Living with ALS: Make Today Your Best Day

Many have asked me about the genesis of my mantra, “Make Today Your Best Day.” Early on in my ALS journey, I realized that today is the most important day! You can’t change yesterday, and tomorrow may never come. So, make today your best day yet!

I recently listened to the book “Tuesdays with Morrie.” As many of you know, Morrie Schwartz had ALS, just like me. One of my favorite quotes from the book was when Morrie said, “So many people walk around with a meaningless life. They seem half-asleep, even when they’re busy doing things they think are important. This is because they’re chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” Please don’t wait for a diagnosis like I did to find my purpose.

When you are facing a terminal disease, there comes clarity on how important each day is. So, each day is a blessing. I did not understand that when I was caught up in trying to find success and busy with trivial things that really didn’t matter. I have realized how much joy there is in having a positive impact on someone or something each day. Therefore, I try to make each day my best day yet. My best days are when I can make a difference in someone’s life. I believe that is the purpose God wants me to serve. I want to share my message with everyone I can reach. Make today your best day yet!

Each day we wake up is a gift, an opportunity to live out the calling God has placed on our lives. We are encouraged to embrace each moment with gratitude, purpose, and joy, knowing that our lives are part of a divine plan. Making today your best day doesn’t mean everything will be perfect or easy, but it does mean we can align ourselves with God’s will, trust in His promises, and reflect His love in all we do.

Each day is an opportunity, a blank canvas waiting to be painted with the colors of your choices, actions, and attitude. Psalm 118:24 reminds us, "This is the day that the Lord has made; let us rejoice and be glad in it." Today is all you truly have, no matter what yesterday holds or what tomorrow promises. The power to make it meaningful lies in how you approach today. By focusing on presence, gratitude, and intentionality, you can transform an ordinary day into your best day.

Start with the morning, the first moments that set the tone for what lies ahead. Instead of rushing into the day with stress or distractions, take a moment to ground yourself. Whether it’s through meditation, a few deep breaths, journaling, or a quick walk, giving yourself time to center your thoughts can bring clarity and calm. Show kindness and patience to those around you, and seize opportunities to share God’s love through encouragement or acts of service. Setting an intention—perhaps to stay positive, be kind, or accomplish a specific goal—can help guide your actions throughout the day.

Challenges may come, but they provide a chance to grow in faith. Romans 8:28 assures us that "in all things, God works for the good of those who love him." When my difficulties arise, I lean on God’s promises, trust in His faithfulness, and remember that He can use even the hardest moments for my good and His glory. I let His peace guard my heart and guide my responses.

Gratitude is one of the most transformative mindsets you can adopt. It shifts your focus from what’s lacking to what’s abundant. Even on the most challenging days, there are always things to be thankful for—the warmth of the sun, the kindness of a stranger, or my beautiful caregivers (Including Carol). By consciously recognizing these blessings, I can elevate my mood and change how I perceive the day. Philippians 4:8 encourages us to focus on whatever is true, noble, right, pure, lovely, and admirable. By shifting my focus to these things, I cultivate a heart of thankfulness that honors God and deepens my joy.

Living intentionally is another key to making today your best day. Think about what truly matters to you and prioritize those things. It could be spending time with loved ones, tackling a project you’ve been passionate about, or simply giving your best effort at work or school. Remember, quality often outweighs quantity. Even small, purposeful actions can bring immense fulfillment.

The way you interact with others also shapes your day. A kind word, a listening ear, or a simple smile can brighten someone else’s day and bring joy to your own. Relationships are one of life’s greatest treasures, and nurturing them adds depth and richness to your day.

Challenges are inevitable, but they don’t have to derail you. When difficulties arise, pause and remind yourself that obstacles are temporary. Look for solutions instead of dwelling on problems, and don’t hesitate to ask for help if needed. By facing challenges with resilience and optimism, you build strength and character. Finally, make today your best day by extending grace to yourself and others. None of us are perfect, and we will make mistakes, but God’s mercies are new every morning (Lamentations 3:22-23). Forgive quickly, love generously, and trust that God works in and through you.

Making today your best day doesn’t require grand achievements or perfect circumstances. It’s about embracing the moment, making the most of what you have, and choosing to find joy and purpose in the present. Today is yours—live it well.

The Lessons I've Learned 6 Years into My ALS Journey

The life expectancy of living with ALS is 2 to 3 years. As I celebrate my 6^th anniversary since my diagnosis, I’m grateful for all the support from family and friends. I’m tremendously thankful for my caregivers (Bernadine, Erica, Alicia, Regina, and Michelle), who are very talented in what they do and have shown me their love by caring for me, for it is they who give us the ability to surge forward into year 7.  My caregivers are truly a gift from God!

Living with ALS for six years has been a journey filled with profound lessons. One of the most significant realizations is the importance of cherishing every moment. ALS has taught me that life is unpredictable and that every day is a gift. As I’ve said many times before, don’t take life for granted. You can’t change yesterday, and tomorrow may never come. That’s why I am trying to Make Today My Best Day Yet! I try to help others Make Today Your Best Day. This perspective has helped me appreciate the small joys and find beauty in the mundane.

My ALS journey has taught me the importance of faith and trusting in God's plan, even in the face of adversity. It has also shown me the power of community and the beauty of coming together in prayer and support. ALS has taught me to rely on God's strength and grace to carry me through difficult times and to be grateful for each day that I am given. It has deepened my faith and shown me the true meaning of perseverance and hope in the face of hardship. Living with ALS has been a challenging journey, but it has also been a path of spiritual growth and transformation that has strengthened my relationship with God and my understanding of His love.

How precious our time here on earth is, and how important it is not to waste it working a job you hate, exercising, arguing, making enemies, or harboring resentment. Tell those who matter in your life that you love them, and do it often and liberally. I’m not just talking about family, either—your friends, neighbors, and people who you just met.

Navigating life with ALS has been a journey marked by profound challenges, unexpected lessons, and moments of quiet triumph. When I first received the diagnosis, it felt like the ground had shifted beneath us (I say “us” because an ALS diagnosis affects Carol as much as me). Words like "progressive" and "incurable" loomed large, casting long shadows over the life Carol and I had imagined. But as the years have unfolded, I’ve discovered reservoirs of strength, resilience, and grace I never knew existed.

Another lesson is the power of resilience. Facing the daily challenges of ALS requires a strength I never knew I had. It's not just about physical endurance but also mental and emotional fortitude. I've learned to adapt, to find new ways to do things, and to keep pushing forward even when it feels impossible. I realized I had to let go of control. ALS is a condition that forces you to confront your limits. The small, taken-for-granted freedoms—like brushing your hair or tying your shoes—can slip away. At first, these losses felt like betrayals, as though my own body were turning against me. But over time, I’ve learned to embrace a different kind of agency rooted in acceptance and adaptation. It’s not about resigning to the disease but about finding new ways to live within its parameters.

The value of support networks has become incredibly clear. Family, friends, my caregivers, and even strangers have been my pillars of strength. Their unwavering support and love have made the tough days bearable and the good days even better. This experience has deepened my appreciation for the people in my life and the connections we share. ALS can be isolating. Their kindness has taught me that vulnerability is not a weakness; it’s an invitation for connection. The moments when someone offers a helping hand, a listening ear, or just their presence have shown me the boundless capacity for human compassion. In these interactions, I’ve found strength and solace.

There is a term called compassion burnout, and It's a real thing, unfortunately. It happens to Carol. I definitely can be very challenging at times. She gets tired of taking care of me (not very often) and all that goes with it: the constant worry, having caregivers in and out, the doctors, and the equipment. Friends don’t come to visit as much.

Carol is a SAINT! She has taught me the true meaning of unconditional love. She has given up so much to take care of me, like her career, traveling to our favorite destinations, spending time at the lake, spending time with her family, and her relationships with friends.

I’ve also discovered the importance of focusing on what remains instead of what’s lost. John Wooden (the famous basketball coach for UCLA) once said, “Focus on what you can do rather than focus on what you can’t do.” While ALS has taken much, it hasn’t robbed me of my ability to love, to think deeply, or to savor the beauty of the world around me. A sunset still fills me with awe. The laughter of loved ones still lifts my spirit. These moments, fleeting as they may be, have become my anchors. They remind me that even amidst the most challenging battles, there is still joy to be found.

Another lesson I’ve learned is gratitude. Gratitude is a powerful emotion that can bring immense joy and fulfillment into our lives. When we take the time to appreciate the people, things, and experiences that bring us happiness and joy, we can see the abundance surrounding us. Gratitude allows us to shift our focus from what we lack to what we have, cultivating a sense of contentment and peace. By expressing gratitude regularly, we can enhance our relationships, improve our mental health, and attract more positivity into our lives. So, let us take a moment each day to reflect on all that we are grateful for and let that gratitude fill our hearts with warmth and appreciation.

Patience has become both a necessity and a virtue. Tasks that once took seconds can now take minutes or require assistance. While frustrating at times, this slowing down has also brought unexpected clarity. I’ve learned to notice the small details—the texture of a breeze, the rhythm of rain against a window, the warmth of a hand in mine. In a world that often rushes forward, this enforced stillness has its own quiet rewards.

Finally, I’ve come to understand the profound power of hope. Hope doesn’t mean denying reality or clinging to false promises. For me, it’s about believing life is still worth living, even with its pain and unpredictability. It’s about cherishing the present and daring to dream of a future where advancements in science and medicine might one day change the narrative of ALS for others.

Six years into this journey, I am not the same person I was at the beginning. ALS has reshaped my world in ways I could never have anticipated. It has taken much, but it has also given me a deeper appreciation for life’s fragility and its resilience. I’ve learned to measure my days not in terms of what I’ve lost but by the love, connection, and meaning I’ve found along the way. And for that, I am profoundly grateful.

#maketodayyourbestday #EndALS #FaithoverFear 

 

LIVING with ALS: Live Like You Were Dying

Tim McGraw’s song "Live Like You Were Dying" is more than just a country music hit—it’s a heartfelt anthem that inspires listeners to embrace life with urgency, gratitude, and purpose. Released in 2004, the song struck a chord with audiences not just because of its beautiful melody but also because of the universal truth it speaks to: life is precious, fleeting, and worth living fully. I take this song to heart, which is why I came up with my mantra, “Make Today Your Best Day.”

The song tells the story of a man, like me, who receives life-altering news about his health. Instead of succumbing to fear or regret, he chooses to view his diagnosis as a wake-up call. He starts living with a renewed sense of purpose, pursuing adventures he’d always dreamed of, like skydiving and bull riding (I have never dreamed of doing these things), but also deepening his relationships and living with greater compassion. The lyrics beautifully balance the extraordinary and the every day, showing that living fully isn’t just about crossing off bucket-list items—it’s about loving harder, forgiving quicker, and appreciating the little things. Make Today Your Best Day!

One of the song’s most powerful messages is the line, "I hope you get the chance to live like you were dying." It’s a reminder that we don’t need a life-altering diagnosis to start living intentionally. Too often, we put off what truly matters—spending time with loved ones, pursuing passions, or mending broken relationships—because we assume there will always be more time. McGraw’s song challenges that assumption, urging us to embrace each day as though it were our last. Make Today Your Best Day!   

Beyond its lyrical depth, Live Like You Were Dying resonates because it taps into a shared human experience. Whether or not we’ve faced a moment of reckoning like the one described in the song, we all understand the fragility of life. The song serves as both a comfort and a call to action, reminding us to make the most of the time we have. Make Today Your Best Day!

The song’s themes of love, forgiveness, and adventure aren’t just aspirational—they’re deeply personal. They reflect values that many people strive for but often push aside in the busyness of daily life. McGraw’s delivery, filled with emotion and sincerity, makes the message even more poignant, connecting with listeners on a deeply personal level. Make Today Your Best Da!

Over the years, Live Like You Were Dying has become a soundtrack for those seeking to re-evaluate their priorities or find hope in difficult times. Its impact goes beyond music charts; it’s a source of inspiration, a reminder that life is not about the length of our days but the depth of how we live them. Make Today Your Best Day!

The beauty of this song is that it doesn’t just speak to those who have faced adversity—it speaks to everyone. It challenges us to be present, to dream bigger, and to love more fiercely. In doing so, it captures what it means to truly live. Tim McGraw’s Live Like You Were Dying isn’t just a song; it’s a life philosophy wrapped in melody, and it’s one that continues to inspire people to make every moment count. Make Today Your Best Day!

Don’t wait for a terminal diagnosis to live like you are dying. We should all live like we are dying because life is too short! Make Today Your Best Day!

Bankruptcy, Next Exit: The High Cost of LIVING with ALS

Living with ALS (Amyotrophic Lateral Sclerosis), often referred to as Lou Gehrig’s disease, involves not only immense physical and emotional challenges but also significant financial burdens. The financial impact of ALS stretches across various dimensions, including medical expenses, caregiving, home modifications, and lost income, leaving families grappling with a heavy economic burden that intensifies as the disease progresses. ALS is often called “The Bankruptcy Disease. “

We are fortunate that God blessed us with the financial means to absorb these additional costs, but others have no financial means to absorb these costs. I don’t want to spend our retirement savings on caring for me. I definitely don’t want to be a financial or physical burden to Carol! I want Carol to live comfortably when I’m gone. These are the financial decisions we wrestle with every day. The financial impact of ALS is REAL!

The initial financial strain of ALS often begins with medical costs associated with diagnosis and treatment. I needed neurological evaluations, advanced diagnostic testing, genetic counseling, and frequent visits to specialists, all of which add up even for those with health insurance. As ALS progresses, the need for durable medical equipment (DME) becomes increasingly important. For instance, power wheelchairs, essential for patients who lose the ability to walk, can cost upwards of $30,000. Ventilators and other breathing support devices, which become necessary as the disease impairs respiratory function, can cost between $2,000 and $5,000 per month. Patients who lose their speaking ability may require communication devices ranging from $3,000 to $15,000, depending on features and software. Even wheelchair mounts for eye-gaze computers can cost more than $2000 because they are deemed “Medical equipment.” Medical supplies needed for everyday care can cost upwards of $50,000 annually. Each of these items is crucial for maintaining quality of life, yet most insurance plans offer only partial coverage, forcing families to absorb high out-of-pocket costs.

In addition to medical equipment, patients often need home modifications to ensure safety and accessibility as their physical capabilities diminish. Many homes cannot handle severe mobility restrictions, necessitating costly changes like widening doorways, installing ramps, and adding lifts to raise my big ass. Each ceiling lift costs over $15,000. We have 2 in each home. Bathroom modifications—such as accessible showers, grab bars, and adjustable sinks—are also essential. Depending on the extent of changes required, these home modifications can cost tens of thousands of dollars. Our home modifications (lifts, ramps, doorways, bathroom, etc.) were roughly $50,000. Unfortunately, insurance generally does not cover these renovations, leaving families to bear the expense or resort to relocating, which presents its own financial and logistical challenges.

When you have a wheelchair, you need a specialized accessible van. The accessible van costs between $50,000 and $100,000. Because I couldn’t fit comfortably in an accessible minivan, we had to get a customized Sprinter Van (aka Big Ass Van), costing us at the top end of that range. 

The need for professional caregiving represents another major financial challenge for ALS patients and their families. As ALS advances, patients become increasingly dependent on others for daily activities such as bathing, dressing, and eating. In the later stages, many require full-time supervision to ensure safety and comfort. Part-time caregiving can cost around $2,500 per month, while full-time, around-the-clock care can exceed $15,000 per month. Since I’m in the late stages of ALS, I need around-the-clock care. There was a statistic I read that only about 5% of ALS patients get a trach in the US. In other European countries, the figure is closer to 50%. That’s because caregiving expenses are so high in the US, and the European countries provide caregiving assistance. While some families initially take on caregiving responsibilities themselves, the demands of ALS often require professional assistance as the disease progresses. Most insurance policies, including Medicare, provide limited coverage for in-home care, meaning families must shoulder a substantial portion of the caregiving costs. This situation is compounded by family members frequently having to reduce their work hours or leave their jobs to provide care, resulting in lost income and financial instability. Like other ALS friends, we took a big financial hit when Carol had to retire from Southwire to take care of me. When you add up all the out-of-pocket expenses of ALS, the financial impact is over $250,000 EVERY year, not including the loss of income.  

I’m sure that we’ve all rationalized that a loved one has chosen, for example, not to undergo yet another round of chemotherapy since their cancer is so far along, choosing quality of life over treatment. But flip that decision-making on its head …. Flip it to where you or your loved one chooses a very tough path to death so that you don’t destroy your family through debt or bankruptcy. 

One thing that might hit home with all of you and is a conversation that Carol and I have all the time with ALS families is choosing treatments that extend life (think trach or feeding tube) …. Some patients and their families are comfortable living with the realities of ALS. Still, patients choose to forgo treatments and choose death so that they won’t bankrupt their families. Every ALS family we know has wrestled with the financial impacts of their decisions to undergo various approaches to life or death with ALS. Hence, another reason ALS is tagged as the “Bankruptcy Disease.” 

Medical bankruptcy is a very real outcome for MANY ALS families. And while it might “feel better” to you when you hear the word “medical” associated with some family going bankrupt. But know this …. Financial devastation tears families apart and crushes the lives of spouses, children, and family members who try to make a go of it. These are families that live in your neighborhood, go to school with your kids, and are left to piece together their lives with little or nothing left. AND these are hard outcomes for all of us as a society.  When families are torn apart, the societal costs are very, very high

The economic impact of ALS extends beyond the patient to their entire family, often resulting in a significant drop in household income. Many ALS patients lose the ability to work as their symptoms worsen, and family members who step in as caregivers may have to sacrifice their careers. This loss of income, coupled with the disease’s high expenses, leads to significant financial strain. Families may have to drain savings, take on debt, or rely on public assistance to make ends meet, which can create additional stress. For many families, the financial toll of ALS leads to a loss of financial independence, amplifying the emotional and mental burden of managing the disease.

While Medicare, Medicaid, and private insurance provide some financial support, they are often inadequate in covering the costs associated with ALS. Medicare typically covers only 80% of approved expenses, leaving patients responsible for a considerable amount. Furthermore, many essential services may not be covered, particularly those that enhance quality of life but are not directly related to life-sustaining care. This gap in coverage forces families to either fund these expenses out of pocket or go without certain equipment and services, which can negatively impact the patient’s quality of life.

Many families turn to additional resources such as government programs, nonprofit organizations, and community support to alleviate the financial burden. For example, Social Security Disability Insurance (SSDI) and Medicare provide some financial relief for ALS patients who qualify, though they often fall short of covering all necessary expenses. I’m on SSDI and Medicare, but Carol is not. Organizations like the ALS Association offer equipment loan programs, financial assistance, and support services that can help bridge some of the gaps. Families often turn to crowdfunding platforms or organize local fundraising efforts to help cover medical and caregiving costs. Whether through direct donations or local fundraising events, community support can provide meaningful relief, allowing families to focus on caregiving rather than financial concerns. Consulting a financial advisor specializing in chronic illness can help families navigate complex insurance policies, explore financial aid options, and create a long-term budget.

Living with ALS imposes not only a physical and emotional toll on patients and their families but also a severe financial strain. The high medical equipment costs, home modifications, caregiving, and lost income can be overwhelming, often forcing families into difficult financial decisions. While support networks and resources exist, they are usually limited and unable to meet the full scope of need. Increasing awareness about the actual cost of ALS is essential to mobilize further support from policymakers, insurers, and communities. Addressing the economic challenges of ALS is a critical step in ensuring dignity, comfort, and peace for patients and their families, allowing them to concentrate on making the most of their time together despite the devastating nature of the disease.

If you want to help ALS families with their financial burdens, donating to the Kerry and Gary Challenge will help ALS families in Alabama. If you would like to help ALS families in other states, the ALS Association is best positioned to help the families (just be sure to designate your gift for family support in the state you live in). Here are the links to the Kerry and Gary Challenge and the ALS Association:

kgchallenge.com

ALS.org

The Urgent Need for More ALS Funding: Why Every Dollar Counts

I ask many of you to contribute to many of my ALS causes, whether helping ALS families through the Kerry and Gary Challenge or donating to ALS research. Here’s why my asks are so very important:

Amyotrophic Lateral Sclerosis (ALS) is a disease that has left too many families in heartbreak, too many patients without hope, and too many researchers struggling to find the answers that could save lives. Despite being first identified over a century ago, ALS remains a devastating and fatal condition with no known cure and only limited treatment options. While progress has been made, the pace of discovery is not fast enough—and that’s why we urgently need more funding for ALS.

 

 ALS: A Relentless Disease

ALS, often referred to as Lou Gehrig’s disease, affects the motor neurons in the brain and spinal cord, leading to progressive muscle weakness, paralysis, and eventually death, usually within 3 to 5 years of diagnosis. Like me, this cruel disease robs people of their ability to walk, talk, eat, and breathe, yet their minds remain fully intact. Imagine being trapped in a body that no longer responds while your mind stays sharp and aware. This is the brutal reality for me and ALS patients.

For most, the onset is sudden and the progression swift, leaving little time for patients and their families to adjust to the life-changing impact of the diagnosis. Within 6 months, I couldn’t walk and was in a wheelchair. Within 2 years I couldn’t breathe, eat or swallow, speak, and was on a ventilator 24/7. So, my progression was very fast! With only two FDA-approved drugs that can modestly slow disease progression in some cases, patients and families are often left with little more than hope that research will soon deliver new treatments.

 

 Why More Funding Is Critical

The science of ALS is complex, and while researchers are making strides, we are still far from a cure. Only a fraction of the necessary research projects are being funded due to limited resources. Without enough funding, we can’t move fast enough to discover the causes, identify biomarkers, or test new treatments in clinical trials. Here's why more funding is absolutely crucial:

 1. Accelerating the Pace of Discovery

Compared to other neurodegenerative diseases, ALS research is underfunded. ALS affects fewer people than conditions like Alzheimer's or Parkinson’s, making it harder to secure government and private funding. Yet, the scientific challenges posed by ALS are no less significant. The lack of funding means that research that could lead to breakthroughs is often delayed or never pursued. More funding would allow scientists to run more studies in parallel, explore new avenues, and quickly pivot when certain hypotheses show promise.

 2. Fast-Tracking Clinical Trials

Clinical trials are essential for developing and testing new drugs, therapies, and treatments. However, these trials are expensive and time-consuming, and only a limited number of ALS patients get the chance to participate. With increased funding, more clinical trials could be conducted, allowing patients to try new therapies that could slow or stop the disease’s progression. We can’t afford to wait—patients don’t have time on their side.

 3. Funding Cutting-Edge Technologies

Recent genetic and molecular biology advances have opened new doors in ALS research. Techniques like CRISPR gene editing, stem cell therapy, and RNA-targeted treatments have shown tremendous potential. However, these innovative technologies require significant financial investment. The more funding we provide, the more likely researchers are to make discoveries that could revolutionize how ALS is treated.

 4. Filling the Knowledge Gap

ALS is still a mystery in many ways. For 90% of ALS cases, there is no clear genetic link, making it difficult to pinpoint the exact cause. Research funding helps uncover the biological and environmental factors that contribute to ALS, which is essential for developing preventive strategies and targeted treatments. Without this knowledge, we are fighting blindly against a formidable enemy.

 5. Supporting Patients and Families

Beyond research, ALS funding helps provide essential services for patients and their families. From specialized equipment like communication devices and mobility aids to in-home care and support groups, the costs of living with ALS are astronomical. It costs over $250,000 EVERY year to care for someone living with ALS. Most of those costs are out of pocket because insurance typically does not cover caregiver expenses. More funding means more support for these families, helping them manage the overwhelming emotional, physical, and financial burden of this disease.

 

 The Ripple Effect of ALS Research

The research from ALS studies doesn’t just impact those living with the disease—it has broader implications for other neurodegenerative conditions like Alzheimer’s, Parkinson’s, and Huntington’s disease. The insights gained from ALS research contribute to our understanding of the nervous system as a whole and may lead to treatments that benefit millions of people worldwide.

 

 How You Can Help

The fight against ALS cannot be won without the collective effort of individuals, organizations, and governments. Here’s how you can make a difference:

- Donate to ALS: Every dollar counts. Your contribution could fund the next groundbreaking study or help a family afford to care for their loved one.

- Raise Awareness: Share information about ALS with your network. The more people know about the urgent need for funding, the more we can rally support.

- Advocate for Increased Government Funding: Join the voices calling for more significant investment in ALS research from national health organizations and governments.

- Participate in Fundraisers: Walks, rides, and challenges that raise money for ALS are critical to keeping research moving forward. By participating, you’re helping fund the future.

 

 Conclusion: Time Is of the Essence

ALS is an urgent, life-threatening disease. Every day, another person receives a diagnosis, and every day, more lives are cut short. It may not save my life, but we cannot afford to wait any longer. We have the knowledge, the scientists, and the tools to make significant progress—but we need the funding to match the enormity of the task. With your help, we can accelerate research, provide better care, and, most importantly, bring hope to those living with ALS.

Together, we can push forward toward a future where ALS is no longer a death sentence but a treatable—and curable—condition. Let's make it happen, one donation at a time.

If you would like to donate to ALS research, please click on this link: https://www.als.net/

 

If you would prefer to give to ALS families, please click on this link: https://thekerryandgarychallenge.com/

Living Invisibly: The Struggles and Strength of Life with ALS

Imagine living in a world where, day by day, your body becomes less your own. My mind remains sharp, my thoughts as vivid and alive as ever, but my ability to express those thoughts has been lost or severely compromised. That’s the experience of living with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

Now, add to that another layer: invisibility. Not the kind you see in sci-fi movies, but emotional and social invisibility that slowly creeps in as your body changes and people don’t know how to react. ALS is a condition that gradually strips away your physical independence. Still, another, more subtle loss comes with it—the feeling of being overlooked, misunderstood, or even invisible in the eyes of society.

 

The Physical Decline and Social Isolation

ALS is often called “the disease that doesn’t sleep” because it progresses day after day. At first, it may start with minor muscle weakness, a stumble, or slurred speech. My symptoms began with my inability to hit the rim while shooting free throws. But eventually, everyday tasks—eating, walking, talking, breathing—become monumental hurdles. And as your physical capabilities diminish, so does your visibility to the outside world. I, for one, am very thankful for social media and the internet!

It’s easy to feel invisible when your condition becomes a barrier to social interaction. Friends and even family might withdraw (my family and friends have been incredibly loving and supportive of me and Carol), or unsure how to communicate or relate to me anymore. I’ve found that using my eye-gaze computer, people often lose patience with me because it takes me so long to type my response and speak. I feel pressure to respond much faster, often with shorter responses without the in-depth response I would have preferred.

Others might assume that because your body is weakening, your mind must be too—leading to uncomfortable silences or conversations that happen “around” you rather than “with” you. You become a silent observer of your own life, trapped in a body that feels foreign.

 

Misconceptions and Misunderstandings

One of the greatest frustrations of living with ALS is how little the public understands about the disease. For many, it remains an abstract concept, only brought to the forefront during fleeting media moments like the ALS Ice Bucket Challenge. But the daily realities—how ALS transforms every aspect of life—are often hidden from view.

Many people assume that if someone with ALS can’t speak or move, they must also lack awareness. This couldn’t be further from the truth. For most, ALS doesn’t affect cognitive function, which means that while their body is failing them, their mind remains intact. They think, they feel, they want to engage—but the ability to do so on their own terms is limited, leading to that crushing feeling of invisibility.

 

Coping with the Mental and Emotional Toll

There’s an emotional toll that comes with being physically present but socially overlooked. Feelings of isolation, frustration, and sadness are common, but there’s also resilience—an unspoken strength that many people with ALS develop over time.

Finding ways to maintain a sense of visibility, agency, and self-expression becomes crucial. Whether through technology—such as speech-generating devices—or through art, writing, or other creative outlets, many living with ALS strive to be heard in a world that may not always listen.

Support networks are also essential. While some friendships may fall away, others deepen. ALS support groups, whether in person or online, provide a vital community where people understand your challenges. It’s a space where you’re not invisible but fully seen and heard.

 

Navigating a World That Isn’t Built for You

Accessibility remains one of the most significant barriers for people living with ALS. The world is not designed for those who struggle with mobility or communication. Simple things, like getting into a restaurant or traveling (imagine me being lifted out of my wheelchair into my airplane seat, now imagine traveling with a ventilator and all the backup equipment that comes with it), can become significant challenges. This lack of accessibility can further contribute to feeling sidelined or forgotten. Carol and I always enjoyed traveling. Many places remain on our bucket list, but alas, they will remain on our bucket list.

Advocacy for greater accessibility and inclusivity is vital. Every ramp, voice-to-text tool, and adaptable device helps create a world where people with ALS—and others living with disabilities—can feel more present and less invisible.

 

The Power of Acknowledgment

Being visible doesn’t just mean being physically seen; it means being genuinely acknowledged for who you are beyond your condition. Those living with ALS are people with stories, dreams, fears, and ambitions, just like anyone else. They want to be part of the conversation, part of society, and not defined solely by their illness.

For those who don’t know how to engage with someone who has ALS, the answer is simple: talk to them. Ask them about their day, their thoughts, and their interests. Acknowledge them as a person, not just a patient. Doing so, you help break down the walls of invisibility that ALS often builds around them.

 

Conclusion: Strength in Visibility

Living with ALS is challenging enough without the added burden of feeling invisible. By sharing stories, raising awareness, and fostering meaningful connections, we can help people with ALS reclaim their visibility and, in turn, their humanity.

Everyone deserves to feel seen, heard, and valued—no matter their challenges. And for those living with ALS, that acknowledgment can be one of the most potent gifts the world can offer.

Let’s work to create a more inclusive, compassionate world where everyone, no matter their abilities, feels visible and valued.

#maketodayyourbestday #EndALS #FaithoverFear 

LIVING with ALS: Technological Advances for People Living with ALS

Many have asked me about the technology I use to maintain my independence. I'm truly inspired by the technological advancements in the ALS space, both current and future. Despite the lack of a cure, these significant technological advancements have been made to empower me and other ALS patients, significantly enhancing our quality of life. These innovations span various domains, including communication, mobility, and daily living, offering new ways to maintain independence and well-being.

Communication Technologies

One of the most critical challenges for ALS patients is the loss of speech. As the disease progresses, traditional verbal communication becomes increasingly difficult. However, several assistive technologies (ATs) have been developed to address this issue:

1. Augmentative and Alternative Communication (AAC):

  - Eye-tracking devices: These devices (I use a Tobii Dynavox) have been a game-changer. They allow me to control a computer or communication device using eye movements, enabling me to type messages or select pre-programmed phrases [1] [4]. Apple just announced eye tracking in iOS18. I’m excited to see if this will bring Apple back to the eye-tracking race. I prefer Apple products, but Tobii Dynavox is Windows-based, and I’m forced to use an Android phone for texting. These devices have improved not only my communication but also my overall independence and well-being.

  - Using your eyes to control your wheelchair: Software, like LifeDrive or AbilityDrive, allows ALS patients to drive (or control) their wheelchairs using only their eyes. It gives me a sense of independence again! I've been testing LifeDrive for some time. You may have seen videos of me driving on Facebook. If you haven't, look me up on Facebook. 

   - Text-to-Speech Software: This software converts typed text into spoken words, allowing patients to communicate verbally through a synthesized voice [4].

2. Message and Voice Banking:

   - Message Banking: Patients record important messages and phrases in their own voice, which can be played back later using a communication device [2].

   - Voice Banking: Patients record samples of their natural voice to create a custom synthesized voice for future use, preserving their unique vocal identity. This personalization aspect of the technology is particularly significant, as it allows patients to maintain a strong connection to their own voice and identity [2].

  - AI voice technology: New AI voice technologies allow users like me to create their natural voices using previous videos or voice recordings. The new AI voice has intonation and emotions and doesn’t sound like a computer-generated voice. I’m excited about my new Eleven Labs AI voice because it sounds like me!

Mobility and Daily Living Aids

Maintaining mobility and independence in daily activities is crucial for ALS patients. Various adaptive equipment and technologies have been developed to support these needs:

1. Mobility Aids:

   - Walkers, Canes, and Wheelchairs: These aids help patients move safely and independently, reducing the risk of falls and injuries [3]. Since I can no longer walk, I use a PerMobil power wheelchair for my big butt!

   - Self-Transfer Boards and Grab Bars: These tools assist patients in transferring from one position to another, such as from a bed to a wheelchair, enhancing their ability to maneuver independently [3]. While I don’t transfer anymore, we usually use a shower chair to transfer me. Imagine using a transfer board for a large guy like me. I think the caregivers would be challenged!

2. Assistive Daily Living Tools:

   - Lifts: We have ceiling lifts (provided by 101 Mobility) in the Roswell and Auburn houses. We also use a Hoyer lift when we’re traveling. These lifts allow Carol and my caregivers safely transfer my big ass.

   - Shower Chairs: These aids ensure safety and comfort during bathing, allowing my caregivers to maintain my hygiene.

  - Ventilators: I use a VOCSN ventilator, which is an all-in-one ventilator. Typically, you must carry many extra devices, such as a cough assist machine, a nebulizer, a suction machine, and an oxygen concentrator. All of these have separate plugs and chargers. You must have backups for all these devices. Imagine us going to games with all these devices! Fortunately, we have the VOCSN! VOCSN stands for ventilator, oxygen concentrator, cough, suction, and nebulizer. Because it’s an all-in-one device, we must carry a backup VOCSN instead of all these extra devices and their backups.

  - Connected devices: I can control the TV, lights, environment, and shades from my eye-gaze computer. I don’t have to wait for Carol or my caregivers to change the TV station or turn on the lights. Much like your smartphone, I can control many things from my computer.

Telemedicine and Remote Monitoring

The COVID-19 pandemic accelerated the adoption of telemedicine, which has proven particularly beneficial for ALS patients:

1. Teleconsultations: Remote consultations with healthcare providers reduce the need for travel, which can be challenging for me and Carol. This approach also minimizes the risk of nosocomial infections (I don't even know what that means!) [1] [6].

2. Telemonitoring: Continuous remote monitoring of respiratory function, nutritional status, and other vital parameters helps in timely intervention and better disease management [1] [6].

 Emerging Technologies

Several cutting-edge technologies are being explored to further enhance the quality of life for ALS patients:

1. Robotics: Robotic devices can assist with physical tasks, such as feeding and mobility, providing additional support for daily activities [1] [6].

2. Virtual Reality (VR): VR can offer cognitive stimulation and recreational activities, helping patients stay mentally active and engaged [1].

3. Artificial Intelligence (AI): AI-powered systems can improve the functionality of communication devices and other assistive technologies, making them more intuitive and user-friendly [1].

4. Brain-Computer Interfaces (BCIs): BCIs detect brain signals and translate them into commands for communication devices, providing an alternative for those who cannot use eye-tracking [1] [4]. I will write a separate blog on BCIs soon.

Conclusion

Technological advancements for ALS patients are transforming how I live, communicate, and interact with their environment. From sophisticated communication aids to practical daily living tools, these innovations empower me to maintain my independence and improve my quality of life. As research and development continue, the future holds even more promise for those living with ALS, offering hope and enhanced support through technology.

I'm grateful to all the scientists and researchers who have dedicated their lives to finding innovative solutions for me and my fellow ALS people LIVING with ALS. Thank you, Thank you, Thank you! 

 

Citations:

 [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7403097/

 [2] https://theadultspeechtherapyworkbook.com/als-speech-therapy/

 [3] https://www.alimed.com/als-blog/

 [4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9090469/

 [5] https://www.alshf.org/assistive-technology-1

 [6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8776511/

 [7] https://www.als-mnd.org/support-for-pals-cals/clinical-care/speech-therapy-and-communication/

 [8] https://lesturnerals.org/als-mobility-guide/

 [9] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096454/

 [10] https://www.liftseat.com/advancements-als-research-and-assistive-technology-give-hope-brighter-future

 [11] https://alsnewstoday.com/aids-and-adaptations/

 [12] https://amyandpals.com/communication-solutions-gallery/

 [13] https://www.medicaldevice-network.com/features/the-future-of-als-devices-next-gen-assistive-technology-aims-to-give-patients-a-voice/

 [14] https://www.youralsguide.com/mobility-and-als.html

 [15] https://www.childrenshospital.org/programs/als-augmentative-communication-program/protocol-assessment-considerations/voice-preservation/speech-generating-devices

 [16] https://www.als-mnd.org/support-for-pals-cals/clinical-care/technology/

 [17] https://www.youralsguide.com/mobility.html

 [18] https://teamgleason.org/pals-resource/communication-devices/

 [19] https://www.ochsner.org/shop/home-medical-equipment-hme-total-health-solutions-ths/products-for-people-with-als-lou-gehrigs-disease

 [20] https://www.youralsguide.com/communication.html