MY INTRO

As I begin writing my Early Onset Parkinson’s Disease story, it still seems a bit surreal. Although I can reflect back on the early signs and symptoms that EOPD was first starting to manifest through, there’s still part of me that believes I must be writing someone else’s story. Even though I received the official Early Onset Parkinson’s Disease diagnosis from my neurologist in March of 2020, there MUST be a different story that I should be writing.

And even though I’m typing this story while my right big toe is “single-towedly” banging out the opening drum solo of Van Halen’s “Hot For Teacher” against the base of my office chair, there’s still part of me that’s in denial.  (In case you’re wondering, here’s a link to the Van Halen drum solo… and yes, it’s really about that fast!)

Because Parkinson’s is supposed to be an OLD PERSON’s disease… Right!?

But I’m only 51 years old. Sure, there was a day when I thought 50 years old was, well, old. But I’m not! I have a 6-year-old son. I still drive fast and crank my rock, old school R&B/Hip-Hop/Rap, and Prince all the way up with the windows down; albeit on the way to my colonoscopy. But still!! And I can still breakdance, show my son how to throw cartwheels and round-offs, and even use the latest technology and gadgets! (Ok, the fact that I can “still” breakdance does lean towards being on the old-ish side of life. But that’s not the point!)

The fact is, my symptoms are real – the tremors, the stiffness, the pain, the RBF stares, the erratic sleep, the apathy, and a handful of others that are very much real. The little Early Onset Parkinson’s Disease dude that decided to camp out in my brain and roast dopamine s’mores is real. This story – my story – is real. And with this site… I promise to be real with you, too!

But the Truth is… EOPD is not who I am. I may have it, but it does not have me. Another Truth is… I’m Healed in Jesus’ name. But that’s another story for another time.

For now, I want to share my story and everything contained in this website as a source of awareness, resources, and encouragement – not only to other not-so-old folks that got hit by the EOPD stick but for people who live with and (eventually) care for those of us as well.

My Early Signs

The journey – my story – that I now take you on actually has a “prequel” that I’ll share with you at the end. You see, as it turns out, most folks with PD experience non-motor symptoms (things other than visible signs like tremors) for several years before “getting the shakes” prompts them to get it checked out.

My story is no different… so, here we go!

SUMMER 2018

It was family movie night. We’re all sprawled out from one end of the sectional to the other. I’m sitting in the middle with my feet propped up on the ottoman, right ankle crossed over the left.

This is when the big toe on my right foot first channeled its inner Van Halen drummer and started beating away. It looked like it was frantically tapping out an emergency SOS via telegram… tap-tap-tiddy-tap-tap… tap-tap-tiddy-tap-tap! I flashed a disapproving stare at it. You know, that one your kids get when they’re doing something that they know they shouldn’t be doing!

And just like that… It stopped!

Huh. Well, that was weird. So I looked back up at whatever PIXAR animated flick was playing and a few seconds later that same big toe looked me straight in the eye, stuck its middle finger out at me, and began fervently dancing again as if the America’s Got Talent judges were about to punch its Golden Ticket to the Finale!

SUMMER 2019

Another tremor strikes! This time it’s at the end of the other limb on my right side – my hand. I’m on the couch again, I believe with the family watching America’s Funniest Videos. My left hand is deftly holding the popcorn bucket so it doesn’t get relocated to someone else’s lap! In between trips from the bucket to my mouth, my right hand is resting peacefully on my lap.

Well, it was anyway. And then, just like the toe danced its first dance, the hand gave its first solo handshake. Right there on my lap. Just a gentle yet swift rocking left to right – kinda like I was telling someone that something was just mediocre really fast!

As quickly as it appeared and was noticed, I quickly gave it a shake like I was shooing a fly – as if I could shake the shake off of my hand!

And it worked! …until I looked away and it started shaking again. Crap.

FALL 2019

The toe dancing has become the latest craze and now my entire right foot was getting in on the action. The hand is still shaking like it’s pounding cup after cup of 100% Columbian dark roast coffee with Red Bull chasers. And it’s doing it a little more frequently throughout the day.

Ok. So I realize this isn’t gonna just go away so I go see my doctor who asks me a series of questions – how long has it been happening, change in frequency, and if there’s a history of tremors in my family, among a few others. She said it was more than likely not my self-diagnosis of just being a little stressed and recommended I see a neurologist who could better determine if it’s something more than a pinched nerve. Something like essential tremors or… (wait for it)

Parkinson’s

Although rare, she said it can happen in younger adults but is best for a specialist to rule it out. So the referral was made and my appointment was scheduled for early January 2020.

APPOINTMENT DAY

On the morning of my appointment with the neurologist, I woke up to a Northern Michigan ice storm. There’s NO way I’m driving what normally would be a 1.5 hour trip on GOOD roads so I call to cancel and reschedule. The earliest appointment is another couple of months out – March 5, 2020.

But there’s more to the story on this day. Since the time the initial appointment was made back in the fall, the third tremor gremlin picked up a stick and started roasting another s’more… this time with my lower jaw.

It’s kinda hard to describe but it would randomly start rotating in a counter-clockwise direction, following the dancing lead of my toe, foot and hand and started doing the Cabbage Patch.

MARCH 5, 2020  |  BOMB #1

While driving to the appointment, my mind battles all kinds of thoughts; can’t believe it could be Parkinson’s, what if it isn’t and he says there’s no way to really be sure without going thru a battery of tests, MRI’s, Scans, etc. and a handful of other “what ifs” that it could be.

I arrive, get checked in, fill out a half-dozen forms, and wait for the s’mores doctor. Now back in a rather welcoming exam room, the doctor starts asking about various family history, specifically about Parkinson’s  and I answer that I’m not aware of anyone that has or may have it.

He then puts me through a number of seemingly mundane physical tests like touching my nose alternating with my right then left index fingers, tapping my thumbs with each of the fingers on each hand, and a handful of strength-like exercises like pushing against his pushes and pulling against his pulls.

I started wondering if he thought I was just drunk and was giving me a sobriety test!

After watching me walk to the end of the hallway and back, and then do a couple of trust fall-type tests to check my balance, we headed back to the cozy little exam room where he calmly and matter-of-factly explained that even though there is no known history in the family, between the direct results of the sobriety, er, strength and dexterity tests along with his indirect observances of me during and in between those tests, he was confident it’s a case of Early Onset Parkinson’s Disease.

We then proceed to talk about the condition itself and the types of and progression of symptoms. We talked about the pro’s, con’s, options, timelines, etc of available medications. After all was said and done, I decided not to begin medications at that time since the motor symptoms were not severe enough to really interfere with my daily activities let alone keep me from doing my job.

As we wrapped up he told me to just keep an eye on the tremors and be mindful of any other motor or non-motor symptoms that may pop up to start roasting dopamine s’mores and to schedule a return visit sometime within the next 6-12 months based on the type or severity of symptom progression I experience.

Boom

MARCH 6, 2020  |  BOMB #2

The next morning, I wake up, get ready for the day, and attempt doing some more in-depth research on Early Onset Parkinson’s Disease when I get the first wave of inspiration to start this website. And I jump right into it with both feet; a sturdy one and a dancing one!

That afternoon I check the mail and have a notice of something that I need to sign for. I take a quick trip to the post office and signed for a manilla envelope.

A little over two months prior to this day, my wife and I had separated and were living at separate residences. Today, I received a packet of divorce papers.

Boom2

MY HEAD IN THE SAND

I don’t share that last story for shock-and-awe or dramatic effect. I share it as just another of a handful of life events over the next 16 months that that conveniently allowed me to keep my head buried in the sands of the PD desert.

A couple of weeks after Boom 2, COVID burst onto the scene and brought with it mandates to stay at home, not being able to drive, and mask-wearing BS. Boom 3. Within a few weeks of that, Boom 4 dropped as the resultant effects on my website design and marketing business where my clients and prospects were certainly not spending money on my services so I had to find employment, hopefully as an “essential worker.”

So yeah, with everything else going on, I was able to conveniently bury my head in the sand to forget about that pesky Parkinson’s thing.

Flash forward to August 2021. The divorce had been final for a couple of months and I’m settling into the groove of being a single Dad with my “Mini-Me” as my main priority. I have a pretty good gig as the Marketing Director for a higher-end restaurant where I can order any meal off the menu any day I work.

Things are actually starting to look up. I had started working with a health and wellness coach a few months prior and as a result, I dropped 40+ pounds, lowered my blood pressure from 139/94 to 108/72, and my cholesterol dropped from 249 to 208. I’m sleeping great, have awesome amounts of energy, and…

I’m still shaking. More frequently than before. More significantly than before.

So I have a personal come to Jesus meeting with myself and begin diving back into learning as much as I can about this whole Early Onset PD thing. I schedule that “6-month return visit” to my neurologist, finally, and then jump back into working on this website as I start to document “My Story!”

WINTER 2022

Welp. You guessed it. Still shakin’. I’m REALLY starting to think that this PD thing is just not going to go away! (Yes, if you haven’t yet picked up on it, I speak sarcasm fluently as a 2nd language!)

Since the Fall, I’ve started a prescription called Sinemet and when I remember to take it, it helps.

The shakin’ on my right side has now reached across my Dad-bod and introduced itself to my left hand and foot. I think the left side is a little intimidated or self-conscious in the shadows of its well-seasoned right-side counterpart as it doesn’t shake nearly as often or as boisterously… kinda like a 6th grader throwing down a few moves he learned on YouTube while blending in off to the side at his first school dance.

The RBF-type facial expressions are getting a little more rigid and pronounced. But I’m also able to sense or feel them as they are coming on or at least shortly after settling in. This is especially good if I’m talking with someone so I can hack it by being “very intent” with whatever they’re saying and then very timely switching to a raised-eyebrow expression of insightfulness!  #winning

The non-motor (mainly cognitive) symptoms are finding their groove now, too. Most of the time I’m still quick with a quip but there are more and more times where I’m searching for a word to say, one that I know that I know but just can’t say it. Turns out it’s on the end of the stick and being roasted by the s’mores dude in my brain.

Jerk.

The apathy also knocks at the door for a visit every now and then to help me just sit on my ass from the time I get out of bed to the time I find my way back there at the end of a mind-numbing day. Did I really just not do anything all day!? Meh.

On the upside, I’m learning to recognize some of these things as they are creeping in and then finding hacks to bounce off or push thru them so that’s cool. They’re not always 100% effective but it’s a learning process.

See? I told ya I’d be real with you. Stay tuned and check back occasionally as I share more of what I learn and experience with you — The good. The bad. And the Unshaken!