When my back is to the wall and a crisis is coming to a head, that’s when my life really gets interesting. There are no more long waits to see if something will happen; instead, something has to happen. The way I see it, human intervention usually occurs, but that…
Soaring With Hope – a Column by Ari Anderson
Looking back, I see how I’ve always had an inclination to write a lot. Even in high school 25 years ago, when a test question required me to write a paragraph or two, I would write pages. This was back when I had to use a scribe to write or…
It seems that I have a problem with knowing when to speak up right away and when to wait a brief moment before I say something. In a recent column, I explained how I have feelings of remorse when I say or do something I think was taken the…
If you regularly read what I write, you’ll know that whether you have a rare disease or not, I have similar emotions and thoughts as everyone else. Yet, the medical symptoms I experience from SMA must seem completely foreign to anyone who doesn’t live through it…
I’m just a normal guy who happens to have physical limitations because of SMA. At least, that’s how I want others to see me. But is that how I see myself? I ask because I can be extremely hard on myself, sometimes even getting on my own nerves. Some…
I know I talk a big game when it comes to advocacy and setting goals for myself. The great results I achieve may lead some people to think that my efforts are effortless, but of course they never are. Surprisingly, though, some things in my life with SMA…
Rarely have I not received the best treatment available for my SMA. Doctors and nurses have been proactive in giving me aggressive care to prevent me from getting sick. But when I do, my medical team, including my mom, is aggressive enough in its care to prevent me…
As it is still early in 2023, this is a good time for me to evaluate what things I’m doing right and what things I can improve upon. And to ask myself what specific actions I can take to make more of a difference. I emphasize “actions,” because although…
There are a few things in life I take refuge in, such as faith and family, which offer safety. My ventilator also makes me feel protected by giving me more breath support when I am sick and keeping sleep apnea at bay. Then there’s the all-important sleep. Sleep has always…
As I write this column, 2022 is almost complete in the book of memories. I must admit that with two surgeries this year, many memories from the year aren’t my favorites. Truthfully, 2022 is ending on a wonderful high note for me, but that’s a story for another time.
Recent Posts
- Apitegromab moves closer to potential FDA approval for kids, adults with SMA
- How comfort and routine are vital while living with SMA
- Screening leads to earlier treatment, better results for SMA children: Study
- In my life with SMA, I strive to find the balance between joy and sorrow
- U.K. consensus sets new guidance for hip care in children with SMA
