Interview by Dr. George Ackerman, founder of "Together for Sharon"

James Shull: Nomadic Parkinson’s Combatant

An interview with James Shull: Nomadic Parkinson’s Combatant

Together for Sharon is an advocacy organization founded by Dr. George Ackerman. He has built an impressive platform of awareness and advocacy for Parkinson’s Disease. He is a hyper-vigilant voice for Parkinson’s advocacy, and has conducted thousands of interviews worldwide in pursuit of this goal. He brings much to light. Thank you, Dr. Ackerman, for the opportunity and platform to bring more awareness to the Dispatches!

Biography

James carved a rare path of diverse experiences in two different military services with a career in military aviation prior to his Parkinson’s diagnosis and subsequent personal advocacy via the Nomadic Parkinson’s Dispatch.

Between these years, a few of James’s career highlights include serving as an Abrams tank crew member, teaching as an instructor for the U.S. Army Aviation survival school, and deploying overseas as an OH-58D Kiowa Warrior scout helicopter pilot-in-command. His academic studies include a B.A. in Aeronautical Science from the State University of New York.

In the U.S. Coast Guard, James flew as an MH-65C Dolphin helicopter aircraft commander and gravitated to some of the most leading-edge defense missions of the service. He successfully executed air-to-air intercepts of aerial intruders over Washington DC’s sensitive airspace, and moved quickly beyond that to become the team leader of Air Station San Francisco’s exclusive airborne use of force team. Later transitioning into other managerial/leadership roles after 16 years in military aviation, James led analysts and other specialists on both the East and West Coast. He retired as a Lieutenant Commander in 2019.

In the aftermath of a 22-year military career and a life-changing diagnosis that halted his subsequent line-pilot status at an airline, James took it as a signal to once again reinvent, adapt, and find a way to make a positive mark.

James spends his time as a “slow traveler” living in different countries, exercising vigorously every day, eating healthfully, and writing The Nomadic Parkinson’s Dispatch in order to inspire other independent and capable Parkinson’s combatants to keep traveling, learning, creating, and living a life of adventure and self-mastery.

Please tell me a little about your background.

I grew up in Central California in a town called Lodi, popularized by the Creedence Clearwater Revival song “Stuck in Lodi”. As you may know, the agrarian Central California central valley is now considered a hotspot for Parkinson’s disease, likely due to the many chemical agents like Paraquat and the like used throughout the area over the years.

Prior to my military career, I studied commercial photography and fine art photography in college and throughout my youth very heavily, which set the stage for a life (nearly 40 years now) of pursuing photographs everywhere I go. This has been a persistent underlying motivation for me and is reflected in my social media presence and even in The Nomadic Parkinson’s Dispatch. My artwork is on display at a gallery that represents me in Norfolk, Virginia named “Calvin and Lloyd”.

Can you tell me more about your Advocacy?

I feel that a lot of Parkinson’s “combatants” (as I call them) frequently tend to contract (as opposed to expand) and become insular like I did in the immediate aftermath of the diagnosis. With an adjustment of perspective, it can be a rebirth to discovery, discipline, self-mastery, and even healthier lifestyle IF you decide to make the conscientious paradigm shift in your mindset. That’s what my newsletter addresses, which is tag-lined as “A Wayfinder’s Journal on Resilience, Travel, and Creativity After Diagnosis.”

What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?

My passion now is doing everything that I can to “Hold back the Leviathan” as I call it. All of us Parkinson’s combatants have this lurking leviathan on our heels, attempting to erode our basic physical capability and even our thoughts. But there is good news and viable evidence that we can delay and hold the leviathan back if we aggressively optimize our exercise and diet.

I eagerly await the different emergent medical technologies, especially what’s happening with stem cell research and testing. However, we have to live right now, accept our challenges with grace and courage, and accept the new life that we now have. That’s the space that I dwell in and talk about, and that’s why I talk about travel, creativity, and especially optimizing your health without making it complicated.

What type of goals do individuals with Parkinson’s have when seeing your Advocacy?

I have to assume that most Parkinson’s combatants have the goals of slowing their disease, optimizing the movement and non-movement functionality they have left, as well as a strong desire to still lay claim to the things in their life that make life worthwhile for them. For me it has long been my creative pursuits, learning, being outdoors, travel and adventure. Optimizing one’s health typically prolongs all of these things for those of us with the disease, so that’s why it’s a heavy focus for my dispatches.

What type of training and how long are the programs?

I simply make sure that I have daily access to gym workout classes- wherever I go. They are vigorous and athletic and I go every day of the week except the weekend, because your body needs the rest to rebuild. It’s a simple and duplicable recipe to go to the different kinds of workout classes, a mix of weightlifting and aggressive cardio on different days. JUST KEEP GOING! This has been absolutely integral in my newfound health, and I believe the slow progression that I am experiencing. Sometimes I simply show up for the “participation prize” to just go through the motions, but inevitably I find that kernel of motivation after being there for 20 minutes and get ambitious again. But you have to make it your daily main event… and keep showing up! THIS is what makes EVERYTHING else possible, it is the crux of prolonging and maintaining a life of movement, adventure, and choices. So that’s why I keep it as the core of my day, the axis of my routine, and a focal point of my advocacy.

What effect can your Advocacy have on an individual with Parkinson’s?

My advocacy is simply a “waypoint journal” of what worked for me. I take no prescriptive liberties in assuming I know what others should do. Listening to your Motion Disorder Specialist is the most critical thing. I simply amplify through my personal experience that aggressive fitness, not compromising sleep, using biometrics, eating healthy foods, and holding fast to the things in your life that make you feel alive will likely slow down your progression and make you feel better physically and mentally along the way.

If they actually do what I did, they might have similar results as me…. they might lose >35 lbs of excess weight and drastically improve their cardiovascular fitness- as I did. They might bring their blood pressure down from unacceptably high levels down to 107/66- as I did. They might reduce the pain in their knees now that they’re not carrying around the excess weight with every step- as I did. They might slow down their disease progression- my UPDR was last judged as 0/0. They might sleep through the night as I generally do now. Everything is connected to everything, as far as your mind and body are concerned, so I don’t compromise on anything when it comes to my exercise and food quality anymore.

What would you like to see as a future goal for your Advocacy?

I would simply like to inspire fellow Parkinson’s combatants to up-the-ante when it comes to their level of exercise which quite literally makes everything else possible for longer. This is the central theme to my newsletter (which is not hidden behind a paywall), and why I’m focusing heavily on “The Nomadic Parkinson’s Dispatch” right now.

What events do you participate in?

Frankly, my dispatches are my first real contribution to the Parkinson’s community. I found out about my diagnosis in the middle of 2020, during that time everyone was masking up and being insular due to Covid, so there weren’t many group meet ups going on except on-line. I went to a few, but I was still finding my way. My event participation is sparse and dependent upon where I’m living at the time. In the future I would consider speaking engagements, either virtual or in person, meetup groups, and other advocacy events.

How does this also assist the caregivers?

Caregivers, especially familial caregivers, have to accept a certain degree of paradigm shift to the thinking, actions, and routines of the PD combatant that they care for/about. This can certainly be disruptive, and frankly not all caregivers are up for the disruption. Perhaps most critically, simply understanding that your loved one with PD is now faced with what may be a drastic reinvention of perception toward their actions, life, mobility, goals, fitness, eating, and career…. And if you can remain unified in this, changing your life trajectory in parallel, then you will continue to be a shelter in the storm. The Nomadic Parkinson’s Dispatch will help calibrate a familial caregiver’s alignment to their loved ones new PD trajectory.

How can someone get in touch? What is your website?

Substack is my primary venue. On Instagram:

https://www.instagram.com/jamesshull_lightwalk/

How can others also become advocates for awareness?

If you are a PD combatant, there is no better advocacy that you can display than embracing a new lifestyle to optimize and improve your fitness profile. Show fellow combatants and non-combatants alike how you are holding back the leviathan! You may inspire them to improve their life as well! The simple social motivation of them seeing you before and after your reinvention can be a powerful thing. Your fight may inspire them too!

In your opinion, what is the key to effective advocacy?

I believe any awareness message these days needs to be packaged into something interesting besides just “Parkinson’s awareness”. A true-life story that makes things personal, a human-interest story that people can relate to, examples of how someone beat the odds and accomplished something worthwhile despite the specter of Parkinson’s staring over their shoulder. Package your Parkinson’s advocacy around unique stories or events that capture the interest of the typical screen-scroller….

How can we better fund-raise to support a cure for Parkinson’s?

The Michael J Fox Foundation is already the most efficient vehicle around when it comes to turning financial contributions into solid science-backed research and development. It’s where my monthly contribution goes. If and when my Nomadic Parkinson’s Dispatches generate any kind of financial net return, I will gleefully push 10% to the MJFF. I am looking forward to doing that. That is what I can do.

Fundraising needs to be a global effort, because it is a global problem. The inroads that have been made via social media, articles, ads, interviews, books by Michael J Fox, documentaries, TV commercials, kiosks at social events…. Have all been good, we just need more… GLOBALLY. I’d like to think I can chip away at that international perspective with the Dispatches.

What other activities do you undertake to help improve and support your daily living (e.g. exercise and alternative remedies)?

I used (and continue to use) the application Noom to monitor and drastically improve my relationship with food, which made a profound difference in my weight management. I went from 195 lbs to <159 lbs in 10 months. Not trying to do this in a few months but by changing my habits and my lifestyle made it stick, so I have maintained my fat and lean mass percentages in the optimum zones for a man my size.

I also use a Whoop strap (and its corresponding application) in order to monitor and manage my fitness and sleeping patterns according to the bio-metrics that it provides. This has been yet another game changer in my health optimization by helping me identify sleep, exercise, and other lifestyle influences that are both good and bad patterns. I have written in greater depth on the benefits of this bio-metric tool and how it helped me make better choices and eliminate some of the glaring negative behaviors in my life, as well as help me polish up some of the more nuanced positive behaviors that I have built over the last few years.

I swear by gym memberships that they have access to aggressive workout classes. I go to these 4 days per week. High Intensity Interval Training (HIIT) on Monday and Friday, “Bodypump” weightlifting on Tuesday and Thursday, and I do wind sprints individually on the treadmill on Wednesday which is when I push my heartrate to zones 4 and 5 (greater than 80%) in intervals. This, coupled with an average daily walking distance of 7000-12000 steps, has been a great mix for me and keeps me pushing to an aggressive but responsible level of exertion every day except weekends, which is when I intentionally let my body rebuild. I would also be remiss if I didn’t give a shout out to the BEST exercise class experience I have ever had…. “Regymen” coached classes at the YMCA. It’s an amazing, well thought out, aggressive HIIT and weightlifting extravaganza packed into a 1 hour class at some YMCAs. Loved it! Wish it was everywhere!

I drink a protein shake mixed with psyllium husk powder and milled flax seeds every morning (this prevents the Parkinson’s constipation issue), and keep a sharp awareness of my caloric composition intake throughout the rest of the day, again using Noom.

In getting back to my optimum weight (I literally didn’t have this body since college, I’m more capable now than when I finished basic training at Ft. Knox!) it seemed like 70% of the improvement came from my eating/consumption oversight, and 30% came from my daily workout adherence at the gym. In my experience, you can’t gym your way out of a destructive eating lifestyle, and you can’t diet your way out of a destructive sedentary lifestyle. Embrace both! And besides, increasing your calorie burn every day at the gym increases your caloric allowance! Which is good, because I am a foodie, I love to eat.

The recipe above, I believe, has held back the leviathan. It may not work for everyone, but I decided to put the odds in my favor when it came to my prognosis. Everything is connected to everything, and this has given my cellular structure, my neurons, and my cardiovascular system the tools to fight back and regenerate the best that they can. Exercise builds new mitochondria, so I’m told, so I have chosen to eliminate the all the barriers that I possibly can from the equation. We fight this fight every day, face it, don’t deny your daily fight. Make it your life now, because that’s what it is.

Why should people who don’t have Parkinson’s care about this?

The more we know about repairing or halting the advance of Parkinson’s the better it is for MANY medical/neurological solutions that are emergent throughout the world. Crossover methods and techniques will likely arise from the capabilities we discover and develop. Traumatic brain injuries, Alzheimer’s, strokes, movement disorders of many types, are but a few examples. Parkinson’s just happens to be a high-demand gateway for many possible therapies, cures, or treatments. Sooner or later, one of these “other” things WILL affect you or someone you love. It requires genuine leadership and is worthy of a globally funded and unified effort.

Have you had any family members or relatives affected by Parkinson’s disease?

Yes, one of my great grandfathers had it. He personally handled a plethora of insecticides, herbicides, and fertilizers throughout his life on his turkey ranch and farm. It’s not at all mysterious what triggered it for him.

If you had one song that would tell us more about you or represent your life, which song would it be?

Crosby, Stills, and Nash. Wasted on the Way

“…and there’s so much time to make up everywhere you turn. Time, we have wasted on the way…”

If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?

The legacy that you thought you would leave has just been redefined for you. Whatever it was before has been indelibly altered, and your new legacy… a profile of aggressive courage, adaptation, and resilience is all on the table for you to claim. You will work through the stinging stages of grief- certainly, but once you reach acceptance and lay claim to your mission, your new legacy of courage, adaptation, and resilience will become a source of light for the lives you touched. So, embrace this! Don’t waste any more time! And start holding back the leviathan, every day….

Here are some worthwhile links to Dr. Ackerman’s books and resources:

A Son’s Journey from Parkinson’s Disease Caregiver to Advocate, is now available at: https://www.togetherforsharon.com/product/a-sons-journey-from-parkinsons-disease-caretaker-to-advocate/

Dr. Ackerman has also released additional books for awareness:
Voices of Resilience: Conversations with Parkinson’s Disease Warriors, Caregivers, and Advocates, An Empty Seat at the Table, Parkinson’s Disease and the Law: Rights, Policies and Protections, Policing and Parkinson’s Disease: Encounters, Training and the Need for Awareness and Sports & Slowing the Progression PD: Collection of Personal Stories & Research

Books available at: https://togetherforsharon.com/shop/

Together for Sharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure.

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