Living

I know every person‘s story is different, but the common denominator is the desire to be loved in most people's lives. As a disabled adult, the majority of questions I...

With most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel melancholy enough where I just want to share...

It broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result. But I know...

We left off when I was joining the board of directors at my local YMCA. If you haven’t read part one of this story, check that out first before reading...

Growing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy, respiratory medications, etc. But nothing was specific for...

Let’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member of this Y for over 10 years now...

Have you ever wondered, “Am I capable of being a business owner?” Living with SMA, we run into the constant challenges of, “Can I get into the building? Is my...

After waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist and were given a diagnosis of Friedreich's ataxia...

Today my household had to do something that owners of pets dread. We had to make the decision to end our dog’s pain through euthanasia. Odie was a very old dog...

The term that has always been used in the SMA community prior to treatment was a cure. Fight for the Cure, Cure SMA, Help Find a Cure! Treatment should not...

I like to equate hiring a new caregiver to committing to a good relationship. It takes more time in the beginning, but once everyone’s in the groove and comfortable, it’s...

When it came to my level of independence, I have been pretty lucky. An area of my life that was always a little difficult was traveling. After I graduated college...

I have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor regrets. My daughter, Jessie, was a twin with...

Spinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of specialized healthcare professionals. This includes doctors as well...

This is the question that every person with SMA will be asked more times than anything else in their life. Parents who have children with SMA probably hope that one...

I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers probably don’t remember the financial collapse back then...

There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges. It is important to find providers you are...

Mike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike joined the track team as their manager. The...

Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that are available, some of us are seeing improvements...

In the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much property they can own, or savings they can...