Health Archives – Scott A. Cook

Festival of Words 2025 – “Pantera”

The word “pantera” primarily translates to “panther” in English. Who knew? It’s the Spanish and Italian word for the ‘large cat’; often used to refer to a black leopard. I choose to use pantera during my very own Festival of Words, coming up from Sept 24-30, 2025. This seven-day celebration is an authorship reflection of myself and my part in the state of the human condition. During this time, pantera will be treated as an ‘acrostic’; each letter of the word stands for a value, mindset, or action that can elevate someone’s life. Pantera also ties into my health diagnosis of the rare, incurable disease, CIDP, and my survival journey of the last twelve years. Power and strength, courage and fearlessness, mystery and spirituality. When I look back, I was a panther in every sense of the word. I still am. Allow me to share the entire acrostic meaning of pantera from my Festival of Words, in case you don’t catch it on social media. As you read and reflect, please realize, with this knowledge, comes the responsibility of sharing it. My Acrostic Meaning of ‘Pantera’ P = Perspective A = Authenticity N = Nurture T = Truth E = Empathy R = Resilience A = Attitude Day 1: Perspective Every single thing we touch, taste, smell, experience and SAY is guided by Perspective. Look around you. Words. Too many words, pictures, desires, falsehoods. Sensory overload. Plastic existences. A world suffocating under its own human inventions. Perspective can change all that. Silence the overload. Remember why it all is. * Temporary is inevitable for everyone. * Perspective is ingenious. * It’s not too late. Day 2: Authenticity Authenticity isn’t about being perfect. It’s about being real. That’s where the magic happens in our daily lives – if you’re brave enough. When we stop trying to be who we think others want us to be, even who we want ourselves to be, and start embracing our genuine selves, something beautiful shifts. Our relationships deepen because people connect with our truth, not our ‘performance’. Our stress levels drop because we’re not constantly managing a facade. We make decisions that actually align with what matters to us, leading to a life that feels genuinely fulfilling rather than exhaustingly curated. To cultivate authenticity is to embark on the most rewarding journey possible: the journey home to ourselves, where we discover that our greatest gift to the world isn’t our perfection, but our willingness to show up as we truly are, inspiring others to do the same. * Embrace the imperfect you. * No apologies. * You know who you are. Day 3: Nurture Your soul needs a big, warm hug and you didn’t even know it! Nurturing is the gentle art of tending to what matters. A friendship, a dream, your own well-being, or even that little plant on your windowsill. It’s the sacred alchemy of conscious cultivation, transforming the raw materials of human potential into extraordinary realities through deliberate acts of care and attention. When we actively nurture the good stuff in our lives, everything starts to bloom in ways we never expected. That friend you check in on regularly becomes your biggest cheerleader. The skills you patiently develop become your superpowers. The kindness you show yourself on rough days becomes your unshakeable resilience. * It’s so simple. * Don’t water the plant, the plant dies. * We can be dead on so many levels. Day 4: Truth I grew up in a household that would not tolerate even the tiniest mistruth. If you did make the mistake of telling a lie, it was time for Dad’s belt. There is something to say about a bit of parental fear but that’s a whole other article. Truth is fucking messy, uncomfortable, and absolutely liberating all at the same time. We spend so much energy dancing around it, sugarcoating it, or hiding from it, but here’s what I’ve learned: living in truth is like finally exhaling after holding your breath for years. To live in truth is to choose radical freedom over comfortable delusion, knowing that while honesty may initially challenge us, it ultimately becomes the foundation upon which we build a life of profound meaning, connection, and purpose. When you commit to truth, you attract people and opportunities that align with who you actually are, not who you might be pretending to be. * The truth will set you free. * You don’t have to like it. * Don’t wait for your death bed. Day 5: Empathy How often do you say, “I see you. I hear you. I understand you.” Do you really mean it? That’s Empathy. It emerges all around us as the essential thread that weaves humanity together, yet we are witnessing first hand its gradual erosion in an age of digital disconnect and polarized discourse. In our rush to be right, to defend our corner of the internet, or just to get through our packed schedules, we’re losing the beautiful art of truly seeing each other. When we pause to really listen, when we try to understand someone else’s story before jumping to conclusions, something shifts. Our relationships get deeper, our communities get stronger, and we feel less alone. * Nobody’s that busy. * Be an architect of Empathy. * “Hey, what’s that like for you?” Day 6: Resilience Resilience isn’t just about bouncing back from rough times. It’s about learning to bend over backward without breaking. Some people are masters at this without even realizing it. Think about those living with chronic illness who wake up each day not knowing what their bodies will throw at them, yet still find ways to laugh, love, and contribute to the world. They show us that strength isn’t about never falling down; it’s about getting creative with how you keep moving forward.

Books, Health, Human Condition, Transformation, Truth / Scott A. Cook

Festival of Words 2025 – “Pantera” Read More »

CIDP – In The Beginning

When I was first diagnosed with the rare, incurable disease called CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy), my doctor came into the office after all the standard tests and said, “Well, I think you have CIDP. You better go home and Google that.” Then he abruptly walked out the door. Truth. I was left sitting alone stunned, shaking and most of all terrified. When I finally made it out to my truck and used the Google to look up CIDP, I fell apart. FYI: don’t launch Google after any diagnosis! This is how a doctor is NOT to handle a patient who has just been given what seems like a death sentence except you don’t die. Not really. This post is full of twelve years of CIDP wisdom and meant for anyone, whether you were just diagnosed or you’ve been on your journey for years. Knowledge is power! Before I go any further, let me be clear: I am not a doctor. I am a CIDP patient. Twelve years. I have a severe, advanced case considered Stage 5 by The Mayo Clinic (Jacksonville, FL). I’ve gone from mere tingling in my feet to complete immobility. I use a wheelchair and an ECV scooter wherever I go. I am here to share my experiences in the hopes of enlightening you on your path to creating a better quality of life, even with CIDP. Things to Understand and Ponder If you were just diagnosed, let me say I am so sorry. Also, you are validated. You are seen. You are a Warrior. There is a lot to learn about this disease. Treatment alone can take a while to find the right applications that work for you. Consider what type of doctor diagnosed you. You really should be with a neurologist who specializes in rare diseases. The diagnosis of CIDP can be very tricky. It took an entire year for me to have a solid diagnosis. Standard tests include: nerve conduction, electromyogram (EMG), lumbar puncture, and lots of blood labs. There could also be a muscle & nerve biopsy, genetic tests, and sensory tests, as necessary. FYI: CIDP can be easily confused with many other autoimmune diseases. Be patient if you are still testing after a few weeks or even months. Once you are truly diagnosed with CIDP, please understand that this is a rare, incurable autoimmune disease. Rare means many doctors are not qualified to give long-term care in something they don’t understand; it’s not on their ‘radar’. Incurable means it cannot be cured, and you will live with this disease for the rest of your days, so proper treatment is crucial to maintain the patient’s quality of life. Autoimmune means the disease can flare or ‘attack’ at any given time, automatically. Additionally, it is very common that once you truly have an autoimmune disease that it will trigger other autoimmune diseases. The only way to know is to go down the rabbit hole of tests and labs to disqualify each possible second disease. You should step back a moment and make a list of all concerns you have, then move them around to prioritize what needs to be worked on first. I have kept a notebook on my phone full of every step of my journey since 2015. It has kept things organized and understandable along my rocky road, both to me and my healthcare team. Realize that not everything can be worked on all at once. If you make a list and understand what needs ‘priority help’, you can create a day-by-day schedule and feel in better control. Last, no matter what advice you receive in our gracious CIDP community, mine included, all your concerns need to be shared with your health care professionals first. Our patient community can only offer support. The doctors are the ones who will be taking care of you. Important: If you feel your doctor isn’t listening, you may need to find another medical professional. This is a serious disease that requires your voice as well as the doctor’s. You have begun a long-term relationship and it cannot become one-sided or it will fail as time wears on. Here is a great website for research to understand what CIDP is and what resources are available: GBS/CIDP Foundation International You’re Not Crazy – You’re Recreating I remember in the beginning of my diagnosis when everything in my head began spinning out of control. I couldn’t grasp the disease, how it was disabling me and the independent control I was about to lose. I never went to counseling but let me strongly suggest that if you can’t mentally handle this new life you never asked for, SEEK HELP. So many times, we are deep in the treatment and physical side of trying to move ahead that we forget the mental side of things. Our mental health is just as important, maybe even more. Embrace. Embracing I had an incurable disease was something I had to accept before I could really move ahead with healing mentally. Having an incurable disease is like grieving death. You go through the cycles of grievance except it never truly ends. To accept who you are now and what has happened, you have to embrace everything. The disease, the devastation, the support you need, the new life you have to create …all of it. This does not happen overnight but if you consciously work on embracing the truth, your mentality will prepare you to move ahead with clarity. Purpose. I had the great fortune of doing some patient advocacy work on a podcast and met my very first friend who had CIDP. We were both being interviewed and she brought up that she went through a dark period where she felt useless but couldn’t put her finger on it. In a flash of wisdom, one day she realized

Chronic Illness, Health, Rare Diseases, Transformation / Scott A. Cook

CIDP – In The Beginning Read More »