How to Maintain Privacy with Around-the-Clock Care at HomeThe other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids...reactionscomments
Caring For A Loved OneBeing paid to take care of someone is a thought that never crossed my mind. Growing up in a large family and...reactionscomments
Looking forward to WinterDecember is officially upon us! At the end of the year, I reflect upon it. Usually, my seasonal depression really affects me...reactionscomments
My Favorite Accessible GiftsI know that, overall, finding gifts can be tough, especially finding things for someone who is disabled and has specific needs, like...reactionscomments
Braving Surgery: My Journey with SMA and Kidney StonesLiving with spinal muscular atrophy (SMA) Type 2 brings a unique set of challenges into my everyday life, but nothing has tested...reactionscomments
Who Knew Cats Are SMA Friendly?Throughout my childhood, dogs were a constant presence in my life. From Golden Retrievers to Yorkies and Chihuahuas, I was surrounded by...reactions3comments
Looking For the Little Joys with SMARecently, I began going to see a therapist for my depression and anxiety. I was diagnosed with major manic depressive disorder. This...reactionscomments
When My Wheelchair Gets Damaged Beyond RepairUsually, a situation like this would leave me in a very dark place. A few weeks ago, we were in a car...reactionscomments
SMA Impacts Job HuntingLast year, I decided I wanted to begin the process of looking for a job. Up until this point, I’d never worked...reactions2comments
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...reactionscomments
Tips for Talking to Your Doctor About SMAMost people living with spinal muscular atrophy (SMA) need care from multiple doctors. Regular doctor’s visits help you or your child manage...reactionscomments
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...reactionscomments
Teaching Your Kids About DisabilitiesFrom a very young age, I've been intimately familiar with the world of disabilities. Diagnosed with SMA type 2 at just 18...reactionscomments
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...reactionscomments
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...reactionscomments
"Most Likely Not To…" The Musical!On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I...reactionscomments
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...reactions2comments
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...reactionscomments
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...reactionscomments
First Home RenovationBuying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that...reactionscomments
