Chaz Hayden's Blog, page 3

Finding a Disability Friendly Hobby

Recently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was either on my computer or watching TV. And that’s pretty common for everyone, not just people with disabilities, but an able-bodied person definitely has a lot more choices when it comes to adding a third or fourth activity to the loop.

Accessible Summer Activities for Kids with SMA

Summertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads people to inaccessible places like the beach, going on hikes, theme parks, and summer camps.

What to Bring to the Hospital

Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when going to any type of surgical procedure.

Side Effects from Stopping Evrysdi

Recently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few reasons, the primary being insurance battles and their lack of understanding the drug’s purpose for SMA adults. The other reason I stopped was...

That One Time in Vegas

Not everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to a suite, free admission to the casino pool party, and a poolside cabana with wait service and security all at no charge.

Now I know you’re wondering who I know or how to get treated like VIPs. The secret... READ MORE

I Stopped Taking Evrysdi

When SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and a spinal injection wasn’t worth the risk to me.

But then a few years later, Evrysdi was FDA approved and this intrigued me considering I’d be taking the medication by mouth and in the comfort of my own home... READ MORE

Successful Intubation and Anesthesia

Every two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so I can be intubated and properly monitored.

It’s supposed to be a quick, routine procedure that’s only about 15 minutes long... READ MORE

Early Education Obstacles

Growing up, it seemed like my parents were always fighting with the school district about something.

Most of the challenges I faced as a student were physical like being able to do my work independently with the use of a computer. The school providing a laptop, training teachers on how to use it, and... READ MORE

When Your Equipment Breaks

My worst nightmare is the thought of any of my equipment breaking at a time when I need it the most. Whether it be my wheelchair, BiPAP, cough assist machine, or ceiling lift system, all of those are vital to my health and daily living with SMA... READ MORE

Having Adult Braces

Previously I wrote about getting my wisdom teeth removed and the pre and post-surgery to make sure everything was successful considering my respiratory issues. But the process to fix my teeth and jaw issues didn’t stop there... READ MORE