For those few people in the world that have read this blog all along or those just joining, in case you didn’t know, I have Parkinson’s disease and it sucks. Horribly. At the same time, I am still me. The same guy I’ve always been. No matter the “Me” everyone else knows in all my linearly lived walks of life. There is only one person that knows that me, Christi or, as I dubbed her “Georgia Girl”. Her hiking name. She has been with me since day one.
Day one of Parkinson’s Disease. I was diagnosed on June 4th in 2021. In the middle of a thru-hike of the Appalachian Trial (AT). She was also with me much earlier as an uncertain high school kid who just wanted to skip school, hang out and read books. What a weirdo. That diagnosis date is my new birth date. After the number of different Parkinson’s drugs we tried and their horrible psychological and physical side effects and the suffering from having a fast progression type of Parkinson’s I went through, I have to stop comparing my new “me” to the old “me”. I am gone but through Him, I am back.
Although I have had Parkinson’s for longer than that diagnoses date, at that time I was still very much a healthy, recently retired mid-50s guy just trying to figure out how I was going to burn up the next 30 years or so. I had always planned to “adventure” when I retired. Meaning, hike, travel to hike more etc. Boring? Not to me. I have no idea why. We spend all day tired, hot, thirsty and ready to be finished. We wake up and repeat. A long way from that over-worked, techno genius, IT leader with Global responsibilities that affected stock price and the temptation to continue to pursue. I have come far as Yoda would say.
I knew something more than my normal heart or spine issues was wrong several years before I retired but nothing seriously disabling to worry about how it would impact me longer term. While on my thru-hike of the AT in 2021, I did progress from the benign pro-dromal symptoms of pre-diagnosis Parkinson to full Parkinson’s from Springer Mountain on February 1st 2021 until I left the trail in June to go to the VA’s movement disorders clinic in Nashville, staffed by Vanderbilt specialists.
By the time I left for that fateful doctors visit, I had already started having dopamine depletion issues, syncope events and increasing FOG. “Freezing of Gait” (FOG) is one of the strangest Parkinson’s symptoms. It has nothing to do with temperature, LOL, but an inability to “take a step, reach for something” while you are in the middle of trying to do it. Your brain will literally fail to signal your body to take the next step. I mean during the transition from stepping down, rolling from hill to toe and pushing off again, it stops at the toe and no forward movement happens. You come to a complete halt like you are frozen to the ground. For me, I also have a momentary “spasm” in thinking everything slows down including my thinking. Slow thinking as a symptom is called bradyphrenia. To me it is a stutter in the dopamine messaging process. And really freaking weird.
Fast forward 4 years, and boy life has sure taken a path I didn’t anticipate. Not a bad one, even with Parkinson’s, but a damn good one. Weird to have that outlook after whining about PD the last couple years, having 7 more surgeries (3 brain, two device chest insertions, two cataract lens replacements with anesthesia, a hernia repair with mesh) for a life total of ~37 surgeries with anesthesia including 16 heart surgeries (Quadruple bypass in 2010, Atherectomy 2017 and heart catheterizations from 24 years old till 2017 at least every other year) and failing on at least 6 more thru hike attempts. For all that, I can’t help but remain happy. More than I deserve, more than I need and evidently, I may survive long enough to learn to appreciate what I have.
Do I over-share? Who cares. My life but maybe my story may inspire, may change or just may help someone else. If nothing else, you will find out more about me and Him. Yes, Him, God the Father, Jesus, our Savior and Him who carries me and has carried me all along. No, this isn’t gonna be a sermon. Those don’t work. We need to see human struggle, feel the loss of loved ones, have our family ripped apart, and sometimes be brought almost to the brink of death and then can we catch a glimpse of how frail we really are and how despicable our own behaviors can be and how much we need Him.
I do credit a life-long “calling” to my current Happiness. Happiness comes with real Love. Love can only be found in Faith in Him and a loving partner to share with. He doesn’t’ create our struggles, we do with our own decisions, the decisions of others we allow to impact us and sometimes just the random events of life. He allows our struggles because of the Gift of free will. We have the free-will to choose but that does not come with a promise in this life but in the eternal life He promises. I just pray my words act as a testimony to that faith and my path. If sometimes you see my human failings, my pride seep through, I ask for forgiveness, not from you but from Him.
So, where are we, Georgia Girl and I and what are we doing. Sitting at Unicoi State Park in North Georgia just chilling. We have our house on the market again. We are basically living out of our RV. No todo list, no pressures, nothing in our way unless we allow it.
Our most recent attempt to go Southbound (SOBO) on the Appalachian Trail was a bust. One day in, we both realized I can’t do it. At least not the way we’ve tried. We decided to stop before we regretted it. Are we done? Probably but maybe not. LOL. For some odd reason, all I want to do is thru-hike. My whole life that trail has been my escape. I’ve hiked since 1974. All the damn time. Three thru hikes and I planned to keep going. Maybe I still will.
Can I physically do it? Probably not in the true definition of a thru-hike but maybe on my own terms. A little electronic help (am I an unassisted hiker if I depend on my brain implant? Hmmm ATC? Not that I care about the Appalachian Trail Conference (ATC) opinion, after all I am a 2020 Outlaw). Not in a calendar year, another ATC definition, maybe. But how could I do it?
Currently, a 6-8 mile walk (or 4 this week) depletes my dopamine to the point that one day of hiking equals four days of rest. Not fun and not worth it. Can I increase the On days? Probably. If you are reading thinking, this guy is crazy and needs to stop, listen? I think what I am experiencing is a condition a lot of people think is normal and that is a lack of fitness. LOL. Literally, since little league sports I do not think I have been in this bad of a fitness state. Comparing how I feel with most of my age group, sorry age peers, it sounds like I am one of them. I guess I am but do believe I can fix it. Just like they could if they wanted.
We are starting a new approach called, “getting into shape”. That means we are going to slow down, rest, take a zero day, rest some more. One or two miles a day for another week. Then push it up slowly. Take into consideration my heart (still strong but mostly artificial) and dopamine usage (natural not meds) and try to get back into shape. I believe I should be able to walk 8-12 miles a day if I am adequately prepared.
If my norm without depleting is 1-2 miles, can fitness improve dopamine use as it can oxygenation of muscles for energy and endurance? That is the question. I might not be able to do a 34 miles day like Hawk but 8-12 miles a day is 220 days, that leaves 145 zero days to finish in a year.
Is that our Goal? Who knows. I want to with all my being. I love the act of thru-hiking, most of the people and myself when the pressures of life aren’t on me. It will have to be about 90 % slack packing. My spine does not like camping any longer. Parkinson’s pulling on a titanium spine really doesn’t like camping, hammock or on the ground.
What if I can’t do it? Who cares. If you don’t try how will you know. If I don’t’ try I will know. Does He care? No, He doesn’t. He cares about my eternal life and how I conduct myself. May my walk honor Him in my own actions and behaviors and inspire some of you to find Him and inspire other’s with what society calls a disability to start living again. I’ll find something else to do or keep failing thru-hiking as long as I don’t fail Him or Georgia Girl.
Keep following us. We plan to do a whole new social media structure to share our journey a little more orderly with great (I’m sure of it) YouTube content. I will keep blogging. Always liked to write, the typing is good for my hand coordination and it allows for a more in-depth look than the social media attention span.
If you are on our Facebook group “Adventuring With Parkinsons”, we will be creating a new page linked to a new account to keep it clean. We will maintain our own personal Instagram/FB accounts for friends but the inspiring (always the optimist) parts will be the public stuff.
I plan to share the good, the bad and the ugly. A favorite movie. You will see me at my best and my worst. Don’t mourn for me at my worst. It is my choice, pain is proof of life and I’ve struggled far more in the past than I ever will in the future so I can take it. Remember that for those of you that hate suffering, He suffered for us all, I am not worthy to even touch His cloak, I can suffer because He comforts me, Want that comfort? Find Him.
Hike On!
Longterm and Georgia Girl
Eddie and Christi Gulley
Some future topics:
- My “let’s try all the Parkinson’s drugs” phase of PD. The word is “Mania”
- My journey to becoming a cyborg and why this and AI don’t scare me as a Computer Genius (LOL)
- Could I be Aubrey de Grey’s first person to live forever? I believe he thinks that person is already alive and being treated with technology that can extend life to the point a cure for aging is in place as a system of therapies. Hmmm
- My charmed career and how organizationally subordinate people made me successful. It really is about team work, value, hard work and treating others as you would want to be treated. I miss the teams I’ve been honored to be part of.
- How I made $180 Million and lost it four days later. True story and another sign for me of His grace.
- Where I see Parkinson’s treatments and possibly a cure in the future?
- How I died three times but remain to bug the hell out of all of ya’ll.
- How people can think they are good but can’t stop treating others like Shit (Connie and Odie this should be required reading). I pray for them both every day even though as a Person their actions anger me to no end.
- Why I believe Statins did more damage to my brain than the chemicals that cause my Parkinsons.
- Why I Hate War even though I am a warrior and you should be too. Stop investing our young men for foreign policy. I am still a thinker and my opinion counts.
- Why should every successful person stop their careers and seek real life.
- Retirement fears of not enough wealth.
- Now that transhumanism is here, what cyber risks exist and how will we tackle them as individuals without corporate infrastructure. Anyone in the Penetration Testing world want to lead? I’ll volunteer my “wet” infrastructure. John Strand? Andy Laman? Bueller… Bueller?
I am also available for corporate and organizational motivational speaking. Done much in the past, have more story now, would enjoy sharing.
Remember, Malicious Parent Syndrome is real. It only hurts the child. One day, I pray my own daughter understands life well enough to understand what happened and will allow me to support her as only a father can. Lies are exposed in the Light.
Praise God in the Highest
Testing