Ryan is a simple man from Bend, Oregon. While he aspires to one day become a sit-down comedian, he has turned most of his attention to writing. He loves sharing his life experiences with people and bringing awareness to his disease. His two favorite things are sports and coffee.For most of the year, I’m chilled to the bone. While most people are comfortable at 60 degrees Fahrenheit, exposure to such a temperature for half an hour results in loss of hand function until I warm up. That is a common issue for those in wheelchairs, as…
In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I never wanted to hear the word Spinraza again. The current situation is…
After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply move into an apartment and get a job at Starbucks. I couldn’t go off to college,…
In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven years in a row. What I didn’t mention was that I was also going to…
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 a daily occurrence like that, but other things are more complicated…
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, either. In my younger years, I didn’t have problems with fitting…
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 machine called a BiPAP, a feeding pump, and an oximeter,…
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 from ignorant and annoying to genuine and understandable. While I can’t…
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 nurses throughout my schooling. During those years, I spent more time…
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 (nusinersen), I have found it impossible to make an ultimate decision.
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