I’m working hard to overcome my current obstacles

Even when faced with challenges, I hold on to hope

by Ari Anderson | September 18, 2025

Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that.

I’m currently addressing two main issues: frequent illness and a lack of nursing coverage.

Decreasing how frequently I get sick

I had back-to-back respiratory infections this summer, only about six weeks apart. I was disappointed to get sick again so soon, but I was far from discouraged. With the help of my Vest Airway Clearance System, I forced out all of that extra mucus in my lungs. My breathing now feels great.

That doesn’t mean I’m home free, though. Flu season is upon us. I hope my medical team and I can develop new preventive strategies to help me avoid respiratory illness.

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When I’m sick, I do three Vest treatments daily instead of my usual two. Maybe one new strategy my team and I can implement is for me to do three Vest treatments one day a week when I am well, while still doing two daily treatments the other six days.

For some, three treatments a day may seem like a lot. But when I’m sick, I’m willing to do as many as needed to get better. As long as I stick to a routine and plan my day well, three treatments a day feel like nothing. I’ve even known some people to do four a day.

On days I do three Vest treatments, I do the first at noon, the second at 3:30 p.m., and the third at 8:30 p.m. It helps to stick to a schedule.

I need to brainstorm with my mom and medical team about other ways to reduce how often I get sick.

Improving my nursing schedule

Unfortunately, my nursing situation has hit a low point. We’ve always had enough staff to at least cover nights, even when my nursing agency and my case were short-staffed. This allowed my mom to get enough sleep.

I mentioned in a previous column that my main night nurse had been working six nights a week. We knew she couldn’t maintain that schedule, and this month, she had to decrease the number of nights she cared for me. My nursing agency is working hard to meet my needs, but in the meantime, my mom is covering a few nights and two days a week. She takes care of me all night on Saturdays and until midnight another day.

Am I frustrated that my mom has had to take on these nighttime hours? Yes. She’s always struggled with staying up late, and watching the energy drain out of her is hard for me. As a son, I’m concerned about my mother. I’m sure other home healthcare recipients feel a similar frustration when their parents have to cover night shifts.

I’m not without hope, though. We have several plans in the works that will hopefully relieve my mom from nighttime caregiving within a month or so.

Working toward solutions

Although I’m facing many obstacles, my support network and I are constantly working to find solutions. This bolsters my faith.

I plan to share updates on both issues in a future column. Let’s soar and strive to solve our problems together!

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.

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About the Author

Ari Anderson Ari Anderson resides in Charlotte, North Carolina, and was diagnosed with SMA type I at 6 months old in 1982. At the time, the prognosis was almost hopeless. Today's medical therapies have changed the prognosis to hopeful. Yet, the rest of society has a long way to catch up in how they see people with SMA. Through his column, “Soaring With Hope,” Ari shares how he changes views through advocacy, innovative technology, and determination. He inspires hope by helping others rise above their hardships. No matter who you are, through his conversational style of writing, you may find that you have experienced the same feelings and emotions throughout your life as Ari has!