Intro

Have you ever thought about how the doctors know what treatments to use to diagnose and treat your brain aneurysm? Research obviously creates this but where does the money come from? A major source of funding comes through public policy and the federal government. The Bee Foundation has a strong presence on Capitol Hill through their work with Arnold and Porter. They are currently working on getting Ellie’s Law passed which would be a bipartisan effort earmarking $50 million dollars to go towards research. This funding could prevent others from having a rupture and lead to new treatments and rehab options. Learn how to support passage of this bill here.

Summary

In this episode of the Making Headway podcast, Alison speaks with Christine Kondra, Taylor Cazeault, and Michaela Stogsdill from the Bee Foundation about the critical issues surrounding brain aneurysms. They discuss the foundation's mission, the importance of advocacy and research funding, particularly through Ellie's Law, and the economic implications of brain aneurysms. Personal stories highlight the devastating impact of these conditions, while the conversation emphasizes the need for increased awareness, education, and community engagement to prevent future tragedies. The episode concludes with information on how listeners can get involved through political advocacy and upcoming events for Brain Aneurysm Awareness Month.

Keywords

The Bee Foundation, brain aneurysms, advocacy, Ellie's Law, research funding, awareness, healthcare, economic impact, personal stories, community engagement

Takeaways

· The Bee Foundation was started to honor those lost to brain aneurysms.

· Ellie's Law aims to increase federal research funding for brain aneurysms.

· Brain aneurysms affect 1 in 50 people, with a high fatality rate.

· Advocacy is crucial for raising awareness and funding for research.

· Personal stories of survivors highlight the urgent need for change.

· Economic costs of brain aneurysms are significant and preventable.

· Education for first responders is essential to improve outcomes.

· Bipartisan support is growing for brain health initiatives.

· Community engagement is vital for advocacy efforts.

· Upcoming events provide opportunities for public involvement.

Sound Bites

"This is going to be the last."

"We really wanted to focus on hope, prevention."

"Brain aneurysms are really prevalent."

Chapters

00:00 Introduction to the Bee Foundation

02:59 The Impact of Brain Aneurysms

06:11 Advocacy and Legislative Efforts

09:01 Ellie's Law and Research Funding

11:49 Economic Implications of Brain Aneurysms

15:00 Personal Stories and Experiences

18:00 The Importance of Awareness and Education

21:01 Bipartisan Support for Brain Health

24:09 Engaging the Community

26:54 Best Practices for Emergency Response

29:46 How to Get Involved

33:03 Upcoming Events and Initiatives

Reach out to

The Bee Foundation Website

Send a letter to your representatives seeking support or giving thanks using

Intro

So you had the big bad thing happen... and now you have a brain injury. You’re in every form of rehab doing the work to build yourself. An often overlooked part of brain injury recovery is finding others who have been there. Connecting with those who have lived experience helps lessen the feelings of isolation that come when your brain is no longer your buddy. In this episode Maddi Niebanck and Tawnie Romero-Golic discuss the power connection has had in their recoveries. We all challenge you to reach out and find a brain injury buddy(ies). It could be the thing that makes the most difference in your mental health post injury!

Summary

Maddi and Tawny share their experiences as stroke survivors and advocates in the brain injury community. Maddi discusses her journey with an arteriovenous malformation (AVM) and the decision to undergo brain surgery. She shares the challenges she faced during her recovery, including paralysis and the need for extensive rehabilitation. Tawny emphasizes the importance of putting in the work and the power of community in the healing process. Both Maddi and Tawnie highlight the role of their Instagram Live show in connecting with other survivors and offering support and hope. Tawnie and Maddi discuss their motivations for advocacy and raising awareness about brain injuries. They emphasize the importance of connecting with others who have had similar experiences and the power of sharing stories. They also highlight the role of organizations like TAAF in providing resources and support. The conversation explores the transformative nature of advocacy and the need for community in the recovery process. Tawnie and Maddi provide their contact information for those seeking support and connection.

Keywords

stroke, brain injury, arteriovenous malformation, brain surgery, rehabilitation, paralysis, community, support, hope, advocacy, awareness, brain injury, community, support, resources

Takeaways

· The importance of seeking connection and learning from others who have had similar experiences

· The power of putting in the work and being proactive in one's recovery

· The role of community in providing support and hope

· The challenges and triumphs of navigating life after a stroke

· Advocacy is driven by the desire to prevent others from experiencing the same challenges and misdiagnoses

· Connecting with others who have had similar experiences can provide support and help in finding the right words to describe one's own journey

· Working with organizations like TAF can offer additional resources and support for brain injury survivors

· Sharing stories and experiences helps to combat the isolation and loneliness often associated with brain injuries

· Building a community of support and connection is crucial in the recovery process

Sound Bites

"I had an AVM rupture... I was very much against that."

"I'm not just gonna wake up one day and be better, which is what I was thinking. Like I am gonna have to put in the work."

"It was like seeking connection and learning from others who have had something similar go on."

"I want to raise awareness because I don't want anyone else to go misdiagnosed"

"We're not alone. That's the big learning, I think, from all of this”

"We're stronger together"

Chapters

00:00 Introduction and Background

05:14 Journey with Arteriovenous Malformation and Brain Surgery

11:28 Putting in the Work: The...

The third in our brain aneurysm awareness month series does not disappoint! Gia Patel a teenage survivor of a brain aneurysm rupture comes on to talk about her experience and how she transformed it into an educational campaign supporting accurate diagnosis of childhood aneurysms. She also gives advice on storytelling, highlighting its importance for your recovery. Make sure to give this episode a listen and watch her documentary at Beyond a Headache Documentary.

Summary

Gia Patel, a brain aneurysm survivor, shares her story of experiencing a brain aneurysm rupture at the age of 14. Initially misdiagnosed as a migraine, Gia's symptoms included a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting. After multiple hospital visits and tests, including a CT scan and lumbar puncture, the brain bleed was finally confirmed. Gia underwent coiling surgery, but 30% of the aneurysm remained. She then had clipping surgery at Barrow Neurological Institute in Phoenix, Arizona, which successfully resolved the issue. Gia also discusses the memory loss and cognitive issues she experienced after the surgery, as well as ongoing headaches and the challenges of finding effective medications. Gia Patel shares her experience with brain aneurysm and the challenges she faced as a teenager. She discusses the difficulties of managing medications and balancing a social life while dealing with the effects of her condition. Gia also talks about the naming of her dog Ellie and the coincidental connection to Ellie's Law, a law advocating for brain aneurysm research funding. She highlights the importance of storytelling and community in raising awareness and supporting survivors. Gia also mentions her documentary, Beyond a Headache, which aims to educate and spread awareness about brain aneurysms.

Keywords

brain aneurysm, rupture, misdiagnosis, migraine, thunderclap headache, sensitivity to light and sound, vomiting, CT scan, lumbar puncture, coiling surgery, clipping surgery, memory loss, cognitive issues, headaches, medications, brain aneurysm, teenager, medications, social life, Ellie's Law, storytelling, community, documentary, Beyond a Headache

Takeaways

· Brain aneurysm ruptures can be misdiagnosed as migraines, so it's important to advocate for further testing if symptoms persist.

· Symptoms of a brain aneurysm rupture can include a thunderclap headache, neck numbness, sensitivity to light and sound, and vomiting.

· Treatment options for brain aneurysms include coiling and clipping surgeries, but the choice depends on the size and location of the aneurysm.

· After brain surgery and aneurysm ruptures, patients may experience memory loss, cognitive issues, and ongoing headaches.

· Finding effective medications for post-surgery symptoms can be challenging and may require experimentation.

· Managing medications and balancing a social life can be challenging for teenagers with brain aneurysms.

· Storytelling is a powerful tool for raising awareness and connecting with others who have similar experiences.

· Community support is crucial for brain aneurysm survivors to feel validated and understood.

· Gia Patel's documentary, Beyond a Headache, educates and spreads awareness about brain aneurysms.

· Early detection and treatment of brain aneurysms can prevent life-threatening complications.

Sound Bites

"I...

Summary

In this conversation, Tawnie, an aneurysm survivor, shares her experience of misdiagnosis and delayed treatment. She discusses the symptoms she experienced leading up to her aneurysm rupture and the challenges she faced in getting proper medical attention. Tawnie emphasizes the importance of advocating for oneself and the need for better awareness and understanding of aneurysms. The conversation also touches on topics such as the impact of aneurysms on mental health, THC use, and medication management. Tawnie the Neuro Mermaid shares her experience of having a second brain surgery and how it differed from the first. She discusses advocating for her own treatment and choosing the same neurosurgeon for the second surgery. Tawnie also talks about the anxiety and emotional toll of going through multiple surgeries and the importance of self-care and listening to her body. She explains the concept of being a neuro mermaid and how it represents her neurodivergent identity. Tawnie emphasizes the need to rest and prioritize self-care in the recovery process. In this conversation, Tawnie the Neuro Mermaid and Eryn discuss the importance of self-care and managing symptoms after a brain injury. They talk about the need to prioritize rest, set boundaries, and listen to your body. They also touch on the use of THC for pain management and anxiety, emphasizing the importance of individualized approaches to treatment. Overall, the conversation highlights the challenges and triumphs of navigating life after a brain injury and the importance of finding what works best for each individual.

Keywords

aneurysm, misdiagnosis, delayed treatment, symptoms, medical attention, advocacy, awareness, mental health, THC use, medication management, brain surgery, advocacy, anxiety, emotional toll, self-care, neurodivergent, rest, brain injury, self-care, rest, boundaries, THC, pain management, anxiety, individualized treatment

Takeaways

Misdiagnosis and delayed treatment are common challenges for aneurysm survivors, highlighting the need for better awareness and understanding of aneurysms.

Advocating for oneself is crucial in getting proper medical attention and treatment.

Aneurysms can have a significant impact on mental health, and it is important to address emotional and psychological well-being during the recovery process.

The use of THC and medication management are topics that can be explored in relation to aneurysm recovery and symptom management. Advocating for your own treatment and choosing the right healthcare provider is crucial in the recovery process.

Going through multiple brain surgeries can cause anxiety and emotional stress, but it's important to prioritize self-care and listen to your body.

Being neurodivergent and having a brain injury can heighten emotions and anxiety.

Resting and taking care of yourself is essential for recovery, even if it means adjusting your daily routine and expectations. Prioritize rest and self-care to manage symptoms after a brain injury.

Set boundaries and listen to your body's needs.

Explore different treatment options, such as THC, for pain management and anxiety.

Find what works best for you and don't be afraid to advocate for your own health.

Sound Bites

"I was telling people that I felt like I was dying and something wasn't right. And people weren't listening to me."

"Women have such a high threshold, you know, we're built to have children. So yeah, it's supposed to be the worst pain ever, but I think in aneurysm might be worse."

"I was like, I'm in excruciating pain, yet no one can help me. And then when you're like, I mean, at one point, I begged them to put the shunt in."

"You have a higher purpose. Yeah, someone wants to hear."

"We're not messing around with this like half-done stuff like you're putting...

Welcome to brain aneurysm awareness month! For the month of September, Making Headway Podcast and the The Bee Foundation have partnered to provide a month of episodes exploring resources for brain aneurysm survivors and caregivers. We will also be featuring more great survivor stories and advice. Today’s episode speaks with Erin Kreszel and Christine Kondra who have dedicated themselves to raising awareness, support, education, advocacy and policymaking after losing a family member to a ruptured brain aneurysm. They also have rock star support groups free for caregivers and survivors. Be sure to check out this episode and their website www.thebeefoundation.org.

Summary

Erin Kreszel and Christine Kondra from the Bee Foundation discuss their work in aneurysm awareness, advocacy, research, and policy making. They share their personal experiences and the motivation behind starting the foundation. They explain the different treatment options for brain aneurysms, such as clipping and coiling, and the importance of early detection and prevention. They emphasize the need for education and awareness, as well as the role of support groups for survivors and caregivers. The Bee Foundation also advocates for more research funding and policy changes to improve aneurysm care.

Keywords

aneurysm, awareness, advocacy, research, prevention, treatment options, support groups, education, early detection, prevention, funding, policy changes

Takeaways

· The Bee Foundation focuses on aneurysm awareness, advocacy, research, and policy making.

· Early detection and prevention are crucial in preventing aneurysm ruptures.

· Treatment options for brain aneurysms include clipping and coiling.

· Advocacy efforts are needed to improve education, support, and access to care for aneurysm patients and their families.

· Support groups play a vital role in providing community and resources for survivors and caregivers.

· More research funding and policy changes are needed to advance aneurysm care and prevention.

Sound Bites

"We didn't want another family to go through what we went through with this experience and started the Bee Foundation with the sole focus of preventing aneurysms prior to rupture."

"What should we be asking for in terms of prevention? And then what is it that they do? Like we hear these terms coil, we hear snipping, we hear, you know, clipping."

"Advocate for yourself because there is evidence out there that it's genetic and right now the insurance says two or more people and you can get an MRA to look for an aneurysm but we know if you have one person in your family you should be advocating to get an MRA, there's no reason to wait for two."

Chapters

00:00 Introduction and Background of the Bee Foundation

03:11 Preventing Aneurysms Prior to Rupture

07:50 Understanding Treatment Options: Clipping and Coiling

13:19 Advocating for Education, Support, and Access to Care

19:04 The Power of Support Groups for Survivors and Caregivers

26:38 The Need for More Research Funding and Policy Changes

Reach out to:

www.thebeefoundation.org for support groups

https://www.thebeefoundation.org/advocacy-toolkit/: Ellie’s law advocacy

The Bee Foundation on IG:

Introduction

This is the episode we have been searching for! We highly recommend it for anyone struggling to get the recovery results they hope for post brain injury. In today’s episode, Aaron Cloutier, Doctor of Chiropractics and Anna Blash an Upledger trained craniosacral therapist, massage therapist, and somatoemotional release expert guide us on alternative treatments that actually work! The two of them specialize in assisting brain injured folks in their healing. This is a content heavy episode, but offers a wealth of knowledge and education that will help you recover. It is worth the listen, even if it takes you a few sessions to get through the whole thing. Take notes and reach out to them for more information.

Summary

In this episode, Aaron Cloutier and Anna Blash, a brain injury power couple

specializing in brain management and craniosacral therapy, discuss the anatomy

and physiology of concussions, the role of supplementation in the healing

process, and the intricacies of craniosacral therapy. They highlight the

importance of understanding the spinal dynamics and cranial vault in relation

to concussions and how chiropractic and craniosacral therapy can be

complementary treatments. The conversation touches on supplementation, the need

for individualized dosing, and the importance of consulting with healthcare

professionals when incorporating supplements into a treatment plan. They also

touch on the importance of rest and the integration of body, mind, and spirit

in the healing process. Anna shares case studies that highlight the power of

somatoemotional release in craniosacral therapy. They emphasize the individual

nature of healing and the need for a holistic approach that addresses the

physical, emotional, and spiritual aspects of recovery.

Keywords

concussion management, craniosacral therapy, anatomy, physiology, supplementation, spinal dynamics, cranial vault, chiropractic, craniosacral therapist, magnesium, fish oil, inflammation, dosing, healthcare professionals, healing, traumatic brain injury, rest, integration, somatoemotional release

Takeaways

Understanding the anatomy and physiology of concussions is crucial in developing effective treatment protocols.

Chiropractic and craniosacral therapy can be complementary treatments for concussions and all brain injury types, addressing both spinal dynamics and cranial vault issues.

Magnesium supplementation is important for brain health and energy production, and

magnesium glycinate is a well-absorbed form to consider.

Fish oil, particularly DHA, is neuroprotective and supports brain health, but it's

important to choose a high-quality brand that is third-party tested.

Supplementation should be individualized and discussed with healthcare professionals,

especially when taking other medications.

Craniosacral therapy is a light touch whole body treatment technique that supports and

nourishes the central nervous system, reducing pain, stress, and enhancing health and wellbeing.

Somatoemotional release is a component of craniosacral therapy that focuses on releasing emotional energy stored in the body, which can have a profound impact on

healing from traumatic brain injuries.

Rest is crucial for healing from brain injuries, and it is important to find ways to

achieve true rest and relaxation, such as through meditation, painting,

gardening, or other activities that bring a sense of grounding and stillness.

Healing from brain injuries requires a holistic approach that addresses the physical,

emotional, and spiritual aspects of recovery, and it is important to...

Did you know, 10% of people in the US under the age of 45 experience having a stroke? In this episode, Alison and Eryn interview of childhood survivor of AVM rupture, Andrew Penarubia. Andrew is the one and only intern for Making Headway Podcast. His claim to fame didn’t start there though. Since being left with only one fully functioning hand he has taught himself how to game, play instruments, and sink threes on the court. Being such a young survivor, Andrew grew up with different abilities; many saw his strengths but some chose to bully his weaknesses. He speaks to the challenges of growing up different while providing light and hope. Stay tuned until the end as he showcases his one-handed ukulele skills, doing the first live musical performance MHP has ever had.

Keywords

AVM, survivor, intern, gaming, physical disabilities, hospital, support, school, brain injury, stroke, recovery, walking, disability, social life, bullies, music, faith, inspiration

Takeaways

• Andrew Penrubia is a survivor of AVM and shares his story of recovery
• Despite physical disabilities, Andrew has learned to do things with one hand, including gaming and playing musical instruments
• Andrew received a lot of support from family, friends, and even strangers during his hospitalization
• He returned to school after a few months and continued his education Living with a brain injury requires resilience and determination to overcome challenges.
• Support from friends and family is crucial in the recovery process.
• Finding joy and pursuing passions can help in coping with a disability.
• Music and faith can provide solace and inspiration in difficult times.

Sound Bites

• "Oh hi everyone. I'm Andrew, the 21 year survivor for this AVM."
• "Yes, yes, yes, Super Nintendo, yes, yes. Yeah, we can get along. We're gonna get along."
• "His blood pressure is over 200 and then we can't see anything due to all the bleeding in his brain. So all we can do is put him in a respirator to die slowly and make sure you make your peace with him right now and we're going to make it comfortable for him."
• "So you went home walking, kinda sorta."
• "Hey, you know, that show Walking Dead, I started that."
• "You are the original zombie."

Chapters

00:00Introduction and Andrew's Background

01:36Surviving AVM and Gaming with One Hand

07:19The Power of Support and Prayer

12:06Hospital Experience and Rehabilitation

17:25Returning to School and Overcoming Challenges

19:19The Shock of the Stroke and the Road to Recovery

20:11Dealing with Bullies and Finding Support

23:14Gaining Movement and Discovering Passions

26:18Music and Faith: Sources of Inspiration

32:07Andrew's Musical Talent: Playing with One Hand

Reach out to:

Andrew on IG @just4uke

Andrew on You Tube https://www.youtube.com/@LeftOutie

Eryn on IG @eryn_makingheadwaypodcast

Alison on IG @alison_maknigheadwayodcast

MHP on IG @makingheadwaypodcast

Go to our website www.makingheadwaypodcast.com for full show...

Feeling isolated after your diagnosis? Finding your tribe is life altering and tremendously helpful in facilitating your treatment and recovery from brain surgery and bleeds. TAAF is The Aneurysm and AVM Foundation, a foundation focused on supporting brain bleed survivors, grieving families, caregivers, and research. In this episode, Eryn interviews Dina Chon, the executive director of TAAF. The two discuss the mission and work of TAAF which supports individuals who have experienced brain bleeds and provide resources and information to the community.

Summary

Dina shares the history of the TAAF Foundation and how it has grown over the years. They also talk about the importance of acknowledging and embracing all emotions, not just happiness, in the healing process. In this conversation, Dina Chon discusses her personal experience with her mother's brain aneurysm and how it led her to leading The Aneurysm and AVM Foundation. She shares the importance of support groups and the impact they can have on survivors and their families. Dina also highlights the various programs and resources offered by TAAF, including brain buddies, fundraising events, and research grants. She emphasizes the power of community and the role of TAAF in providing support, education, and advocacy for those affected by brain aneurysms and AVMs.

Keywords

brain bleeds, Aneurysm and AVM Foundation, TAAF, support, resources, emotions, healing, brain aneurysm, AVM, support groups, TAAF, The Aneurysm and AVM Foundation, brain buddies, fundraising events, research grants, community, support, education, advocacy

Takeaways

The Aneurysm and AVM Foundation (TAAF) is an organization that supports individuals who have experienced brain bleeds and provides resources and information to the community.

TAAF was founded by a neurosurgeon and his nurse who wanted to do more for patients beyond medical treatment.

TAAF offers support groups and resources for individuals and families affected by brain bleeds.

It is important to acknowledge and embrace all emotions, not just happiness, in the healing process. Support groups can provide a sense of community and understanding for survivors and their families.

The Aneurysm and AVM Foundation (TAAF) offers various programs and resources, including brain buddies, fundraising events, and research grants.

TAAF focuses on research, programming, and providing support to survivors and their families.

Fundraising is essential for TAAF to continue its work in supporting and advocating for those affected by brain aneurysms and AVMs.

Getting involved with TAAF, whether through fundraising or participating in support groups, allows individuals to give back and help others in the community.

Sound Bites

"If it bleeds, TAAF leads."

"I would literally program myself to work all day and help people 24 hours."

"I am non-robot for sure."

"My mom was lying in the bathroom. She'd gotten up to use the restroom, I'm assuming, and she'd ruptured."

"She opens her eyes and she looks at me and she tells me she loves me. And she passes out and she dies."

"We're going to be like you."

Chapters

00:00

Introduction and Starting the Conversation

03:19

The History and Growth of TAF

08:03

Dina's Journey to TAF

12:16

The Role of TAF in Serving the Community

14:24

Embracing All Emotions in the Healing Process

18:04

Supporting Individuals at Every Stage

22:54

Personal Experience with Brain Aneurysm

28:44

The Importance of Support Groups

32:40

Programs and Resources Offered by TAF

36:53

Fundraising for Research and Support

45:17

Getting Connected with TAF

Reach out to

Eryn on