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 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 ...

dancingwithalsandlife.blogspot.com Experiencing slow but continual motor function loss of my arms, hands and now in my legs, sucks!. Prior to living with ALS, I was very active with a busy life consisting of my career and family. For self care, I enjoyed hobbies to help me decompress from the world.  In 2021, my busyness came to a screeching halt going from 100 miles an hour to nothing and gave me unbearable whiplash. I just felt so lost when everything was being stripped away from me, especially all my hobbies that required using my hands such as gardening, baking, crafts, crocheting, and reading. Focusing on the losses just threw me into a tailspin of deep depression and self isolation. I would spend countless hours scrolling through webpages on 101 hobbies to try, hoping and praying for hook, line and sinker that would fit my new normal. I even googled activities/hobbies for disabled individuals. Funny thing is, the website said disabled individuals should try gardening, puzzles...

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  As a medical social worker for many years I would joke with my peers, aka Besties, that we need to write a book about some of the patient/family scenarios we dealt with because we would say “we can’t make this shit up.” I never imagined in my 50’s that I would consider writing a blog or book from the perspective of someone who was diagnosed with a terminal condition, called ALS. I’m not a writer, nor do I feel like I’m good at it. Honestly, I think this will never get published, and it would be more for my family and my closest friends to read if they are interested. Who knows, maybe it won’t be read by anyone. However, after thinking about the subject matter and sharing my idea with a few close family members and friends, their words of encouragement made it clear that I should move forward and give it a try. One thing I can guarantee you, my writing will be sincere, truthful, and from the heart. Since my diagnosis, there have been so many momen...