Making Headway

Domestic violence survivors are a unique subset of brain injury.  Many have experienced several types of brain injury from blunt force trauma and strangulation inflicted on them by their abusers.  They commonly experience several types of trauma and mental health struggles.  Substance use and limited social support can also play a role.  Getting survivors the services they need to address all the challenges they face requires a unique set of interventions.  The Ohio State University’s health equity intervention scientist, Julianna Nehmeth, is working on just this.  Her research focuses on developing, providing, and evaluating sets of interventions that are used by lay people to guide conversations with survivors, identify their needs, and connect them with services to best meet the survivor where she is at.  You won’t want to miss hearing about this transformative work!

In this episode:

• Julianna’s research focuses on how DV survivors with brain injuries can get better access to services
• One in three women are affected by domestic violence (DV): some groups have even higher incidences.  It is a widespread public health issue
• Julianna started doing community based action research to better understand the needs of the survivors and centers that help them.  Her research focuses on modifying interventions to better meet all their needs.  
• Many DV survivors develop BI because blunt force head trauma and strangulation are common types of abuse.  
• Ohio Domestic Violence Network received a federal grant focused on developing interventions for domestic violence service organizations to better meet the mental health needs of DV survivors with brain injury
• Julianna did a needs assessment.  What she found was that the advocates who help DV survivors were unaware of brain injury as being an issue
• They also interviewed survivors and found  that over 8 in 10 had been hit in the head or had their head hit into something.  Over half of the survivors had this happen so many times that they couldn’t report a number
• Over 8 in 10 survivors also reported strangulation
• Many survivors do not realize they have brain injuries
• In the DV population, many survivors experience TBI from blunt force trauma combined with an anoxic or hypoxic brain injury from strangulation. This is a unique population as many brain injury studies do not focus on brain injury due to multiple causes
• These survivors suffer from trauma, ongoing stress, mental health struggles, racial trauma, and sociocultural trauma.
• The DV brain injury population is highly complex and suffers from a type of brain injury that hasn’t been studied at all. Her team reached out to The Ohio State University's CBI mouse research program to shine a light on this gap 
• Current interventions to help this population were not effective to support the DV BI population.  Julianna’s work focuses on bridging this gap. 
• There are also many unmet mental health needs in this population
• Check out the work of Cecilia Mengo to learn more
• Julianna’s work made interventions for advocates in community based organizations to better meet the needs of the DV BI population
• They made Care Tools to help advocates directly communicate with survivors about brain injury and mental health
• Their tools are free on the Ohio Domestic Violence Network website
• Interventions need to focus on all the pieces of the puzzle to meet survivors needs: mental health, trauma, brain injury, substance abuse
• They found that you have to focus on the big picture and ask survivors what symptoms are getting in the way of their lives today.  What is it they need relief from and lets try to advocate for the right type of help 
• Some may need medical help while others need more of a mental health focus
• They found in this population you can’t isolate a symptom to a certain cause. They have to match the survivor to the many services they may need
• These tools give the advocates the education they need to best be able to meet the survivor where they are.  The tools are formed to be used in the organizations survivors are already going to for services (which may be culturally specific or civil services and are usually not medical)
• The Ohio Domestic Violence Network’s job is to educate the organizations
• Many organizations rely on survivors being cognitively intact which may not be the case in survivors with BI
• The Center on Partner Assisted Brain Injury’s website contains the tools
• C.A.R.E. is a framework that advocates can use for connecting with survivors based on strategies that advocates reported as being successful
• Connecting with survivors and performing genuine and healthy relationships
• Acknowledging that head trauma and brain injuries are common and educating on this
• Responding by accommodating needs related to TBI, strangulation, and mental health and referring appropriately
• Evaluate the referrals made for effectiveness
• Advocates also reported needing tools to directly talk to survivors in non-medical terms.  These tools are also on the site. 
• These trauma informed approaches to care were found to be very effective.  The tools were easy to use and effective because the tools are easy to use 
• CHATS: Head Injury Identification and Accommodation Tool
• They are made for lay people to use to be able to easily have conversation

Links to any resources mentioned: 

• Learn more about Julianna Nemeth 
• MHP: How to Love a Battered Woman episode 22
• The Ohio Domestic Violence Network
• Cecilia Mengo: Mental health, BI, and DV
• The Center on Partner-Inflicted Brain Injury
• Brain Injury Materials:
• CHATS: Head Injury Identification and Accommodation Tool
• Head Injury Education Card: Has Your Head Been Hurt?
• Invisible Injuries Overview (4 pages)
• Invisible Injuries Booklet: When Your Head is Hurt (16 pages)
• Just Breathe
• C.A.R.E. framework 
• The Ohio State Chronic Brain Injury Home: discovery.osu.edu/cbi

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

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We're off for the July 4th holiday but wanted to re-air an oldie but a goodie- one of our very first interviews with our friend Chris Dittrich! He has been an inspiration to us since we met! Hope you all enjoy.

Eryn and Mariah interview fellow survivor, Chris Dittrich, who suffered from a traumatic brain injury as a result of a car crash during his senior year of high school. Early on, his family used a white board posted in his rehab room to post basic reminders (where you are, what happened, goal for day, etc) when memory is poor. The most important message on that whiteboard: KEEP MOVING FORWARD! Chris credits his brain injury with teaching him to be open with everyone around him and comfortable approaching others for help. Chris teaches us that setting manageable goals and achieving them builds confidence. He uses videos on social media to be able to look back and see achievement. Chris believes strongly in being an inspiration to others through actions- showing others that they too can make incredible progress and be a positive influence on others and the world.

Recovery is a journey. It is not an event with a defined end-point. The road can be hella hard! Fortunately, there is help out there! Lea Damata joins us in this episode to talk with us about her experience with post concussive symptoms. She shines a light on all the different types of therapy that have helped her.  Riding on this twisting path is filled with ups and downs. Self-compassion, mindfulness, self-awareness, and perspective make it more bearable. Better is better no matter how it looks; join us to celebrate all our wins!! 

Topics covered:

• Lea’s PCS journey
• Concussion with PCS after a whack on the base of the head and neck,  coming up from the floor where she was cleaning (should this be our warning to not clean?!?!?)
• Initial symptoms were dizziness and an out of this world feeling
• Tried to just push through for several days until she got really sleepy, had loss of energy, struggles with driving, and experienced headaches, sound sensitivity, and irritability
• Lea went to her PCP who advised rest.  Lea couldn’t tolerate any stimulation or physical activity, and needed darkness and rest for days (she did not have a knowledgeable provider that was able to guide on the detriments of this approach)
• Even as a healthcare practitioner, Lea struggled to find providers who knew how to handle post concussive symptoms
• She struggled with insurance and return to work guidelines having to constantly prove that there was something wrong
• Fighting with insurance can be enough to make you feel crazy
• Getting help
• Not having the connections with the right provider giving the right care in the first two weeks set Lea back
• She eventually found providers to help get her on the right path.  She still has symptoms 2 years out
• The hard days
• You go through a grieving process of your old self
• The hard days can lead you to comparing yourself to others.  It takes self-love and compassion, being ok with you, setting boundaries, saying no, and celebrating what you have achieved 
• Better is better regardless of how better it is (11:50)
• It's a journey, not a recovery.  Everyday is a new day.  It is never a linear trajectory.  The downs are hella crappy but you have to remember where you started, how far you have come and all the little wins
• Neuropsychology really helped Lea--it provided tools for reframing and grounding.  It required a lot of work and wasn’t easy but crucial to her journey
• Remember, not everything does suck, even if it feels that way.  
• Helpful therapies
• Physiotherapy (physical therapy) trained in PCS
•  Lea had to find qualified providers, navigating the system and finding people who know how to treat PCS was hard
• Neuropsychology: really helped to validate what Lea was going through.  It gave visibility to the invisible injury.  
• Validation from a provider gave back hope 
• Neuro-optometry: eye exercises and glasses. The exercises can trigger symptoms but build pathways to help you overcome it.
• Vestibular therapy (through physio)
• Occupational Therapy for return to driving and return to work. They broke down the tasks into manageable, bite sized pieces
• Return to work: a gradual desensitization process.  Very short exposures to work with long rests.  She had to keep a log to figure out what her triggers were, what was fatiguing, what types of rest were helpful, and how to work back up to a full caseload
•  Energy conservation: she still has to be very conscious of her “battery” levels
• Need to give yourself the time to check in and remain aware of your symptoms to not crash. 
• Be careful of comparisons
• Words of wisdom
• Better is better
• The journey is never linear
• Know when to ask for help
• Accept where you are
• Yin yoga, mindfulness, and self-compassion to help learn to be where you are
• Your perspective has such a huge influence on where you are putting your energy.  The hard pieces of mental work help you to learn who you are, accept it, and overcome plateaus.
• Finding the right mindset and people to guide you along the way help to make the journey better 
• Learning mindfulness and self-compassion
• Yin Yoga: a place to learn self love
• Mindfulness course
• Connect with Lea 
• Find Lea on Instagram: @Leadphysio
• Feel free to DM her through her Insta

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

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Our brains are truly remarkable organs!! They are what make us unique! It provides the connections needed to support all our body functions, thoughts, personality, and well-being. Their complexity and highly individualized nature are what make it the most misunderstood organ. There is no medicine or one size fits all approach to treatment which makes it a poor fit for traditional medicine. Today, we learn all about functional neurology, a field that truly explores each individual’s unique neuronal responses to provide personalized treatment. Dr. Angela Gabella DC, DACNB, FABBIR gives us an introduction to the field and how it can help you. She gives us hope by reminding us that symptoms like anxiety, depression, confusion, inattention, insomnia, and more are treatable; even if it was something you struggled with pre-injury!! You cannot miss this one!!!!  It is one of our most fascinating episodes yet!

Topics covered in this episode:

• What is Functional Neurology (FN)?
• A treatment of the whole person
• A functional neurologists goes in depth doing a complete physical exam to see how your neurons were affected by your brain injury
• They dig to find what the symptoms are and where they originate from
• So many of us have scans that look normal but still have symptoms. They look beyond the scans
• Neuroplasticity: concept has been around but not commonly accepted until recently and remains controversial
• Early 1900s: Santiago Ramon y Cajal, the father of neuroscience-coined the neuron doctrine, Nobel Prize winner, his ideas weren’t accepted
• 2016: Michael Merzenich, a neuroscientist out University of California San Francisco won a prize related to neuroplasticity which made the idea of the brain being able to change more commonly accepted
• This is a new field with many clinical applications yet to be found
• The field of neuroplasticity gives hope to those of us with brain injury
• Why is neuroplasticity hard for the science community to accept? 
• The brain is still a highly unknown organ with many complexities.
• The science is ongoing.  It’s behind other organ systems.  Clinical applications are still being developed
• It is really difficult to be specific with medication.  There is no easy fix.  
• POTS: Postural orthostatic tachycardia syndrome
• Increased heart rate with standing up that causes you to pass out
• People get stuck in bed with this not being treated.  Greatly limits mobility
• Seen in some brain injury patients.  
• Covid is correlated with an increased risk of POTS
• Dr. Gabella explains a normal autonomic response to position changes
• More common in young healthy females.
• It can be idiopathic meaning there is no easy answer for what caused it
• Need to consider what is going on in the blood and crossing the blood brain barrier. For example when you are sick, is something crossing into the brain that shouldn’t be?
• What is treatment like?
• Tilt table: diagnostic test but can also be used as therapy
• Throughout the different degrees of tilt, the FN measures your BP and heart rate responses and either activates your parasympathetic or sympathetic nervous system to get the correct response. Once you respond appropriately, they change the position of the tilt
• Can take a few to many treatments.  The longer you have have had the dysautonomic response, the longer it takes to treat.
• Females are more susceptible as they have more neuronal connections with a more complex hormonal system.  Also females’ necks are less stable with different vasculature and muscular structures.
• FN= individualized care
• Traditional medicine operates on gold standards, protocols, and expected responses
• With neuronal injury, we all respond differently meaning we need a practitioner who has the time and knowledge to make a personalized treatment plan
• FN looks for what modality will work best based on which areas are damaged and which areas are still good.  They create neuroplasticity pathways to create positive connections.
• Even if the 2 people have a stroke or brain injury in the exact same spot, the 2 people will respond differently.  Recovery relies on activating surrounding neurons to build new connections.
• How do you know you need FN? Look at the symptoms:
• Headaches
• Migraines
• Pressure in the head
• I don’t feel right
• Difficulty concentrating or remembering
• Fatigue
• Sleep and insomnia
• Confusion
• Brain fog
• Feeling slowed down
• Sensitivity to noise, sound, light
• Dizziness: lightheaded, feeling like you’re rocking or swaying
• Nausea, vomiting
• Depression: if you have been treated by medication and it hasn’t gotten better, see FN.  FN can test if depression is from a brain abnormality or psych.  Some people absolutely need psych and medications but others need brain treatment  
• If you have brain dysfunction that causes depression you will see gait, arm swing, trouble walking and concentrating on a task
• Concussion survivors have a high likelihood of depression
• Anxiety
• Cognitive slips, losing your train of thought
• You could have these symptoms prior to brain injury but the brain injury was the thing that pushed you over the edge making your normal compensatory measures ineffective--FN can help!
• What does FN treatment look like?
• It’s noninvasive
• Eye movement measures
• Vestibular stimulation provided by a clinician
• Electric stimulation
• Finding the right sensory system and activating or calming it down to address the symptoms
• Brain health tips
• Brain cells need glucose and oxygen.
• Brain cells do not store glucose, need to snack on high quality food sources frequently.
• Take 5 minute rests: use a breathing app or meditation app.  Your brain needs those moments of rest.  
• Cannot just push through!!
• The question many of us grapple with: Is this just your baseline and who you are now? Most likely it is not and you can be treated!!
• You don’t need to feel helpless or hopeless
• Finding a FN
• Dr. Carrick, founder of the field of functional neurology. Clinicians trained at the Carrick Institute received top-notch education
• Fellow of the American College of Functional Neurology (FACFN), a generalist
• Fellow of the American Board of Brain Injury and Rehabilitation (FABIR), more specified to to brain injuries
• Dr. Gabella: Precision Brain Center Raleigh, NC--many resources on what FN can treat

Links to any resources mentioned: 

• Brain HQ is a great app to strengthen your brain!! Check it out!! 
• Finding a functional neurologist: https://acfn.org/directory/ 
• Dr. Gabella: Precision Brain Center Raleigh, NC--many resources on what FN can treat
• Email Dr. Gabella at: [email protected] 
• Links to any research or studies mentioned
• Learn more about the work of:
• Santiago Ramon y Cajal
• Michael Merzenich: Dr. Merzenich is the brain behind BrainHQ, an online brain training program. More than 100 published studies show that BrainHQ brain training technologies benefit the brain. Learn more.
• Learn more from Dr. Gabella on Functional Neurology through this slide show

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

Follow us on Instagram, Twitter, or Facebook.

As an Amazon Associate, Making Headway may earn from qualifying purchases via links provided.

If you have been listening to us for a little while you’ve probably figured out that sometimes, Mariah and Eryn just talk. Are we the smartest people in the room? Maybe if we are by ourselves (hehe)!  But seriously, sometimes we just want to get real and talk about what we’re going through. In this episode we broach fear, fitness, cookies, selfishness, self care, and ego. Check it out and let us know if it resonates (or not) with you!

In this episode:

• We talk.
• “Just because you are able to do something doesn’t mean that you are the person for the job” (3:56)
• Fear keeps you stuck
• Paralysis comes from fear of failure
• You need to do for you
• Tatoos! (again!)  Taking bets on if Mariah will go through with it. 
• Fitness- do what you can, when you can, however it feels good to you
• Sara Howe--amazing at fitness, amazing at life, listen to her episode here
• Let the facade go, no one really cares. Do what feels good to you and your body.
• Comparisons don’t matter
• Cat Faulk, personal trainer
• You deserve the cookie!
• It’s all about moderation
• Restriction- more proof that black and white doesn’t work
• Your healthy habits are contagious 
• Be healthy for you
• Depression and being sedentary--the tie is tight.
• Brain fog and fatigue
• Sometimes you don’t have the luxury of dropping everything and taking a rest.  Find the places where you can take a break. 
• Be comfortable with getting to know yourself.  Know your boundaries and what you need. Sometimes it means rocking the boat.
• Leading by example- sometimes it means not shutting up about something that bothers you.  Don’t silence yourself because it is the “nicer” thing to do. 
• It is important to question how you function and your natural defaults.  Are you doing something out of fear of what will happen if you don’t or is it because it is actually something that is serving you? 
• Finding the line between being selfish and self-care. 
• Ego and intuition, learn more on Joanne Susi’s episode here.  If you need a life coach, check her out!
• If what you are doing benefits the greater good and makes an impact towards the greater good than it is not selfish
• The ego keeps you where you are and doesn’t want you to move forward.  The ego is trying to protect you and keep you in what you know.  Anxiety and fear keep you from listening to your intuition.  
• Susan Gorman, Intuition 101-- daily email on how to tap into your intuition and meditate 
• Ride the waves, don’t let it detract from your positivity.  Keep yourself out of the mire and from getting pulled under.  

Links to any resources mentioned: 

• Sara Howe--amazing at fitness, amazing at life, listen to her episode here
• Cat Faulk, personal trainer
• Joanne Susi, life coach, check her out!
• Susan Gorman, Intuition 101

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

Follow us on Instagram, Twitter, or Facebook.

Are you looking to regain movement and independence days or years after your stroke? Take a listen, this rehab approach may be for you! Our last episode introduced everyone to Motus Nova, a company that uses technology and video games to regain movement post stroke or neurologic injury. We were so fascinated by this pairing of technology and recovery that we wanted to learn more about how it works.Dr. Nick Housley, Director of Clinical Research at Motus Nova, joins us in this episode to talk about how incorporating fine motor skills into rehab gets huge results! We are not endorsed by this company but love what they are doing so much that we just had to share. Have you given Motus Nova a shot? Let us know what you think! 

Covered in this episode:

• Nick’s Survivor Story: Turning Trauma Upside Down
• Professional cyclist who was the victim of unsportsmanlike conduct resulting in a crash
• Nick suffered facial fractures, jaw fractures, and a brain bleed resulting in hospitalization, reconstructive surgery, and rehab
• He was a student in genetics/pre-med prior to the crash but his experience with rehab helped him to change career paths to physical therapy school at Georgia State University
• He became very interested in neuro-recovery and became connected with the neuroplasticity lab where he met David Wu. This was where the Motus Nova company was born
• He became involved in researching how the technology could increase access to rehab by providing remote rehab through trials with the VA
• He also got a Ph. D in neuroscience to better understand neural recovery
• Dr. Nick is the Director of Clinical Research at Motus Nova
• He is responsible for maintaining a high standard of safe care
• They are constantly tweaking the technology so you can get the best gains
• He makes sure that the assistance the Motus hand and foot provides is appropriately tuned so that it does not induce spasticity and pain
• He makes sure they have the scientific evidence to back up the device and works to put the science on the front line making it applicable to survivors
• What is the current research telling them? How do they take all the data that is collected by the device to make your rehab better?
• Movement based rehab is the gold standard for physical stroke recovery
• More quality rehab= better results and recovery
• The technology collecting data helps scientists to understand what the most important parameters are in movement recovery
• The device makes subtle changes based on how you as an individual are doing.  It detects what your body needs to get the best result.  It can detect more than a human therapist can.
• The Motus hand and foot couples a therapist and technology together to get the best results and designs a program that is optimal for you.  It helps to take some of the guesswork out of what you need to recover
• Motus evaluates you and gives truly individualized care
• Motus looks at a person’s abilities to best use what you can do to improve  what you can’t
• Current research is working on engaging stroke survivors who have little to no functional movement as they have the least amount of ongoing rehab available to them
• Why does Motus Nova focus on the hand or foot rather than the whole limb in people with hemiparesis?
• When you focus on the fine motor skills it has a carryover effect to the larger muscle groups. Fine movements lead to whole limb recovery.
• Focusing on the hand or foot gives the most good to the most amount of people
• If you have the ability to use your hand or foot again, it gives you back pieces of your life and movements that you need to do the daily tasks of life
• Motus Nova focuses on gaining back freedom of movement so you can gain independence
• The Motus foot helps you get balance and support back in your foot which gets you back to walking faster and further
• Why is walking speed important? Safety in the community--you need to get across the street before the light changes.
• The foot helps you regain balance to prevent falls
• The ankle gives you the push off you need to propel forward when walking--you need this propulsion to generate the power in your bigger muscles so that you can walk.  This is why Motus Nova focuses on the foot/ankle
• Who can the Motus Hand and Motus Foot benefit?
• Anyone with ongoing upper or lower extremity impairment, even years out!
• Limb contractures
• Foot drop
• Anyone who is feeling depressed or like there is nothing left for rehab to recover limb movement
• If you are interested, reach out and talk with them--they’ll evaluate to see if this could help you 
• Where is Motus looking to be in the future?
• They want to increase awareness that this technology is available
• They are continuing to learn from users adjusting the video games and devices to provide the best rehab
• They are looking to develop devices for other joints
• They are looking to increase therapists’ knowledge so they can provide the most therapy to the most people
• They are rising to meet the needs of all who want to use technology
• They continue to research and come up with ideas to trial so they can provide technology that will lead to best outcomes.  
• Continued research on how to stimulate areas of the brain to lead to recovered movement. 

Links to any resources mentioned: 

• Rehab Power Hour: Dr. Nick is here and helps you with your recovery, for free!
• Rehab Power Hour on Facebook, Live Sessions Monday, Wednesday, Friday evenings.
• MotusNova.com
• MotusNova Stroke Support group on Facebook
• @MotusNova on Instagram
• Whoop fitness tracker

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

Follow us on Instagram, Twitter, or Facebook.

How can we say this without shocking anyone?? We are not the only podcast looking to connect survivors together!!! Today we talked with our friend, Joe Borges, host of the podcast NeuroNerds. He suffered a hemorrhagic stroke from high blood pressure in 2016. He was feeling lonely and like no one understood him post-injury. It wasn’t until he met his future co-host, Lauren, who also suffered a brain injury that he felt heard. The support they gave each other gave birth to putting out a NeuroNerds in an effort to connect others so no one feels alone. Join us in this episode for all the feels! We laugh, we cry, we turn into butterflies, and make plans to get tattoos!

Covered in this episode:

• Joe Borges co-host of The NeuroNerds tells his story
• He had a raging migraine, felt a pop in his head, and for a split second the most intense pain in his head disappeared but then another second later his body went to jelly.  He felt like he was learning to walk again. The pop in his head was his right basal ganglia (blood vessel in the bleed) popping--a hemorrhagic stroke!
• Stubbornly, he continued on with his night.  He doesn’t remember hardly anything for the next 2 months. 
• He tried sleeping it off.  He was waking up throughout the night puking blood but didn’t want to go to the hospital.  He had some behavior changes and confusion. A family member convinced him to call 9-1-1
• He had a stroke and was in the hospital for a 1.5 months
• He woke up in a brand new body, 30 lbs lighter! He also woke up with a different brain--he couldn’t understand things and had left sided neglect.  He needed full care and had to learn to walk again.
• Leaving the hospital was the best day!! Seeing leaves blowing in the wind had new meaning
• Post stroke realizations
• “Your stroke was a blessing,” it took a few months for him to feel this but it ended up giving him more than it took.  It gave perspective and he has lived more in the 5 years since his stroke than he did the 30 years prior.
• Go to therapy! Process your feelings.  
• He found he had been existing and surviving in fight or flight since he was 7 years old.  He wasn’t living before the stroke, only existing
• He discovered boundaries and what life should be
• His stroke saved his life!
• The only reason you know what good feels like is because you have experienced bad. 
• When you can’t walk, toilet, or bathe yourself; it changes your perspective
• Tremors in right hand, short term memory issues, and cognitive changes persist but what he has gained from the stroke far outweighs it
• “Recovery is not easy.  Recovery is the hardest thing I have ever done. The world is not easy; it is very hard.  Things are heavy and feel insane some days but I feel blessed that I am still here to experience these things.” (17:40)
• Having the comparison of being stuck, dependent in a hospital shows how good life actually is
• It’s ok to joke about your injury if you are ready.  Some funny shit happened and it can be really helpful to laugh about it.  We all process differently
• Survivors are all in different places with this and it's ok if you can’t.  People who haven’t experienced an injury may not get it or feel comfortable laughing at the funny parts with you
• How the NeuroNerds came to be
• Loneliness during recovery: people that haven’t been through it don’t get it
• “Wow, now I have a new perspective but I’m lonely, no one gets it.  This is a second life and now I have to exist alone”
• He found someone at a party that had a car accident and bad concussion. They became friends and bonded over it.
• And best thing, they are both nerds!
• They started meeting weekly to support each other and talk about all things brain and nerd.  Selfishly, they started a podcast to help themselves get through this.
• He was super overwhelmed by doing the podcast and a blog and was ready to give up.  Then there was a listener who reached out with a similar injury letting him know how much his story meant to her.  It was giving her hope.  He realized, they needed to keep this thing going!
• From that moment on, he became an advocate! We have to talk and share our stories to help each other.  
• We are changing the world one survivor at a time!!
• In general, we don’t share our vulnerabilities enough.  It leaves those feeling vulnerable alone.  People want to connect!
• Understanding “normies”
• Normies: People that haven’t had brain injuries
• Sometimes they say stupid things because they are trying to connect with you.
• Post-injury
• Meditation: learning to be comfortable with yourself.  
• Therapy: helped him deal with dark, negative places thoughts can go
• Set boundaries: they are amazing. if people are doing or saying things that pull you down and don’t respect you when you ask them to stop; you may need to set a boundary and let go of it
• Brain injury survivors are evolved beings.  We were caterpillars crawling in the dirt before our injuries--some people miss that caterpillar.  Now we are beautiful butterflies soaring through the sky.  Others can choose to evolve and join us soaring in the sky but we can’t go back to crawling in the dirt.  They can join us when they decide they want to be out of the dirt  (32:30) 
• Sometimes you need to cut people off. It is hard. What is more important, keeping other people happy or your own health? (33:40)
• He chooses to surround himself with people who are in a healing place. Those cut out can rejoin when they’ve evolved. 
• Overcome guilt and poor coping mechanisms related to religion or parental restrictions.  Joe is a “recovering Catholic.” Mariah feels some of this too. 
• The tattoo: Tattoos were never allowed for Mariah.  Getting one represents overcoming fear of letting her family down or other people dictating what she will do. She’s gonna get one for her brain injury anniversary as a mark of being a butterfly, November 13, 2021!
• Celebrate your brainiversary 
• For some it is a time of great joy and others feel it emotionally
• It’s kind of a spiritual day and a mark of rebirth
• Everyday after your injury you are choosing the way you want to live 
• Post injury scars
• Working the physical scars into something you can control
• It’s not the scar but the meaning behind it.  Seeing them brings you back to times when you were at your worst.  It reminds you of having everything taken from you.  
• Joe and Mariah are working them into tattoos to take the marks back as their own rather than allowing the injury to own them. 
• Some think of the brain injury as taking something away from you but it gives you an opportunity to do something new with your life.  
• Being a recovering Catholic, the glass was half empty and the other half was poison.  Having a brain injury gives us freedom to enjoy life and live differently.  We have a different lease on life since we understand how close we were to not being here.
• The way that you measure yourself shouldn’t be based on your past self.  That wasn’t the best you.  We evolve and become better.
• In the immediate period after injury, you don’t know what is coming.  It is easy to get pulled into negativity.  Sometimes it takes time to realize all that you have overcome, all that you have learned, and feel the gratitude.
• Change the way you talk to yourself: it’s not a setback, it's a hiccup.  
• Do you get tired telling your story?
• It is a nice reminder and it is helpful on the rough days.  It helps to put it in perspective that even if today is rough; it wasn’t as bad as then
• Sharing also helps others
• It can help balance and motivate you to keep pushing through
• Finding brain injured friends is life changing.  It changes the trajectory of recovery.  This is why these podcasts exist.  We don’t want anyone to feel lonely or disconnected. We want everyone to feel connected.  Reach out, we’re here for you <3

How to connect: 

• All the socials at @Joesorocks 
• Connect with @NeuroNerds podcast on all the socials
• Listen to episodes of NeuroNerds on all the major platforms!

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 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

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Have you ever heard the saying knowledge is power? When it comes to stroke, nothing is more true. Many of the risk factors for having a stroke are things you have control over--quitting smoking, a healthy diet, and exercise are just a few. In this episode, Dr. Jenna Tucker, DPT teaches us about regaining physical balance to increase mobility and rebuilding a healthy, balanced lifestyle to help prevent future harm. Recovering from a stroke is a full time job; it has the power to transform your life in very positive ways!

Covered in this episode:

• Acquired brain injury: no direct impact causing trauma
• Anoxic brain injury: lack of oxygen causes brain injury
• Stroke: 2 mechanisms that cause stroke
• Hemorrhagic: a bleed from AVM, aneurysm, or other source
• Ischemic: a clot that blocks blood flow, most common type, lots of modifiable risk factors
• The line can be blurry as to what gets called a stroke versus not.  Clinical presentation and mechanism of injury are considered when deciding what gets called a stroke
• Typical presentations are based on which artery is affected.  MCA strokes are the most common
• Left MCA: hemiparesis on the right side of the body (weakness), right sided sensory loss, speech and language deficits
• Right MCA: hemiparesis (weakness on the left side), sensory loss, visual spatial deficits, visual impairments, cognitive impairments
• ACA: higher order cognitive impairments, problem solving, behavioral challenges
• PCA: visual deficits
• Cerebellum: “the little brain,” center for coordination and balance: will see symptoms called ataxia which are impairments in smooth movement 
• There are trends depending on the areas of the brain affected but everyone presents differently
• B.E. F.A.S.T.: Typical symptoms of a stroke.  If you have these, get to the ER immediately!! The faster you get treatment the better the outcome
• B: Balance
• E: Eyes. change in vision
• F: Face. facial droop 
• A: Arms.  Arm weaness
• S: Speech. Slurred speech, difficulty communicating words, not making sense or jumbling, unclear speech 
• T: Time: get to the emergency room immediately, best outcomes come from getting treatment as soon as possible.  If you have a clot, they can give you a “clot busting” medicine but it has to be given within a few hours of the onset of symptoms.  It is important for your doctor to know when the symptoms started.   
• In the book, My Stroke of Insight: A Brain Scientist’s Personal Journey by Jill Bolte Taylor, she explains her first hand account of how it feels to have a stroke.  This book is a great read!
• Patients who have had a stroke are at very high risk of having another one.  Stroke survivors need to be educated on the symptoms to watch for so they can get help as soon as possible.  
• Rehab after stroke
• “How long will my recovery take?”  “How much better will I get?”
• There is always room for improvement.  How much? Time and effort will tell
• Recovery depends on time and effort, every injury and stroke is different.  
• Get off to a good start with a lot of education on risk factors, stabilizing your general health, and education on reasonable expectations.  
• Recovery takes time--it is frustrating and overwhelming.  You end up learning to live with uncertainty and patience.
• The majority of physical recovery happens in the first year or two.  Recovery doesn’t end after this, it just slows down.  As the symptoms get better there is less improvement needed. 
• You may see a lot of gains and improvements early on.  You get to a plateau where it is harder to see gains-- be patient with yourself as changes slow down
• Education on follow through is very important.  As you move on in your recovery the length of time you work with a therapist decreases.  Recovery relies on you following through on your home exercise regimen.  The patient and family are a huge part of the rehab team.  Survivors have to be very involved and motivated.  
• Rehab has to be functional.  Therapists rely on knowing a patient’s goals and breaking it down into actionable steps.  
• You can keep yourself motivated by knowing that every small step brings you closer to the larger goal.  Celebrate all the small steps.  I.e. when you want to lose 100 pounds you don’t say you failed because you have only lost 5 lbs so far. Each pound adds up to the final goal
• If something isn’t working, you may need to change up your therapy, “pivot” and use a different approach to reach your goal
• There is always room to keep improving.  If you feel like you’ve hit a plateau it may be time to change it up.  She gives the example of a patient who wanted to walk.  He was having trouble making progress.  When they talked about what he wanted to do on his walks it was that he wanted to walk his dog. They were able to incorporate canine assisted therapy to help him make gains with walking 
• Where is the Mango Princess? A Journey Back from Brain Injury by Cathy Crimmins: you lose a lot of independence with a stroke and it has a huge psychological component.  It is important for therapists to remember that the people in recovery are people.  What does functional independence mean to the patient? It may be just being able to get around the house in shorter distances versus being able to walk miles.  
• The goal of your recovery is based on what is important to you
• It’s very important to let your therapist know what matters to you.  You can work together to achieve this.
• Modifiable risk factors
• High blood pressure, diabetes, unhealthy eating, physical inactivity, smoking: You need to change these behaviors to prevent another stroke
• You need to address what caused the stroke to prevent having another.  Not only are you recovering from a stroke but you also need to work on healthy lifestyle changes
• Physical inactivity is the new smoking.  Lack of physical activity is detrimental to your health.  You need to exercise.
• Find what type of activity is pleasurable to you.  You have to enjoy it to stick with it. 
• You need to have 40 minutes of moderate to vigorous activity, 3-4 times a week for stroke prevention and optimal level of health
• Physical therapists can help you start an exercise program that is appropriate for you.  They help you set your target heart rate which will tell you if you are in the moderate to vigorous range. Some people are on medications that modify the heart rate so PTs help you find your “rate of perceived exertion” to find the moderate to vigorous range.
• Polar, Fit Bit, Apple can help monitor heart rate
• Balance: a huge part of stroke recovery
• Work closely with a physical therapist to modify exercise to a safe level for you
• Balance relies on 3 main systems: vestibular, visual, and somatosensory system (ability to perceive sensation: touch--ability to feel foot on floor OR proprioception--knowing where your body is in space)
• These three systems work together to send input to your motor system.  Any disruption in this chain causes a problem with balance
• A PT will need to diagnose where the breakdown in balance is to give exercises and strategies that will help.
• PTs are very creative in finding ways to modify your activities to make them safe
• When your balance is off you are at high risk for falls.  
• You have to address the cause of the balance issue and apply the right therapy
• Vestibular: vestibular therapy
• Visual: neuro-optomerty, prism glasses, strategies to help deal with visual neglect
• Somatosensory: teaches ways to work around your loss
• Your brain and body will compensate by relying more heavily on other systems that help with balance
• PTs provide strategies to restore balance along with ways to compensate and work around the deficit.  This will help reduce your risk for falls
• 75% of stroke patients will have a fall in their first year after stroke
• Addressing fall risk
• Address the cause of balance loss
• Modify activities to make them as safe as possible
• PTs and OTs can do home safety evals to make your home as safe as possible
• Nightlighting
• Removal of throw rugs and things you can trip on
• Placement of furniture
• Fear of falling: requires a combination approach of physical and psychological therapy
• Be real with where you are today.  Define today’s limitation.  This won’t last forever. It requires being realistic, diligent, giving it time.  Recovery is a full time job
• Chris Dittrich episode: Keep Moving Forward! Every small amount is an accomplishment.  Follow Chris’s on Instagram for inspiration. 
• Over time it takes less and less structured care and recovery as you incorporate strategies into your life and get stronger
• Healthy eating
• Diet culture is not sustainable, it's more about incorporating a balanced diet
• The general research shows the Mediterranean Diet as being a heart and brain healthy way to eat
• Lots of fruits and vegetables
• Eating natural, non-processed foods foods 
• Live in moderation.  Avoid the extremes of never eating this or always eating that--this type of dieting is hard to sustain
• If you need help, consult a dietician
• The more you know the better off you are.  It can be very overwhelming to take all this in.  If anyone takes anything away from stroke prevention it is doing things that make you feel good, get moving, eat well, and stay hydrated.  It is all about coming back to the basics

Links to any resources mentioned: 

• Using our Amazon links to buy products gives us a small kickback.  Thank you for your support!
• My Stroke of Insight: A Brain Scientist’s Personal Journey by Jill Bolte Taylor
• Where is the Mango Princess? A Journey Back from Brain Injury by Cathy Crimmins
• Heart rate monitors: Polar, Fit Bit
• Chris Dittrich episode: Keep Moving Forward!

Connect with Jenna Tucker, DPT

• Instagram: @jtuckdpt

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

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As an Amazon Associate, Making Headway may earn from qualifying purchases via links provided.

Shit happens! We don’t choose what occurs to us. We may feel victimized and out of control. We may feel scared.  How do you get through it?  In this episode we talk with Joanne Susi, life coach, stroke survivor, and a student of the law of attraction.  We talk about how to move through fear, learn from it, and choose joy. The only control we actually have in life is our thoughts. Need help listening to your inner wisdom and moving forward? Listen today to learn more about being a human being not a human doing.   

Covered in this episode:

• Jonanne’s Stroke Survivor Story
• Her intuition told her she should go to the grocery store rather than staying home alone.   She experienced a stroke while at the store and was around others that were able to quickly help her
• Because of the speed of care, she was able to receive the clot buster drug TPA which you have to receive in the first 3 hours of a stroke.  She regained use of her left arm within 15 minutes after the shot
• While being hospitalized for her ischemic stroke she suffered cardiac arrest and had to be brought back to life.  Thankfully her daughter was with her, her intuition told her something was wrong, and she was able to get help from the medical staff quickly
• Intuition is our wisdom
• Joanne suffered a serious hemorrhagic stroke and needed brain surgery
• She was told she would never walk again
• Never say never, she was determined
• “Focus on what you can do, not what you can’t do.” (7:30)  She can walk, it’s just not like she used to
• “We remember how we were prior to brain injury and when we look at how we are today we are not the same as prior to brain in jury when in fact we are better because we’ve learned more about ourselves.  We need to look at the fact that we can do things, we just do it differently. “ (7:40)
• Joanne has residual effects from her stroke still that include walking with a cane and an AFO, and has paresis in her left arm/hand.
• “We don’t need to let go of our goals.  Joanne uses the law of attraction to help her reach her desired outcomes. (8:47)
• The Law of Attraction is a force in the world like gravity
• When we set a goal, there are two sides to it
• The goal is our desired outcome.  
• The other part is the desire of the thing that we don’t have
• When you have a goal and are thinking about how you haven’t met it your energy is focused on what you don’t have.  You are vibrating in a frequency that doesn’t allow you to have it
• If your focus is on what you don’t have than that is what you get
• Think of it like a radio station.  You have a choice of what station you want to listen to.  If you put on country and want pop you don’t get angry that you can’t hear pop, you turn the station.  The problem is one frequency, the solutio is another frequency.  If you are tuned into the problem you aren’t going to get anything but the problem.  If you tune into the solution, the solution will come to you (10:40)
• There’s power to positive thinking
• Intuition and Fear
• Intuition has no logic
• In Jonanne’s story, logic told her she should stay home where she would not have gotten help.  Her intuition let her know she she go to the store
• Logic (ego) is not bad but it can hold us back from what we want to do
• Fear is paralyzing, caution will keep you safe
• You have to calm the fear
• Stop and calm yourself down.  Wait until you have an inspired action
• Caution is something you listen to to stay safe
• Anxiety is not you thinking.  It is your brain turning something on that isn’t you.  It is something else going on in your brain.  
• Anxiety is not a personal flaw.  It is a chemical response that you can move on from.
• Intuition is our connection to the divine, the connected consciousness
• We all have fear, brain injury or not. We can learn to accept what it is.  Fear gives us an awareness.  Deep breathe when you feel it, journal about it, see what you can learn from it.  This will help the fear subside. 
• When we move through our fear, we encounter help along the way.  God will give you help.
• Feel the fear, acknowledge it, it is ok, work through it to let it dissipate, and the universe will take it over for you
• Fear gives us an opportunity to reflect, slow down, and move forward
• Fear exists for a reason.  It is up to us to listen to or reason with the fera.  Accepting where you are in your recovery process is part of the journey.
• The sooner you can accept where you are in each day and in eahc moment the sooner your awareness of yourself will get you to a better place.  (24:40)
• None of us were taught about our feelings.  All Feelings are ok, it is part of being human,  We don’t know how to deal with our negative feelings.  They aren’t wrong or bad, we just have to learn how to use them (25:00)
• Acceptance is the first step of letting go and moving forward.  If you can’t accept where you are at you are stuck there
• The harder you hold on to pre-brain injury you, the harder it is to move forward
• Brainstorm, From Stroke to My Trusting Place by Joanne Susi
• Getting through the hard stuff
• Joanne loss use of her left arm and she is left handed
• She does miss writing with her left hand.  She had to change how she does her work
• She walks more slowly.  Doors don’t stay open long enough
• She can’t do stairs without a railing
• She has to adjust to the world she can’t expect the world to adjust to her 
• For those who are feeling angry, let's celebrate that you are cognizant and allowing yourself to feel and be aware.  Let’s talk about what you would like to accomplish and problem solve how to do what you would like to do safely. Allow people to help you.  We are all here to be interdependent.  You are not here to do it all on your own.  You can’t do it all well.
• The more joy you feel the more the universe is going to feed you joy.
• Is doing everything really well going to make you happy?  Probably not, it will likely just stress you out.  
• All humans have limitations.  Those of us who have brain injury can put reason to it but we need to realize we are ALL limited.  There is no such thing as a perfectly formed human being (32:40)
• Perfection doesn’t create happiness
• You have to accept that perfection doesn’t exist.  It is freeing!
• Hard times help us to accept our humanness.  We are forever learning this.
• We are evolving beings.  We are spiritual beings having a human experience. How do you become a balanced person?
• Mindfulness
• Meditation
• Relationships
• Keep Moving Forward
• What’s happened has happened.  You can’t change that.  You can change how you move forward.
• How to get unstuck
• How do you want to be?
• What are the things that help you be that?
• We are human beings not human doings
• When you don’t know what you want, take a piece of paper and on one side write down what you don’t want on the other side write the opposite of what you do want. This will help you gain clarity on what you want
• Our belief system is what moves us forward.  You can learn through joy.  You don’t have to u
• It’s all about perspective.  We have control over our thoughts.  It is the ONLY thing we have control over
• We have control over designing our lives which we manifest through our thoughts
• When you feel like you are a victim of the universe you end up in an intense time of figuring out what you believe and why.  The victim mentality puts you in a place of not designing the life you want.  It keeps you stuck. 
• Managing expectations
• We have 3 brains in our body: head, heart, and gut
• The brain and heart have stronger vibrations than the gut
• When you enter a room, people feel what is in your heart
• We need to get comfortable with listening to our hearts not our brains.  Meditation helps us train our brains.  Our brains are not all bad but sometimes they need help. 
• You have all the wisdom you need inside of you.  Stop for a moment and feel into it (don’t think into it).  Stop, does that feel good? Does that feel right? 
• We all have inner wisdom.  Coaches can help us find that if we are having trouble finding that clarity
• Sometimes we need to ask our ego to sit aside which is scary
• You learn to sit with yourself in the quiet and listen.  Once you get over the fear of sitting with yourself you find peace.   
• Our brains can be untamed.  We are learning.  We are becoming more aware.  Be gentle with yourself.  Treat yourself how you treat others.  
• Be the change you wish to see in the world.  Be. Be the way you want to be.  Be, not do.  

Links to resources mentioned: 

• Book: Brainstorm: From STROKE to my TRUSTING Place By Jonanne Susi
• Using our Amazon links to buy products gives us a small kickback.  Thank you for your support!
• Joanne Susi: Life Coach.  Find her at:

Help for healing professionals: H4HP.org

HELP US SPREAD THE WORD!

 We are a podcast for brain injury survivors by brain injury survivors. If you dug this episode head on over to Apple Podcasts and kindly leave us a rating, a review and subscribe!

Ways to subscribe to the Making Headway Podcast:

• Click here to subscribe via Apple Podcasts
• Click here to subscribe via Spotify
• Click here to subscribe via RSS
• You can also subscribe via Stitcher

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As an Amazon Associate, Making Headway may earn from qualifying purchases via links provided.

Are you fatigued after using your eyes? Since your brain injury do you feel anxious in crowds or grocery stores? Are you dizzy or do you get headaches? Does reading bring on symptoms? Do you have trouble tolerating screens even when you take breaks? Is it hard to pay attention? You may need neuro-optometry! 20-30% of brain injury survivors have symptoms caused by oculomotor disturbances that do not self-resolve! Join us with Dr. Jacqueline Theis to learn more about this overlooked profession. We discuss visual processing and how therapy may help you with your lingering symptoms. We were both shocked to learn how much this field can help with many of our ongoing symptoms, you may be too!

Covered in this episode:

• Differences between types of eye doctors 
• Ophthalmology: they go to medical school where they learn a little bit about a lot of the body systems.  Then they specialize in surgery and diseases of the eyes.  They are MDs who specialize in the eye
• Optometry: after undergrad they go to optometry school where they learn a lot about the eye and how other body systems impact the eye.  They can then choose to go to school longer for specialities like primary care, contact lenses, pediatrics, or neuro optometry.
• Neuro Optometry: works with atypical visual complaints.  Your eyeball looks normal but visual processing is interupted.  Typically subtle symptoms  
• Neuro ophthalmologist: medical doctors that can fix structural eye issues with surgery
• Neuro optometry: manages vision rehabilitation and vision therapy that can’t be fixed by surgery or medicine.  They can also make glasses that help accommodate for visual or eye tracking issues post neurological event
•   What Can Neuro Optometrists Help With?
• The signs and symptoms of vision issues post concussion or mild TBI can be very subtle.  Providers don’t even know all the signs and symptoms to be looking for
• If you complain of double vision, blurry vision, or light sensitivity you’ll definitely get a referral to an eye doctor.  The eye doctor will look at the eyeball for structural issues and most of the time the eyeball is fine.
• In the last 5-10 years they have found that common symptoms that are screened for iin brain injury get sent to other providers but are actually related to vision
• Symptoms of visual disturbances post brain injury
• Fatigue with reading and eye use
• Getting anxiety in crowded areas or grocery stores
• Dizziness
• Headache 
• Inattention
• Jaci aims to educate providers about screening for eye movements in patients with ongoing symptoms like those above (symptoms beyond 4 weeks). 
• If symptoms don’t self resolve in 4 weeks, there is rehab that can be done to help.  
• There is actually something that can be done and you can get better!!
• How do the eyes cause anxiety and cognitive problems? Vision uses your whole brain
• Imagine a soccer ball moving left to right in front of you.  The light signal from the ball moves to the retina, it transitions it into a chemical signal and sends it down the optic nerve all the way to the back of the brain to the occipital lobe.  
• The occipital lobe sorts the information and then sends it the part of the brain that needs to respond to it.  
• It gets sent to the temporal lobe which identifies what the object is.  
• At the same time the signal gets sent to the parietal lobe which tells where the ball is relative to where you are.   
• The parietal and temporal lobe send the signal to the frontal lobe to make a decision on what you want to do with the ball.  
• If it decides you want to kick it it sends a signal goes to the midbrain to coordinate the eyes to follow the ball. 
• This whole process moves very fast!  In something simple like tracking a ball left to right you have used every part of your brain.  If your head moves then your vestibular system and cerebellum get used too.
• Your eyes can make you feel dizzy if they are not communicating with the vestibular system
• In a grocery store: you have fluorescent lighting, tons of sounds, and movement.  In a store you have to walk and process information while remembering what you need to grab.  Then you need to be able to decide which type of item you want.  Then you have to move to get the object.
• If any of these processes are off then you get sympathetic nervous responses of fight or flight.  You get visually overwhelmed and become anxious and shut down.   
• Pro tip: make short trips to the store rather than one long one to avoid visual overwhelm (short more frequent stents are better than long ones).  Try smaller stores with less options. 
• How do you diagnose vision issues?
• 70% of the brain is dedicated to vision.  It is very likely that any injury to the brain will have a visual component.  
• Neuro optometrists work a patient through different eye movements
• Eye movements are mapped to certain areas of the brain  If she knows what movements are involved she knows what areas are affected and what symptoms they are having.  
• Many injuries don’t have a scan that will show problems
• Deficiencies in eye movements give objective data to what the patient feels (it will show the provider what is wrong when a scan can’t).  They are using eye movements on the sidelines of NCAA to help with real time diagnoses
• Eye tracking
• Smooth pursuit
• Cicade 
• Moving up, down, right, left are all different areas of the brain
• Convergence
• Holding your eyes in a certain position takes a lot of energy--i.e. Staring at a computer all day 
• Take a proactive eye break for 20 seconds every 20 minutes looking 20 feet away.  Don’t push your boundaries as it will cause symptoms. 
• Brain injured patients will have symptoms with certain movements (dizzy, nauseous, brain fatigue).  Developmental eye movement issues don’t usually have symptoms
• Your brain regulates its own self awareness.  For instance if you have a leg injury you stop when it hurts.  With the brain, you override these signals and try to push through.
• You get too tired to notice your brain is tired then crash
• With the eyes you can get delayed symptoms.  You feel fine in the moment and they 2 hours later feel bad.
• Keep a symptom journal of what you did and how you feel.  Look for patterns
• Symptoms tell you that you did too much
• Helps you to figure out where you need a break
• You’ll eventually be able to increase
• What is an eye break?
• Close the eyes.  Let them rest.
• Recovery is a roller coaster.  When you start having good days be careful not to push too hard (which leads to a string of bad days). Recognize your patterns.  If you have a day that you feel normal or great that means that your brain has the potential to feel normal and great.  Take it easy afterwards so that you can have more good days.
• What can be done to treat these vision issues?
• With subtle oculomotor deficits: need to find a provider who can diagnose and treat it
• The field is working on training more providers what to screen for and when to refer to neuro-optometry 
• Nationally, NORA has a list of providers who are qualified to treat to you
• A neuro-optometrist will screen for vision vs. other systems and refer appropriately if it is not eye related
• Therapy can provoke symptoms but having therapy will get you better faster 
• Neuro-optometry is a small speciality and not as well known
• Research is helping to show the need for vision therapy
• Providers have learned through research that provoking symptoms is not doing more damage to the brain and actually helps
• Teaching providers what to screen for to indicate a neuro-optometry referral is difficult as brain injured patients show up all over the system: EDs, PCP offices, neurologists, rehab specialists i.e. there are lots of people and specialities that need teaching. 
• There is about 10 years between science showing something works and patients getting the “new” therapy
• Neuro-optometry and acquired brain injury (ABI)
• ABIs discussed: stroke and hemorrhage
• Closed head injury patients have many more symptoms with eye movements then ABI (unless a specific area of the brain involved in vision is damaged)
• Most commonly ABI patients will have visual field loss.
• Visual field loss: If the right brain is affected by injury, you can have left vision loss in both eyes and visa versa
• This is hard to accommodate for.  The brain will try to mask that the blind spot exists.  Your brain actively fills it in.  The problem with this after stroke is that patients will feel overwhelmed by things on the affected side or bump into things but they are not aware that it is because of a vision issue because the brain fills it in.  
• Your brain will trick you to deny that there is a problem.
• Training for visual field loss starts with awareness
• Visual field rehab will consist of teaching you efficient ways to scan your blind areas and help fight the fear of falling or fear of new places. 
• Only 8% of people get their full field of vision back.  50% stay the same as post injury. 40% get partially better.  Rehab will teach you how to adapt to things that won’t improve. 
• The therapy for visual field loss has nothing to do with getting your vision back.  It teaches you how to efficiently accommodate and build new, safe habits.
• Visual processing disorders
• You see ok but you can’t interpret what you see
• Visual crowding- “I can’t pay attention if there is a lot of stuff” 
• “I can’t read a map anymore”
• “I can’t find something and it's right in front of me”
• Strategies: wear a ball cap to eliminate excess visual information, hold up your hands and make a triangle or hand shaped binoculars to help filter out all the stimulus around you which will help you find the item you are looking for.  It's the idea of wearing blinders to block out all the extra stimulation 
• Brain injury and trauma and psych
• Many patients with strokes will blame themselves after a stroke thinking they should have done something earlier or done more to prevent.  This guilt does not help you. There are a lot of emotions post stroke
• One area of referral that is huge with stroke and vision loss is psych
• With stroke you wake up and vision is gone. You had no time to prepare for this.  Losing your vision has significant emotional and psychological impacts
• You need therapy to help you with this
• Your caretaker needs to go to therapy too so you can function better as a team
• All emotions post injury are valid.  Many are angry and that is ok! It's a lot to hold onto by yourself.  Get help!
• How do you get help?
• Ask your optometrist if they have an resources for people who do a brain eye exam and specialize in your symptoms
• Telemedicine opens up access to neuro-optometrist
• Some optometrists have overlapping specialties i.e. a pediatric optometrist or low vision doctor may also have the skills needed to treat you
• It’s ok to email the office, tell them your symptoms, and ask if they can help you.  They can help figure out which arm of optometry will be best or if optometry isn’t for you 
• Prevalence of visual issues post brain injury
• Visual field loss in stroke occurs in 24-67%
• Oculomotor issues in the acute stages of brain injury occurs in 70-80%, in the chronic phase (past 1-3 months) it is 20-30%
• Some will self resolve in 4-6 weeks without intervention
• 20-30% will need intervention
• We need more neuro-optometrists in acute care--therapy will be much more effective if they can get prism glasses to correct double vision
• It is worth looking into neuro optometry post brain injury just to make sure this isn’t an area that needs help!
• Summary of signs that you need help: not being able to interpret what you see, not being able to do what you did before, not being able to read well or comprehend reading, the words move on the page, I lose my place easily, I get dizzy and nauseous with reading, screen time-you should be able to take a break and get back into it. Overwhelm at the store.  Your eyes moving when your head is not 

Links to any resources mentioned:

• Find vision rehab near you: https://noravisionrehab.org/ 
• www.virginianeurooptometry.com 
• Facebook: virginianeurooptometry

Instagram: @virginianeurooptometry

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