Articles

The emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease. In reality, each parent feels that same initial...

Taking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I could get a break. As of right now...

When our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our family. Jessie was not meeting her age-related milestones...

In previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to college, I knew that I wouldn’t be able...

The other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job. I wanted to make sure that I would...

As someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial commitment but is a piece of our body...

We asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with SMA. Here are their responses: Michaela: My sister...

One of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back in 2017 I was lucky to be invited...

Mike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his condition with spinal muscular atrophy. When it’s cold...

My 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 joy. She's trapped in a body that won't...

The dating landscape with social media and dating apps is not always an ideal way to meet others when you have a disability like spinal muscular atrophy. These dating apps...

As any typical parent will experience the day when your last child leaves the childhood home.  At this point we are called “empty nesters”.  This is met with different emotions. ...

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...