Amanda Stevens: Wife, Mom, Caregiver & Founder of AxeALS

When I was initially diagnosed with ALS, I was given the typical prognosis of 2-5 years to live. That was 20 years ago.  Today, alongside my two sons, Paul and Christian, we reflect on this journey, answer listener questions, and explore the lessons learned along the way.  I answer your questions about life with ALS, my thoughts on the future and advice to others finding themselves in the face of adversity.  Then, I find out what questions my sons have for me after 20 years with ALS.  Although their questions were tough to answer, I think it was good for all of us to discuss.  I’m incredibly grateful for these bonus years since only 5% of ALS patients live longer than 20 years.  Join us for an intimate and candid conversation as we commemorate this significant milestone and look towards the future with hope & gratitude.  Help celebrate with me by sharing this episode with a friend and leaving a review wherever you listen.  Thank you for your incredible support.  Hugs, Lorri

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode I chat with Juliet Taylor & Tim Abeska who each lost spouse to ALS. They met in a virtual support group for widow & widowers.   Realizing they lived in the same area and had common interests, they met for coffee and their relationship grew from there.  Today they encourage each other to love & honor their late spouse, enjoy life and be active ALS advocates to help end ALS.   Here, Juliet & Tim share about their late spouses, Jeff Sarnacki & Mary Ann Abeska.  We talk about how they are supporting each other’s grief journey and what advice they have for others who are experiencing loss.  It's incredible that both Juliet & Tim have jumped back in to the ALS community as key advocates.  Together, they are the co-chairs of the I AM ALS Community Outreach Team, which helps bring others into our fight for a cure.  Juliet writes a beautiful column for ALS News Today. Listen in to this hopeful chat and share with a friend.  Thanks for listening.  Hugs, Lorri 

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here you’ll meet Tony and Karen Vick.  Tony, a brave U.S. Veteran, has been living with ALS for the past 6 years.  Karen, his dedicated wife, serves as his full-time caregiver, showcasing the strength of their bond.  Despite facing the challenges of ALS, Tony and Karen lead a fulfilling life and share their journey on Karen's Instagram account, https://www.instagram.com/thekaregiver/.  After realizing how many young caregivers are out there, they decided to share more on the day-to-day realities, triumphs, and tribulations of living with ALS.  They hope to help other caregivers and individuals grappling with illnesses like ALS.  Tune in to discover how they extend their reach and provide support through their engaging weekly LIVE sessions on Instagram @thekaregiver, where they update their journey, answer questions, and offer encouragement.  Both Tony & Karen are returning guests on this podcast.  We get an update on how Tony is doing and his thoughts on his positive perspective.  Tony also shares advice for other veterans living with ALS.  Listen in as I delve into the inspiring story of Tony and Karen Vick, demonstrating that even in the face of adversity, love, resilience, and community can thrive.  Thank you for listening in and sharing with a friend.  Hugs, Lorri

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode, I talk about having gratitude even during hard times.  I recorded this on Thanksgiving Day.  Thanksgiving encourages us to pause and express gratitude for the positive aspects of our lives.  For me, It always fosters a sense of gratitude, reflection, and appreciation for the blessings and relationships in my life.  This morning I woke up being extra grateful for all I have, for the relationships that I am a part of and for the extra time that I have been given.  Here, I hope to encourage you to seek out GRATITUDE every single day.  I also pass along some things to consider being grateful for even when life gets tough. I share some ways to stir up gratitude as well.  At the end of this episode, I talk about Giving Tuesday and how it provides a unique opportunity to express gratitude through acts of kindness and generosity.  I am incredibly grateful for each of you.  Thank you for being here and letting me share my thoughts with you.  Hugs, Lorri

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I chat with Amanda Stevens, wife & caregiver to Eric Stevens – former NFL player & L.A. Firefighter, both introduced to us on The Ellen DeGeneres Show in 2019.   Amanda and Eric were married only one month when Eric was diagnosed with ALS at a young 29 years old.  We fell in love with this young couple as they appeared on the Ellen show three times and even were on to announce that they were expecting a baby.  In the past 4 years since receiving Eric's ALS diagnosis, Amanda has dedicated her life to caring for her husband and their daughter.   Amanda and Eric have also been inspired to help others through their non profit called AxeALS Foundation.  Their mission is to raise awareness and funding for ALS treatments and clinical trials; to help ALS patients and their families live as full and normal lives as possible and to support ALS research. In this episode, Amanda shares her journey, motivation and updates on Eric and life with ALS.   Tune in for this sweet encouragement in the face of huge adversity.  Thank you for listening and sharing this episode with a friend.  Hugs, Lorri
AxeALS: https://axeals.org/

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode I talk to Lance Alexander, a teen Hollywood actor from my hometown in Ohio.  You might know Lance from his role as Elvis, a recurring role on the award-winning Netflix show “Family Reunion.”   Like many, during the Pandemic of 2020, he was isolated and fighting depression and decided to fight back.  Lance had a public struggle of being overweight and bullied most of his childhood.  I love that he is inspired to share his journey.  Here Lance shares his motivation for creating his book and campaign, “From Junk to Hunk.”   Lance shares how the key to eliminating “junk” is acknowledging that transformations can require both mental and physical adjustments and applies to all areas of life, not just your size.  He shared that on this journey, he learned that mental transformations might be even more difficult than physical transformations.  Lance also witnessed that permanent change requires mental resilience and self-belief.  Especially for being just 18 years young, I am loving Lance's self awareness and heart to share his experience with others.  Listen in and meet my new friend, Lance.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here my husband Paul & I talk to long-time radio personality Jim Scott from Cincinnati.  He has been heard all over the country during his 55+ years on the air, mostly on 700 WLW Radio.  He simply is one of the most giving & positive people I know.  Although most of his life has been spent using his voice in his radio career, he is now battling a disease that is affecting his voice and more.  Jim was diagnosed with ALS, in 2022.  Even while living with a fatal disease with no cure, Jim continues to try to “spark joy” with those that need it most.  We chat about his extraordinary radio career, community and love.  Jim is known as “Good Old Jim Scott” since he has given so much back to others.  Listen in & hear what this incredible 80 year old is “Dying To Tell You.”  Thanks for listening and sharing with a friend.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I chat with military veteran of both the U.S. Marine Corps and the U.S. Navy, Kate Peters.  She served in the USMC 2007-2015, USN 2015-2020 and served in Operation Iraqi Freedom.   Kate is a mother of two boys, three and five and was medically retired from the military after being diagnosed with ALS, a fatal disease that has no cure.    She was diagnosed with ALS in 2020 a few weeks after her second son was born, after about 2 and 1/2 years of symptoms and a misdiagnosis.   I talk to Kate about her military experience, the connection between ALS & the military and her upcoming BIG adventure of traveling the world for a year with her young family.  Kate is considered a slow progresser with ALS, having symptoms for almost 6 years and still being fully independent and able to take care of her children.   She's been able to witness some blessings after being given a terminal diagnosis and shares some beautiful life advice that will encourage us all.   Thank you for listening in and sharing with a friend.  Hugs, Lorri
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I chat with a young woman living with ALS, who defies all odds by finishing fifty marathons and, in turn, inspires people to “go on, be brave.” I'm absolutely thrilled to catch up with Andrea Lytle Peet again and meet Meredith Atwood in this chat.  Andrea and Meredith coauthor Andrea's new memoir titled, "Hope Fights Back."  Andrea was thirty-three years old—newly married and a triathlete—when she received the death sentence of an ALS diagnosis (also known as Lou Gehrig's disease). After grappling with the fact that she will likely become paralyzed and die within two to five years, Andrea experienced an unexpected spark that changes her outlook in the most magnificent way.  She set a goal to  become the first person with ALS to complete 50 marathons in 50 states.  In May 2022, she accomplished this goal with the 50th race in Prince of Wales Island, Alaska.  Andrea shares her journey in a recently released documentary,  "Go On Be Brave: The Drea Story."  Now, she's publishing a book on 9/5/23 "Hope Fights Back."  In this episode we catch up on it all, especially her inspiring memoir.  Hope Fights Back chronicles what happens when we choose to live instead of waiting to die. It is a "love letter to life" and a beautiful love story between Andrea and her husband, Dave.  Andrea’s message is awe-inspiring for everyone.  Listen in and share this incredible story with a friend.  Hugs, Lorri
Follow:  https://bit.ly/ImDyingToTellYouInstagram  Visit: http://goonbebravefilm.com/  

I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

This episode is just me answering YOUR questions.  I had a lot of requests for this format again, so I asked listeners to send in questions about anything and I answered them here.  I'm so grateful for all the questions that came in, about life, perspective, my ALS longevity, family and advice.  I love that my listeners feel comfortable asking me anything.  This was a super special experience.  I hope you enjoy and share with a friend.
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I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.