Making Headway

S3E25: From Aneurysms to Art: The Power of Music with Toni Hickman

Eryn Martin and Alison House — Mon, 13 Jan 2025 00:15:00 -0800

In this episode of the Making Headway podcast, hosts Alison and Eryn welcome Toni Hickman, an Emmy award-winning music artist and aneurysm survivor. Toni shares her inspiring journey of overcoming two brain aneurysms and a stroke, and how these experiences shaped her identity and music career. The conversation delves into themes of disability, the societal pressures of perfectionism, and the importance of embracing one's journey. Toni discusses her Emmy-winning song and the creative process behind her lyrics, emphasizing the power of music as a form of therapy and expression. The episode concludes with a reflection on the beauty of diversity and the value of every individual's story.

Keywords

Toni Hickman, disability, music, aneurysm survivor, empowerment, mental health, perfectionism, creativity, resilience, Emmy award

Takeaways

· Toni Hickman is an Emmy award-winning music artist and aneurysm survivor.

· She experienced two brain aneurysms and a stroke at a young age.

· Toni's journey highlights the impact of disability on identity and self-worth.

· The concept of perfection is an illusion that affects many people.

· Embracing life after disability can lead to greater appreciation for oneself and others.

· Toni's music serves as a powerful form of expression and therapy.

· The creative process for Toni's songs often feels channeled from a higher energy.

· Lyrics can convey deep messages about resilience and self-acceptance.

· Everyone has value, regardless of their circumstances or challenges.

· Toni encourages listeners to find beauty in diversity and to learn from every individual.

Sound Bites

"Perfection is the illusion."

"You can learn from anyone."

"Everyone in life has value."

"I will never stop believing in me."

"It just came out through me."

"Beauty's in many different forms."

Chapters

00:00 Introduction to Toni Hickman

01:06 Toni's Journey with Aneurysms

04:16 The Impact of Disability on Identity

09:43 Perfection as an Illusion

13:18 Embracing Life After Disability

17:08 The Emmy-Winning Song and Its Message

20:08 The Creative Process Behind the Music

23:19 The Power of Lyrics and Their Meaning

27:37 Finding Beauty in Diversity

28:35 Connecting with Toni and Her Work

Reach out to

Toni’s music is on all major streaming platforms or at tonihickman.com

Toni Hickman on all the socials: @therealtonihickman

Apple podcasts: Toni Hickman Show

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 our website.

S3E24: Navigating Relationships Post Brain Injury with Nia Renee

Eryn Martin and Alison House — Mon, 06 Jan 2025 00:15:00 -0800

In this episode of the Making Headway Podcast, hosts Alison and Eryn welcome back Nia Renee, who shares her journey through multiple brain surgeries and the impact of chronic illness on her relationships. Nia discusses her transition from being a brain injury survivor to a relationship coach, focusing on helping others navigate the complexities of relationships affected by trauma and chronic illness. The conversation highlights the importance of medical advocacy, personal growth, and the challenges faced by those living with chronic conditions. In this conversation, the speakers delve into the complexities of navigating medical trauma, the importance of self-advocacy, and the emotional toll of job loss. They discuss the significance of journaling as a tool for self-reflection and the necessity of setting boundaries to protect oneself from toxic relationships. The dialogue emphasizes the power of vulnerability and the importance of finding supportive relationships that uplift rather than drain energy.

Keywords

brain injury, recovery, relationship coaching, chronic illness, narcissistic abuse, medical advocacy, emotional healing, personal growth, medical trauma, self-advocacy, job loss, identity, journaling, boundaries, toxic relationships, support systems, chronic illness, empowerment

Takeaways

· Nia has undergone six brain surgeries due to Chiari 1 malformation and idiopathic intercranial hypertension

· Chronic illness can significantly impact personal relationships.

· Medical gaslighting is a common issue for patients with rare conditions.

· Nia's husband plays a crucial role in advocating for her health.

· Nia transitioned to relationship coaching to help others with similar experiences.

· The importance of having proper medical credentials as a coach.

· Nia's journey includes confronting her past relationships and trauma.

· Building a supportive community is vital for recovery.

· Nia emphasizes the need for self-advocacy in healthcare settings.

· Personal growth often comes from confronting difficult experiences. Advocating for oneself is crucial in the face of medical trauma.

· Job loss can significantly impact one's identity and sense of purpose.

· Journaling serves as a powerful tool for self-reflection and understanding triggers.

· Setting boundaries is essential for mental health and well-being.

· Recognizing toxic relationships is key to personal growth and healing.

· Support systems play a vital role in recovery and self-empowerment.

· It's important to prioritize self-care and personal needs.

· Documenting experiences can provide clarity and validation.

· Vulnerability can lead to stronger, more authentic relationships.

· Everyone deserves to feel supported and valued in their relationships.

Sound Bites

"Relationships are a big part of our recovery."

"I started having the strangest symptoms."

"I decided to bet on myself"

"You have to document everything"

"I gaslit myself for so long"

"I would rather spend my life alone"

"It's worth cutting out the shit"

"I married someone that has protected me"

"You deserve to feel that"

"You have to prioritize yourself"

Chapters

00:00 Introduction to Brain Injury Recovery

01:11 Nia's Journey with Brain Injuries

08:01 Navigating Medical Challenges

16:50 The Impact of Relationships on Recovery

23:02 Transitioning to Relationship Coaching

26:04 Personal Growth and Empowerment

27:38 Navigating Medical Trauma and Self-Advocacy

32:20 The Impact of Job Loss on Identity and Purpose

37:43 The Power of Journaling and Self-Reflection

42:57 Setting Boundaries and Recognizing Toxic Relationships

49:52 Finding Strength in Vulnerability and Support Systems

Reach out to

Nia Renee: www.howtoloveabatteredwoman.com

Nia on IG @howtoloveabatteredwoman

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 our website.

S3E23: Understanding Brain Aneurysms in Women: Research Supported by The Bee Foundation

Eryn Martin and Alison House — Mon, 30 Dec 2024 00:15:00 -0800

Women experience brain aneurysms at a higher rate than men. Are we alone in wondering what is behind this disparity? NO! This week, we welcome Rosalind Lai MD, a neurosurgeon performing research sponsored by a grant through The Bee Foundation. Dr. Lai and her team are trying to understand the role of the X chromosome in the development of cerebral aneurysms. Understanding this linkage could lead to the discovery of genetic markers for cerebral aneurysms and give insight into the gender differences we see in this condition. The hope would be that eventually we can test for genetic markers and provide treatments that turn down the expression of these genes which would lead to the prevention of brain aneurysms. Join Eryn, Alison, Rosalind and Erin Kreszl of The Bee Foundation (TBF) as we discuss TBF’s fourth pillar—research. Listen to learn more about brain aneurysms and this exciting research project!

Keywords

The Bee Foundation, brain aneurysm, research, gender differences, genetics, prevention, awareness, support, advocacy

Takeaways

· The Bee Foundation supports research, advocacy, awareness, and support for brain aneurysm prevention.

· Brain aneurysms can be asymptomatic until they rupture, making awareness crucial.

· Women are at a higher risk for developing brain aneurysms compared to men.

· This research is focused on understanding the genetic and hormonal factors that contribute to aneurysm risk in women.

· The Bee Foundation has funded over $600,000 in research grants over the past 11 years.

· Genetic research aims to identify specific genes that may increase aneurysm risk.

· Understanding the role of the X chromosome could provide insights into gender differences in aneurysm development.

· Lifestyle factors like smoking and hypertension also play a significant role in aneurysm risk.

· The complexity of aneurysm development makes it a challenging area for research and prevention.

· Community support and engagement are vital for advancing research and awareness efforts.

Sound Bites

"We have four main program areas that we support."

"What is an aneurysm?"

"We want to find these targets."

"Aneurysm is a multi risk factor disease."

Chapters

00:00 Introduction to the Bee Foundation and Its Mission

03:11 Understanding Brain Aneurysms

06:10 Research Focus: Gender Differences in Aneurysms

09:50 The Role of Genetics in Aneurysm Development

19:30 Future Directions in Aneurysm Research

26:38 Engagement and Support from the Community

Reach out to

The Bee Foundation https://www.thebeefoundation.org/

Email: info@thebeefoundation.org

Rosalind, call 716-218-1000

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 our website.

S3E22: Navigating Recovery: Cody Bryant's Journey Through Brain Injury and Healing

Eryn Martin and Alison House — Mon, 23 Dec 2024 00:15:00 -0800

Join Cody Bryant, a brain injury survivor, as he shares his recovery journey, including his accident in Spain, challenges with care, and neuro rehab experience. Cody discusses the changes in his personality, relationships, and emotional regulation post-injury. He emphasizes self-care strategies like meditation and explores topics such as diet, supplements, TMS, physical therapy, and navigating the healthcare system. Cody and Eryn also highlight the importance of community support and vulnerability in the healing process.

Keywords

brain injury, recovery, challenges, care, personality changes, relationships, emotional dysregulation, self-care, meditation, brain injury, rehabilitation, diet, nutrition, supplements, grounding, transcranial magnetic stimulation, TMS, physical therapy, healthcare system, community, vulnerability

Takeaways

· Brain injury survivors often face challenges in receiving proper care, especially when abroad.

· Personality changes and emotional dysregulation are common after a brain injury, and it can be difficult for loved ones to adjust to these changes.

· Self-care is crucial for brain injury survivors, and finding strategies like meditation can help manage the effects of the injury.

· Social engagement can be draining for brain injury survivors, and it's important to find a balance between pushing oneself and avoiding brain fatigue.

· Diet and nutrition play a significant role in brain injury recovery, but healthcare professionals often overlook this aspect.

· Supplements and grounding techniques can also support brain injury recovery.

· Transcranial magnetic stimulation (TMS) may improve social stamina and have positive effects on depression and PTSD.

· Neuro IFRAH is a systematic approach to physical therapy that can help regain motor function after a brain injury.

· The healthcare system often fails to recognize the long-term nature of brain injury recovery and the need for ongoing support.

· Sharing experiences and being part of a supportive community can provide motivation and a sense of purpose in the recovery journey.

Sound Bites

"I thought everyone was trying to kill me and I thought they were trying to steal my genetics."

"I was ripping out my IV and catheter constantly."

"People closest to me basically had to grieve the person I used to be."

"I started reading that book and that was kind of my initial start of recognizing that nutrition played a big role in recovery."

"I do like a urine test every morning to make sure I'm in ketosis."

"I wear this helmet that puts these electromagnetic waves through my brain for anywhere from 30 minutes to an hour every day."

Chapters

00:00 Introduction and Apology for Guest Absence

01:07 Guest Introduction: Cody Bryant

01:39 Cody's Accident in Spain and Severe Traumatic Brain Injury

03:42 Challenges in Receiving Proper Care

05:18 Fear and Delirium in the ICU

08:35 Transfer to Neuro Rehab and Limited Stay

10:08 Difficulties in Recognizing Brain Injury

11:49 Struggling with Identity and Personality Changes

14:29 Impact on Relationships and Grieving the Old Self

17:39 Emotional Dysregulation and Mood Swings

19:23 Navigating Relationships and Understanding Triggers

21:23 Using Meditation as a Reset and Self-Care Strategy

23:25 Balancing Pushing Oneself and Avoiding Brain Fatigue

26:52 The Role of Diet and Nutrition

29:29 Supplements and Grounding Techniques

32:06 Exploring Transcranial Magnetic Stimulation (TMS)

33:08 Navigating the Challenges of the Healthcare System

38:21 The Power of Vulnerability and Community

Reach out to

Cody on IG @codys.combeack

Tick Tock codys.comeback

Neuro IFRAH: https://www.neuro-ifrah.org/

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 our website.

S3E21: Navigating Stroke Recovery: Essential Questions To Ask with Ralph Cortese

Eryn Martin and Alison House — Mon, 16 Dec 2024 00:15:00 -0800

In this episode of the Making Headway Podcast, Eryn sits down with stroke survivor and advocate, Ralph Cortese, to dive deep into the critical questions every stroke survivor should be asking their healthcare team. From navigating the maze of medical care to understanding insurance and case management, Ralph shares his personal journey and expert insights on overcoming the challenges of stroke recovery.

This conversation explores the key elements of healing, from rehabilitation and mental health to community support and dietary considerations. Discover the importance of advocacy, asking the right questions, and building a support system that can make all the difference in your recovery journey.

Tune in to hear Ralph’s powerful message about hope, resilience, and the tools that can help stroke survivors reclaim their lives. Whether you're recovering from a stroke or supporting someone who is, this episode is packed with practical tips, emotional support, and expert advice you won’t want to miss.

Keywords

brain injury, stroke recovery, advocacy, mental health, rehabilitation, support groups, survivor stories, healthcare, patient empowerment, community support, stroke recovery, insurance case management, stroke prevention, medication management, dietary needs, paralysis recovery, daily living tools, patient advocacy

Takeaways

· Advocacy is crucial for brain injury survivors.

· Understanding the type of stroke can guide recovery.

· Patients should feel empowered to ask questions.

· Mental health support is essential post-stroke.

· Community and peer support can significantly aid recovery.

· Rehabilitation specialists play a vital role in recovery.

· Social workers can provide necessary resources and support.

· Life coaching can help set and achieve recovery goals.

· It's important to know the causes of your stroke for lifestyle changes.

· Finding a supportive community can enhance mental health.

· Get a case manager from your insurance company for support.

· Understanding risk factors for another stroke is crucial.

· Always call an ambulance if you suspect a stroke.

· Be informed about your medications and their side effects.

· Dietary needs may change after a stroke; ask about them.

· Recovery from paralysis can take time; seek appropriate therapies.

· There are tools available to assist with daily living tasks post-stroke.

· Asking questions is vital for effective communication with healthcare providers.

· Keep a journal of questions and symptoms for doctor visits.

· Utilize online portals to communicate with your healthcare team.

Sound Bites

"You have to ask what type of stroke you had."

"Social workers can change everything."

"Life coaching can help you set better goals."

"Find your tribe."

"Don't take the chance. Call an ambulance."

"What medications do I need?"

"Will I need a special diet?"

"How long does this paralysis last?"

"There's probably a brace for that."

Chapters

00:00 Introduction to the Making Headway Podcast

01:01 Ralph Cortese's Stroke Journey

03:51 The Importance of Advocacy in Recovery

07:09 Understanding Stroke Types and Causes

10:29 Navigating Medical Care and Treatment

13:53 The Role of Rehabilitation Specialists

17:05 Mental Health and Support Systems

20:27 Finding Community and Peer Support

23:22 Navigating Insurance and Case Management

25:56 Understanding Stroke Risks and Prevention

28:45 Medication Management Post-Stroke

30:34 Dietary Considerations After a Stroke

32:57 Addressing Paralysis and Recovery

37:37 Tools and Resources for Daily Living

42:50 The Importance of Asking Questions

Reach out to

Ralph Cortese: https://www.strokewarriorradio.com/

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 our website.

S3E20: More Than a Speed Bump: with Rawz Pet Food’s Jim Scott

Eryn Martin and Alison House — Mon, 09 Dec 2024 00:15:00 -0800

Jim Scott, a traumatic brain injury survivor, shares his journey of recovery, detailing the physical and cognitive challenges, including memory loss and expressive aphasia. He also discusses the emotional hurdles of navigating relationships and disclosing his injury, maintaining a positive attitude and sense of humor throughout. Jim talks about his book, More Than a Speed Bump, and his work as a speaker raising awareness about brain injuries. He emphasizes the importance of support from organizations like the Krempels Center and the role pets have played in his healing. Jim is also involved in his family’s pet food business, Rawz, which donates all its profits to brain and spine injury nonprofits and to training service dogs. He is available for speaking engagements to share his inspiring story.

Keywords

traumatic brain injury, recovery, challenges, physical effects, cognitive effects, memory loss, expressive aphasia, dating, disclosing, positive attitude, sense of humor, disability, brain injury, adaptation, challenges, emotional struggles, book, speaking engagement, Krempel Center, support, pet food business, charity

Takeaways

· Traumatic brain injury can have both physical and cognitive effects, including memory loss and expressive aphasia.

· Disclosing a brain injury while dating can be a personal decision, but it can also help potential partners understand and support you better.

· Maintaining a positive attitude and a sense of humor can be helpful during the recovery process.

· Recovery from a brain injury can be a slow and tedious process, but with the right support and therapy, significant progress can be made.

· Brain injury survivors may experience fatigue and have to manage their energy levels carefully.

· The physical effects of a brain injury, such as weakness and limping, can sometimes serve as visible reminders of the injury. Living with a disability can be challenging, especially when others misunderstand your abilities.

· Writing and speaking about your experience can be a therapeutic way to process and share your story.

· Support from organizations like the Krempels Center can provide a sense of community and help with rehabilitation and recovery.

· Pets can play a significant role in the healing process and provide emotional support.

· Finding ways to give back and make a positive impact can be empowering and fulfilling.

Chapters

00:00 Introduction and Background

01:08 The Impact of a Family Member's Spinal Cord Injury

02:05 Jim's Own Traumatic Brain Injury

03:21 Recovery and Memory Challenges

06:15 Physical Rehabilitation and Progress

07:42 Life After Rehabilitation

08:57 Cognitive Effects and Acceptance

10:21 Advocating for Physical Improvements

11:28 Disclosing Brain Injury in Dating

13:13 The Fatigue Factor

14:16 Dating Challenges and Funny Stories

16:47 Navigating Disclosure of Brain Injury

18:09 Misconceptions About Brain Injury

19:38 Living with a Disability

20:40 Writing and Speaking About My Experience

22:20 The Power of Support: The Krempel Center and Community

25:01 The Healing Power of Pets

31:13 Giving Back: The Impact of the Family Pet Food Business

Reach out to

Jim Scott email jim@morethanaspeedbump.com

Rawz dog and cat food https://rawznaturalpetfood.com/

Jims website https://morethanaspeedbump.com/more-than-a-speed-bump/

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 our website.

S3E19: Finding Light in Brokenness: Embracing Personal Growth, Spirituality, and Healing with Tymiak Hawkins

Eryn Martin and Alison House — Mon, 02 Dec 2024 00:15:00 -0800

Join Alison and Tymiak Hawkins, a courageous brain hemorrhage survivor, as he opens up about his remarkable journey of recovery and personal transformation. After a life-altering stroke, Ty redefined his priorities and mindset, unlocking a deeper sense of purpose and potential. In this inspiring conversation, Ty shares how a strong support system, discovering your 'why,' and practices like breathwork, visualization, and positive affirmations played a key role in his healing. His story is a powerful reminder of the resilience of the human spirit and the light that can emerge even in the darkest times. Tune in today and get ready to be inspired!

Summary

In this conversation, Ty Hawkins and Alison discuss the importance of mindset and perspective in overcoming challenges and finding gratitude in everyday life. They emphasize the need to shift from a negative mindset to a positive one and to appreciate the good moments in each day. They also discuss the role of spirituality in their healing journeys and the importance of listening to God's guidance. Ty shares his plans for rebranding his book and future projects, including a trilogy that explores the mind, body, and spirit. Overall, the conversation highlights the power of acceptance, gratitude, and personal growth.

Keywords

brain hemorrhage, recovery, personal growth, priorities, mindset, purpose, potential, support system, 'why', breath work, visualization, positive affirmations, resilience, mindset, perspective, gratitude, spirituality, healing, acceptance, personal growth

Takeaways

A traumatic experience can lead to personal growth and a shift in priorities.

Having a strong support system and a clear 'why' can help navigate through difficult times.

Practicing breath work, visualization, and positive affirmations can aid in healing and personal development.

Finding light and beauty in brokenness can lead to a deeper understanding of oneself. Shift from a negative mindset to a positive one and appreciate the good moments in each day.

Listen to God's guidance and trust that you are built for the challenges you face.

Acceptance and gratitude are key to finding peace and fulfillment in life.

Embrace personal growth and continue to learn and evolve.

Find inspiration in the stories and journeys of others.

Sound Bites

"We're all broken, but there's still beauty in things that are broken."

"Out with the bad, in with the good."

"You don't know what you need if you don't understand what you have right now."

"I have bad thoughts sometimes. Not all my thoughts are good and I honor them. I try to understand where they come from. And therefore then I try to shift my mindset to something positive."

"Was your whole day bad or were just a few moments of your day bad? So let's do a review of what's good happened, what bad happened. And let's really see if the day was good or bad or not."

"Maybe I should be grateful that I have $80 to pay for breakfast or I was, I had, you know, I was fortunate enough that I didn't have to do that."

Chapters

00:00 Introduction and Ty's Brain Hemorrhage

03:00 The Impact of the Stroke and Discovering a New Purpose

08:01 Appreciating the Present and Embracing a Positive Mindset

13:03 The Power of a Strong Support System

17:56 Self-Reflection and Healing Through Breath Work

22:47 Visualizing a Better Future and Embracing Brokenness

25:21 The Power of Perspective and Gratitude

30:08 Spirituality and Healing

35:34 Acceptance and Personal Growth

38:48 Future Projects and Inspiring Others

Reach out to

Tymiak Hawkins on IG @twothet2.0

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 our website.

S3E18: From Athlete to Survivor: Bryce's Journey with Aphasia Post Aneurysm Rupture

Eryn Martin and Alison House — Mon, 25 Nov 2024 00:15:00 -0800

In this episode of the Making Headway Podcast, host Eryn speaks with Bryce Daly, a stroke and aneurysm survivor who shares his incredible journey from being a promising student athlete to navigating the challenges of recovery and living with aphasia. Bryce recounts the traumatic experience of his stroke, the subsequent coma, and the long road to rehabilitation. He discusses the emotional and physical hurdles he faced, the importance of support from family and friends, and offers valuable advice for others dealing with similar challenges. The conversation highlights the resilience of the human spirit and the power of community in recovery.

Keywords

brain injury, stroke survivor, aphasia, recovery, support, resilience, mental health, community, rehabilitation, survivor story

Takeaways

· Bryce had a 5% chance for survival after his stroke.

· Recovery from a stroke can be a long and challenging journey.

· Aphasia can lead to feelings of frustration and isolation.

· Support from family and friends is crucial during recovery.

· It's important to advocate for oneself in social situations.

· Memory can be affected by brain injuries, but it can also improve over time.

· Engaging in physical therapy is essential for regaining strength and mobility.

· Community support can make a significant difference in recovery.

· Don't give up on communication; progress takes time and patience.

· Sharing experiences can help others feel less alone in their struggles.

Sound Bites

"I was in a coma for weeks."

"Don't give up."

"I can't remember everything."

"I love my memory."

"I can remember everything."

Chapters

00:00 Introduction to the Making Headway Podcast

00:47 Bryce's Survivor Story: From Athlete to Stroke Survivor

06:03 The Journey Through Coma and Recovery

11:49 Living with Aphasia: Challenges and Triumphs

18:00 Advice for Others with Aphasia and Brain Injuries

24:10 Community and Support: Reaching Out for Help

Reach out to

Bryce on IG @bryceweekly

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 our website.

S3E17: Accessible Healing: Programs for Everyone with LoveYourBrain

Eryn Martin and Alison House — Mon, 18 Nov 2024 00:15:00 -0800

Have you had trouble sorting your mind out post brain injury? Does everything seem like it is floating around (maybe in there, maybe not) but just out of reach? Do you feel especially anxious and have trouble finding a place that you fit now? Join us in this episode as Dr. Kyla Pearce from LoveYourBrain explains the building blocks of their free programming to help you in your brain injury recovery. Through mindfulness, yoga, and support they help teach ways to soothe the nervous system and rebuild pathways that help you better cope with all that brain injury throws at you. This is truly something different than traditional rehab. It is powerful and free. Listen to learn more!

Summary

In this episode of the Making Headway Podcast, hosts Eryn and Alison welcome Dr. Kyla Pearce from LoveYourBrain. They discuss the foundation's mission to support individuals affected by traumatic brain injury (TBI) through community building, resilience training, and mindfulness practices. Dr. Pearce shares personal stories about the challenges faced by TBI survivors and the importance of finding a new identity post-injury. The conversation emphasizes the significance of caregiver support, the role of gratitude in recovery, and the need for accessible programs that foster healing and connection.

Keywords

LoveYourBrain, traumatic brain injury, resilience, community support, mindfulness, yoga, caregiver support, mental health, recovery, brain health

Takeaways

· LoveYourBrain was founded to support TBI recovery.

· Community spaces are vital for those affected by TBI.

· Recovery is different from resilience; resilience focuses on adaptation.

· Mind-body practices help individuals reconnect with their bodies.

· Caregivers also need support and understanding.

· Gratitude can shift our mindset towards positivity.

· Resilience skills can be learned and practiced.

· The importance of shared experiences in healing.

· Accessible programs are crucial for all individuals affected by TBI.

· Finding meaning and purpose is essential in the recovery journey.

Sound Bites

"We create community spaces for TBI recovery."

"Recovery vs. resilience is a key concept."

"It's hard to get back to regular life."

Chapters

00:00 Introduction to LoveYourBrain

03:05 The Journey of Recovery and Resilience

05:57 Community Support and Shared Experiences

08:59 Mind-Body Practices for Healing

11:52 The Importance of Caregiver Support

14:47 Resilience Framework and Life Skills

17:49 Finding Meaning and Purpose

21:05 The Role of Gratitude in Recovery

23:49 Accessible Programs for All

27:03 Conclusion and Call to Action

Learn more about LoveYourBrain:

Reach out to

Learn more about LoveYourBrain’s work and programs at www.loveyourbrain.com

LoveYourBrain on IG @loveyourbrain

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 our website.

S3E16: Dating After a Brain Injury with Octavia Burrell

Eryn Martin and Alison House — Mon, 11 Nov 2024 00:15:00 -0800

Summary

In this episode of the Making Headway Podcast, Octavia Burrell shares her experience of dating after a brain injury. Octavia had a brain hemorrhage at the age of 24 and had to rebuild her life and career. She discusses the challenges of dating as a brain injury survivor and the importance of taking the time to heal and focus on personal growth before entering into a new relationship. Octavia emphasizes the need for alignment and connection with a partner who understands and supports her journey. In this conversation, Octavia, Alison, and Eryn discuss their experiences with dating and relationships after a brain injury. They talk about the importance of setting boundaries, recognizing red flags, and prioritizing self-care. They also touch on the challenges of dating with a brain injury and the need for open communication and understanding. The conversation highlights the importance of self-reflection and personal growth in building healthy relationships.

Keywords

brain injury, dating, relationships, personal growth, healing, career, support, dating, relationships, brain injury, boundaries, red flags, self-care, communication, personal growth

Takeaways

· Dating after a brain injury can be challenging, as survivors may have different needs and experiences compared to before their injury.

· Taking the time to heal and focus on personal growth is important before entering into a new relationship.

· Finding a partner who understands and supports the journey of a brain injury survivor is crucial.

· Building a strong sense of self and stability before dating can lead to healthier and more fulfilling relationships. Setting boundaries and recognizing red flags are crucial in dating and relationships after a brain injury.

· Prioritizing self-care and personal growth is essential for building healthy relationships.

· Open communication and understanding are key in navigating the challenges of dating with a brain injury.

· Listening to your intuition and honoring your needs and wants is important in finding a compatible partner.

· Taking time to heal and create a supportive environment is necessary for personal growth and building healthy relationships.

Sound Bites

"You really should not lead with that when you're going out with people."

"You really, this will be the last time you go this kind of round with somebody."

"For me to want to integrate somebody in my life, they have to be at that level or better."

"I sort of protect her a little bit and she kind of protects me"

"I do have to really think about everything that I've been able to accomplish and really be proud of that"

"It's more about the person, the relationship, that sort of foundational structure. That means more to me than a child"

Chapters

00:00 Introduction and Background

01:09 Octavia's Experience and Journey

05:14 The Challenges of Dating After a Brain Injury

09:08 Moving and Settling Down

12:53 Taking the Time for Personal Growth

23:19 Being Selective and Aligned in Relationships

26:13 The Importance of Self-Work and Stability

30:13 Supportive Relationships and Protecting Each Other

37:45 Navigating Red Flags in Dating

48:01 Personal Growth and Emotional Pathways

52:29 Changing the Environment for Healing

57:14 Recognizing Codependency Patterns and Personal Growth

59:46 Setting Boundaries and Prioritizing Self-Care

Reach out to

Octavia on IG @cbkelli

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 our website.

S3E15: From Tragedy to Advocacy: Finding Support with The Bee Foundation and Jaime Meltzer

Eryn Martin and Alison House — Mon, 04 Nov 2024 00:15:00 -0800

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 our website.

S3E14: Getting Well Again: Recovery with Eric Kubeka, The Brain Barbarian

Eryn Martin and Alison House — Mon, 28 Oct 2024 00:15:00 -0800

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 it's coming out of nowhere."

"Now that I'm on this side of the fence, I would definitely do it again."

"You're a firecracker."

"It's about being a warrior, not taking on that victimization mindset."

Chapters

00:00 Introduction and Eric Kubeka's Story

03:23 The Impact of Brain Injury and the Need for Recovery Strategies

06:01 Challenges and Symptoms in Brain Injury Recovery

08:13 The Role of Hormonal Imbalances in Recovery

10:11 Working with a Neuroendocrinologist and Lifestyle Changes

15:27 Navigating Insurance Coverage for Lab Tests

19:05 The Importance of Brain Injury Coaching and Personalized Treatment

20:12 Embracing a Warrior Mindset

21:48 Personalized Coaching for Recovery

23:31 The Importance of Sleep

25:35 Exercise and its Role in Recovery

28:07 The Impact of Diet on Recovery

29:33 Exploring Therapies for Recovery

33:30 The Power of Meditation and Gratitude

Reach out to

Eric Kubeka on IG @brainbarbarians

Eric on You Tube https://www.youtube.com/@brainbarbarians?app=desktop

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 our website.

S3E13: Dystonia Support with Margaux Galli

Eryn Martin and Alison House — Mon, 21 Oct 2024 00:15:00 -0800

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, and what works for one person may not work for another.

· Supporting caregivers and educating them about dystonia can be challenging but important for the overall well-being of individuals with dystonia.

· The experience of dystonia can lead to shifts in identity and relationships, and it's important to find people who understand and support you.

· Finding a balance between self-advocacy and asking for help is key, and it's important to surround yourself with people who are willing to listen and support you.

Sound Bites

"Dystonia is a movement disorder."

"Stress can worsen the condition."

"Peer-run organizations provide patient-centered care."

"I think physiatrists might look at the whole body in a different way."

"No, pain medication that people think of isn't quite what's needed."

"I like to tackle how to approach alternative treatments safely."

Chapters

00:00 Introduction and Overview

02:00 Understanding Dystonia: Symptoms and Causes

08:47 Finding the Right Specialist for Dystonia Treatment

20:43 Treatment Options for Dystonia

25:35 Understanding the Role of Physiatrists in Dystonia Treatment

28:14 Approaching Complementary Therapies Safely

32:06 The Importance of Self-Advocacy and Support Networks

36:59 Addressing the Isolation of Dystonia

39:30 Navigating Identity and Relationships with Dystonia

42:07 Finding the Balance Between Self-Advocacy and Asking for Help

Reach out to

Margoux on IG:

Facebook support group: NYCdystoniasupportgroup

Dystonia Resources: https://dystonia-foundation.org/

Support group: https://dystonia-foundation.org/living-dystonia/support/

Margaux on IG: neuroconnect_peersupport

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 our website.

S3E12: When They Don’t Know Why Your Brain Bled: PSAH with Cheryl Divito

Eryn Martin and Alison House — Mon, 14 Oct 2024 00:15:00 -0800

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 professionals may not always provide the necessary support and care.

· The COVID-19 pandemic has affected stroke recovery, potentially limiting access to services and support.

· Self-care and positive self-talk are important aspects of the recovery process.

· The 'spoon theory' can be a helpful concept for managing energy levels and setting boundaries.

· Finding a support system and connecting with others who have had similar experiences can provide a sense of understanding and validation.

Sound Bites

"Perimesencephalic subarachnoid hemorrhage means they have no idea why we bled."

"It was nice to find a space where I didn't feel so alone."

"Gravity takes effect, and it hurts so bad."

"Brain injury, I think any brain injury survivor would tell you it's super isolating."

"Not only are we isolated because we have a brain bleed, we're also isolated because we don't really have a community."

"I felt like I was really lucky with my medical care."

"Knock, knock. I'm knocking on doors. Like, I'm not okay. I'm not okay. What do I do? You guys fix me. Like, I'm the patient today. So."

"I didn't even know they had phones in my room. Like, I don't know if this is a dream, like what is happening."

Chapters

00:00 Introduction and Shared Experience

03:02 Cheryl's Experience with Perimesencephalic SAH

05:27 Symptoms and Hospitalization

08:06 Recovery and Challenges

12:11 Support and Understanding

15:04 Going Home and Post-Hospitalization

20:31 Finding a Supportive Community

21:35 Isolation and Lack of Support

23:07 Importance of Self-Advocacy

26:23 Addressing Ongoing Symptoms and Concerns

29:40 Coping with Fear of Recurrence

46:39 Knocking on Doors: Advocating for Yourself

47:47 Navigating the Impact of COVID-19

50:08 The Importance of Self-Care and Positive Self-Talk

52:16 Managing Energy Levels with the 'Spoon Theory'

55:53 Finding Support and Understanding

Reach out to

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 our website.

S3 E11: Re-Establishing Your Social Life After Brain Injury with Alison and Eryn

Eryn Martin and Alison House — Mon, 07 Oct 2024 00:15:00 -0800

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 key."

Chapters

00:00 Introduction and Overview

01:33 Life Before Brain Injury

04:26 Modifying Social Activities

06:11 Adapting to Noise Sensitivity

07:38 Feeling Safer at Home

13:00 Accepting the New Reality

21:56 Embracing Meaningful Moments and Simple Pleasures

26:32 Strategies for Reestablishing a Social Life after a Brain Injury

29:12 The Importance of Emotional Regulation and Rest

35:21 Being Kind and Compassionate to Yourself

Reach out to:

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 our website.

S3E10: Making Policy: How to Advocate with The Bee Foundation

Eryn Martin and Alison House — Mon, 30 Sep 2024 00:15:00 -0800

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 The Bee Foundation’s Toolkit

The Bee Foundation on IG @thebeefoundation

Christine’s email: christine@thebeefoundation.org

Taylor’s email: taylor.cazeault@arnoldporter.com

Mikayla’s email: mickayla.stogsdill@arnoldporter.com

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 our website.

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

Eryn Martin and Alison House — Mon, 23 Sep 2024 00:15:00 -0800

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 Power of Rehabilitation

15:37 Building Community: Connecting with Other Survivors

17:08 Navigating Life After a Stroke

17:10 The Motivation for Advocacy and Raising Awareness

18:37 The Power of Connecting with Others

19:56 The Role of Organizations in Providing Support

23:02 Sharing Stories to Combat Isolation

25:28 Building a Community of Support and Connection

Reach out to

Maddi on IG @maddistrokeofluck

Maddi’s email: Maddi@maddistrokeofluck.com

Tawnie’s website: http://tawnietheneuromermaid.com/

Tawnie on IG @tawniethenueromermaid

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 our website.

S3E8: Beyond a Headache with Gia Patel

Eryn Martin and Alison House — Mon, 16 Sep 2024 00:15:00 -0800

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 experienced the absolute worst headache of my life"

"We think it's a migraine. Migraines typically last 72 hours at most."

"We think it's an incidental finding."

"And then before you know it you're on like 10 different pills and you're like what am I doing?"

"She pulled the mom card as she should."

Chapters

00:00 Introduction

01:32 Gia's Story and Documentary

08:07 Treatment Options and Challenges

15:06 Inadequate Diagnosis and Second Opinion

21:48 Post-Surgery Recovery and Challenges

25:44 Memory Loss and Cognitive Issues

28:26 Ongoing Headaches and Medication

29:00 Challenges of Medications and Social Life

35:03 The Naming of Ellie and Ellie's Law

40:48 Highlighting the Overlooked in Children

45:05 Prevention and Awareness

48:10 The Power of Storytelling and Community

52:44 Gia's Documentary: Beyond a Headache

Reach out to:

Maine Brain Aneurysm Awareness for support groups

Beyond a Headache Documentary

Gia on IG @beyondaheadache

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 our website.

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

Eryn Martin and Alison House — Mon, 09 Sep 2024 00:15:00 -0800

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 the stent in or you're putting a clip in like we're not dilly-dallying anymore"

"The only other time it was really off like this was after my brain aneurysm ruptured and after the brain surgery"

"I sometimes write it out. Like I'm like, you fed the dog and the cat and this and that. And so like sometimes actually writing everything I did."

"I find that, like you said, your eye crossing, like your body's gonna give you symptoms. So if you're noticing like a lot of your stroke symptoms are suddenly all back and you were fine the day before, you maybe need to reevaluate what's on your calendar. Are you doing too much? Is it time to slow down?"

"I now look at like, with the spoons, how many tasks did I actually do? Like, okay, well, it makes sense why you need a rest."

Chapters

00:00 Introduction and Background

02:45 Tawnie's Aneurysm Rupture and Misdiagnosis

06:17 The Challenges of Advocating for Proper Medical Attention

09:30 The Impact of Aneurysms on Mental Health

13:33 Exploring THC Use and Medication Management

16:25 The Long-Term Effects and Recovery Journey

18:59 Advocating for Your Treatment and Choosing the Right Healthcare Provider

25:13 Managing Anxiety and Emotional Stress in Multiple Brain Surgeries

32:46 The Neuro Mermaid: Embracing a Neurodivergent Identity

35:50 Prioritizing Rest and Self-Care in the Recovery Process

39:51 Prioritizing Self-Care and Rest

43:20 Exploring Alternative Treatment Options

49:04 The Benefits of THC for Pain Management and Anxiety

53:15 Finding What Works Best for You

Reach out to:

Tawnie’s website: http://tawnietheneuromermaid.com/

Tawnie on IG @tawniethenueromermaid

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 our website.

S3E6: What Puts the Buzz in The Bee Foundation

Eryn Martin and Alison House — Mon, 02 Sep 2024 00:15:00 -0800

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: @thebeefoundation

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 our website.

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

Eryn Martin and Alison House — Mon, 26 Aug 2024 00:15:00 -0800

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 find

practitioners who have extensive training and experience in craniosacral

therapy.

The integration of body, mind, and spirit is essential for healing, and the

recognition and release of emotional trauma can have a profound impact on the

healing process.

Sound Bites

"One of the biggest {risk factors for concussion} ones being falls, which most people don't even think of getting your head checked out for that."

"Magnesium is one of the keys of the links here that is not only protective pre-concussion, but also helps in the protocols for healing."

"Craniosacral therapy is a light touch whole body treatment technique"

"Healing from brain injuries requires a holistic approach"

"Rest is crucial for healing from brain injuries"

Chapters