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Living with Four Brain Tumors

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  Published on January 1st, 2019
  Reading time: 6 minutes
  Last modified December 14th, 2022

It’s March 2010 and I’m sitting alone in the urgent care office, yet again. This had become routine at this point after the prior year and a half, so I didn’t think twice about this visit being any different as I waited for my MRI results.

I was 21 years old when I was also told I would probably never ride BMX again just as I was coming off a great breakout pro season riding X-Games and acquiring my first contest win. This was also the time where my life was almost stripped away from me after manifesting my dreams as a pro BMX athlete and world traveler.

I was living my dream training with my childhood hero, Dave Mirra. Little did I know my dreams, along with my life, were about to be taken from me.

After over a year of complaining of headaches, visiting ERs and urgent cares, vision loss, and vomiting several times I was always denied scans. I was always told, “You’re healthy and just have headaches. It’s normal. Take these pills and let us know if you need more.” So when I found myself in another urgent care, for something that wasn’t even about these symptoms, the last thing I expected was bad news. Young, alone and at the peak of my athletic career, I was diagnosed with a massive brain tumor occupying half my skull.

The tumor was going to kill me if I didn’t have it surgically removed. My surgeon guessed I had another month before I just didn’t wake up one day. So, I was rushed into Dr. Allan Friedman’s schedule at Duke University and had the tumor removed during a 6-hr open cranial surgery. 

Despite my ignorant belief that I would never ride again, or that it would be a long, arduous rehabilitation process, I was back on my bike and riding 5 weeks later! I found myself competing again an additional 7 weeks after that, placing 8th in my first contest back out in England.

This was a huge turning point in regards to my perspective on life, which I don’t think would have occurred had I not been told “Josh, you are going to die…” I believe this experience was necessary for me and where I was in my life. However, I don’t think everyone needs such a catastrophic wake up call to gain perspective and make changes in their lives. I believe that people are aware of the changes they need to make, but lack the proper motivation or purpose to make these changes. My story has formed my core belief of every human being has the same choice in life and that’s choosing our perspective, which no one can take from us. It also goes hand in hand with another one of my beliefs; there are no excuses, only choices.

This experience led me to auditing who I was and my choices over the next few years and I found my way into nutrition and holistic health. This quest to progress every aspect of who I was also cultivated a passion to protect my brain and prevent any tumors from coming back. I embraced whole foods and higher quality nourishment, but I was still in the dark on what fat does to your brain. Unfortunately, there was a second brain tumor diagnosis in 2012 and utilizing Gamma Knife Radiotherapy, doctors were able to shrink the tumors and halt growth. Along this journey, I found Dr. David Perlmutter’s book “Grain Brain” that changed me forever. Dr. Perlmutter is responsible for empowering me with the tools to adopt a high-fat / low-carb diet in order to protect and optimize my brain, my health and performance in the best way possible and I can’t thank him enough.

At this point I had made a lot of changes and cut a lot of things out of my diet but Grain Brain gave me the awareness of areas I could capitalize on improving, and I executed them wholeheartedly! It wasn’t until 2017 where I would receive a third brain tumor diagnosis and be told I had a genetic disorder predisposing me to benign tumor growth that I thought back to learning about inflammation and epigenetics. This diagnosis didn’t bring upon the same victim mentality as the previous two diagnoses. It simply redirected my focus to fostering a proactive mindset and learning more about this thing called “KETO”.

I began immersing myself in the ketogenic diet and repeatedly came across how ketones can help damaged brains when they become glucose impaired, have anti-inflammatory affects, and act like epigenetic switches. While most use it as a highly effective weight loss tool, my interest was in the amazing things it can do for the functionality of your brain. At my basic level of understanding, I knew I had experienced TBI’s (traumatic brain injuries), brain surgery and treatments, and a genetic disorder they suspect I have, were all contributing to my brain’s suffering.

Even with the copious amounts of glucose I put into my system, my brain was inflamed and energetically inefficient. Even though I was low-carb (under 150g total carbs a day) for about 4 years leading up to the 3rd diagnosis in February of 2017, I didn’t transition to fully ketogenic until then. I wish I had my KetoMojo back when I used glucose as my primary fuel source because it would be very interesting to see what my blood glucose levels were at on a regular basis.

I remembered Dr. Perlmutter had a bit of info in Grain Brain about a keto diet, but no more than 2 pages. I found myself being introduced to the work of Dave Asprey and Mark Sisson, who were both huge advocates of the ketogenic diet. I soaked up their work the best I could, applied it, and connected with more and more people in the science based keto field. I am fortunate enough to have connected with Mr. Asprey and Dr. Perlmutter in 2017 and now have become connected with Dr. Ryan Lowery, the KetogenicCom team, and many more supportive people I continuously and enthusiastically learn from. Not just in the ketogenic space, but also in business and personal growth and development. I am grateful that I was directed to the Ketogenic Bible and took initiative to reach out to Dr. Lowery. I can’t tell you how excited I was when he actually responded.

I mentioned my huge shift in perspective after the first brain tumor diagnosis. Well, the third brain tumor diagnosis gave me another wake up call. This time it was shifting my focus from “self” to “purpose.” I decided it was time to take a step away from competition after 14 incredible years and dedicate my life to sharing the information and benefits of a ketogenic diet as a tool, strategy, and lifestyle. I find myself still riding BMX today, speaking to share my story, and coaching others with a ketogenic diet/lifestyle approach as a way to take back their health and empower them to become the healthiest, happiest, and most successful versions of themselves they possibly can be.

My journey with a ketogenic lifestyle is not about diet or fitness. It’s about perspective and prioritizing my brain, my life, all I have experienced, and all I have learned. I strive to become the best version of myself in order to serve and support those around the world that I may be able to influence a shift in perspective to inspire new action in their lives.

My Three Biggest Learning Lessons from this Journey are as Follows:

  1. Life begins with perspective and progresses with gratitude.
  2. Health is internal.
  3. Our reality is all a manifestation of our choices. Choices surrounding our perspective and our actions.

I encourage all of your to not only shift your ways of eating and moving your body, but to take note of where you mind goes, the way you talk to yourself and others, and the stories you tell yourself that become strong beliefs as we age. We can either write and live an incredible journey we shape for our lives or we can pick a well-known path shaped by fear that is disguised as practicality or normalcy.

Fear is just a thought and thoughts can be changed. – Josh Perry

Josh Perry is a former professional BMX athlete, motivational speaker, and certified holistic health coach that's fighting 4 brain tumors. His strong motivation for living his best and healthiest life stems from a brain tumor diagnosis & surgery in 2010 followed by 2 additional diagnoses. After overcoming the surgeries & treatments, and realizing he most likely has a genetic predisposition to accumulating tumors, he immersed himself in research on how to enhance the health, performance, and longevity of his brain. Since choosing to change his life and follow a ketogenic diet & lifestyle, the growth of the tumors have stopped and he feels better and more fulfilled than he has ever before. Today, Josh has left competing to start his health coaching business as a way of exploring his passion for helping others improve their brain health and become the most successful versions of themselves. Josh also teamed up with the Athlete Recovery Fund to start raising awareness and funds for a non-proft BMX/wellness event focused on raising direct funding for direct patient care through education, sport, and faith called the Brainy BMX Stunt Shows.

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