Wheelchair Accessible Seating Hacks...Who 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...reactions3comments
ABLE Accounts...Living on disability income often means living at or below the poverty line. Qualifying for assistance requires having limited resources. That reality is changing with ABLE accounts. ABLE Accounts are...
Adaptive Fashion and the Double Take Fashion Show...Hello 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...reactionscomments
Define Love...Define 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...reactionscomments
Daily Routines...What is your daily routine? Have you found that a routine helps you manage your SMA? Share below....reactions1replyTips & Advice
Accessibility Etiquette...What guidelines need to be written in an “accessibility etiquette” guide? What drives you crazy about the way people interact with you as someone with a disability? How do you...reactions2repliesAwarenessFriends & FamilyMyths & Misconceptions
Medicare Denials and Wonderful Nonprofits...I 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...reactions1comment
Independence and Accessibility...Accessibility 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...reactions7comments
Transitioning to My First Electric Wheelchair...I’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...reactions2comments
Therapy and Mental Health with SMA...Warning: 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...reactions2comments
Living With a Disability: Movie Recommendations...We 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...reactions2comments
Are You in an Interabled Relationship?...What is your experience like being in an interabled relationship? If you need inspiration, read Suzanne's perspective: https://spinalmuscularatrophy.net/living/interabled-relationships Share below!...reactionsrepliesIntimacy & Relationships
Accessibility Challenges...Have you faced accessibility challenges lately? Maybe when trying to go out and do something social? We want to hear your stories here. Share below....reactionsrepliesTips & AdviceDisability
Dressing Room Experience as a Wheelchair User: Tips and Personal Insights...Trying 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...reactionscomments
Managing Depression...I want to understand how personal with SMA cope with mental depression when you lose the ability to do certain things which you were able to do previously? for example...reactions28repliesDepressionCoping
Food alternatives...I am a SMA type 3 person and onset started around age 13. I am currently 38 and ambulatory, though it is annoying and painful when I walk for long...reactions4repliesDiet & Nutrition
Interabled Relationships are Just Like Any Other Relationship...Love 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...reactionscomments
An Accessible Cruise Vacation...I just went on a birthday cruise on the Disney Wish with my mama! I wanted to share about accessibility and what helped the most to make the cruise the...reactions3comments
May is Mental Health Awareness Month!...It's ok to not be ok. It's valid to feel all the highs and lows that life hands you, especially when living with a rare disease. How has your mental...reactionsrepliesMental Health
Fears of the BiPAP...Living with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been significant advancements in pulmonology for this rare condition...reactions1comment
