Dancing with ALS and Life

AI ART, Ice Bucket Challenge” Life with ALS isn’t something I planned for. It doesn’t fit neatly into the timeline I imagined for myself. Instead, it interrupts—quietly at first, then more loudly—until forced to look at my life through a completely different lens. ALS, or Amyotrophic Lateral Sclerosis, is often described in clinical terms: a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. But those words don’t capture the lived experience. They don’t explain what it feels like to slowly lose physical abilities while your mind remains fully aware. They don’t describe the emotional landscape—the grief, the fear, the resilience, and, surprisingly, the moments of deep clarity and gratitude. The Reality Behind the Diagnosis At first, life becomes a series of adjustments. Tasks that once felt automatic—buttoning a shirt, walking across a room, lifting a cup—require intention, patience, and sometimes help. Independence begins to shift, and with tha...

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...

         dancingwithalandlife.blogspot.com AI ART, “Golden Flow Of Neurons Surrounded By Emotions”  “ True emotional healing doesn't happen without feeling. The only way out is through.”                           ~ Jessica Moore

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...

  “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” Philippians 4:8

dancingwithalsandlife.blogspot.com Living with a terminal illness sometimes feels like a wild roller coaster ride. I’m at the bottom of the track and slowly up I go. Click, click, click, I make it to the top of the hill. Then, in an instant, I plummet at high speeds into the valley below. I start going up another small hill and back down again and then up ahead, I can’t see.  All of a sudden, I'm whipped around a sharp turn. This journey has so many facets, and it changes from moment to moment.  Initially, the diagnosis comes and whiplash hits. I'm trying to process things in a state of unbelief. I begin to mourn some of the losses, maybe check out for a little and then I have a choice to make: will I turn left or right or keep going straight? Depending on the choice I make, the result is the difference between feeling a sense of hope, purpose or maybe despair.  Some people‘s journeys are very short at this stage of the ride and others may be more of a lengthy one.  ...

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

dancingwithalsandlife.blogspot.com Time travel can be a way to connect and build relationships with people. In this blog, I will be talking about what my transportation experiences have looked like with ALS and my disabilities. However, before we do, let’s take a trip down memory lane. I remember the first time I got into a car with my drivers permit.  As a joke, my father put on a motorcycle helmet, looked at me and said, “I am now prepared to teach you how to drive!”  I laughed so hard, I almost peed my pants!  Looking back, he probably was pretty smart and realistic. My first car was a manual stick shift.  If you have ever driven stick shift, you know there is a learning curve to having smooth transitions between the gas, clutch and gears. After several months  of practicing my Mario Andretti skills, I officially passed my drivers test in 1988 at the age of 16.  I couldn't wait to get behind the wheel of the car and experience the feeling of independence...