Dancing with ALS and Life

dancingwithalsandlife.blogspot.com AI ART, “Community United” 🇺🇸Happy Memorial Day!🇺🇸 Honoring those who made the ultimate sacrifice.   “Even when the body grows still, the spirit continues to speak—through love, through care, through awareness, and through action.” 5/26

dancingwithalsandlife.blogspot.com AI ART, “The Iron Horse “ One of the most famous lines from Lou Gehrig comes from his farewell speech at Yankee Stadium in 1939: “Today, I consider myself the luckiest man on the face of the earth.” He delivered it after being diagnosed with ALS, speaking with gratitude rather than bitterness despite the career-ending illness.  5/26

                                         dancingwithalsandlife.blogspot.com AI ART, “Blue coneflowers symbolize ALS and are used to raise awareness of the disease.”  🩵💙 More Than Facts: The Heart Behind ALS Awareness 🩵💙 There are facts we can learn.   And then there are truths we can feel. ALS Awareness Month in May invites us to do both. Because understanding ALS isn’t just about knowing what it stands for or how it affects the body—it’s about connecting those facts to the real, human experiences behind them. It’s about seeing the person, the caregiver, the love, and the strength that lives within every single day.

AI ART,  “The Arrival” My hummingbirds are returning back to Pennsylvania my first sighting was on 4/25/26 on my front porch.   “ Courage is Grace under pressure.”  ~ Ernest Hemingway  May Is ALS Awareness Month 4/26

AI ART, “Caregivers = Heros” There are quiet heroes among us—people whose strength doesn’t always make headlines, but whose impact is deeply felt every single day. Today, this is a heartfelt shout-out to the caregivers who stand beside individuals living with ALS. Caregiving in the world of ALS is unlike anything most people will ever experience. It’s not just helping with daily routines, it’s stepping into a role that requires patience, adaptability, resilience, and an extraordinary depth of love. As ALS gradually changes the physical abilities of a person, caregivers become steady anchors in an ever-shifting reality. You are the ones who make sure electronic devices are set up so we can stay in touch with the world or learn new ways to communicate when words become difficult. You are the hands that help when muscles can no longer cooperate. You are the calm presence in moments of frustration, fear, and exhaustion. And you do all of this while carrying your own emotions, often quietly...

dancingwithalsandlife.blogspot.com AI Comedy Club  Let’s just get this out of the way: ALS is not funny. Not even a little bit. It’s tough, frustrating, unpredictable, and on many days, downright exhausting. But here’s something that might surprise you, life with ALS can still include laughter. Real, honest, sometimes snort-out-loud laughter. And no, it doesn’t mean you’re ignoring reality. It means you’re refusing to let reality take everything . Because if ALS is going to show up uninvited and start rearranging my life, I might as well get a few jokes in at its expense. Take the whole “dropping things” situation. Pre-ALS, I would drop my phone and think, Oops. With ALS, when I drop my phone or any other items suddenly it becomes a full-blown event. There’s the stare-down phase (“Can I reach that?”), the negotiation phase (“Do I actually need it right now?”), and finally the acceptance phase (“Cool, the floor owns it now.”). Honestly, if floors could talk, they’d be like, Thanks ...

dancingwithalsandlife.blogspot.com AI ART,   Watercolor “Spring basket of joy” “The  first blooms of spring always makes my heart sing.” ~S.Brown

dancingwithalsandlife.blogspot.com AI ART, “Rays Of Hope” There are diagnoses that change a life, and then there are diagnoses that redraw the entire map. ALS is one of the latter. It arrives quietly, perhaps as a slight weakness in an arm, muscle twitches or a trip while walking that feels a little out of place, and then steadily, relentlessly, begins to take more. Muscles weaken and independence shifts. The future, once bright with many dreams waiting to bloom, can suddenly feel dark with dreams withering and fading away. And yet, even here in the midst of the new roadmap hope finds a way to exist branching off in many different directions. Hope doesn’t always look the way we expect it to. Sometimes, hope is quiet. It lives in small victories: a good day of energy, ability to safely transfer from my wheelchair to the bathroom, a shared laugh that feels like a return to normalcy. It shows up in the determination to adapt, to keep participating in life even as the road is constantly ch...

dancingwithalsandlife.blogspot.com When life gives you a hundred reasons to cry show life a thousand reasons to laugh and smile!

  One topic people typically don't like to talk about is death and funerals. For some reason, it gives them the heebie-jeebies.  People don't like to think about, or acknowledge, their  own mortality. However, I have always found the topic very fascinating from so many standpoints, especially since we all experience the death of a loved one, and we will all die at some point. While working in local nursing homes, I was exposed to hospice care and the dying process on a weekly basis. Throughout my career as a social worker, I have made many of those Hospice referrals and walked with many individuals and their families on their journey at the end of life. And I loved it! At one point, I was actually considering going back to school to become a funeral director. I contemplated sending resumes to local funeral homes to see if they would consider hiring a social worker to support families through t...

dancingwithalsandlife.blogspot.com “ Start where you are, use what you have, do what you can.”  ~Arthur Ashe 2/26

 Let us always meet each other with a smile, for the smile is the beginning of love.   ~ Mother Theresa & Follow the LAW  (Love Always Wins) ~ Stacy & Christian   2/26  

dancingwithalsandlife.blogspot.com I try really hard to remain positive and to focus on all the good things that are in my life. And I try to live day by day and not think too far ahead in this shitty situation called dancing with ALS and life because I have been on this journey with symptoms starting six years ago. I learned early on constantly thinking about what I am losing or what will not be, takes me down a mesmerizing spiraling Alice in Wonderland rabbit hole, and I land in a very strange world that I don't recognize nor know where I fit in. When I do land in the strange world, I am determined to claw my way back up and out of the spiraling bunny hole.  I really hate when I feel like I'm wasting even one of my remaining days of life that God is giving me, because I'm just focusing on the negative shit! I find it is imperative to keep my mind busy to avoid further rabbit holes or strange lands.   However, I'm not always successful, and every once in a while, when ...

For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty Go d, Everlasting Father, Prince of Peace.     Isaiah 9:6 Happy Holidays to all my Readers! Blessings for 2026!   Article from ALS Association:   Tips for Having an Enjoyable Holiday Season

This blog was written when the world opened back up after the horrific Covid pandemic.  Since Covid why do restaurants no longer provide customers with spoons and straws? Prior to Covid, I would get a fork, knife, spoon and straws. Now when I go to a restaurant, I only get a fork and a knife and maybe a straw. Did utensils and straws die during the Covid pandemic?  For someone who is losing motor function and has poor hand dexterity, I learned early on eating most of my food, including salads, with a spoon was much easier.  A straw for all drinks is a must because glasses are too heavy for me to lift to my mouth to take a drink.  Yes, I’m even talking about cocktails and coffee. I’m sure you can image the looks I have gotten when I ask for a glass of wine with a straw or need a straw for my piping hot mug of coffee! When I use a spoon, the material it is made out of greatly matters.  The metal can’t be too heavy because I can’t lift it.  But it can’t be pla...

 dancingwithalsandlife.blogspot.com “The soul that gives thanks can find comfort in everything; the soul that complains can find comfort in nothing.” – Hannah Whitall Smith

  dancingwithalsandlife.blogspot.com  Cool, crisp air, sweatshirts, Friday night lights and tailgating are long awaited after experiencing warm summer season of beach vacations and no school. For most Americans, the beginning of fall not only signifies going back to school, it is the start of a very important season, American football. September 4th was the first NFL football game to kick off the season this year.  My Sunday night football started slightly before on Sunday, August 31, 2025. A dive tackle came as a complete surprise, and the interception was perfectly executed. I am surprised there were no yellow flags thrown because being tackled from behind while disabled seems like it definitely warrants throwing a yellow penalty flags.  “Holding” and “unnecessary roughness” on a play. Welcome to the world of a husband who is navigating the game of ALS with his wife. The constant need to always be keenly alert of my position on the field ensuring I can safely get t...

  dancingwithalsandlife.blogspot.com   “Laughter is an instant vacation” ~ Milton Berle

dancingwithalsandlife.blogspot.com    In the beginning of my health crisis, there was an outpouring of support and involvement. However, when the medical condition has a slow trajectory, over time, I find some of the support and involvement dwindles away. I know this is not intentional, and I also know people didn't forget about me, but life is busy and continues to march on. I can honestly say in the past, there were times I wanted to do something for someone, but I got caught up in the daily grind and the opportunity just slipped away. So, I can relate with absolutely no judgment. When I was in this phase though I learned very quickly who my dedicated family/friends are and who was going to waltz with me on this journey by providing her/his devotion and support. A longtime friend of mine one day gave me a very special gift of an elephant along with the story of female elephants. This gift had such a profound impact on me I immediately knew I wanted to share it with all the...