ALS Caregivers and Beyond | Podcast on RSS.com

ALS Caregivers and Beyond

ALS Caregivers and Beyond

by Mary Hahn Ward & Lara Garey

E16: Intentional Living

In this unforgettable episode, we broke new ground by podcasting face-to-face—no Zoom required. Lara and her special friend, Grant Trevarthen, visited Tom and me for a few days, and we had the privilege of having Grant as our very first guest. Lara and Grant, both living in the ALS Beyond, shared their experiences and insights with deep sincerity. Being in their presence was truly an honor. I've recorded many episodes across this podcast and "This Caregiver Life," but I have to say, this one touched my heart the most. It stands out as my absolute favorite. Much love, Lara & Mar P.S. We’d love to hear from you! Drop us a note and let us know how you’re doing. maryhahnward@gmail.com laragarey@yahoo.com Check out Lara's blog: Tom's Troops Check out Mar's Etsy shop: Cottage at Marehaven #ALScaregivers #ALS #ALSwidows #ALSwidowers #ALSsurvivors #Caregivers #Terminaldisease

E15: Stretching Our Wings

In this episode, we’re embracing new horizons. One of us has been on exciting adventures, exploring both nationally and globally, while the other has been discovering the beauty and challenges of staying local. Join us as we share the lessons we’ve learned and reflect on how our lives are evolving. To our beloved ALS Caregiver & Beyond community, thank you for being with us on this journey. Your experiences and stories inspire us every day. Much love, Lara & Mar P.S. We’d love to hear from you! Drop us a note and let us know how you’re doing. maryhahnward@gmail.com laragarey@yahoo.com Check out Lara's blog: Tom's Troops Check out Mar's Etsy shop: Cottage at Marehaven #ALScaregivers #ALS #ALSwidows #ALSwidowers #ALSsurvivors #Caregivers #Terminaldisease

E14: Catching Up with Lara & Mar

The first quarter of the year is wrapping up and it's been a whirlwind for both of us. We share where we are in this caregiver life (Mar) and where we are in the Beyond (Lara). There has been lots of growth for both of us. As always there isn't a minute of our conversations that we do not enjoy thoroughly. No one sees us more clearly than those who know ALS. We talked about Mel Robbin's podcast episode: The #1 Menopause Doctor: How to Lose Belly Fat, Sleep Better, & Stop Suffering Now with Mary Clare Haver, MD Have thoughts you'd like to share? Drop us a note: maryhahnward@gmail.com laragarey@yahoo.com Check out Lara's blog: Tom's Troops Check out Mar's Etsy shop: Cottage at Marehaven

E13: Meditation Mindfulness

In this episode, Mary and Lara discuss the strategies they have learned and continue to practice to help ease the ALS caregiver and survivor journey. Both Mary and Lara discuss how they came to these practices at a time that was right for them. They both still struggle with their journey, but having something to lean into when the journey becomes too hard has been the key to finding their paths forward. We hope that by seeing how differently we both came to mindfulness and meditation it is never too late or too early to find peace in the chaos of this ALS life. Check out Lara’s latest blogs, Ending 2023 with gratitude and Finding peace just outside my door regarding how she feels she is transitioning from deep grief to healing: https://tomstroops.com/2023/12/31/ending-2023-with-gratitude/ Check out Mary’s Cottage at Marhaven Etsy shop. This Caregiver Life podcast episode: Give Your Mind a Rest Guided Meditation by Tara Brach

E12: 'tis the season strategies

This time of year, the holidays, can be a challenge for us in the ALS community, now and in the afterlife. We do our best to figure out ways to make it palatable. Sometimes we succeed. Sometimes we don't. It's very individual to know what will work for you. Lara and I agree that staying away from Social Media for a few days before, during, and after a holiday can be helpful. Several years ago, when I was fully engaged in co-hosting the podcast "This Caregiver Life" I interviewed Lara. Lara shared her strategy for getting through: https://podcasters.spotify.com/pod/show/thiscaregiverlife/episodes/E18-Upside-Down-Holidays-e8j029/a-aqktp0 Check out Lara's latest blog post: https://tomstroops.com/ Check out Mary's Cottage at Marehaven Etsy shop. Have some thoughts you'd like to share: Mary's email: maryhahnward@gmail.com Lara's email: laragarey@yahoo.com Facebook page: https://www.facebook.com/ALSCaregiversandBeyond #ALScaregivers #Caregivers #Survivors #Sympathy #Podcasts #ALS

E11: When Sympathy Goes Sideways

Lara and Mary dig into their experiences when sympathy from others produces big feelings that are not always positive. Lara says "It's the look" and it is, isn't it? They also share some big laughs when Mary shares the crazy things Tom says! With each podcast, it is easy to see how this concept can be applied to them: To be listened to is healing. (The Covenant of Water, Abraham Verghese). If you are struggling, please find someone who will listen you without judgment. Check out Lara's latest blog post: https://tomstroops.com/ Check out Mary's Cottage at Marehaven Etsy shop. Have some thoughts you'd like to share: Mary's email: maryhahnward@gmail.com Lara's email: laragarey@yahoo.com Facebook page: https://www.facebook.com/ALSCaregiversandBeyond #ALScaregivers #Caregivers #Survivors #Sympathy #Podcasts #ALS

E10: Finding Grace

Mary & Lara chat about finding grace and its value to their life. They have each discovered in their own way that grace frees them from the constraints of feeling guilty, encourages them to be kind to themselves, and gives their hearts relief. Have you found the gift of grace? Please let us know and we will share it on the podcast. We enjoyed another Pema quote this episode: From the very beginning to the very end, pointing to our own hearts to discover what is true isn't just a matter of honesty but also of compassion and respect for what we see. Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times Check out Lara's latest blog post: https://tomstroops.com/ Check out Mary's Cottage at Marehaven Etsy shop. Have some thoughts you'd like to share: Mary's email: maryhahnward@gmail.com Lara's email: laragarey@yahoo.com Facebook page: https://www.facebook.com/ALSCaregiversandBeyond #grace #ALS #endALS #ALSsurvivors #ALScaregivers

E9: The Need to Belong

Lara and Mary explore the need to belong, the loss of belonging, and the uncertainties of future belongingness and how they feel about it. This may resonate with ALS caregivers and those living the beyond life. Their belongingness tends to be in lanes they didn't seek out or expect. The Science Behind Our Need to Belong - Insights into the history, present, and future of belonging research Brene Brown's book Atlas of the Heart Mary's new craft shop can be found: cottageatmarehaven.etsy.com Lara's blog: https://tomstroops.com/ Lara's email: laragarey@yahoo.com Mary's email: maryhahnward@gmail.com Their Facebook page: https://www.facebook.com/ALSCaregiversandBeyond/

E8: A Fix-it?

Yes, that is exactly what Lara and Mary are becoming...fix-its. They are learning to fix the practical and seemingly improbable, such as a water irrigation system! The more they learn to fix, the more confident they become in their abilities. Mary shares a quote that finds solace in over and over again: “Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” ― Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times Check out Lara's latest blog post: https://tomstroops.com/ Check out Mary's Cottage at Marehaven Etsy shop. Have some thoughts you'd like to share: Mary's email: maryhahnward@gmail.com Lara's email: laragarey@yahoo.com Facebook page: https://www.facebook.com/ALSCaregiversandBeyond

E7: Advocacy in Action Part 2 - Legislation

Hello! Welcome to episode 7. Lara and Mary wrap up their conversation regarding the Elizabeth Dole Act. Check out their conversation regarding the pieces of it that are most relevant to our veterans with ALS and their caregivers. As is their way, Lara and Mary start off the podcast discussing their current events, as well as, emotional temperature! As they close out the podcast they leave us with their evolving conversation around gratitude. Mare reads a poem by John O'Donohue: May all that is unforgiven in you, Be released. May your fears yield Their deepest tranquilities. May all that is unlived in you, Blossom into a future, Graced with love. This is a link to the House of Representative's text of the bill H.R.542 - Elizabeth Dole Home Care Act of 2023 This is a link to the Senate's text of the bill S.141 - Elizabeth Dole Home Care Act I AM ALS organization has a summary of the bill that can be found here: https://iamals.org/wp-content/uploads/2023/03/Elizabeth-Dole-Act-One-Pager.pdf Next week, we will focus on the other three parts of the legislation. You can find us on our Facebook page: ALS Caregivers & Beyond Lara Garey's email: laragarey@yahoo.com Mary Hahn Ward's email: maryhahnward@gmail.com #alscaregivers #als #advocacy #elizabethdolehomecareact

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