The Invisible Work of ALS Caregiving

When you are navigating a diagnosis, whether for yourself or someone you love, the world shifts overnight. Systems you never thought about suddenly become gatekeepers to survival. If you are walking that road right now, or trying to help others understand this quietly devastating disease, maybe my experiences can save you time. Maybe they can make you feel less alone. That is my hope. I plan to share the frustrations, the small victories, and everything in between.

Yesterday I spent hours on the phone with Medicare trying to get my mother’s Part D prescription drug coverage expedited so she would not have to wait until March 1st for medication coverage. It was draining in a way that is difficult to explain unless you have lived it. Navigating federal bureaucracy while watching someone you love decline from ALS is a special kind of exhaustion.

My mom stopped working on January 8, 2026. Continuing her job had become physically impossible. Two weeks later, her SSDI was approved and expedited because ALS qualifies under the Compassionate Allowances Act. Social Security uses advanced screening to fast-track certain conditions, and ALS is one of them. That part of the system worked exactly as intended.

But when she left her job, she also lost her employer health insurance. That meant waiting for Medicare to begin before she could refill her prescriptions. Medicare coverage begins on the first day of the month following approval, which placed her start date at February 1, 2026. Her first SSDI payment, however, will not arrive until the third Wednesday of March. That leaves a long stretch without income while facing mounting medical expenses. Even with legislative improvements meant to help ALS patients, the system still moves far slower than this disease.

I enrolled her in Part D prescription coverage on February 2. The confirmation email stated her coverage would begin March 1. Another full month without medication access. That is when I picked up the phone today, assuming there might be emergency provisions similar to Compassionate Allowances.

After two and a half hours navigating transfers and explanations, I learned about a gap in the ALS Disability Insurance Access Act of 2019. The law successfully eliminated the five-month SSDI waiting period and the twenty-four-month waiting period for Medicare Parts A and B. But Part D is different. Prescription drug coverage is administered through private insurers, and those plans still follow standard enrollment cycles. The federal expedited status for ALS does not override those fixed start dates.

Explaining this to my mother was devastating. No income. No medication coverage. And for me, it created a familiar caregiver reality; invisible administrative labor that determines whether someone receives life-altering treatment or goes without. The 2019 legislation was a major victory, but it left a pharmacy-sized gap that families like mine are forced to bridge alone. Medications like Radicava can cost thousands of dollars per month. For most families, paying out of pocket is not an option.

So I went back to Google. That is when I discovered Searchlight Support, the official patient assistance program through Mitsubishi Tanabe Pharma America, the manufacturer of Radicava. Their program supports patients who are uninsured or temporarily underinsured, which my mother technically is until her Part D coverage begins.

I had her call immediately. She explained her ALS diagnosis, her approved Medicare status, and the March 1 coverage delay. We asked about emergency bridge medication and enrollment in their Patient Assistance Program for February. They agreed if her neurologist sends the prescription directly to them, they could ship the medication at no cost to cover the gap. Next was a call to Erlanger, and moves were made.

Days like this are brutal. Caregiving often looks like paperwork, phone calls, and advocacy battles no one sees. But my persistence shaved weeks off my mom’s wait time for treatment. That matters, even if only to her.

ALS forces families to learn systems most people never have to understand. It turns daughters into advocates, researchers, and translators of medical language overnight. Yesterday, persistence helped get my mom her medication. Tomorrow will bring a different battle.

If you are walking through ALS as a patient, caregiver, family member, or friend, you do not have to figure this out alone. I am documenting what I learn in real time, the hard lessons, the small victories, and the resources that can make an overwhelming system slightly easier to navigate.

If this post helped you, I invite you to-

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I plan to share updates about caregiving, advocacy, research developments, and personal reflections you will not find anywhere else. My goal is to create a space that is honest, informative, and rooted in community. Some will include updates on my Novel(s) as well.

Explore ALS Support Resources
Below are organizations and programs that may help families access care, medication assistance, education, and advocacy support-

• ALS Association – Education, equipment resources, caregiver support, and advocacy
• I AM ALS – Patient navigation, community support, and policy advocacy
• Searchlight Support (Radicava Patient Assistance Program) 1-844-772-4548
• Your local ALS clinic or neurology center - Many offer care coordination and social work support

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ALS can feel isolating because it is rarely visible. Sharing experiences helps families find answers faster and reminds others they are not alone. If you are comfortable sharing your journey, I would be honored to hear from you.

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If you are looking for ways to help, whether through advocacy, volunteering, or supporting community fundraising events, your involvement directly impacts families navigating this disease.

Thank you for being here, for reading, and for helping bring visibility to a disease that too often exists behind closed doors

— Jacqui

When Rare Becomes Personal- My C9orf72 Journey

When I received my own positive C9orf72 carrier diagnosis, I began searching for answers everywhere I could find them. Eventually, that search led me down a path I never expected… into genetics, probability, and the strange comfort of statistics. I was trying to understand how something so devastating could also feel so invisible. It’s a complicated mix of fear, clarity, and strange empowerment that comes with it.

The United States population sits at roughly 342 million people. Around 33,000 Americans live with ALS. That translates to approximately one in every 10,374 people.

Imagine a small town of 10,000 residents. Statistically, one person in that entire town may be living with ALS at any given time. That rarity explains why many people have never encountered the disease directly. ALS is sparse enough to remain largely invisible to the public, yet catastrophic inside the homes it enters.

The cruelty of ALS is often described by the "Ice Bucket Challenge" co-founder Anthony Senerchia as a "glass coffin", the mind stays sharp while the body retreats. Because the disease progresses quickly and often confines individuals to their homes, the public rarely sees the full scope of its impact. If something is not visible, society struggles to grasp its urgency.

To visualize it another way, consider a sold-out professional sports arena holding 20,000 people. In that entire crowd, statistically, only two people would be living with ALS.

Compare that to breast cancer, where approximately one in eight women will be diagnosed during their lifetime. That visibility fuels awareness, funding, and recognizable advocacy symbols. ALS, by contrast, is rare enough that people often ask me if it even has a ribbon. That rarity creates isolation and contributes to limited research funding.

When a specific genetic mutation like C9orf72 is identified, the statistical lens shifts dramatically. The C9orf72 hexanucleotide repeat expansion is the most common known genetic cause of ALS, but it still represents an extremely small subset of cases.

At any given time in the United States, only about 1,800 to 2,500 people are living with C9orf72-related ALS. That translates to roughly one in 150,000 people nationwide.

Statistically, these are considered stochastic events, occurrences that arise without clear cause or fault. On paper, they are random. Living inside that fraction of a percentage, however, does not feel like math. For a person like me, or my mom, in that 1-unit of the ratio, the randomness doesn't feel like math; it feels like a target.

Yet knowledge also creates power. Identifying the C9orf72 mutation means we are not fighting an unnamed enemy. Researchers are actively developing gene-silencing therapies, biomarker tracking, and early-intervention treatments designed specifically to interrupt the toxic processes triggered by this mutation.

If I had been standing in this reality thirty years ago, the gene would still exist, but the research would not. Today, there are clinical trials, emerging therapies, and legitimate scientific momentum. That matters more than statistics ever could.