Episode 77: Finding Calm Waters, Chris's Experience as a Glioblastoma Caregiver

Chris Schuler opens up about his experience as a caregiver, navigating the challenges of neurodegeneration, particularly his father’s glioblastoma diagnosis. He shares the emotional turmoil, confusion, along with the overwhelming process of navigating the healthcare system. The conversation underscores the importance of raising awareness and understanding of neurodegenerative diseases and their impact on families. We also delve into the problematic nature of the 'standard of care' in oncology, highlighting the critical need to advocate for yourself.

Check out the article Samira referenced towards the end of this episode here.

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Key Highlights:

1. Self-advocacy is critical in getting the care that’s best for you, so ask questions, and get involved. Your healthcare team cares for you and wants to see you back on your feet, but no one can care more than you do.

2. Caregivers need to look after themselves, too. It can feel like there’s no room for yourself, but you must find joy. Find joy so that you can cherish whoever is under your care.

3. The role of a caregiver is both rewarding and demanding. Being an advocate for a loved one is a necessary responsibility because the standard is not always the best care you can receive for your individual case.

About our guest:

Chris Schuler is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He recently finished a year-long consultancy with Cure Brain Cancer Foundation, an Australian non-profit dedicated to improving outcomes in brain cancer. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. He also works closely with SageMedic, a precision oncology start-up supporting patients looking for the most effective treatment for cancer. Chris continues on as his Dad's caregiver — caregiver to his life, legacy and memory.    

At 33 minutes and 18 seconds: “From that very moment, I went from being a lot of things in my life, being a son, a nephew, a grandson, a friend, eventually an uncle, a husband, a father. Now I am a caregiver. I want to say nothing prepared me for that. Everything prepared me for that. The way I was raised, everything I experienced in my life, every up, every down, every victory, every rejection, everything led to this moment where I am now my dad's caregiver with my mom. I call myself the primary caregiver because there was something she couldn't do for him, and how do you become an advocate? How do you take on what seems insurmountable? And I say to any listeners, you can do it. You have what's in you to do it, to be the very best caregiver, because all you need is one prerequisite to be a caregiver. You need to be able to love. If you can love, you are a caregiver.”

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