In this episode of the Making Headway podcast, Eryn and Alison welcome Erin Kreszl and Jaime Meltzer from The Bee Foundation, an organization dedicated to brain aneurysm prevention. Jaime shares her personal story of losing her sister to a brain aneurysm and how it propelled her into advocacy and support for others affected by similar tragedies. The conversation explores the impact of brain aneurysms on families, the importance of community support, and the need for awareness and research in this often-overlooked area of health. The episode emphasizes the significance of support groups and the healing power of sharing experiences with others who understand the pain of loss.

Keywords

Bee Foundation, brain aneurysm, support groups, grief, awareness, community, prevention, research, personal stories, advocacy

Takeaways

· The Bee Foundation focuses on brain aneurysm prevention and awareness.

· Jamie Meltzer's advocacy began after losing her sister to a brain aneurysm.

· Support groups provide a vital outlet for those grieving a loss.

· There is a lack of awareness about brain aneurysms and their impact.

· Community support can help individuals cope with grief and loss.

· The Bee Foundation offers various support groups for different needs.

· Grief affects families in unique ways, and support is crucial.

· Raising awareness can help prevent future tragedies related to brain aneurysms.

· Personal stories can inspire others to get involved and support the cause.

· Finding a community can alleviate feelings of isolation during grief.

Sound Bites

"I want the why and I want to prevent it."

"It's the worst headache of your life."

"I never want to be part of that support group."

Chapters

00:00 Introduction to the Bee Foundation and Personal Stories

07:01 The Impact of Brain Aneurysms on Families

13:51 Support and Community through the Bee Foundation

21:00 Navigating Grief and Finding Hope

24:59 Conclusion and Call to Action

Reach out to

The Bee Foundation Support https://www.thebeefoundation.org/tbf-brain-aneurysm-support-hive/

The Bee Foundation on IG @thebeefoundation

Jaime Meltzer @2dogs1kids

Eryn on IG @eryn_makingheadwaypodcast

Alison on IG @alison_maknigheadwayodcast

MHP on IG @makingheadwaypodcast

Go to our website www.makingheadwaypodcast.com for full show notes and resources

Support us at

Patreon

Donate section on

Introduction

Brain injury is uncharted territory for many, you included! Finding reliable help that, well, actually helps ,is daunting if not impossible to find. Eric Kubeka has been there. In his desperation to heal after a TBI he found functional medicine providers that actually helped his brain fog, memory issues, mental health challenges, etc. Eric has turned what he learned into a coaching business to help others find their way out of the dark and into their new selves. Join us today to learn more!

Summary

Eric Kubeka, a brain coach and TBI survivor, shares his journey of recovery from a traumatic brain injury (TBI) and the strategies he used to improve his symptoms. He emphasizes the importance of addressing hormonal imbalances and working with a neuroendocrinologist to optimize hormone levels. Eric also discusses the role of natural supplementation, lifestyle changes, and exercise in his recovery. He highlights the need for personalized treatment plans and the challenges of navigating insurance coverage for specialized lab tests. Eric's story inspires hope and resilience in the face of brain injury. Eric Kubeka shares his journey of recovering from a traumatic brain injury and how he now helps others through his Brain Barbarians platform. He emphasizes the importance of adopting a warrior mindset and not succumbing to victimization. Eric offers personalized coaching to individuals, starting with a thorough understanding of their current situation and symptoms. He focuses on key areas such as sleep, stress levels, and relationships. Eric also discusses the significance of diet, exercise, and various therapies like hyperbaric oxygen therapy, red light therapy, and peptides. He encourages meditation and gratitude practices for overall well-being.

Keywords

brain injury, recovery, TBI, traumatic brain injury, brain coach, hormonal imbalances, neuroendocrinologist, natural supplementation, lifestyle changes, exercise, insurance coverage, lab tests, brain injury, recovery, mindset, coaching, sleep, stress, relationships, diet, exercise, therapies, hyperbaric oxygen therapy, red light therapy, peptides, meditation, gratitude

Takeaways

· Addressing hormonal imbalances can be crucial for recovery from brain injury

· Working with a neuroendocrinologist who specializes in brain injury can provide personalized treatment plans

· Natural supplementation, lifestyle changes, and exercise can help improve symptoms

· Navigating insurance coverage for specialized lab tests can be challenging

· Adopting a warrior mindset is crucial in overcoming the challenges of brain injury and not falling into a victimization mindset.

· Personalized coaching can help individuals navigate the recovery process and achieve better outcomes.

· Key areas to focus on include sleep, stress levels, and relationships, as they play a significant role in brain injury recovery.

· Diet and exercise are important factors in brain injury recovery, and a balanced approach is recommended.

· Therapies such as hyperbaric oxygen therapy, red light therapy, and peptides can be beneficial in accelerating brain injury recovery.

· Meditation and gratitude practices can help calm the nervous system and promote cellular repair in the brain and body.

Sound Bites

"I feel 99.5% better. I feel like I've figured it out."

"I'm four years out and I'm still struggling like a lot of us are."

"Anxiety, depression... it feels like

Intro

After brain injury, some of us are left with limbs and bodies that no longer function the way we are used to. Others have neurologic disorders that do something similar. One condition that does this is called dystonia. Dystonia is a movement disorder that causes muscles to spasm and contract resulting in abnormal postures, twisting, and repetitive movements. In this week’s episode, Margaux Galli, the leader of the NYC Dystonia Support Group provides education on dystonia sharing her lived experience with the condition. She offers resources for those suffering with the condition along with information on how to join the support group. Listen to learn more!

Summary

In this episode, Margaux Galli, a member of a dystonia advocacy group, shares her experience living with dystonia, a movement disorder. She discusses the symptoms and causes of dystonia, including involuntary movements, abnormal postures, and tremors. Margaux emphasizes the importance of finding a specialist who listens and understands the condition, as well as exploring different treatment options such as Botox injections and physical therapy. She also highlights the value of peer support and the role of peer-run organizations in providing patient-centered care. Margaux's advocacy work focuses on raising awareness and creating a community for individuals with dystonia. The conversation covers various topics related to dystonia, including the role of physiatrists in treatment, the experience of pain, the challenges of researching complementary therapies, the importance of self-advocacy and support networks, and the impact of dystonia on relationships and identity. The most common theme that arises is the feeling of isolation among individuals with dystonia. Margaux encourages people to join support groups and find healing communities where their voices can be heard.

Keywords

dystonia, movement disorder, involuntary movements, abnormal postures, tremors, specialist, treatment options, Botox injections, physical therapy, peer support, peer-run organizations, patient-centered care, advocacy, dystonia, physiatrists, treatment, pain, complementary therapies, self-advocacy, support networks, isolation

Takeaways

· Dystonia is a movement disorder characterized by involuntary movements, abnormal postures, and tremors.

· Finding a specialist who listens and understands the condition is crucial for effective treatment.

· Treatment options for dystonia include Botox injections and physical therapy.

· Peer support and peer-run organizations play a vital role in providing patient-centered care and creating a sense of community for individuals with dystonia. Physiatrists can help with joint issues and provide injections, but specialized neurospecialists may be needed for certain treatments.

· Dystonia can be a painful condition, and pain medication may not always be effective. Medications for mood can also help with involuntary movement.

· When researching complementary therapies, it's important to approach alternative treatments safely and consider the risk-benefit ratio.

· Self-advocacy and finding a supportive network are crucial for individuals with dystonia.

· Dystonia can lead to feelings of isolation, and joining support groups can provide a sense of community and understanding.

· It's important to communicate with healthcare providers and ask questions to ensure that your needs are being addressed.

· Managing dystonia often involves a combination of approaches,