Becoming Financially IndependentThe other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job...reactions2comments
Wheelchair Recommendation and Favorite FeaturesAs someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial...reactions1comment
Personal HeroesWe asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with...reactionscomments
Body PerceptionOne of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back...reactions1comment
Escaping the Cold WintersMike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his...reactionscomments
If You Fall, I’m Going Down With YouMy sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and...reactions1comment
5 Tips for Dating with a DisabilityThe dating landscape with social media and dating apps is not always an ideal way to meet others when you have a...reactions1comment
Empty Nest AgainAs any typical parent will experience the day when your last child leaves the childhood home. At this point we are called...reactionscomments
Disability Costs Too MuchI often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable...reactions1comment
Jessie's Bucket List - What is on Yours?Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie...reactions1comment
Letting Go of a PCALike any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this...reactions4comments
5 Disability Tips for Attending Large Venue EventsWho doesn't like going to a concert, performance, or sporting event? The problem is, it's not always easy to attend events at...reactionscomments
How Do You Handle Cold Weather?We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do...reactionscomments
Hurt Back and Guilty ConsciousI’ve talked about the guilt I deal with in regards to the amount of work people need to exert in order to...reactions1comment
Needing My Husband's Help in a Public RestroomI can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms...reactions1comment
Making Sacrifices or Accommodating Each OtherRelationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate...reactionscomments
Why am I Always the Party Pooper?I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and...reactionscomments
Celebrating the Holidays and Special OccasionsWe asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted...reactionscomments
Hope for the New YearIt’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new...reactionscomments
An Overview of Disability Rights LawsThe US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain...reactionscomments
