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

LIVING with ALS: Grateful for My Caregivers

In a world often clouded by chaos, a beacon of selflessness and compassion shines—the ALS caregiver (aka Bernadine, Alicia, Erica, Regina, and Michelle). These remarkable individuals embody the essence of love, sacrifice, and unwavering support as they navigate the challenging journey alongside those living with Amyotrophic Lateral Sclerosis (ALS). Reflecting on their tireless efforts, it's time to illuminate their profound impact on my life and express my heartfelt gratitude.

ALS, often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disorder that robs individuals of their ability to control muscle movement, eventually leading to paralysis. In the face of such a relentless adversary, caregivers stand as pillars of strength, providing physical assistance, emotional solace, and companionship.

Every day, these ladies demonstrate extraordinary resilience and empathy, tirelessly tending to the needs of their patients with grace and dignity. From helping with daily tasks like eating, bathing, and dressing to offering unwavering emotional support during moments of despair, their dedication knows no bounds. They become advocates, confidants, and cheerleaders, walking hand in hand with those LIVING with ALS through every triumph and setback. Their unwavering strength is not just admirable; it's inspiring. They aren’t just caregivers; they are family to Carol and me. 

But their role extends beyond mere caregiving; it encompasses the essence of unconditional love. They witness the gradual loss of independence and the physical toll the disease exacts, yet they remain steadfast in their commitment, offering comfort and reassurance in the face of uncertainty. Their selflessness is a beacon of hope, illuminating the darkest days with love and compassion.

The journey of an ALS caregiver is not without its challenges. It demands immense strength, patience, and sacrifice. The emotional toll can be overwhelming, yet they persevere, often putting their needs aside to prioritize my well-being. They adapt to ever-changing circumstances, embracing each day with courage and resilience.

As I express my gratitude to these women, I must also recognize the importance of the support networks and resources that enable them to fulfill their vital roles. Whether through respite care, counseling services, or community support groups, these resources provide invaluable assistance to caregivers, helping to alleviate some of the burdens they bear and reinforcing the importance of community in caregiving.

In honoring Bernadine, Alicia, Erica, Regina, and Michelle, I honor the very essence of humanity—the capacity for selflessness, empathy, and love. Their unwavering dedication is a testament to the power of compassion and the resilience of the human spirit. Bernadine, Alicia, Erica, Regina, and Michelle, I extend my deepest gratitude for your profound impact on my life and Carol’s, those you care for, and the world at large.

In the tapestry of life, these ladies have threads of love, compassion, and hope, illuminating the path for others to follow. May I never cease to recognize and appreciate their invaluable contributions, and may their tireless efforts be met with the gratitude and support they so richly deserve. 

From the bottom of my heart, Thank you, Thank you, Thank you to Bernadine, Alicia, Erica, Regina, and Michelle!!! 

LIVING with ALS: My Faith is My STRENGTH

Faith is a powerful force that gives us strength and hope in moments of doubt and uncertainty. The belief in something greater than us, a higher power, guides and protects us. Whether it is faith in a religious deity, a spiritual connection, or simply in the goodness of humanity, faith can provide comfort and reassurance in times of need. It is a deeply personal and profound experience that can help us navigate life's challenges with grace and resilience. In a world filled with skepticism and cynicism, faith offers a beacon of light and inspiration for those who choose to embrace it.

Since my ALS diagnosis, my life has changed in more ways than I could have ever imagined. While there have been many challenges and uncertainties that come with living with a terminal illness, my faith has only grown stronger through it all. I have found comfort and peace in my relationship with Jesus and have become a devoted follower of him. My faith has been my rock through the toughest of times, and I am grateful for the support and strength that it has provided me with. Though my journey with ALS has been difficult, my faith has given me hope and a sense of purpose that has been genuinely life-changing. I know that with Jesus by my side, I can face whatever lies ahead with courage and grace.

Merriam-Webster defines faith as the belief and trust in and loyalty to God. I have always had faith, but did I really TRUST God? I grew up in the church (specifically, the United Methodist Church). I sang in the youth choir. I attended MYF (Methodist Youth Fellowship). I even went on the MYF’s trips to the Appalachian Trail in Georgia and rode over 500 miles throughout Europe with a Christian group called Spinning Spokes. We rode through parts of Luxembourg, Germany, Belgium, Netherlands, and France. Imagine a bunch of 15-year-old knuckleheads rolling throughout Europe!   

But, when I went to college and started my career, I drifted away from the church and lost my moral compass. I was too busy chasing success to attend church. I was too busy chasing things that didn’t matter in the long run.

I recently read a devotion by the late Dr. Charles Stanley of Intouch Ministries. It said, “What keeps us from sitting at God’s table and rejoicing in the story of God’s faithfulness in our life? Three obstacles come to mind: striving, discontentment, and deception. Striving is the internalized sense that we must always keep moving forward in pursuit of success, money, and acclaim. We think, More is always better, and rest is for the weak. This inability to slow down and appreciate God’s gifts breeds a profound sense of unfulfillment, making joy and peace elusive. The world’s competitive striving and restless dissatisfaction are fueled by the enemy’s most ancient and insidious deception: My way is better than God’s way”. I was always searching for success but didn’t find any, leading to a sense of unfulfillment. I lost God’s way! 

When we got married, we tried several churches but found their messages too political. I want to go to a church that has uplifting messages and helps me follow Jesus—not to be told what I can or can’t do! But Jesus kept working on me!

Fast forward to 2019, when I was diagnosed with ALS, I was missing something in my life: a moral compass. But Jesus kept working on me! When our neighbors, Brent and Amy McSpadden, invited us to sit with them at Northpoint Community Church, I wasn’t sure; it was such a BIG church! But Jesus kept working on me! We said “yes” and found Andy Stanley’s messages uplifting and inspiring (without hinting at politics). He encourages us to follow Jesus every day. I wasn’t ready to commit my life to Jesus, but Jesus kept working on me. 

On August 29, 2021, I recommitted my life to Jesus and was baptized by my good friend Bill Willits (whom I’ve known since we grew up in the same church in Palm Beach Gardens, FL) at Northpoint Community Church. Jesus has been working on me since then. I’m so grateful to Brent and Amy for their invitation. God puts people in place at just the right time and place! It was another God wink!

 

I read a book where James 1 verses 2-3 quoted, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.” I am currently facing a trial LIVING with ALS. Without God in my life, I couldn’t handle the perseverance I’m facing. But with God, I can handle anything. I am not trying to fight ALS. I am not in a battle, nor am I angry with ALS. I choose to live with ALS.  I have a lot to live for, which keeps me going positively. 

I often think back to that day in January 2019 when I heard, “I’m sorry, but you have ALS.” Was God punishing me for my past sins (believe me when I say that there were some whoppers)?  I don’t think that is the case because I asked God for forgiveness for my past sins. And I believe that God is a forgiving God. Or was God putting me through this ALS trial to get my attention? Because I was going down a path that was a dead end. Or did God have a bigger purpose and plan for me? I think God was trying to get my attention because God had a bigger purpose for me. 

I know that God has a plan for me. I believe there is a purpose that God wants me to serve. I believe the purpose is to share how important today is and try to make a difference in this world. Make today your best day. 

When facing a terminal disease, there comes clarity on how important each day is. You cannot change yesterday, and tomorrow is not guaranteed. So, each day is a blessing. I did not understand that when I was caught up in trying to find success and busy with things that didn’t matter in the long run. I have realized how much joy there is in positively impacting 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. As I said earlier, 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!

Make Today Your Best Day by serving others is a powerful reminder that selflessness and generosity can lead to immense personal satisfaction and fulfillment. By taking the time to help others through acts of kindness, volunteering, or simply being a supportive presence, we positively impact those around us and cultivate a sense of purpose and meaning in our lives. When we prioritize the well-being and happiness of others, we create a ripple effect of positivity that can transform our day and the days of those we touch. Ultimately, serving others allows us to tap into our potential for compassion, empathy, and connection, making each day a little brighter for everyone involved. 

One of my favorite Bible verses is, “Give your entire attention to what God is doing right now and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.” (Matthew 6:34 MSG). 

Since I began my ALS journey, my faith is much stronger than it has ever been. I get up each morning and often thank God for giving me another day of life. I pray and read scriptures and devotions. Today, I’m a much better Jesus follower than I was when I began this journey. I’m not perfect, but you don’t have to be to follow Jesus.

Following Jesus means not only believing in him as the Son of God, but also living out his teachings in our everyday lives. It means embodying qualities like love, compassion, humility, and forgiveness in our interactions with others. Following Jesus involves seeking to serve and care for those in need, just as he did during his time on earth. It means walking the path of righteousness and striving to become more like Christ in our thoughts, actions, and attitudes. Following Jesus requires a commitment to his teachings and a willingness to surrender our own desires to fulfill his will. Ultimately, following Jesus is a life-long journey of faith, obedience, and trust in his guidance.

While reading this, Bill Willits said, “Maybe you can relate to this passage. I know I can. Luke 17:1 says in part, “Things that cause people to stumble are bound to come…”  What are the things we chase that can ultimately cause us to stumble? Disappointment, unemployment, poverty, riches, people, disease, and death of a loved one. They can all cause us to stumble when they happen to us or to those we love. The question is, where do we turn in those moments? They are promised to come, but where do we seek comfort and meaning out of the seeming meaningless? Do we run to God or from Him in those times? Is he the source of our strength at that moment, or are we trying to find it elsewhere? And are we allowing anyone to run with us at that time”? 

Please don’t wait for tough times or a diagnosis to find your faith (like I did). Trust Jesus! Trust God! Become a Jesus follower! Serve others, love others, forgive others, just like Jesus did. 

I am finding that faith and ALS are never-ending journeys. And you don’t have to be perfect to find joy in your God-given purpose. 

My Real Hero: My Brother, Bill Godfrey

Often, people say I am an inspiration or a hero. This makes me very uncomfortable. Because I’m just a guy trying to LIVE with ALS. The real heroes are the men and women who defend our great country, willing to die serving their country. And the real heroes are our first responders. The first responders run into burning buildings and save lives. 

My brother, Bill Godfrey, was a firefighter for 25 years. He retired from the fire service in 2008. Bill ran into many burning buildings and saved countless lives because he was a paramedic also. Bill rose to the level of Fire Chief for a municipality in Florida. He was a deputy Fire Chief overseeing over 1,100 EMT’s and paramedics in Orange County, FL. Needless to say, I am very proud of my brother Bill. Because Bill did something I couldn’t do, risk his life. He is my HERO! 

Growing up, we couldn’t have been so different. Bill liked electronics and playing with the early computers from Radio Shack (remember those – TRS80 Model 1). I liked playing sports, primarily basketball. We did have one thing in common, our love of boats and being on the water. We had a catamaran sailboat growing up (like a Hobie Cat, but a cheap knockoff our dad rebuilt). We would roll it down to the local park and sail for hours on the intercoastal waterway. 

Growing up we didn’t get along very well, like most brothers. We fought a lot. Maybe it was because me and my friends called him Billy. Maybe it was because I tormented him with the song “Billy Don’t Be a Hero” originally by Paper Lace. Maybe it was because I let Bill antagonize me and get under my skin.  One time, our mother got so frustrated with us, she told us to go outside and fight and not come back in until someone was bleeding! I thought this turn of events was awesome because I now had license to beat the s*#t out of my brother! Bill, not so much! Our neighbor saw us fighting and rolled his window open and yelled, “Hey, hey what are you doing?” We told him that mom said go outside and fight until someone was bleeding. With that, mom ran outside so fast, she would have won a gold medal in the Olympics! 

My biggest regret was that Bill and I didn’t have a better relationship with each other growing up. Because that has led to a distant relationship now. I spent all my time chasing success, focusing on my career. Chasing things that don’t matter in the long run. Don’t get me wrong, I love my brother. And I’m sure my brother loves me too. I just wish we could be closer. I wish I could talk to Bill every week to just catch up with each other. I wish we would text back and forth. I get jealous when I see others have a close, loving relationship. So, I texted him today just to say hi and I was thinking about him.

Did I say I’m proud of Bill? He is an entrepreneur now and has his own business. Bill is a genius when it comes to technology. His business trains first responders in active shooter training. He has developed simulation techniques to train men and women in a safe environment. Did I say I’m proud of my brother? 

Now, Bill helps me a lot on my ALS journey. Whether that’s helping Carol with some respite care going to see her family or helping with visual technology to help me communicate better. He has done this with his own personal investment just to help me. He has done this with the love he has for me. I am very grateful for his love and for helping me and Carol. 

Don’t wait for a terminal disease to repair your relationships like I did. Repair your relationships now. Love one another. Like Jesus said in John 13:34 (NIV), “A new command I give you: Love one another. As I have loved you, so you must love one another”. Do you know that “Love one another” appears at least 16 times in the Bible? Be like Jesus. I have a lot of repairing to do. I just hope I have enough time to do it! 

#maketodayyourbestday #EndALS #FaithoverFear 

LIVING with ALS: Celebrating In Dependence Day

One of the hardest things about LIVING with ALS is the loss of independence. You become dependent on everyone else to do things for you that you used to do on your own. Before my ALS progression, I used to be very independent. If I wanted to do something, I usually did it. Now I am dependent on others for everything! Losing your independence sucks! But I’m #grateful to be ALIVE!

Losing your independence is gut wrenching. Imagine no longer being able to drive. You can’t go to the store or get a bite to eat at your favorite restaurant. I must have someone drive for me, usually that’s Carol in the Big Ass Van. I have to have someone else sit with me in the back of the van in case I need to cough, or something else I need, or in case of an emergency. Losing your independence sucks! But I’m #grateful to be ALIVE!

I have to have someone dress me daily. Imagine no longer being able to brush your teeth or shave. I can no longer shower myself. It takes 2 people to safely shower me (usually Carol and a caregiver). Don’t get me started on going to the bathroom (either #1 or #2), I must have someone help me with that too. The loss of privacy and dignity takes a toll on me. Losing your independence sucks! But I’m #grateful to be ALIVE!

Someone has to feed me 4 times per day (I have a figure to maintain). I have to get hydration whether it’s water or beer, after all I’m a BEER MAN! Just think about not being able to go to the refrigerator and get your favorite beverage. Or go to the pantry and get your favorite snack. Losing your independence sucks! But I’m #grateful to be ALIVE!

I must depend on others to change the TV channel for me. Because I can no longer control the remote. I have to ask someone to turn the lights on or off. I do have some technology that allows me to control the TV, lights, and even the shades from my computer. At least I have something I can control! Losing your independence sucks! But I’m #grateful to be ALIVE!

It takes 2 people to safely move me from the bed to my chair during the day. Once I’m in my recliner I generally don’t move anymore until bedtime. Because it’s too difficult on Carol and the caregiver. I’d like to go outside more or just go out more, but that too is difficult to safely move a 6’ 8“tall, 285-pound guy around! Losing your independence sucks! But I’m #grateful to be ALIVE!

Don’t get me wrong, I have the best caregivers in the world, including my primary caregiver and the love of my life, Carol! I appreciate everything they do for me! I love them all! They have become family to me and Carol. But I would like to have some of my independence back. Losing your independence sucks! But I’m #grateful to be ALIVE!

Despite losing my independence, I’m #grateful to be ALIVE! I’m #grateful that I have great friends and family who surround us with love and support. I’m #grateful for my caregivers, Bernadine, Alicia, Erica, and Regina who give me so much love and take great care of me! They are truly the best in the world at what they do! They are truly a gift from God! I am a very blessed man.

Be #grateful for what you do have. You might lose it tomorrow. John Wooden once said, “do not let what you can’t do interfere with what you can do”. I think that’s an important lesson for all of us.

What are you #grateful for?

#maketodayyourbestday #EndALS #FaithoverFear #grateful