My grandparents saw different aspects of healthcare at my clinic

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by Halsey Blocher |

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Mom and I always bring another person or two to my specialist appointments at the SMA clinic. It’s out of state — about three hours from our home — so it’s easier when we have extra helpers throughout the long journey. It’s also nice to have company. For my latest appointment, my grandparents joined us for the first time.

Following the drive and a stop for coffee, our first order of business upon arrival was making it from the parking lot into the hospital.

“You have to wait until I’m on it,” I called back through the open rear doors of my wheelchair van. In his eagerness to master operating the wheelchair lift, my grandpa had begun lowering it to the ground before I had the chance to roll on board! But he learned quickly, and after a few laughs, we were all out of the car and headed inside for a busy day ahead.

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When ordinary medical care is extraordinary

A woman in her 20s is seated in her power wheelchair, and her grandparents stand just behind her. They appear to be inside a restaurant, as tables with plates and glasses are visible in the background. All three are smiling happily.

Halsey Blocher, center, and her grandparents, Rick and Penny Bennett, enjoy a recent celebration on May 11, 2024. (Courtesy of Halsey Blocher)

Like my good friend and fellow SMA News Today columnist Alyssa Silva, I sometimes forget that while I view many aspects of SMA as part of an ordinary day, they may be unfamiliar and interesting to other people.

In a recent column titled “Finding inspiration in mundane moments in life with SMA,” Alyssa writes, “From my perspective, my life is seemingly mundane. The health battles, hospitalizations, caregiving woes, and other daily nuances of life with SMA are all I’ve ever known.”

Bringing my grandparents to my appointment reminded me that much of what my mom and I experience daily in managing my health and care is extraordinary to people who don’t witness it 24/7 like we do. Even my wonderful grandparents only see snapshots of everything that goes into keeping me well and thriving.

Meeting every need

One of those components is making sure we’re meeting the appropriate requirements for insurance providers, pharmacies, and durable medical equipment companies to provide all the medications, supplies, machines, and healthcare services that I require. Among the purposes of medical appointments is reassessing my current needs and abilities to ensure that my doctors can each send the correct documentation to obtain these necessities. Although my grandparents know about my treatments and why I need them, they’d never actually seen the process we go through in order to receive everything.

During the appointment, the neurologist’s nurse practitioner explained the physical effects I’d encounter if I ever experienced a lapse in treatment with Evrysdi (risdiplam) and confirmed the pharmacy had received the necessary information to fill the prescription before that happened. A dietitian made note of my continued feeding tube dependence and need for accompanying supplies to administer medication and formula. A physical therapist completed an evaluation of my current physical function, which includes attempts at basic tasks that can potentially become easier with SMA treatment — things like using a writing utensil, lifting a cup, and tearing a piece of paper.

After the appointment, my grandparents shared in an email that they “didn’t realize until then the concern for getting your medication or equipment [provided] or [requirement] changes they make and how you must always be on top of that.”

The joys of healthcare

A woman in her 20s poses for a photo in front of an orange mural depicting a tree, birds, leaves, and butterflies. She's wearing a striped top and seated in her power wheelchair.

A mural at Nationwide Children’s Hospital in Columbus, Ohio, makes a perfect photo backdrop during a previous SMA clinic appointment in October 2023. (Courtesy of Halsey Blocher)

Meeting the demands that come with SMA might be a lot of work, but trips to the SMA clinic are also joyful experiences, as the day allows for opportunities to catch up with friends in the SMA and medical communities. My grandparents were impressed that I even got to share a book I recently wrote an entry for, “Kaleidoscope Rare Disease Stories: Told by the People who Live Them” by Kerry Wong.

It’s also reassuring to know my wellness is being attended to by this competent, compassionate team. In addition to the kindness and care shown by the medical professionals, my grandparents noticed the happiness of other children and young adults in various kinds of wheelchairs at the clinic. “They all were very upbeat and big smiles on their faces. Wonderful to see their happy faces!”

This observation made me realize my grandparents haven’t often experienced this more cheerful side of healthcare. Much of their time spent with me in a hospital setting has been in the midst of severe illness and surgery recovery. Even then, there were moments of joy, but there was still undeniable pain, sadness, and hardship, too.

But this time, the hospital wasn’t a scary place for me or my family. The clinic’s walls were filled with bright colors, celebration, good conversation, laughter, and indeed, smiles. My health hasn’t always been stable, but now that it is, my appointments can be a positive experience I get to share with anyone who joins me on the journey.

Oh, and I’m pleased to say both my grandparents are now certified wheelchair lift and tie-down experts.

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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