Dancing with ALS and Life

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...

 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 ...

  “A Journey of 1000 miles begins with a single step” ~ Lao Tuzla  and “It’s your road and yours alone, others may walk it with you, but no one can walk it for you” ~ Rumi 1/26

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...

  “The most beautiful things in the world cannot be seen or even touched, but felt by the heart” ~ Helen Keller

  As a teenager, I loved growing up in the 80’s.  It was an era when everyone seemed to have fun.  No one was uptight about things such as being politically correct about everything you said or did. It was a time when you could have a Halloween party and not call it a fall fest or celebrate Christmas instead of calling it a holiday celebration. I especially loved all of the 80’s music from Prince, Joan Jett, The Go Go’s, Pat Benatar, Bruce Springsteen, The Cars, and Madonna. Mostly, I was obsessed with the launch of MTV and when they actually played music videos not reality TV shows. I remember I couldn’t wait to get home from school to check out the next new music video.  On the weekends, I’d stay up past midnight watching all those videos. I loved my walkman and purchasing music cassette tapes, then a cd player, using the money I earned from my waitress job. The 80’s were also known for blockbuster VHS/CDs and movies like Breakfast Club, Sixteen Candles, St. Elmo’s...