Guest Voice: The collateral damage of ALS

Before my daughter, Marissa, was diagnosed with ALS in September 2022 at age 30, I was convinced that her symptoms could be attributed to anything except ALS. Denial made it hard to accept reality. Since then, my world has been turned upside down.

Early in 2022, Marissa began experiencing changes in her voice and limbs. By the time she met with a neurologist, her muscle weakness had advanced, affecting both her speech and her mobility. Her primary care doctor and neurologist also noticed tongue fasciculations.

After a thorough examination, Marissa was sent for an MRI. The initial paragraphs of the imaging report suggested nothing unusual, but then came the section that would alter our lives forever: It mentioned abnormalities indicating possible ALS. Despite this, I still couldn’t accept that my daughter faced this terminal disease. Why her?

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We were referred to another neurologist that specialized in motor neuron diseases, who confirmed the devastating news. The diagnosis meant Marissa’s life would be drastically changed, her plans overshadowed by terminal illness. The challenge of comforting your child and explaining the implications of such an incurable and poorly understood disease is unimaginable. As her father, I wrestled with how to remain strong, knowing she’d need my support.

This experience has felt like a never-ending nightmare, and I suspect I’m not alone in this feeling. Like me, Marissa’s mother, extended family, and friends are impacted by ALS, each of us affected in our own way. We are all, in essence, collateral damage to the disease.

None of us chose this, and we’d never wish it on anyone, yet here we are. It’s important to note that our struggles don’t compare with what a patient endures; I share this to highlight that ALS affects everyone connected to it. While the patient faces the disease’s progression directly, caregivers work to understand and cope with the ongoing changes and challenges.

The journey

Marissa was referred to Barrow Neurological Institute, where her phenomenal team provided world-class care. But the biggest challenge was how to manage each day — her work, her life.

I had to make some major adjustments. I would become Marissa’s primary caregiver, handling all the physical aspects of care and helping manage her medical needs. I was able to move in with her, and my employer graciously allowed me to work full time from home. But my daily schedule became erratic. I worked around the clock, based on Marissa’s needs. My co-workers got used to receiving communications at odd hours as a result.

Marissa was fortunate to have excellent insurance through her employer, which covered many costs. But there were still challenges getting certain medications covered.

Managing denials was a new challenge for me. I contacted the drug companies directly, and each assigned representatives to work with me. They helped navigate the appeals process and ultimately provided the medications to my daughter at no cost.

Getting equipment was another challenge. The organization ALS Arizona was tremendously helpful, though they had limited resources. Through my daughter’s connections with Her ALS Story, a support group for young women with ALS, she learned about Compassionate Care ALS. Ron Hoffman and his team there provided exceptional support. They were always ready to provide equipment, offer suggestions, and serve as partners. I remain eternally grateful for everything they did.

As we learned more, my daughter discovered a community of young women experiencing ALS with ages ranging from their late teens to mid-30s. The number of them is staggering. I’ve been fortunate to meet some of these women from Her ALS Story who were friends of my daughter. For Marissa, Her ALS Story was a community she clung to for the remainder of her life.

The challenges younger people face with ALS are vastly different from older adults. As a baby boomer, I can look back on a life of choices — good and bad, highs and lows — and the opportunity to build a family. Young people with ALS are robbed of so many experiences and opportunities. Their lives are cut short, deprived of possibilities to make those same choices — to stumble, grow, and live fully on their own terms.

The aftermath

Over a year has passed since my daughter left me. There is a hole in my soul that will never be repaired — a missing piece of my life, taken away tragically. Those of us who loved Marissa must learn to carry on.

Now I give back to the ALS community in any way I can, volunteering directly with patients and conducting outreach to Hispanic and underserved communities. I keep my daughter’s memory close every day. After Marissa passed, Ron told me, “Don’t get over the grief — it is a validation of how much you love your daughter.” I carry those words with me every day.

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