At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.
The winter can be a challenging time of the year for SMA individuals. Not only do cooler temperatures make it difficult for any wheelchair-user to move their hands and drive, but it’s also important to take extra measures to prevent colds. To help make this season more manageable, here are…
We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I…
A few days ago, I found myself strapped to an operating table while a radiologist injected a needle into the side of my neck. From there, I felt a tingling sensation in my body as a specialized spinal fluid flowed throughout my insides. All the while a…
Blog Blogger Jon Morrow has made a name for himself over the years writing viral content for sites like Copyblogger, and coming on a wide range of entrepreneurial podcasts. He currently resides in Austin, Texas as the CEO of Smart Blogger, while also managing his…
In the second episode of the SMA News Today podcast, Community Editor Kevin Schaefer interviews author Ben Mattlin. Mattlin is a Los Angeles-based writer living with SMA type 2. MORE: Three resources to help with booking accessible transportation Mattlin’s first book Miracle Boy Grows…
The other night, I was out at Barnes & Noble with my dad. As we went to grab a table in the coffee shop area, I ran into an old friend and spent a few minutes talking with him and his friend over by one of the store’s…
Transferring an SMA individual in and out of their wheelchair can be a challenge, especially if you don’t have the proper equipment. While there are many types of Hoyer lifts, one of the most innovative and easy-to-use is the Molift Nomad ceiling hoist. Developed by Etac, the Molift Nomad…
November is a pretty jam-packed month for me. I’m working on a book project for the annual NaNoWriMo contest, juggling two separate podcasts, getting ready for the North Carolina Comicon. And on top of all that, I start my Spinraza injections a week from…
https://www.facebook.com/mobilityventuresauto/photos/a.780866102002354.1073741829.775116349243996/1140472656041695/?type=3&theater In 2016, Mobility Ventures released the MV-1, which is the first van to be built specifically for wheelchair users. With its wide interior space and easy-to-use ramps, the MV-1 is one of the best transportation options available today for SMA individuals. Features Features of this vehicle include an…
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