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.
Today I want to talk about something very special to my heart: setting goals; and not just for 2023, but also 2024 and 2025. Creating future goals excites me and gives me hope during life’s many storms. I hope you’ll get excited with me. Have you ever worked on…
It may be annoying to some, but I’m one of those people who look forward to Christmas starting in October. Sorry, not sorry. So many of my favorite memories are either directly or indirectly related to this special day. If you ask my mom, she wouldn’t consider Christmas Eve 1984…
You have to be in an introspective mood to examine your own flaws and weaknesses. It takes both maturity and courage, neither of which come easy. I don’t like to do it any more than all of you, but bravery is often rewarded with riches beyond comparison. By riches,…
