Dancing with ALS and Life

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

dancingwithalsandlife.blogspot.com  I began to take one step forward and then one step backward and I start moving forward again a.k.a. dancing with ALS because it is constantly robbing me of something. For example, I can no longer drive, take a shower on my own, bring a glass to my mouth to take a drink, dress myself and hug my loved ones.  The list becomes endless when living with ALS. These things are all happening while I am keenly alert and aware that the disease will progress . After time marched on and death didn’t come as soon as I thought, I had a choice to make.  Do I continue to remain in the dark spaces, or do I use my faith and decide to start living the life that I’ve been given even with all the nasty things that come along with it? The next fundamental question that presents itself is what is my purpose? Everyone needs to feel a sense of purpose and hope in their day.  It is vital part of our mental health.  Ironically, this was a conversation I ...

dancingwithalsandlife.blogspot.com      “One of the most beautiful qualities of true friendship is to understand and be understood“ ~Lucius Seneca 7/24

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...

dancingwithalsandlife.blogspot.com    I am thankful for my family & friends who are dancing with me on this life journey! Who are you thankful for in your life? 8/10/25

dancingwithalsandlife.blogspot.com  After the initial shock of being told by my doctor that I have a terminal condition called ALS, the next step was to muster up the courage to tell my family, friends, and coworkers of the devastating news.  Sharing this information with others was a very painful endeavor.  Retelling it over and over again was overwhelming and emotionally exhausting not only for me, but for my spouse and my family who had to do the same with everyone with whom they interacted. I was soon ready to send certified letters in the mail so I didn't have to verbalize and relive the pain and grief I was experiencing. Not only was I facing my own grief, I was also facing the stress people felt when I told them the news. I never knew what type of response I was going to get.  Here are some of those responses. People put their arms around me and start sobbing for a long period of time. One person said, “Oh,” and walked away. I guess he didn't know what to say ...

dancingwithalsandlife.blogspot.com        “Tell me, What is it you do with your one wild and precious life?” ~ Mary Oliver  7/15/25 The choice is yours!

dancingwithalsandlife.blogspot.com  I started working at age 15 waiting tables at a local restaurant and helping at my father’s business.  I completed high school, and then I was off to get my bachelor’s degree in social work. During my college years, I had few other small jobs for spending money. With all of those jobs combined, it tallies up to 35 years of earning a paycheck, paying into Social Security and saving for my retirement.  I loved my professional career as a social worker supporting individuals with intellectual disabilities and most of those years, serving the elderly in my community nursing homes. I was forced into retirement due to my ALS diagnosis and the disabilities that came along with it. Because social workers make a modest living, it meant, in order to make ends meet, I had to  apply  for disability benefits.   Applying for disability is a very interesting and long process because it requires tons of paperwork from the doctor val...

dancingwithalsandlife.blogspot.com   "When we are unable to change a situation, we are challenged to change ourselves."   ~ VIKTOR E. FRANKL  10/4/24   

dancingwithalsandlife.blogspot.com    When diagnosed with a disease I was not familiar with, I began to read every book I could get my hands on, and I searched the internet to feel informed about what to expect as I moved forward. Prior to researching the only things I knew about my illness was Lou Gehrig, New York Yankees baseball player, the ice bucket challenge that captured the world and that it was not a good diagnosis to have. After completing my research, reading all those books and looking through websites with all the medical jargon, I still felt totally alone as if no one could truly understand what it was like to walk in my shoes. This was despite having a strong support system with family, friends and attending my first medical appointment at the ALS clinic.  One thing the information grossly lacked was it didn't explain anything about what it was going to be like to truly live with ALS. You know the daily nitty-gritty stuff people don’t want to acknowledge or...

dancingwithalsandlife.blogspot.com    “There is a sunrise and sunset each and every single day, and they're absolutely free. Don't miss so many of them.”   ~ JO WALTON    

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...

dancingwithalsandlife.blogspot.com  Before I start my blogging, it is important to me that my readers understand the origins of my blog title. When I was diagnosed with ALS, I just wanted to control everything that was happening to me. During an ALS clinic appointment, I received sound advice from Dr. Alair Altiero, PhD, LPC. She told me, “Stacy, ALS is not something you can control.  You need to learn how to dance with it.” Her advice has always stayed close to my heart because it is how we should be navigating through life with or without a terminal illness.  We have the tendency to want to control everything in our environment until one day, we realize we are not in control anymore. That is where faith and reality intersect. The other reason why this blog title fits so well for me is because my daughters and friends know that I enjoy dancing. I’m not good at it, but as long as I have some leg strength left, I will continue to move my body or feet to the sound of music....

dancingwithalsandlife.blogspot.com   “Being strong isn’t about muscle, it’s about facing challenges head on” ~ LOU GEHRIG     I was diagnosed with ALS “Lou Gehrig’s disease” four years ago on July 15, 2021 at the age of 48.  It took me two and half years to get the news of this devastating diagnosis.  This date has a lot of significance in our lives therefore, I thought it only made sense for me to publicly open my blog on this particular day!  I personally want to t hank you for joining me on my blogging journey! Blessings ✝️,  Stacy