At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
Soaring With Hope — 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!
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I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
If you’ve read at least a few of my columns, you know that I hold on tightly to hope. It’s what keeps me plowing through the rough terrain of problems and crises, as my faith tells me that, one day, many of these difficulties will be solved. Now, it seems…
It’s been almost a year since I moved into my new house, and I’m still working to get everything the way I want and need it. I’ve always loved warm temperatures. As long as I stay hydrated, the warmth has a special way of soothing my soul. This is…
Thanksgiving and Christmas are holidays that make me grateful. I am thankful for the birth of my Lord and Savior, Jesus, and how he not only brought me through all the events of this year in one piece, but also made me triumphant in many areas. One of my favorite…
Every morning, after relieving the night nurse, my mom walks toward my bed. “Snookums!” she lovingly calls out when she sees that my eyes are open. It’s a nickname that comes straight from her heart. Everything my mom does for me, which is a lot, comes from that same place.
It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA. In February, I moved into a new house, where we converted the garage into my bedroom, bathroom, kitchen, and medical supply room.
In my previous column, I discussed how nurses are recruited and hired by a home health agency, as well as the interview and training processes necessary to work on my case. In this column, I’d like to explore what it takes for a nurse to remain in this role,…
Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in one’s home. Unfortunately, not everyone is familiar with home health nursing and…
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.
I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical challenges. Last year for SMA Awareness Month, I wrote that my dream was to travel across…
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