ALS Caregivers and Beyond

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: [email protected]

Lara's email: [email protected]

Facebook page: https://www.facebook.com/ALSCaregiversandBeyond

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: [email protected]

Mary Hahn Ward's email: [email protected]

#alscaregivers #als #advocacy #elizabethdolehomecareact

Gratitude can be a challenge to find some days. In this ALS Caregiver & Beyond life, Lara and Mary embrace a practice of mindfulness and gratitude. For the days they fail to find something to be grateful for they have their fallbacks, such as being thankful for a sunny day, good weather, or a cup of coffee in the morning. Why bother if you have to scratch for some gratitude? Because it forces at least one positive thought into their day and that alone can shift a down day into a better one.

Here are a list of wonderful podcasts with a focus on ALS:

I Lost My PersonBeyond MNDThe Couple Shift

I Am Dying To Tell YouI

If there is a topic you would like us to cover or would like to be a guest please email us at:

[email protected]

[email protected]

In episode four we talked about advocacy and our efforts over the years. Today, we dig deeper into a piece of legislation, the Elizabeth Dole Home Care Act 2023. The components of the legislation we focused on in this podcast are the following:

1. Create a centralized website to share information and resources related to home and community-based programs and help veterans and caregivers determine their eligibility
2. Expand access to home and community-based alternative care programs to veterans at all VA medical facilities, including veterans living in U.S. territories and Native veterans enrolled in Indian Health Service (IHS) or tribal health programs
3. Increasing the amount the VA will pay for health care from 65 percent to 100 percent for alternatives to nursing home care, such as home health care, adult day care, and assisted living

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: [email protected]

Mary Hahn Ward email: [email protected]

#alscaregivers #als #advocacy #elizabethdolehomecareact

Lara and Mary talk advocacy in this episode. First, they check in with one another and discover that they each had an unexpected recent experience. They talk a bit about how these experiences indicate personal growth. Then they dig into advocacy, their why, and how. They have spent so much time using their voices in small and big ways for the ALS community, in particular, the veterans with ALS lane.

Mary's testimony at a Senate subcommittee on Aging regarding Military Caregivers: https://www.c-span.org/person/?108683/MaryHahnWard

Mary and Lara's book: Thinking Through VA Benefits and VA Care: A Resource for Veterans with ALS and Their Caregivers

Lara's Blog: Tom's Troops

Lara's email: [email protected]

Mary's email: [email protected]

We would love to hear from you! Send us an email if you have a particular topic you'd like us to discuss or if you'd like to be a guest.

--- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

Lara and Mary share how the ins and outs of navigating their emotions are tricky sometimes. They can lose sight of life outside of ALS and the places it takes their feelings. They have learned how to meet their own selves in the place they are in with self-kindness. Take a listen. Send them a message if you'd like to share with them or perhaps be a guest on the podcast. They'd love to hear from you!

Lara: [email protected]

Mary: [email protected]

--- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

Some days are like quicksand. We can't move, forward or backward. Moving backward could be an option if it meant it helped us move. We'd much rather move forward. We get stuck. Join us as we talk about where we are right now in our heads and hearts.

To reach out to us send an email to either Lara Garey: [email protected]

or Mary Ward: [email protected]

#ALS #ALScaregivers #ALSsurvivors

--- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

In this first episode, Lara and Mary share big feelings about how the disease impacts them and the role of advocacy in their lives. Storytelling is something they have in common. It helps them cope with life. They are hopeful that through their stories and conversation on the podcast, others will find comfort and perhaps see themselves. They love humor and use it often to lighten their load.

We'd love to hear from you. Questions? Comments? Message us at [email protected] and/or [email protected]

Thank you for listening!

--- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message