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E48: The Speed of the Sound of Caregiving
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When Mandi Bailey's stepdad, Fred Drinkwater, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2017 it was a fast and furious two years. Every day Fred experienced a decline. Mandi's mom, Susan Drinkwater, struggled to keep up with the demands of the disease. One day they were planning for their golden years and the next day they were planning for how to get through the minutes and hours of each day to keep up with the demands of ALS. Mandi was a secondary caregiver for Fred and emotional support for her mom. She remains strong support for her mom.
Fred was a Vietnam Veteran. He was service-connected for ALS. For reasons unknown, veterans are more than twice as likely to get ALS than non-veterans. If you are a veteran with service-connected ALS and need some guidance on VA resources and Care this is a useful tool: Thinking Through VA Benefits and VA Care: A Resource for Veterans with ALS & Their Caregivers
After Fred's death, Mandi committed to putting her efforts into ALS advocacy for viable treatments and a cure. She has a Call to Action. She asks listeners to help by contacting your senator and representative in Washington, D.C. to support this legislation:
H.R.7071: Accelerating Access to Critical Therapies for ALS Act
Mandi advocates with the following organizations and invites others to join her:
ALS Therapy Development Institute
I Am ALS
--- Send in a voice message: https://podcasters.spotify.com/pod/show/thiscaregiverlife/message
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