Author Archives: Ari Anderson

I’ve written about how I’ve looked for my own nurses to provide my SMA care, but I don’t think I’ve been clear that I’m only assisting my home healthcare agency in its search. Over the past 37 years, I’ve used a few home health agencies and spoken…

So much of life is about gaining maturity through our experiences. Sometimes we go through events similar to ones we’ve experienced before, but we now understand them from a whole different perspective. A few months ago, I shared here that my back was to the wall. I need night…

In my previous column, I explained how two years ago I was rescued by a heroic person in my life. Just as my main night nurse of eight years was moving away, a new day nurse of mine agreed to switch to nights. As relieved as I was…

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…

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…

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…

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…

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.

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…

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…