ALS Stronger Together

Thank you for returning to read more of our journey. ALS is indeed relentless, I realized our family needed a support network a little late-so I am trying to play catch-up during a very difficult time. I now believe that a strong support system can make all the difference, here are my two cents.

When my husband, Michael, was diagnosed, I felt a wave of emotions – fear, sadness, and so much anger. Yet, over time, I’ve learned to channel those emotions into finding resources, building connections, and finding ways to cope. To anyone out there who’s in the same position, remember, you are not alone. ALS is a harsh reality, but there are compassionate communities and organizations that can provide meaningful support. Below are some resources and advice based on our experience that I hope will help you and your loved ones as well.

Building a Strong Support Network

If you’re new to the world of ALS, one of the first steps I would recommend is connecting with others who understand your journey. ALS impacts every facet of life, and no one should face it alone. Look into the following organizations-they offer a variety of resources and support options that may fit your needs.

• The ALS Association: Offers a comprehensive array of services, from insurance and Medicare assistance to a Virtual Home Modification program that can help make your living space safer and more accessible.
• ALS Network: This organization runs specialized support groups, like adaptive yoga and discussions for younger ALS patients or those who are single. These groups can be a lifeline for emotional support and specialized information.
• ALS United: Provides online support and educational events. Connecting with others through these events has brought me insights, new ideas, and comfort when I needed it most.
• Compassionate Care ALS (CCALS): Offers unique, holistic services both online and in-person, addressing each family’s specific challenges.
• I AM ALS: This community based organization offers advocacy opportunities, virtual support groups, and ongoing guidance for families like ours.
• The Les Turner ALS Foundation: Features in-depth educational guides, expert webinars, and decision-making tools that help answer complex questions about managing ALS.
• Roon and Synapticure: The Roon app offers video-based answers to common ALS questions, and Synapticure provides virtual, personalized care from medical professionals experienced with ALS.
• Paralyzed Veterans of America (PVA): If you or your loved one is a U.S. military veteran, you may qualify for service-connected benefits. The PVA can assist with understanding and applying for these benefits, providing much needed financial and logistical support.

Caring for the Caregiver

As caregivers, we often lose sight of our own well-being, focusing entirely on the needs of our loved ones. However, self-care is essential for sustaining the strength required to support someone with ALS, and also meeting the other family members needs. Although tough, I’ve found that reaching out for help is not a sign of weakness, it’s an acknowledgement of the demands that ALS places on families. Consider joining caregiver support groups or reaching out to local ALS organizations that can offer resources for caregivers.

One of the hardest parts of my journey is learning to accept help. Friends, family, and community can be invaluable, they can assist with household tasks, provide emotional support, or simply listen. Do not hesitate to reach out to them.

Navigating Finances and Long-Term Planning

Managing the financial strain of ALS is a marathon, not a sprint. The costs are overwhelming, and as a caregiver, researching financial aid options is essential.

I would recommend:

• Early Financial Planning: From the beginning, seek guidance on insurance, disability benefits, and government programs. Reach out to ALS-specific organizations that often provide assistance for navigating these processes.
• Future Planning Conversations: It is a difficult topic, but discussing long-term care and end-of-life wishes can bring clarity and help us prepare mentally and financially. These conversations can give peace of mind, knowing that we can make choices based on Michael’s wishes not only feels good but also takes those decisions off my plate.

Holding on to Hope and Moments of Joy

Even amidst the challenges, there are still reasons to smile. The small moments – a good laugh with the kids, a day when Michael is craving a certain food we can all enjoy, or even a day when he has a bit more energy than usual – help us hold on to hope. ALS changes life in ways you cannot imagine, but it also brings out resilience and strength you never knew you had.

Connecting with Our ALS Community

To anyone reading who is affected by ALS, please share your story, connect with me, or join one of these incredible support networks. By opening up about our experiences, we can support one another in ways others cannot understand. Together, we can help ease the burden that ALS places on all of us.

If you have any questions or if you just need someone to talk to, please reach out. This is a challenging journey, but we don’t have to walk it alone. I look forward to connecting with you, learning from your experiences, and offering any help I