Turning Injury into Advocacy | Podcast

by Ian Hebeisen

Editor-in-chief of the Brain Health Magazine, Amy Zellmer, is no stranger to podcasts she reached recently her 200th episode of her podcast “Faces of TBI”.

Earlier in March, she appeared on an episode of the Making Headway Podcast, hosted by Mariah Morgan and Eryn Martin to talk about her brain injury experience and the path it led her on towards recovery and advocacy.

Amy received her TBI from a fall when she slipped on black ice on her driveway. She immediately knew something was wrong due to her throbbing head and blurry vision. She began suffering from vision problems like nystagmus and focusing issues, as well as other ailments including memory issues and fatigue. She started visiting doctors, neurologists, and chiropractors, each one diagnosing different problems, but none offering long-term solutions.

Chiropractic care helped realign her sternum and alleviated physical pain, and yoga improved her balance. But it wasn’t until two and a half years after her initial incident that she discovered functional neurology and began making steps towards recovery.

During this time, Amy wrote an article describing her struggles with her TBI, specifically the troubles she had getting her friends to understand what she was going through. “Tons of friends drifted away… it really, really hurt. They had been there for me when I had a cold, for these inconsequential sicknesses”. This article, featured on the Huffington Post, acted as a springboard for advocacy for Zellmer.

Advocacy

Since then, Amy got involved with several brain injury organizations and started attending Brain Injury Awareness Day. She also created the Brain Health Magazine, the Faces of TBI Podcast, and the Concussions Discussions video series. “Everybody has a different way of comprehending after brain injuries… so I really tried to target the different ways of inputting information.”

These various platforms are to help raise awareness about the TBI community. Mariah Morgan reflected during the interview that TBIs can come across as invisible. Even functional neurology seems rather unknown compared to normal neurology, which tends to focus on neurological diseases rather than brain injuries. 

While Zellmer does encourage others to serve as an advocate for TBIs, she urges people to stay aware of their own limitations. “You know your body best,” says Zellmer, and advises against comparing recovery times to other people. “Some people might take a lot longer to get there… no two injuries are the same, no two recoveries are the same.”

A good place to start getting involved as an advocate is with nonprofits, or the Brain Injury Association of America. Most nonprofits are run by a handful of people, so be patient when reaching out. Don’t forget to take your time: raising awareness can start with something as simple as explaining your story to a listening ear.

Listen to “Making Headway” on Apple Podcasts, or wherever you get your podcasts. To learn more, visit www.makingheadwaypodcast.com. 

Injury to Advocacy — Podcast highlights

  • (1:20) Initial fall, hit head, 
  • (5:08) Torn muscles, shifted skeletal system, almost broke clavicle
  • (6:45) Chiropractor turned her towards neurologist, told them to wait it out
  • (7:30) Vision blurry, not thinking straight
  • (8:25) Told it was depression, concussion, but not brain injury, told eyes were fine, not given any solutions besides Ritalin
  • (9:07) Began doing yoga poses, started feeling better (improving balance and mobility)
  • (10:00) Discovered functional neurology 2.5 years after initial incident
  • (11:23) Cleared eye stuff up (computer tab analogy: too many tabs open, none will work well)
  • (11:45) Body was constantly trying to not fall over, once that was cleared up other issues began improving (memory, etc.)
  • (12:50) Attentiveness to the body dramatically increases
  • (15:00) People are not finding the answers they need; functional neurology isn’t as well-known as it should be
  • (15:25) The functional neurologist found Amy, started getting results
  • (17:05) Now doctors rely on imaging, which only shows brain bleeding and sheering, they’ve stopped doing the more “bedside” techniques that the func-neuros use
  • (17:56) More tech does not equate to time gained, but skill lost. More tech, less intuition
  • (19:29) YOU KNOW YOUR BODY BEST, don’t let people gaslight or negate your intuition
  • (20:55) Group of friends who helped when Amy had a cold wasn’t taking care of her with a brain injury, Amy wrote an “f-you” post, submitted it to the Huffington Post and heard back within 2 hours.
  • (22:20) Article got published during photography conference, got applause when she mentioned it, later found her phone blown up with messages
  • (24:26) Created “Amy’s TBI Tribe” Facebook group where people can ask questions and such
  • (26:10) Every 9 seconds, someone has a brain injury (someone in the U.S.?)
  • (26:30) HuffPost served as sort of a first wave for func-neuro awareness and brain injury awareness
  • (28:26) Published 2 books: first consisted of about 14-15 HuffPost articles, second was about functional neurology and the next 14-15 HuffPost articles
  • (31:00) Started podcasting in 2016, originally one of the first podcasts about brain injuries, now has 200 episodes with people asking to be featured.
  • (32:55) Podcast=reminder you aren’t alone, TBIs can seem invisible and this raises awareness and solidarity
  • (34:20) Did a GoFundMe to get money to fly out for Brain Injury Awareness Day, found out each state has a chapter, Amy got involved with the Minnesota Branch (meet with legislators, meet on Tuesdays, pushed to get emergency contacts on driver’s licenses)
  • (36:06) Went to DC to lobby for Healthcare, protect the ACA
  • (37:03) People keep trying to reinvent the wheel, just try and connect with local advocacy groups (BIAUSA.org, Brain Injury Association of America). 
  • (38:04) KNOW YOUR OWN LIMITATIONS, you’re still recovering. You can start by writing your own story, or guest-starring on a podcast, baby-steps.
  • (41:04) Eryn: “You’re never not going to be able to function without mindfulness”.
  • (41:30) Mariah: has moments where she’s like “I’m beyond this” but then has moments when they realize they’re still going through it. Can have imposter syndrome, where you’re like “at least I’m not like that, did I ever belong?”, says you never really leave the community.
  • (45:20) You only see Amy’s highlight reel, you don’t see her hardships. Builds in recovery days while traveling, doesn’t work full days, etc. Learned how to manage energy and workload. DON’T COMPARE YOUR RECOVERY TO OTHERS.
  • (44:03) Nonprofits are usually run by a couple of people, so be patient.
  • (48:45) March 16th (Amy’s Birthday)=Virtual Brain Injury Awareness Day event, free, 30 speakers (Holly Castresiti), some of the cast from Quiet Explosions (q&a), facesoftbi.com/event
  • (49:36) March 22nd=launch of season 2 of Concussion Discussions video series, free event, concussiondiscussions.com
  • (50:52) Insta/FB=@amyzellmer, facesoftbi
  • (51:31) HuffPost (article) to Podcast (audio) to Concussion Discussions (visual/video)=trying to create different ways for people to digest info since each person processes things differently

Ian Hebeisen graduated from Saint Marys University in May 2020, earning a degree in Literature with a Writing Emphasis. Now living in the Twin Cities, Ian writes comics, graphic novels, and poetry. In his spare time, he enjoys playing board games with his family.

Brain Injury Awareness Day Event {Replay}

Thank you to our amazing presenters as well as the cast and crew from Quiet Explosions.  Shout-out to the hundreds of amazing humans who joined us for our live virtual event!

Below are the replay videos of the event (part 1 and 2) … Also. please help support our sponsors who made this day possible by clicking on their logos below! Be sure to grab your #NOTINVISIBLE care package and show your TBI pride all year long!

 

Thank you to our event sponsors!!
Click on any logo to visit their website

Integrated Brain Centers

Framework Functional Psychiatry

Chiro Pro Performance Center

In Depth Vision

Success Rehabilitation

Billy McLaughlin shares about Focal Dystonia #podcast

Billy McLaughlin, world class guitarist and Emmy award winning composer (among other accomplishments), almost lost his career due to focal dystonia. This neuromuscular disorder created a rift between his brain and his right hand, causing contortions and making it difficult to play the guitar. McLaughlin struggled to find a diagnosis, but upon learning about dystonia, began seeing specialists. He started relearning the guitar with his left hand, and is now an ambassador for the Dystonia Medical Research Foundation.

In this podcast we discuss:

  • There are different kinds of dystonia, sometimes misdiagnosed as cerebral palsy. There’s generalized dystonia, cervical dystonia, and other forms that target the neck and vocal cords. Focal dystonia targets a specific part of the body; in McLaughlin’s case, it targets his fingers (4:24).
  • McLaughlin saw lots of hand doctors, who hypothesized that the problem was psychological. In fact, it was neurological: “The trouble is in my fingers, but the problem is actually in my brain, and the inability of my brain to talk to my fingers individually.” (7:34).
  • Similar to a TBI, there might have been an incident earlier in his life that may have triggered the dystonia without him even realizing it (8:50).
  • McLaughlin struggled to get a diagnosis because dystonia is not prevalent in med school curriculum (11:46).
  • Insurance companies can be hard to work with for TBIs and dystonia because of a lack of understanding (18:34).
  • Amy discusses her experience with people getting into car accidents and not being checked for concussions or TBIs (19:24).
  • Athletes can be mistreated because people assume they know what they’re getting into (21:25).
  • McLaughlin received Botox and started relearning the guitar with his left hand; these are examples of adapting to the dystonia (25:05).
  • Don’t be afraid to find a specialist and to seek out help. You don’t have to battle a TBI or dystonia alone (31:14).

Listen to the full podcast here or on iTunes.

This podcast is brought to you by Integrated Brain Centers … fill out this google form for a free 15 minute consult with Drs. Steadman or Maynard.

WCCO News Radio Interview

I was recently interviewed by Roshini Rajkumar on Minneapolis WCCO radio to kick off Brain Injury Awareness Month (March).

We briefly discussed my brain injury that occurred in February 2014, celebrating my 7-year brain-iversary.

We also discussed some of the common concussion myths such as:

  • you must hit your head to sustain a concussion
  • you must lose consciousness to sustain a concussion
  • concussion symptoms will resolve themselves in 4-6 weeks
  • concussion symptoms will appear right away
  • an MRI will tell you whether or not you have a TBI
  • you must have all the symptoms to have a concussion

You can listen to the interview here:

#NOTINVISIBLE Care Package | TBI Awareness

For a limited time I am offering a care package that includes:
1 sticker
2 buttons
2 wrist bands
and 10 random packages will receive a secret surprise!
Cost: $5 plus $1 US shipping (US only)
If you’ve come to one of my live events you likely received a FREE button and wristband, however, I am receiving a lot of requests from folks who haven’t been able to attend an event … so here you go! Your wish is my command!! Just in time for Brain Injury Awareness Month — though I wear my green ribbons all year long!
(only US shipping available)
Proceeds from the care packages will go directly towards the #NOTINVISIBLE awareness campaign to purchase more supplies for the attendees!! Help us spread awareness by sporting a button and wrist band!

Concussion Discussions Book Launch Replay

This anthology brings together 20 experts from around the country who share with you their advice and experience working with patients with brain injury.

As you explore the chapters, you’ll read about the numerous ways brain injury survivors can THRIVE in their recovery, often after traditional medicine left them struggling for answers. Additionally, you’ll learn about different symptoms associated with brain injury (headaches, dysautonomia, eye tracking, brain fog, dizziness, thyroid disorders, and more), as well as the importance of understanding your legal rights.

If you or your loved one has suffered a brain injury, this book offers you a wealth of information, but, more importantly, also offers you HOPE!

Never lose hope — no matter how many years since your injury occurred, or how many doctors have told you they can’t do anything for you. There truly are providers and professionals who understand exactly what you’re going through, and how to help you achieve the quality of life you’ve been seeking. Twenty of those caring professionals share their knowledge and experience in this book.

Pre-order your copy of the book on Kickstarter

Now through March 2nd
$18 plus free US shipping
https://www.kickstarter.com/projects/brainhealthmag/book-concussion-discussions

Healing From Traumatic Brain Injury With Yoga

Yoga is something that I have done since college (if you promise not to do math, I’ll simply say I’ve been doing yoga for 20+ years).

There was a period of time when I considered going through the teacher training program and becoming a yoga instructor but never had the time to get it done. Then the pandemic of 2020 hit, and was the perfect time to get my 200 hour YTT, as well as a trauma-informed yoga teacher certification, and yoga therapy certification.

Why, you ask?!

You don’t understand yoga’s true, full potential until you’ve gone through a life-changing physical trauma. Knowing what I know now, I have a deeper love and appreciate for yoga; a greater understanding of it’s powerful healing benefits.

In February of 2014 I slipped on a patch of black ice on an inclined driveway. I had zero warning as my feet went up into the air and my skull made full impact with the frozen asphalt. Amazingly, I walked away with my life — I am still in awe at the incredible resilience of one’s skull and how much of an impact it can actually take.

What I did sustain in the fall included: a severe concussion (later referred to as a traumatic brain injury, or TBI for short), major whiplash, c4/c5 damage in my neck, torn muscles in my neck, throat, abdomen, and chest, and a dislocated sternum.

Sounds like a load of fun, huh?

As we began addressing the physical injuries, I was unaware of the journey I was starting inside my head. A traumatic brain injury (TBI) is a very complicated and invisible injury, and one that many professionals (as well as friends and family) just don’t quite understand. I was frustrated when doctors wouldn’t listen to me, or would simply tell me that I will feel better in a few weeks. Every few weeks would start a new cycle of pain, grief, and anxiety.

After about 15 months of feeling pained, isolated, depressed, and anxious I reached out to a yoga instructor friend of mine.

Because of the dislocated sternum, I wasn’t able to lift my hands much higher than my shoulder and couldn’t take a full, deep breath. Because of the TBI I suffered from dizzy, balance, and neck mobility issues. I also noticed I would drag my right foot and my right arm did not move in motion with my walk — both of which are a neurological problem.

My dear friend helped me come up with FIVE yoga poses that I could do without feeling like I would fall over or causing me pain and discomfort.

Five poses. That was it.

They included: cat-cow pose, puppy dog (child’s) pose, tree pose (with the help of a chair for balance), eagle arm pose, and side twists while lying down.

After a few days of doing these five poses for about 10-15 minutes, I started noticing a difference. I was able to breathe deeper than I had since the accident, my flexibility was coming back (slowly), and my dizzy and balance issues were starting to bother me less. My range of motion was growing every single time I did yoga.

I gradually added in some of my favorite poses as I felt ready, for a single breath. I would go into down-dog pose and warrior pose just to see if I could. I would hold it for one breath, and then two. I eventually got brave enough to try side angel, which is my ultimate favorite post (and the one pictured above). I was thrilled that I was able to do it, at least with a block to assist me.

Now that I am just over seven years out from my accident, I am an advocate for TBI awareness, I am teaching yoga to a greater audience. I not only want to raise awareness, I want to help other survivors. Which brings me back to my point about teacher training. While you do not need an actual license/certificate to teach yoga, I wanted to go through proper training so that I know how to keep my students safe, while helping survivors find some comfort and peace in yoga, the way that I did.

Yoga for every BODY.

EVERYONE can do yoga, even those who think you have to be “flexible” to do it. Yoga is an individual activity, one in which you only do what you can. It can be modified to fit your injury, and some poses can even be done from a hospital bed. There are amazing benefits to doing yoga, and I hope that my experience can help another survivor decide to give it a try!

Join me for my weekly accessible yoga practice for only $10 a month through my Patreon membership site.  To get a taste of my yoga style, CLICK HERE for a 20-minute Brain Yoga practice.

Namaste,
Amy

20 Minute Brain Yoga Practice

Join me for a gentle 20 minute ‘brain yoga’ practice … this gentle practice will help wake up your brain and body, and strengthen your balance and stability. Using contralateral and cross lateral movements we will help connect your body and brain in a unique, and gentle way.

Watch my Wellness Chanel on YouTube

Join me for my 7 Day Wellness Challenge
https://awbcce2.aweb.page/p/0bfba5ff-a983-44a9-b1a8-21d09ff81058

9 Ways to Naturally Relieve Stress and Anxiety

At some point in our lives we all get anxious or feel stressed (give a personal example of a time that you feel overwhelmed). It’s not my intention to diagnose or take away from the importance of seeing a medical professional when needed, but I do think it’s important to talk about some quick and easy things that you can do every day to help relieve your stress and anxiety naturally.

When you’re stressed or anxious it can have some serious effects on your daily activity and mood. We’re all busy and we want to do anything that can help us with our day to day activities and improve your mood. If you’re stressed, it can cause muscle tension, headaches, over or under eating, fatigue, lack of motivation, sleeplessness…and honestly, that’s just the tip of the iceberg.

So now you see how important it is to do anything within your power to help relieve your stress and anxiety so here’s my top tips of things that you can easily do at home to help you:

  1. Stay active! We all know that regular exercise is good for your physical and emotional health. It’s been proven that regular exercise works just as well as medication for some people. And it’s not just a short-term fix; exercise naturally increases the endorphins in your body which can help with anxiety relief for hours after working out. 
  2. Don’t drink alcohol! Alcohol is a natural sedative. Drinking a glass of wine or a small glass of whiskey when your nerves are shot may calm you at first. But once the buzz is over, anxiety may return with a vengeance.
  3. Ditch the caffeine! Caffeine can cause nervousness and jitters, which isn’t good if you’re anxious. There have been a lot of studies done that show caffeine may cause or worsen anxiety disorders. It may also cause panic attacks in people with panic disorder. In some people, eliminating caffeine may significantly improve anxiety symptoms. 
  4. Make sleep a priority! If you’re not sleeping, it can make your anxiety and stress worse throughout the day. If you’re tired, you’re more likely to reach for sugar and carbs throughout the day, which won’t help either. Which brings me to #5.
  5. Eat a healthy diet! Low blood sugar levels, dehydration, or chemicals in processed foods such as artificial flavorings, artificial colorings, and preservatives may cause mood changes in some people. A high-sugar diet may also impact your mood. If your anxiety worsens after eating, check your eating habits. Stay hydrated, eliminate processed foods, and eat a healthy diet rich in complex carbohydrates, fruits and vegetables, and lean proteins. 
  6. Meditate! Research from Johns Hopkins suggests 30 minutes of daily meditation may alleviate some anxiety symptoms and act as an antidepressant. The main goal of meditation is to remove chaotic thoughts from your mind and replace them with a sense of calm in the present moment. 
  7. Take slow, deep breaths! Have you ever noticed when you’re extremely anxious or nervous that your breathing becomes shallow and fast? When you’re breathing fast, It may lead to a fast heart rate, dizziness or lightheadedness, or even a panic attack. The deliberate process of taking slow, even, deep breaths,  can help restore normal breathing patterns and reduce anxiety. 
  8. Aromatherapy! Aromatherapy uses essential oils. The oils may be inhaled directly or added to a warm bath or diffuser.  Studies have shown that aromatherapy helps you relax, sleep, boosts your mood and can reduce your heart rate and blood pressure.
  9. Drink Chamomile tea! Studies have shown that a cup of chamomile tea can help calm your nerves and promote sleep. 
  10. CBD oil. I use a product from Entangled Biome which is a full spectrum hemp oil (FSHO) tincture that you squirt under your tongue. Get 15% off your first order with code: 15tbitribe

Let me know in the comments below which one of these you’re going to try today to help relieve your stress and anxiety!

The TBI Doctor Recommendation Program

I hear from so many of you on a regular basis who are struggling to find the right doctor to help you. I wanted to make it a little bit easier to help match you with the RIGHT doctor for your specific needs and situation. Even in the Functional Neurology and Functional Medicine world, not all doctors treat all symptoms, and each of them specializes in their own unique program.

Dr. Steadman and I have teamed together to bring you a virtual “match maker” so to speak! By filling out a google form with your symptoms, date of injury, and who you have already worked with, we will be better served to help match you to a doctor who serves your specific needs, and we will do our best to find one closest to you — but do keep in mind that there aren’t many of them, and you may have to travel a little ways — so please do keep an open mind.

After filling out the form, you will hear from Integrated Brain Center’s amazing staff … they will set up a 15 minute call with you and either Dr Steadman or Dr Maynard who will go through your form and ask more questions before recommending a specific doctor (or two) for you to consider.

Due to the amount of time we are putting into to helping you, we ask that you please only fill out the form if you are truly serious about working with a doctor who specializes in helping TBI patients — knowing that most of them are going to be out of network for insurance companies. It will be up to you to check with your insurance company and see if they will reimburse for any of your treatment (many insurance companies cover approx. half the cost).

If you’re ready to take action, fill out this form: https://forms.gle/197P1VzMYVL1NFxT6

Please allow a few days for Integrated Brain Centers to reach out to schedule your phone call … they are a busy clinic and we are trying to help as many individuals as we possibly can!

Watch the video above for more information, and drop a comment below if you have any questions we may have missed!