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...Reactions0reactionsComments0 comments
Daily Routines...What is your daily routine? Have you found that a routine helps you manage your SMA? Share below....Reactions0reactionsComments0 repliesTips & 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...Reactions0reactionsComments2 repliesAwarenessFriends & 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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments7 comments
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...Reactions0reactionsComments2 comments
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...Reactions0reactionsComments2 comments
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...Reactions0reactionsComments2 comments
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!...Reactions0reactionsComments0 repliesIntimacy & 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....Reactions0reactionsComments0 repliesDisabilityTips & Advice
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments27 repliesCopingDepression
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...Reactions0reactionsComments3 repliesDiet & 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments3 comments
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...Reactions0reactionsComments0 repliesMental 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...Reactions0reactionsComments1 comments
Mental Health Awareness Month...May was designated National Mental Health Awareness Month in 1949 by the United States Congress due to the increased number of veterans suffering from mental illnesses after returning from World...Reactions0reactionsComments0 comments
Preventing Pressure Injuries for wheelchair bound...Hi SMA community, I am a caregiver for my 70yr old father diagnosed with SMA 3. He is currently receiving Spinraza. Our biggest challenge in keeping him healthy is preventing...Reactions0reactionsComments3 replies
The Promise of Treatment...Our family journey began when Mike was five years old. After a barrage of testing and doctor appointments, we were given the diagnosis of Muscular Dystrophy. The name of just...Reactions0reactionsComments0 comments
