Just Let Me Return ThisHome delivery of groceries and online shopping became a normal occurrence for many people during the COVID-19 pandemic. As someone with mobility issues because of my spinal muscular atrophy, my... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Balancing Life When You Are IllLife with SMA has two halves - the mobility half, and the illness half. Managing the mobility issues and illness of spinal muscular atrophy is something we all focus on... By Michaela Hollywood3 min readBookmark for laterReactions 0 reactions Comments1 comments
Talking to Others About SMAWhat are your tips for talking to your family and friends about SMA? What are your tips for talking to your coworkers or casual friends about SMA? Mike: This is... By SpinalMuscularAtrophy.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Tips and Support at the 2023 Cure SMA ConferenceLast year was the first in-person Cure SMA conference post-pandemic, and unfortunately, I couldn't go due to health issues. I was absolutely devastated, so to finally be able to go... By Kellie Cusack4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 running around and a spouse working. I simply... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
This is How True Crime Podcasts StartThis is how true crime podcasts start: As someone who travels with my power wheelchair and who cannot transfer easily for trips, I always plan far in advance for wheelchair... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Managing EnergyI often struggle with low energy, year-round, but especially in the winter. I'd like to share some things that have helped me and hopefully will help you. I get low... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Challenges of SMA and Its ProgressionLiving with a chronic condition like spinal muscular atrophy (SMA) can have significant social and emotional impacts on individuals and their families. The challenges presented by SMA, particularly in its... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments1 comments
Accessibility EtiquetteWe asked our Health Leaders who live with spinal muscular atrophy: "What needs to make it into an 'accessibility etiquette' guide? What drives you crazy about the way people interact... By SpinalMuscularAtrophy.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
Embracing Freedom: Swimming with SMAAs someone with spinal muscular atrophy, swimming has always held a special place in my heart. Ever since I was a child, being in an electric wheelchair, I was immensely... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Loss in the SMA CommunityMy SMA community was struck hard this winter season by a string of deaths. Blow by blow it broke me. My friend Kim was the worst blow by far. I... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Managing Thoughtless CommentsIf you use a wheelchair or scooter like me, because of spinal muscular atrophy, I am sure you have heard all of the comments. Wow, that looks fun. Wanna race? ... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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, “Nothing. She just sits at home. Doing nothing.”... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments0 comments
Accessible Getaway TipsWe asked our Health Leaders for some summertime advice: Do you have a summer vacation or getaway planned? What makes for the best, most refreshing, and most accessible vacation? Here's... By SpinalMuscularAtrophy.net Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
CourageSometimes I find my confidence and insecurity going hand in hand. I know this might sound strange, but it's true. I don't want to speak for all of us, but... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 the primary challenges of being a full-time caregiver... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments
Wheelchair Accessible Seating HacksWho has dealt with the frustration of securing wheelchair-accessible seats? It can be a pain in the neck sometimes. Over the years I’ve gone to hundreds of sporting events and... By Mike Noon3 min readBookmark for laterReactions 0 reactions Comments2 comments
Adaptive Fashion and the Double Take Fashion ShowHello everyone! Today, since it's officially June as I write this, and the warm weather is here, (my favorite season!) I wanted to talk about adaptive fashion and how this... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Define LoveDefine love. It would be a broader definition for everyone. As I moved into the adulthood phase I started to get involved in more things. Of course one of the... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments0 comments
Medicare Denials and Wonderful NonprofitsI recently wrote about my first wheelchair seating clinic experience. Since I wrote that article I was denied by Medicare for the seat elevator. Medicare evidently has a policy in... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments