I’m sharing my SMA story in a new way to keep encouraging others

When you encourage someone and give them positive reinforcement, it’s like giving them a priceless gift. It inspires people to do their best and makes them feel special. Through my experiences with SMA, I try to encourage others, which in turn encourages me.

For example, when new nurses are learning my care, the first few times they suction or clear mucus from my nose can be a little tricky. When they’ve learned to pass the catheter down my nostril correctly, I tell them, “You did good!”

New nurses also find it helpful when I type a bullet-point list of what they need to do differently or improve upon. I add positive reinforcement at the bottom, writing, “You’re doing a great job! Thank you for being part of my team!”

I’ll never forget the words of encouragement somebody once gave me. Twenty years ago, I was hospitalized with pneumonia. For much of those three weeks, every breath was a battle. The doctors didn’t know if I would make it.

After I was well enough to leave the hospital, my occupational therapist, who did home-care visits, came to see me. He told me, “Ari, I prayed for you, and I’ve never prayed before!”

This told me that I had made a difference in his life.

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Finding another way to encourage others

I’m also proud to have encouraged people through my columns. While I plan to continue writing in this format, it’s time to diversify.

In July, I shared how one of my nurses from 40 years ago visited me. We talked about the past, as well as big plans for the future. I promised in that column that I would eventually share those plans.

My nurse and I talked about how I should write a book about my life. Many others have suggested I do the same, so I plan to start working on it soon.

My columns offer snapshots of my life, which is important and has spread the light of hope to many people. But a book would allow me to provide a 360-degree tour of all my experiences. In doing so, I can show how surrounded I am by hope and encouragement.

In my book, I also want to show people with SMA and other rare diseases, along with their loved ones, that you don’t have to live in fear daily. By showing others how I’ve overcome obstacles, I hope to encourage them that they can do it, too. I want to release people from the chains that fear can create.

One of the scariest things I’ve faced is respiratory infections. There’s nothing more frightening than having trouble breathing.

Over the years, my medical team and I have found ways to reduce the severity of my infections and better control my respiratory symptoms. I usually get sick two to three times a year, so it’s a continuous learning process. But now, these infections aren’t as scary for me as they used to be.

Over the past 40 years, there have been only two times when an illness became frightening: when I had pneumonia 20 years ago, and when I had a crisis during the summer of 2025.

In my book, I want to encourage others by sharing how rigorous medical care has helped decrease the severity of my infections, as well as my fear.

I will also describe my upbringing. My mom raised me with a lot of love. Yet, if I broke the rules, I was grounded from TV. Her tough love helped me grow into a responsible adult.

I believe it’s OK for parents to give their children some leeway for bad behavior when they have a chronic condition. That doesn’t mean they should get away with everything, though.

To everyone with SMA and other chronic diseases, you are an inspiration just by living your life each day. By boldly living the best you can, you’re encouraging others to do the same. Congratulations on accomplishing that!

See how encouraging words and positive reinforcement can help us all soar?

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.