Making Headway

Eryn Martin and Alison House
Making Headway Podcast

Making Headway is a podcast made for brain injury survivors by two friends who also happen to be brain injury survivors. Known as the "invisible disability", brain injuries can make survivors feel alone and isolated even though an estimated 1.5 million Americans are affected every year. You are not alone. Join hosts Eryn Martin (subarachnoid hemorrhage survivor) and Alison House (subarachnoid hemorrhage survivor) on their brain injury recovery journeys as they interview medical practitioners and professionals who lend unique perspective to the recovery process as well as other survivors who share their incredible stories. Website: www.makingheadwaypodcast.com Instagram: @makingheadwaypodcast Facebook: @makingheadwaypodcast

  1. 13 HR AGO

    S3E9: Stronger Together: The Power of Connection in Recovery, with Maddi and Tawnie

    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...

    30 min
  2. 16 SEPT

    S3E8: Beyond a Headache with Gia Patel

    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...

    53 min
  3. 9 SEPT

    S3E7: Brain Aneurysms and Women: Finding a Diagnosis and Symptom Relief

    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...

    50 min
  4. 2 SEPT

    S3E6: What Puts the Buzz in The Bee Foundation

    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: a...

    36 min
  5. 26 AUG

    S3E5: Get Real Results! Supplementation and Craniosacral Therapy with Aaron Cloutier, DC and Anna Blash

    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...

    57 min
  6. 19 AUG

    S3E4: Surviving AVM with MHP’s #1 Intern, Andrew Penarubia!

    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 recoveryDespite physical disabilities, Andrew has learned to do things with one hand, including gaming and playing musical instrumentsAndrew received a lot of support from family, friends, and even strangers during his hospitalizationHe 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...

    35 min
  7. 12 AUG

    S3E3: Find Your Tribe with TAAF

    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

    48 min
  8. 5 AUG

    S3E2: Updates from Eryn: Where She's Been and How She's Doing

    Summary Did you know there are more than 5.3 million individuals in the U.S who are living with a permanent brain injury-related disability? That's 1 in every 60 people. In today's episode, Eryn updates everyone on where she has been and how she has been doing over the past few years. She shares with us her struggle with depression, the impact of Covid-19 on her symptoms, and her journey finding peace and serenity post-brain trauma. Further on, we have Alison who shares her experiences with anxiety, finding tranquility in nature, and the role of faith in guiding her journey. Both Eryn and Alison discuss their experiences with nature, spirituality, and the serendipitous connection that brought them together. They also share their challenges with healthcare, the importance of gratitude, and the need for self-advocacy in their recovery journeys. Keywords brain injury, depression, COVID-19, serenity, peace, nature, anxiety, coping, faith, nature, spirituality, serendipity, healthcare challenges, gratitude, self-advocacy, recovery journey Takeaways Living with a brain injury involves ongoing challenges and adjustments, including managing symptoms of depression and anxiety. The impact of COVID-19 on brain injury symptoms can be significant, leading to a resurgence of cognitive and physical challenges. Finding serenity and peace after a brain injury often involves exploring new hobbies and activities, such as spending time in nature and engaging in relaxing experiences. The role of faith and spirituality can play a significant part in guiding the journey of recovery and adaptation after a brain injury. Nature serves as a source of peace and spiritual connection for Eryn and Alison. The serendipitous connection between Eryn and Alison has been a significant support in their recovery journeys. Challenges with the healthcare system have led Eryn and Alison to prioritize self-advocacy and explore alternative approaches to healing. Gratitude plays a crucial role in finding happiness and appreciation for the simpler things in life. Sound Bites "I'm more at peace and find the tranquility and the serenity that I need, that I crave, like in nature, outside..." "Nature's more like my religion, I would say, than going to church or doing something more formal." "It was God, the universe, whatever you want to believe, higher power, um, agnostic. It was nothing. It was just us finding each other." "Gratitude is the key to happiness." Chapters 00:00 Finding Serenity and Peace After a Brain Injury 26:23 Nature's Spiritual Connection 30:00 Serendipitous Connections and Support 40:03 Navigating Healthcare Challenges Reach out to: Eryn on IG @eryn_makingheadwaypodcastAlison on IG @alison_maknigheadwayodcastMHP on IG @makingheadwaypodcast Go to our website www.makingheadwaypodcast.com for full show notes and resources Support us at: PatreonDonate section on our website.   49:48 The Power of Gratitude and Self-Advocacy

    52 min

About

Making Headway is a podcast made for brain injury survivors by two friends who also happen to be brain injury survivors. Known as the "invisible disability", brain injuries can make survivors feel alone and isolated even though an estimated 1.5 million Americans are affected every year. You are not alone. Join hosts Eryn Martin (subarachnoid hemorrhage survivor) and Alison House (subarachnoid hemorrhage survivor) on their brain injury recovery journeys as they interview medical practitioners and professionals who lend unique perspective to the recovery process as well as other survivors who share their incredible stories. Website: www.makingheadwaypodcast.com Instagram: @makingheadwaypodcast Facebook: @makingheadwaypodcast

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