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Share Your “Successful ALS Pivot” Stories
ALS brings many challenges to patients and their families. There is an overwhelming amount of information to process about ALS plus, having to deal with the emotional impact and worries. But we can still embrace change and still find purpose in our lives – – what I call pivoting.
It’s a lesson we can learn from the people, businesses, and organizations that have pivoted as a result of the challenges from this crazy 2020. Meetings are on Zoom, dine-in restaurants have expanded their take-out business and, ALS fundraisers are holding online events.
I had to pivot my life when diagnosed with ALS and adjust to a new reality of accomplishments. I wrote about how in my column, “Learning to Pivot When Living With ALS”
Has your ALS influenced you to find ways to pivot and keep moving forward in your life? Share your ALS pivot stories with us. Your stories and examples will help to inspire others.
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4 Replies
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I am grateful I was able to “pivot” my mindset post-ALS. Pre-ALS, my professional life was physically active and included giving speeches, leading yoga classes, and managing a hospital department of 20+ employees. Retiring, I thought I’d remain just as active. My only writing experience to this point had been for our brochures and flyers.
Post-ALS, I knew it was important to my mental health to find a new purpose for myself. That led to starting a blog about mental positivity for ALS (unheard of at the time!). Which led to an online book and being invited to write for ALS News Today. Along the way, I honed my knowledge of computers, building websites, and social media. Certainly not the retirement I had imagined but – – these new ventures give me reason to look forward to each day.
We pALS should keep our minds open to how we can continue to be engaged with the world around us. Our caregivers should support and provide encouragement as well. Being able to successfully pivot while living with ALS is vital to our mental health. I look forward to reading how other pALS have been (or are) able to make the “pivot.” 🙂
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Being given a diagnosis was pivotal for me. I know in the back of my mind it may not stay the diagnosis of PLS but I have to handle what I have in front of me. So I take each piece and acknowledge it. If it’s not a good leg day or hand day or speaking day I make it a point to not have to walk a lot or I make sure I don’t have steak for dinner. I spend time texting rather than talking. Choices. We have choices. I make choices which will make each day pleasant and purposeful. I have two teenagers watching me go through this and I cannot be broken and beat by this every time they look at mom. We joke about my absurd slowness and my awkward laugh. We spend time hugging and talking. I have to live each day present. Physically and mentally. I cry and my kids have witnessed it and dried my tears but I make sure it’s not what they see most. My quality of life is the single most important thing and I will not waste it. Wondering and worrying without a diagnosis absolutely consumed me. That went on for far too long. I cannot let this diagnosis own me. Something clicked the day I left my dr with a diagnosis and my mind cleared and my mood brightened. I was done being and I’ve made it my mission to stay that way for my family.
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Inspiring words Kelly 🙂 Thank you for sharing that with us.
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Kelly, that is great!! I think your experience being consumed by your diagnoses initially was understandable. Being able to reframe your ideas and focus on your quality of life shows your strength and love for your family. Please keep us posted on how you are doing. Thank you for sharing!
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