI) limits, I can feel trapped...Reactions0reactionsComments0 comments
My Journey to BiPapTwo years ago, I was hit with some bewildering symptoms. A loud roaring noise invaded my left ear during a visit to my sister in Maryland over the summer. I...Reactions0reactionsComments0 comments
Navigating Medical Procedures With SMAIf you live with spinal muscular atrophy (SMA) of any type, then you know how difficult it can be to have medical procedures done. There’s a lot of logistics and...Reactions0reactionsComments0 comments
The Game Changer-BiPAPI remember this day well. The start of an unbelievable journey. Who would have thought I needed to wear a BiPAP? It has never come to my mind. I wore...Reactions0reactionsComments0 comments
School Safety Drills as a Student with SMADuring my school years, active participation in safety drills, including fire and tornado drills, was mandated. For the average able-bodied child, these drills seemed straightforward. When the alarm sounded, students...Reactions0reactionsComments0 comments
Navigating Large Crowds In A WheelChair: My First Concert ExperienceI have anxiety about being surrounded by large groups or crowds of people. But when Taylor Swift announced her 1989 World Tour was coming to Maryland a few years ago...Reactions0reactionsComments0 comments
Nighttime Tips and TricksBased on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips and tricks that really help me. I would...Reactions0reactionsComments0 comments
First Home RenovationBuying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that you will need to make some renovations. If...Reactions0reactionsComments0 comments
My Evrysdi Journey So FarOn December 23, 2016, I celebrated my birthday, marking a momentous occasion: the FDA had approved Spinraza as the inaugural treatment for spinal muscular atrophy (SMA). I recall lying in...Reactions0reactionsComments0 comments
Traveling Shower HacksOne of the most common questions I get asked regarding my frequent traveling is how I shower. Of course, this depends on our lodging situation, whether it be a hotel...Reactions0reactionsComments0 comments
Having Able-Bodied Siblings As Someone With SMAI am the youngest of my siblings at twenty nine years old. I have two step-brothers and one step-sister. Due to genetics, I am the only one in my family...Reactions0reactionsComments2 comments
Learning the Hard Way: Ensuring Safety for Students with DisabilitiesWhen I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She knew all about me, my specific needs, and...Reactions0reactionsComments0 comments
My Process For A New WheelchairHello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't afford a van, (why are they so ridiculously...Reactions0reactionsComments0 comments
Fears Of Flu and FeversAs summer eventually becomes fall and winter, bringing with it an increased risk of illness, those of us living with spinal muscular atrophy (SMA) face unique challenges. While we often...Reactions0reactionsComments0 comments
Discrimination SituationAround five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and my tooth hurt. We had just moved to...Reactions0reactionsComments0 comments
The Advocacy Issues That Matter To MeI feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights...Reactions0reactionsComments0 comments
Why Advocacy Is Important to the SMA CommunityFor families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving lives. Advocating for SMA has a ripple effect...Reactions0reactionsComments0 comments
Things That Make Me Angry About SMAHaving a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly, it can be brutal inside. And with that brutality...Reactions0reactionsComments0 comments
Hug Me Not My Wheelchair PleaseI’ve been driving a power wheelchair since the age of two. My wheelchair has been a part of my life and a second part of my body since then. It...Reactions0reactionsComments0 comments
Becoming Okay With My AnxietyIn middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that “fitting in” phase in middle school. SMA has...Reactions0reactionsComments0 comments