A man in a powered wheelchair floats through the sky and has a parachute coming out of a backpack on the back of his chair

Essential Items to Manage SMA

Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always have on hand. Whether it's something they stay on top of like information or physical items that they keep in their bag, read what they had to share.

We asked our team of advocates: What are some items that you always have on hand to manage SMA?

Portrait of SMA Advocate Mike Noon

Information is the best item to have on hand

Mike: Information. Some of the younger readers take the internet for granted. I first used the internet when I went off to college.

Before the internet, the only way to get information about research and possible trials was through my doctor at my yearly checkups or the Quest magazine that MDA put out. Over the last 15 + years I have been googling spinal muscular atrophy research on a daily basis.

I try to consume as much information as I can. I also use social media to connect with others who have SMA. I am a firm believer that I am my strongest advocate. You can’t properly advocate for yourself if you don’t have the information.

Portrait of SMA Advocate Chaz Hayden

Items in my bag on the back of my wheelchair

Chaz: Growing up, my friends would always ask me what was in the bag hanging on the back of my wheelchair. Some of them were convinced I carried around a parachute in case I drove my chair off a cliff.

Unfortunately, the real answer isn’t nearly as exciting. I always have the items I’ll need for any situation: a plastic urinal, extra nebulizer medication, a mini pulse-ox, gloves, bendy straws, Allen wrenches if something breaks on my wheelchair, and sometimes a small oxygen tank.

My bag inventory is always changing depending on the season or where I’m going. Some days I’ll bring a poncho to cover me and my wheelchair if it rains. There also may or may not be a parachute inside.

Portrait of SMA Advocate Allie Williams

I use my wheelchair as a "catch-all" for necessary items

Allie: I have a backpack on the back of my chair with all of my needs throughout the day. I have long plastic bendy straws, plastic forks and spoons, hand sanitizer, wheelchair tools, and most important baby wipes! I will never leave my house without them. 

I also keep Tylenol and Benadryl on hand in travel bottles. I discovered little compressed towels that are like paper towels compressed into coin-sized disks that expand when wet. I keep a handful of those in my bag, too.

I tend to use my chair as a "catch-all" when I am out and about, so an important reminder is to go through it now and again to re-organize and make sure everything needed is still there.

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