With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely…
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I’m not exaggerating when I say that SMA requires you to plan ahead for everything. If I don’t carefully coordinate each day with my caregivers, I can’t even go to the bathroom. Fortunately, I usually can plan for…
It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life,…
Time to get up My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing…
Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging…
Being tied to someone 24/7 is par for the course in my life. I require others to meet my physical needs. Usually, those needs are met by family, but I also worked with many different…
My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza …
Throughout my life, I have been blessed with some of the best friends a human could ever ask for. A few columns ago, I talked about spending a good portion of the past year…
Coming up with topics to write about can be a challenge. I was trying to settle on a topic yesterday, and it occurred to me that I have yet to cover my life philosophy: “One day…
Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending…
Coffee and Mexican food: These are two of my greatest loves, and I once again enjoyed them today, the day I celebrated the one-year anniversary of my best friend Sam’s move to Bend, Oregon. The original…
The internet is a valuable tool for someone like me, especially for the purpose of social platforming. I can’t do much socializing in real life. Whether the environment is too loud for me to be heard, the venue…
The sheer enormity of SMA can easily become overwhelming. All the physical limitations can cause me to overlook the gifts and abilities I do have. I’ve found that it is imperative for me to identify my strengths,…
