If I Knew Then What I Know NowWhen I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to put a positive (but also realistic) spin on... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments4 comments
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 awkward happens. For instance, that time when my... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments0 comments
Making Friends as an Adult with SMABack in elementary school, the worry about making friends lingered—I feared judgment based on my wheelchair and back brace. My hope was always that my peers would see me just... By Jennifer Greer3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Would You Invent?Plato said, “Necessity is the mother of invention.” We asked our Health Leaders, who live with spinal muscular atrophy, "What accessibility-related invention would you like to see, that would make... By SpinalMuscularAtrophy.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Alexa Became One of My Disability Must-HavesI was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you love can get paid to help take care... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments2 comments
I Was a Guinea PigIn the 1990s, I found myself unwittingly becoming a pioneer in the quest for advancements in SMA care. As a person living with spinal muscular atrophy (SMA), the landscape of... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Becoming MeAlthough we are only a few months into the year, as I write this, I've learned so much. About a week ago, I decided to get rid of, by unsubscribing... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments0 comments
Valentine's Day and SMAThe holidays always bring their own set of challenges, and Valentine’s Day is no different for me. Throughout my life, I've never dated anyone, but I still hold onto the... By Jennifer Greer2 min readBookmark for laterReactions 0 reactions Comments3 comments
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 months, I entered the public school setting as... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Rocking the Solo LifeWell, folks! It's been a wild ride – a decade of liberation from marriage and an interesting tango with spinal muscular atrophy (SMA). Who needs a partner when you can... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Worst Case Scenario: a Cold*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this past Thursday and then finally felt better today... By Kellie Cusack4 min readBookmark for laterReactions 0 reactions Comments1 comments
What A Small Cold Can DoIn October, my mom caught a little cold during a trip to her doctor's office. She suffered a sore throat, cough, runny nose, and a mild migraine for about four... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
My Battle With Chronic Pain and SMAIn my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the growing-up process with SMA, something we all had... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments1 comments
The Evolution of Adaptive Showering EquipmentMany people with disabilities, like spinal muscular atrophy, may struggle with self-care necessities, especially bathing/showering when access is hard. My situation was no different, and I want to describe the... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments2 comments
Sorry To Miss The CureSMA ConferenceI really wanted to go to The CureSMA Conference this year! I have no idea why Mike didn’t sign us up. I’m still so mad at him! Why on earth... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments3 comments
Struggling to Find the Right FitIt can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where I am getting out of always wearing sweatpants... By Jake Saxton2 min readBookmark for laterReactions 0 reactions Comments1 comments
OverwhelmedLast year, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube. I want to be friends... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips for a Successful Night Out as a Wheelchair UserGoing out can be nerve-wracking for anyone, but when you're a wheelchair user with spinal muscular atrophy, the stress can multiply. From accessibility concerns to dealing with a crowd of... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
Friends That Travel Together, Stay TogetherPeople say travel friendships can last a lifetime. With traveling, it shows how solid your friendships are because you will know how they are through day and out. Just like... By Ainaa Farhanah2 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Ready in the MorningGetting ready in the morning when you have spinal muscular atrophy (SMA) can be challenging because of the lack of strength and inability to move much, but with a little... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments