Making Headway

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

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