I'm Dying to Tell You

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.

Here I continue my talk with Amy, Jim and Matt who are living with ALS about having the toughest conversations of their lives.  When you’re living with a terminal illness that doesn’t have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick.  In this Part 2 episode, I continue chatting with  Amy Stiens, Jim Plews-Ogan and Matt Klingenberg.  I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told their children and friends and even the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks 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.

When you’re living with a terminal illness that doesn’t have a cure and typically gives you just a few years to live, like ALS, the most difficult conversations come up quick. In this episode, I bring together 3 others who are living with ALS to talk about their experiences with these tough conversations.  Here, I’m talking to Amy Stiens, Jim Plews-Ogan and Matt Klingenberg.  I am grateful for their willingness to chat about how they were told they had a terminal illness with no cure, how they told their children and friends and even the toughest conversations yet.  Amy, Jim & Matt share their advice on how to go about having "tough talks" like these as well.  Thanks 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.

In this episode you'll hear my chat with Courtney Cirabisi, a 30 year old who lives in Bakersfield, California.  She became reliant on a wheelchair for everyday mobility after she was child abused by her dad when she was 9 months old, resulting with a spinal cord injury.  I've been following her journey as she shows us that life doesn’t stop after you have been abused and have lost the ability to walk. Courtney shares how she believes the mind is the most important thing a person can have.  With that knowledge she is able to live a positive life after all she's been through.  She explains how she feels that she is meant to be where she is today.  I love her outlook and her strength and how she lives a full, rich life.  She has such a beautiful awareness and is using it to inspire others.  Courtney is on a mission to show others how strong your mind is when facing adversity.  She is an author at Push Living (PUSHLIVING.COM) an organization highlighting wheelchair lifestyle.  Thanks for listening in to our chat.  Stay connected on Instagram: https://www.instagram.com/imdyingtotellyoupodcast/?hl=en  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.

May is ALS Awareness month.  So in the spirit of increasing awareness of ALS, a terminal illness with no cure, I continue my chat with 3 others living with ALS.  We answer the questions sent in by listeners of this podcast about what it's like being a young adult and living with a terminal illness.  My guests, Ashley Rivera and Mira Hudson were diagnosed at 24 and James Smith was diagnosed at 36.  They dig deep and open their hearts to answer your questions like, "Can you share about the moment you were diagnosed with ALS?"  "How do you find the strength day in and out to persevere and overcome fears, pain, negative emotions, etc.? "  "What's important now that wasn't before your diagnosis?"  "What makes you feel inspired or like your best self now?"  and "How are you dealing with the mental side of living with ALS."  Those are a few examples of questions they answer and generate a full conversation around.  Please consider sharing this episode to share their courageous spirits and to tell others about ALS.  Thank 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.

In this special Q&A episode, 3 young adults answer questions you sent in about ALS and living with a terminal illness.  May is ALS Awareness month.  So in the spirit of increasing awareness of ALS, a terminal illness with no cure, I chatted with 3 others living with ALS.  We answer the questions sent in by listeners of this podcast about what it's like being a young adult and living with a terminal illness.  My guests, Ashley Rivera and Mira Hudson were diagnosed at 24 and James Smith was diagnosed at 36.  They dig deep and open their hearts to answer your questions like, "Can you share about the moment you were diagnosed with ALS?"  "How do you find the strength day in and out to persevere and overcome fears, pain, negative emotions, etc.? "  "What's important now that wasn't before your diagnosis?"  "What makes you feel inspired or like your best self now?"  and "How are you dealing with the mental side of living with ALS."  Those are a few examples of questions they answer and generate a full conversation around.  Please consider sharing this episode to share their courageous spirits and to tell others about ALS.  Thank 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.

On this episode of  I'm Dying To Tell You Podcast, I talk to Rob Schwartz son of Morrie Schwartz from the classic book Tuesdays with Morrie.  We chat about the newly released book, “The Wisdom of Morrie.”   The book was written by Morrie Schwartz, recently edited and released by Rob.  The number one bestseller Tuesdays with Morrie was written from conversations with author Mitch Albom after Morrie was sick and knew he was in the process of dying from ALS.   However, this newly released book, The Wisdom of Morrie was written by Morrie before he was diagnosed ALS.   Rob rediscovered this manuscript that Morrie wrote about staying vibrant and connected for life.  Morrie explores living and aging joyfully and creatively.  Later life can be filled with many challenges, but it can also be one of the most beautiful and rewarding passages in anyone's lifetime.  Morrie draws on his experiences as a social psychologist, teacher, father, friend, and sage to offer us a road map to navigate our futures.  I hope you'll listen in and hear more from Morrie all these years later.  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 sit down with Zac Brown Band founding member, John Driskell Hopkins who is using his stage to help bring awareness to ALS, also known as Lou Gehrig’s Disease.  John was diagnosed with ALS, a terminal illness with no cure in 2021.  John, also known as Hop, decided to go public with his ALS hoping his reach could result in awareness, action and ultimately support for an ALS cure.  He and his wife, Jennifer formed the Hop On A Cure organization which supports promising ALS research.  In this episode, I chat with John about, his start in music, how he became a part of the award winning Zac Brown Band and how he noticed something wasn’t right with his health on tour.  He shares intimate details about his thoughts right after diagnosis, telling his family, his daughters and more.  I chat with Jennifer about their foundation, Hop on a Cure.  John continues to perform and record with the Zac Brown Band as they are currently on tour. Thank you for listening 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.

Here I talk to 34 year old TikToker, Brooke Eby who is using humor and social media to navigate life after being diagnosed with a fatal disease.  Brooke was diagnosed with the terminal illness, ALS, at a young 33.   With the support of her family, friends, and co-workers, Brooke's been able to laugh in the face of ALS by using humor on social media..  Brooke created a TikTok account @LimpBroozkit to help explain what she  was going through without making it a heavy conversation.  Not only is creating TikTok videos about ALS a case of "laughter is the best medicine" right now, but Brooke is also educating others and creating new ALS awareness.   With millions of views, Brooke's ultimate goal is that her humor continues to boost others through any hard times.  Brooke said that after getting a terminal diagnosis, she felt a mix of shock and sadness and was depressed during the first couple of months.   Right now, Brooke's TikTok videos are helping her cope.   She hopes her videos can help start conversations to drive awareness, support and ultimately cures for ALS.  Check out Brooke's TikTok channel @LimpBroozkit .  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 talk to someone who has  ALS for over 25 years.  I reconnect with a former colleague from Kraft Nabisco, John Carthum.  It was a few decades ago when I heard John left the company for medical reasons.  I never knew what hand he was dealt that made him have to leave his career at such a young age until I was diagnosed with ALS in 2004.  That’s when I learned that it was also ALS that John was diagnosed with in 1995. 
Now he is outliving the typical 2 to 5 year death sentence that comes with ALS, also known as Lou Gehrig's Disease.  It's incredible that John has been living with ALS for 27 years now. I am so grateful that John decided to take me up on my invitation to chat for this episode.  I knew his precious insights would be a blessing to many.  Listen in and hear John share what it has been like living with a terminal illness with no cure for such a long time, how he and his wife decided to have children after his diagnosis and what keeps him living life to the fullest while struggling every single day.  Thanks 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 award-winning director/producer, Jared Callahan.  He shares the inspiration behind the film, SOMETIMES I SHAKE.  The documentary film follows PLNU music professor and jazz conductor Dan Nelson as he navigates his life and profession around an ever-increasing shake caused by his Parkinson's disease.  Then suddenly, Dan is devastated by the additional, and terminal, diagnosis of ALS. The film is an inspirational tale full of vigor, humor, and raw honesty, that follows Dan’s wild pilgrimage toward death, and along the way, discovering how to fully live. The film takes us through Dan's final days as he decides if he will marry the woman he loves, when to end his career in music, and how to invest the remaining months of his life.  Dan has since passed away, but hopefully you will listen in and be moved to experience his spirit by viewing the film, SOMETIMES I SHAKE.  Jared Callahan also founded and runs People People Media, an Emmy-nominated production company and has had projects premiere at the best film festivals in the world.  Thanks for listening and sharing with a friend.

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.