Making Headway

By: Eryn Martin and Alison House
  • Summary

  • 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
    Copyright 2024 Eryn Martin and Alison House
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Episodes
  • S3E14: Getting Well Again: Recovery with Eric Kubeka, The Brain Barbarian
    Oct 28 2024

    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

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    36 mins
  • S3E13: Dystonia Support with Margaux Galli
    Oct 21 2024

    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,

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    51 mins
  • S3E12: When They Don’t Know Why Your Brain Bled: PSAH with Cheryl Divito
    Oct 14 2024

    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...

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    58 mins

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