Chaz Hayden's Blog, page 5

Building a Wheelchair Accessible Home

After years of searching, I finally found a home builder for a new development that was more than willing to accommodate my accessibility needs and redesign their floor plans. So, I’m going to take you room by room and share my tips for designing a wheelchair-accessible dream home... READ MORE

Monitoring Calories and Protein Consumption

For a non-disabled person, monitoring weight is a simple process. They can easily step on a scale.

A person with a disability who can’t stand up from their wheelchair doesn’t have this luxury and... READ MORE

Feeling Disconnected From My Able-Bodied Friends

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 how I’m feeling about my disability and SMA... READ MORE

Playing the Evrysdi Long Game

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 just us and, at some point, I became okay with the idea that maybe... READ MORE

Why Are You in a Wheelchair?

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 day they and their child will get to stop answering this question. After 25 years, I can tell you with certainty that... READ MORE