Yes, I am alive and well. Hiking, retired and ready to start sharing again.
I am L0ngterm. I was diagnosed with Parkinson’s Disease (PD) in June of 2020. Right in the middle of a thru-hike of the Appalachian Trail. I say “a” because it is not my first walk.
I knew I had PD for several years. I woke up from yet another heart surgery (18 including bypasses, catheterizations, stents, yada, yada, yada) in 2017 and knew something different was wrong. I continued on, something had changed about life but I couldn’t put my finger on it. I was still me but something had shifted in the Matrix.
I tried to retire from work a year early in 2019. Financially we were ready because I had planned to retire at 55 my whole life. Some in my life were too selfish to let me get away from the stress of running companies at the expense of my own health; family, friends and bosses, they all ask me to give more than I could or wanted to. Not theirs to ask of me. But Hey, I’m Superman so why shouldn’t they expect it of me? Because I get to make some decisions in my life for ME.
I kicked around for a year, took a ton of vacation, hiked my ass off and whatever was going on got worse. Finally in early 2020, I said I had enough and retired effective March 1, 2020. Never looked back. Early retirement is all I ever dreamed it would be. Try it.
PD has no definitive diagnosis until autopsy, that’s one medical test I’m willing to put off a while. You get diagnosed after several years of stress that you are going crazy because those around you think it is in your head. Doctors tell you it is in your head and you need to decrease your stress. If you know you, you know you. No one else does.
Luckily, I progressed enough (lucky to get worse just to get help? Really?) that a new Doctor at the VA (by the way, the VA is great in Nashville!) diagnosed me quickly. What a relief. Or, is it?
The meds for PD, primarily levodopa, act to replace or enhance your brain’s natural dopamine or at least act as the organic precursor to your own body producing dopamine. Much like diabetes, our bodies do not produce enough of what we need to function. Unlike diabetes, we can’t measure our level of dopamine, the meds take an hour to “kick in” and for a lot of us, that hour is one of pain, discomfort, fatigue, weird symptoms and can last longer than an hour or fail altogether. When it fails, all you can do is wait till your next dose (three hours for me) and hope the next one kicks in.
Enough with what Parkinson’s is, this is about me.
I am alive and well much to some other’s chagrin. I have always taken what life has thrown at me, stood up and overcome. When I had a quadruple bypass at 45, I went backpacking on the AT a month later. Crazy? Maybe. For me it was the best way to prove to myself I was still me.
When I had C3-C7 laminoplasty spinal surgery two years ago in 2020, I fell climbing Mt Katahdin 6 weeks later because I was still weak. The problem isn’t that I fell its’ that I didn’t get back up and keep climbing. Or, the problem is that I thought I should even be attempting to climb Mt Katahdin 6 weeks after major spinal surgery. I’m not Superman, quit trying to act like it.
I’ve been struggling with Parkinson’s Disease much longer than even I thought. I can tell now that a lot of the back pain I’ve had over years was in fact a neurological problem called Dystonia. This is where certain muscles in your body have a faulty signalling and contract in a painful, unrelenting fashion. That pulling can pull spines out of alignment, permanently bend bonds in your foot, cause chronic soft tissue damage from micro-fiber tears in areas such as your rotator cuff hence frozen shoulder could in fact be an early symptom of PD, or not. Only the successful relief from Levodopa will tell if its PD or just an old injury.
I am not going to win this time, you can’t win with PD. But you can trick that sucker and let him walk alongside you. I am the walking man and I will keep walking until my last breath. I am not Superman no matter how I’ve tried to act. I must slow down, learn patience and most of all accept that L0ngterm thru-hiking the AT at a pace of 8 miles a day instead of 20 and maybe, just maybe take 2 or 3 years to finish my next one instead of one season may be the right way to do it and not piss off my friend, Mr Parkie.
Don’t feel sorry for me, envy me for He has given me the strength to stand up and walk. He may be carrying me but my feet are on the ground and I am me again. I have successfully come through the 1st year of Parkinson’s Disease which as I have learned may be the worst year of PD. After that, even though it is progressive and degenerative, you at least know what it is and know what the worse for now is. From there it is all just incremental. Not a cliff.
I can handle incremental, slow change. Isn’t that just aging? PD is more than aging, but I think I’ll just assume PD is a manifestation of everything that is wrong with me conveniently wrapped into a tidy package called my daily burden.
That daily burden is 19 hours of wake time, separated by 6, 3 hours incremental doses of Levodopa. Taking your meds, waiting 45 minutes for it to kick in via a process that I call the “Wave”. This wave feels like the Levedopa enters my brain, and spreads from the middle of my brain in a slowly expanding, slightly warm rush of central nervous system stimulation. Hopefully that doesn’t sound pleasant because it isn’t.
After about 15 minutes, the wave fills my brain and poof a light switch is flipped, and I am “On”. On is when our dose of levodopa is currently relieving our symptoms. Sometimes it kicks in very well and we feel almost normal.
That almost normal feels so good, it is almost as if we don’t have PD. If you get too many of these in a row or too many days in a row, you may start wondering if you were misdiagnosed. The answer is no, you should feel lucky because at some point in the next week that great On response to Levodopa will turn into a failed dose altogether or a couple days of less than good response.
Don’t look at me and think, “Poor guy”. I don’t feel that way. I am dealing with what I have in front of me today but trust me it is in eager anticipation to the good days that I know always return. Ever the optimist, I have always been. No other choice. I’m glad to be alive.
What is the opposite of “On”? well “Off” of course. In PD, Off is a no, no. At all costs, healthcare should assume Off is bad, throw tons of dollars at finding drugs that reduce or eliminate Off time. That isn’t going to happen. Drugs come with side effects. Side effects or as I start to call them, unintended symptoms.
Just remember, I am still here! It may not be about you now. I have no choice. You do! Don’t let it be one of regret, I have none. I sought happiness so I walk. I found contentment, that is more than I expected. Everything isn’t great in life, yours or mine but I wake up every single day and KNOW I will try to treat each person I encounter like I expect to be treated. Im still shocked how people can treat others. I will not behave like them. I will remove them from my life.
Want to know a little more about PD? Here are a couple of links to get you started. Not from a disease perspective but from a experience perspective.
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Remember, “Malignant Parent Syndrome” is real. If you know someone whose parent is lying to them about their other parent, you have a responsibility as a friend, family member, fiancée, boyfriend, girlfriend or whatever to make sure your friend or significant other knows that in a marriage there are always two sides. Does one side being different make the other side wrong? No, they are sides of the same coin. Likewise if the child, especially if they are an adult, “picks a parent” to side with, you have an obligation to speak up or you enable future mental health issues.
Leaving an unsupportive spouse is not wrong, especially if you have the only Biblical acceptable reason for divorce.
Love is love, you can’t change the definition to suit you. Always be honest with those you love or be prepared to comfort them when you can’t answer their questions as to why they let it happen to them, they didn’t you did.
Love is honesty. Lies grow in dark, Truth allows the light to shine.