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,

Introduction

A small subset of hemorrhagic stroke survivors never find out what caused their bleeds. This is call perimesencephalic subarachnoid hemorrhage. Although very rare, this episode has three survivors , Alison, Cheryl, and Eryn, who have found each other and have helped each through their recoveries. Having a community that have experienced what you have in your brain really helps you heal. Listen to learn more!

Summary

Cheryl Divito, Eryn, and Alison discuss their experiences with perimesencephalic subarachnoid hemorrhage (SAH) and the challenges they faced. Cheryl shares her story of experiencing a brain bleed while attending her son's graduation and the subsequent hospitalization and recovery process. They discuss symptoms such as headaches, different-sized pupils, and difficulty walking. The conversation also touches on the lack of understanding and support from medical professionals and the importance of finding a community of survivors who can relate to their experiences. Brain injury survivors with rare subtypes of brain bleeds often feel isolated due to the lack of understanding and support. The medical community may not provide adequate follow-up care or address the ongoing symptoms and concerns of these survivors. It is important for survivors to advocate for themselves and seek out the necessary medical care and support. Coping with the fear of recurrence and focusing on positivity and gratitude can help survivors navigate their recovery journey. In this conversation, Cheryl, Alison, and Eryn discuss their experiences with stroke recovery and the importance of finding support and understanding. They touch on topics such as advocating for oneself, the role of healthcare professionals, the impact of COVID-19 on recovery, the importance of self-care and positive self-talk, and the concept of managing energy levels using the 'spoon theory'. They emphasize the need for a support system and finding a balance between acknowledging and moving forward from the stroke experience.

Keywords

perimesencephalic subarachnoid hemorrhage, brain bleed, hospitalization, recovery, symptoms, medical professionals, community, brain injury, isolation, rare subtypes, brain bleed, support, medical care, follow-up, ongoing symptoms, advocacy, fear of recurrence, positivity, gratitude, stroke recovery, support system, advocating for oneself, healthcare professionals, COVID-19 impact, self-care, positive self-talk, spoon theory, managing energy levels

Takeaways

· Perimesencephalic subarachnoid hemorrhage (SAH) is a condition where the brain bleeds without a known cause.

· Symptoms of perimesencephalic SAH can include severe headaches, different-sized pupils, and difficulty walking.

· Medical professionals may downplay the severity of perimesencephalic SAH, leading to a lack of understanding and support for survivors.

· Finding a community of survivors who can relate to their experiences can be helpful in navigating the challenges of recovery. Survivors of rare subtypes of brain bleeds often feel isolated due to the lack of understanding and support.

· The medical community may not provide adequate follow-up care or address the ongoing symptoms and concerns of these survivors.

· It is important for survivors to advocate for themselves and seek out the necessary medical care and support.

· Coping with the fear of recurrence and focusing on positivity and gratitude can help survivors navigate their recovery journey. Advocating for oneself is crucial in stroke recovery, as healthcare...

After brain injury returning to your world can be daunting. You feel different, you are different so how do you rejoin your social circles or make new ones? In this episode Alison and Eryn talk about their experiences re-establishing social lives post brain injuries. They provide helpful insights and tips they have learned along the way that really helped. Listen along to this easy going conversation for some lived experience and advice.

Summary

In this conversation, Alison and Eryn discuss how their brain injuries have affected their social lives, fatigue, and time management. They talk about how they used to be constantly on the go before their brain injuries, but now they have to manage their energy levels and prioritize self-care. They also discuss the challenges of socializing and going out with friends, as well as the need for accommodations and modifications in social activities. They emphasize the importance of being present in the moment and accepting their new realities. The conversation explores the importance of finding fulfillment and making a positive impact on the world, rather than solely pursuing traditional goals. It emphasizes the value of meaningful moments and simple pleasures in life. The hosts discuss strategies for reestablishing a social life after a brain injury, including practicing gratitude, being present in the moment, and listening to one's body. They also highlight the significance of emotional regulation, taking rest when needed, and conserving energy. The conversation concludes with a reminder to be kind and compassionate to oneself and to appreciate the beauty of life.

Keywords

brain injury, social life, fatigue, time management, energy levels, self-care, socializing, accommodations, modifications, present moment, fulfillment, positive impact, traditional goals, meaningful moments, simple pleasures, social life, brain injury, gratitude, presence, listening to body, emotional regulation, rest, conserving energy, kindness, compassion, appreciation

Takeaways

· Brain injuries can significantly impact social life, fatigue, and time management

· Managing energy levels and prioritizing self-care are crucial for individuals with brain injuries

· Socializing and going out with friends may require accommodations and modifications

· Being present in the moment and accepting one's new reality is important for overall well-being. Focus on finding fulfillment and making a positive impact on the world, rather than solely pursuing traditional goals.

· Value meaningful moments and simple pleasures in life.

· Practice gratitude, be present in the moment, and listen to your body when reestablishing a social life after a brain injury.

· Emphasize emotional regulation, take rest when needed, and conserve energy.

· Be kind and compassionate to yourself and appreciate the beauty of life.

Sound Bites

"Before brain injury, it was pretty easy to just go, go, go, go, go, never stop, be the warrior, just push through. But at least for me, that's no longer the case."

"I don't have the mental capacity to manage all of that."

"I lose my place. I don't remember what I was working on before. I'll stop something midway through then do something else and then never finish that other thing."

"Your focus needs to be on how am I going to fulfill myself while also making a positive mark on the world."

"Having a car does not affect someone else's life in a positive way."

"That's the moment that fulfills your heart, really. That's where inner happiness comes from, I think. That's...

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...