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 Comments6 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 Comments1 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 Comments1 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 Comments1 comments
Independence and AccessibilityAccessibility and independence go hand-in-hand but often times people do not realize that they rely on each other. I have spoken with many parents of children with disabilities like spinal... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments7 comments
Transitioning to My First Electric WheelchairI’ve been using my new Permobil wheelchair for just about a month now. The last few months that I was using my scooter became a little more difficult. I’ve been... By Mike Noon3 min readBookmark for laterReactions 0 reactions Comments2 comments
Therapy and Mental Health with SMAWarning: This post discusses my experience with mental health including anxiety and depression. Reader discretion is advised. I wanted to discuss my experience with therapy and mental health because it... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Living With a Disability: Movie RecommendationsWe asked our Health Leaders, "What good movies or television shows give a credible account of living with disability?" Here are some ideas for good things to watch when you... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments2 comments
Dressing Room Experience as a Wheelchair User: Tips and Personal InsightsTrying on clothes in a department store can be a daunting task for anyone, but it can be even more challenging if you use a wheelchair. As a woman with... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
Interabled Relationships are Just Like Any Other RelationshipLove knows no boundaries, and when it comes to interabled relationships, it is no different. Mike and I are in an interabled relationship. Basically meaning that Mike is disabled and... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments