ALS Stronger Together

Two years ago, my husband, Michael, was diagnosed with ALS-Amyotrophic Lateral Sclerosis. ALS is a progressive, fatal disease that affects nerve cells in the brain and spinal cord, leading to muscle weakness, loss of movement, and eventually, complete paralysis. Over time, the body simply stops responding, and it’s terrifying to watch it happen to someone you love.

When people ask Michael how he is doing, he often says, “I’m melting.” It is his way of keeping things light, even though the reality is far from humorous. The truth is, ALS is a slow and cruel disease. It robs you of your independence, and for Michael, that has been one of the hardest things to accept. Losing the ability to play tennis with our kids or play golf with his friends has been devastating.

But ALS does not just attack the person who is diagnosed-it attacks the entire family. As a caregiver, I have realized this disease does not just affect muscles-it attacks peace of mind, emotional well-being, and financial stability.

The Diagnosis: A Journey of Elimination

Michael’s ALS journey started with small signs-weight loss and muscle atrophy in his hands. It was not dramatic at first, but it was enough to raise red flags. His hands looked like skin stretched over bone, and soon although not as quickly, the muscle weakness spread to his legs.

Diagnosing ALS is a process of elimination. Over the course of a year, Michael underwent countless tests. There is no simple test for ALS, so we went through a bunch of procedures. He had electromyography(EMG) and nerve conduction studies(NCS) to evaluate his muscle and nerve function. He also had an MRI to rule out other potential causes, like spinal cord issues or tumors. And let us not forget the endless blood tests.

By the time the diagnosis of ALS came, I was numb. I had suspected ALS from the start, but I clung to the hope that it might be something else-long COVID, perhaps. But once the reality of ALS set in, I realized this was a battle we were fighting for the rest of his life.

Living with ALS: Medications and Daily Life

After Michael’s diagnosis, we immediately began treatment with Relyvrio, Radicava, and Riluzole-what we call the “three R’s.” Remember, we lost a whole year of treatment during diagnostics. None of these medications cure ALS, but they are designed to slow it’s progression. And when you are facing an illness like this, even the smallest hope of slowing it down feels like a lifeline.

However, the financial strain is immense. Riluzole costs around $25 a month, but Radicava, and Relyvrio cost nearly $2,000 a month EACH after insurance. Even with discounts and insurance coverage, these costs are overwhelming. Beyond medications, there are doctor visits, home adjustments, and mobility aids. ALS drains not just your energy but your finances.

The recent decision by the FDA to pull Relyvrio from the market felt like another blow. They offered patients the chance to continue using it for free, and we decided to keep Michael on it. The idea of stopping the medication and risking faster progression was just too much. But now, they have told us the program will end in January 2025, and we are left wondering what is next.

The Emotional Toll of Being a Caregiver

Becoming Michael’s caregiver has changed my role in our relationship. I am not just his wife anymore; I am also his nurse, his physical therapist, and his emotional support system. Most days, it feels like the weight of the world is on my shoulders. I have had to learn to balance caregiving with keeping life as normal as possible for our teens. It is a delicate dance, and more often than not, I feel like I am failing. Caring for someone with ALS means constantly adapting. One day, you are helping with simple tasks like getting dressed, and the next, you are navigating how to use new medical equipment or figuring out the best way to transfer someone who cannot move.

But despite everything, there are still moments of joy. We celebrate small victories, like a day when Michael has a bit more energy or when we find a way for him to maintain some independence. These moments keep us going, reminding us that ALS can take many things, but it cannot take everything.

The Financial Burden

ALS is not just a physical and emotional battle-it is a financial one too.Beyond medication, the costs of in-home care, mobility aids, and home modifications add up. We’ve had to buy ramps, purchase wheelchairs, and look into hiring in-home caregiver for the future.

I have spent hours researching financial assistance programs and insurance options. My advice to any new caregivers is to start this process early. ALS does not wait, and neither should you. Knowing what resources are available has been a lifeline for us.

Finding Support Early

One of the hardest lessons I have learned is that ALS can be incredibly isolating. Not only have we lost friends who did not know how to support us, but i have struggled to maintain friendships due to my caregiving responsibilities.

If you are a new caregiver, find support early. Join online communities, talk to others who understand, and do not be afraid to lean on family and friends. It is horrible to feel like a burden when you are constantly asking for help, but no one can do this alone.

Looking Ahead

The future is uncertain. ALS is relentless, and we do not know what the next few years will bring. What I do know is that we have to face this together. We are starting to have difficult conversations about the future-what Michael wants, what we need to prepare for. It is hard but necessary.

If you are reading this and you are a caregiver or someone who loves someone with ALS, I want you to know that you are not alone. This disease is brutal, but we are all fighting it together.

Join the Conversation

Whether you are a caregiver, a family member, or someone affected by ALS in any way, I would love to hear from you. How has ALS impacted your life? What has been your biggest challenge? Greatest victory? Feel free to share your story in the comments or reach out to me directly.

We are stronger together, and by sharing our experiences, we can create a supportive community that offers hope, advice, and comfort to those navigating this difficult journey.

Subscribe to stay updated on my latest posts and insights, and do not hesitate to connect with others who understand what you are going through. Together, we can face ALS head-on, one day at a time.