Articles

I often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable medical equipment and I shouldn’t want for more...

Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie had a bucket list also. When she was...

Like any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this position is very close to home. Both literally...

Who doesn't like going to a concert, performance, or sporting event? The problem is, it's not always easy to attend events at large events while living with a disability, such...

We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do they have go-to workarounds to avoid going out?...

I’ve talked about the guilt I deal with in regards to the amount of work people need to exert in order to assist me throughout the day because of my...

I can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms. However, it wasn’t until I got married that...

Relationships are all about give and take.  We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate and co-worker to name a few.  When...

I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and GI issues. With the diagnosis came orders of...

We asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted to make special occasions easier? What is the...

It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new year for themselves and others living with spinal...

The US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain rights under these laws. The Americans with Disabilities...

I'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I didn't know anyone who was disabled personally until...

Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily chores, work, school, family, and friends gets to...

The time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is among us. I know that most parents do...

I’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon.  It was always an emotional experience for me.  My senior year of high...

Conditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits from the US Social Security Administration (SSA) can...

Life consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life would be extremely boring if we never had...

Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health. It also aims to expand opportunities for health...

I wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to my circumstances. Most importantly growing up in a...