Currently, there is a commercial on television that features an average human being doing something that is spectacular in an everyday kind of way. When it’s halfway over, the person reflects that this must be how it feels to be Odell Beckham, who is a New York Giants player, scoring a touchdown. When the reflection is over, Beckham is also shown reflecting his football celebration as this is how it feels to be that other everyday person made exceptional. There are several of these commercials, and they all work well because they relate to people’s desires to have the accomplishments of their life understood on a celebrity level.
And so it seems that in life, we find ourselves relating to many people who do and experience things like we did, somehow hoping that they can look to us, too, for inspiration. Perhaps, it’s even possible to ask ourselves if by experiencing and overcoming these extreme situations simultaneously, we must all have something in common. However, that’s not always true. For example, Kurt Vonnegut referred to things like the camaraderie of being Hoosiers (his own personal example) as a granfalloon. Here, this idea of a “failed karass” reflected how people put stock in superficial things to establish a relationship with other people. Here, he may have been onto something with our association of people we don’t know as people who are like us.
Then again, this might not necessarily be true.
For instance, by the definition of shared experience, I am in an exclusive group that includes such luminaries as Michael J. Fox, Mohammed Ali, George H.W. Bush, Johnny Cash, Salvador Dali, Pope John Paul II, Mao Tse Tung, Casey Kasem, Vincent Price, Roger Bannister, Billy Graham, Kirk Gibson, Charles Schultz, Robin Williams, and the father of Wayne Gretsky amongst others. There are a few names on that list that I’m not letting in even though by definition of the requirements to this club, all you have to do is have Parkinson’s disease.
There has to be some level of exclusivity to keep some of the riff raff out so that the rest of us don’t have to relate to certain unredeemable historical leaders.
Nevertheless, for my place in their club, I’ve never ran a 4-minute mile either, let alone starred in Family Ties, created surreal paintings, hit a game-winning World Series home run off Dennis Eckersly, represented a religion in public or TV, made Shel Silverstein outlawcountry, or freaked out about a dog named Snuggles, which was recorded in a Negativland song. Thus, it’s hard to think that I could stand up in public to put my name to a disorder that is affecting 1.5 million Americans and hope to have that same kind of world influence as these other people when it comes to saying, “Stand strong, be positive, and push through to overcome your obstacles. You can make a difference in your story and that of other people, too.”
But here’s the thing: I do have the audacity and great responsibility to come out and tell you that I do and am doing just that.
And while I’m at it, I should tell you that for my even keel nature and my sense of optimism after this diagnosis, my left leg and my left arm have serious tremors. In fact, when I get up in the morning and the computer that is my brain turns on, my left foot goes into crazy shaking overdrive. Heck, when I’m excited, nervous, or angry, my left arm flops like a towel in the wind. My head even has a slight tremor, but I haven’t spotted it, though my doctor has. Seeing as he has lots of experience (20 years), and he did the initials tests after my PT specialist saw signs that didn’t jive with an earlier diagnosis of this being the tremors of spondylosis, which I also have, I believe him. I failed the pointer finger to thumb repeatedly test pretty dang bad on the left side. In case you don’t know, that’s something people with Parkinson’s have trouble staying in rhythm on.
As for my physical therapist’s take, I believe in her, too, since she went out of her way to work with her doctor to get me to my neurologist. Let’s just say it takes some cojones to challenge some earlier doctor’s diagnosis as an everyday hospital person. For that, I wrote her employers a letter of thanks while personally thanking her. I just need to say it again. She kicks butt.
As for the other medical professionals, it’s not that I don’t believe in those other doctors. There’s correlation and causation, and tremors come from other things like the thyroid medicine Levothyroxine and also from Spondylosis. Things happen. We’d like medical science to keep it 100 (like the kids say), but it is a game of trial and error (as is medicine routines), so all that matters is I’m here in the right place.
On the note of looking for logical avenues of what’s going on, originally, I tried to switch my thyroid meds that I just started, but no luck there, so it was back to the drawing board.
As for doctor diagnoses, who the heck would believe it could be from Young / Early Onset Parkinson’s Disease since that’s pretty rare? When looking at the flow chart path to a Choose Your Own Adventure diagnosis, there are plenty of “logical” horses to find. Why go out on a limb and call it a zebra? After all, only 2% of us were beneath the age of 40 when we got Parkinson’s disease (and the first symptoms for me were right after my 40th birthday, though I can remember rigidity for a long time before this).
So yeah, what I’m saying to you is that I AM A 45-YEAR OLD MAN WHO IS NOW DEALING WITH THE CONDITION THAT IS PARKINSON’S DISEASE. I’m out in the open with nothing to hide. Like many people I’ve talked to, they too knew someone who had it. The more people see it, the more they will want to know about it, and this means we are more likely to fight it to someday eliminate it.
The best lesson for anyone with a condition is to own it. To name something is to own it. Also, we need to follow in the steps of our heroes, like Marty McFly, who went 7 years in the closet before coming out to tremendous support and the ability to start an awesome charity that helps millions. Here, his lesson was that he was wrong to hide, so now was the time for him to get active. That’s what it’s about.
Just like for him, my journey wasn’t a straight line though from the beginning to the minute it was first given a 90% chance to call it by its name. Since then, I have chosen to be out in the open and active to help others. Every little bit helps, even if it’s from some relatively unknown, middle-aged chubby guy in Lancaster County Pennsylvania with no celebrity influence.
To understand that feeling is to know my story, so here is my story.
There were other warning signs along the way, too, and it’s not necessarily wrong that I didn’t associate them with Parkinson’s or other doctors didn’t either. In 2011, for example, I had frequent urination, but that could be a million things. So could anxiety and depression, but I’ve always been moody and prone to “resting bitch face,” as the condition is called. The whole not blinking when I talk thing was just an odd tendency I had to annoy my wife, which is just like not being able to smell my own gaseous emissions when I was stinking her out on the couch while watching television. It might sound gross, but a vanishing sense of smell also goes with Parkinson’s symptoms. Personally, I look at this one as a sort of gift until I think about someday losing out on the smell of cinnamon rolls and pine forests somewhere down the line. As for asking for a diagnosis with this, it seemed to be a moment to get clapped upside the heads with “cymbals!”
Besides, who goes to the doctor to say, “Doc, I can’t smell my own gas, but my wife can. Is something wrong with me?”
“Yes, you’re paying money to ask me a dumb question.”
But the thing is that it wouldn’t be a dumb question since it’s a symptom as are many other things. By that definition, I could have been talking to my doctor about balance issues while putting my underwear on when I came out of the shower and had trouble standing on 1 leg to get my other leg through the hole in my ball huggers. It wasn’t just that I was getting heavier (but that isn’t a good thing either, and it’s true that my weight was climbing up again); it was that I was getting Parkinson’s, and yeah, I was losing some balance.
So yeah, from those first visible tremor symptoms in 2011 when my parents, wife, and I were noticing my symptoms, I was choosing to hide them and be in denial about all of what the slight shaking hand things was or could be. I was holding my hand steady in public when possible, but even that only goes so long. After that, I got to the point where three years went by and the left leg / foot started shaking in August and September of 2014. By this time, things were building and changing or should I say slowing down and drying up.
By the time I made the choice to deal with this from the perspective of getting my spondylosis, which I did have, fixed, a lot of time was under the bridge. However, with having reflected left arm pains from degenerative discs and a pinched nerve, I had to do something since I couldn’t sleep. However, on top of telling me this wasn’t Parkinson’s, the docs said take meds or shots and put off the surgery as long as I could to avoid the knife.
“You don’t want back surgery unless you need it.”
I agreed with that though I didn’t think all of the alternative medicine was going to do much good, so yeah… wait it out it was. Besides I saw a coworker get messed up on back surgery, so I went back to life and the pain mostly went away. At least I could sleep, which is always a good thing
Then, in July of 2016, I felt a new stage of my tremors coming on with knee pains as well. Something had to be done, so I thought about surgery over Christmas break. After all, my 80-year old father in law was back and moving quickly after his surgery, so why couldn’t I?
It was time to be “normal” again. I was tired of the little things like drooping my left pinky and typing tons of extra A’s in my writings. Who knew that was a symptom of Parkinson’s, which was associated with my left claw-shaped hand? I just thought it was a weird hitch in my typing game like Chuck Knoblauch found in his baseball game.
Things like this had been going on for years before they were noticed. My body was changing to fit the disease because compensation is what we do. It wasn’t all at once. It was gradually over time. That’s what Parkinson’s is: a progressive disease that changes people for the worse over slow amounts of time.
In the body, the spatial nigra slows down it's production of dopamine. Sometimes, as in my case, enzymes may inhibit production. At 60-80% of dopamine production cells being damaged, symptoms come. Then the neurotransmission problems kick in since messages don’t get sent out as quickly. This provides gaps in time between thought and action. They might be milliseconds quick, but they’re still gaps. It’s kind of like an ADHD thing where people think so fast that they can’t remember what they were thinking of since their brains are making super rapid connections so they have to pause to remember what some other part of the brain also wants to say. To the untrained observer we’re trying to hide it from, it also seems like a more deliberate way of processing before acting on things, but it’s not. Medicines can help with this. They can also help with the tremors. The key is just being diagnosed and getting started.
As the disease goes on, other things happen. For me, I once typed over 80 words a minute, before the “extra A” thing, that is. As a teacher and writer, I could fly on the keyboard without looking. Slow typists aggravated me.
“Just give me the damn keyboard!”
As the author of several books with several more in my brain, the fact of my tremors influencing my left hand has slowed me down a fair bit. I don’t fly like I used to, but just like with the feeling in my left foot, the clawing toes and pain on top of my foot, I am now learning to work within a different framework as I can still move sort of fast, just taking breaks to shake sense back in my hand. What concerns me more is multiple claws and even slower speeds. The books Interactions and A Lot of People Die have to see my computer screen. Writer’s block and wasted time can’t slow me down. I’ve got work to do in writing, exercising, and spending time with family. Here, I feel like a character in Dostoevsky’s The Idiot. Life is to live, but how to do everything at once without feeling like I’m headed for a crash?
And those hiking dreams are a big thing.
At the time that my foot things were first happening, I had just finished losing 40 pounds over a year and a half and completing 204 miles of exercise specific movement in 33 days. I was motoring and doing well. Heck, I even starting running, and then I noticed the weirdness on my foot, so my progress smashed into the wall of inactivity. At first, I thought the pain I was experiencing was from stomping my foot so hard on the treadmill. That was what I was using when I wasn’t using the beautiful trails of this state, places like the Standing Stone Trail, to get in shape for Mount Defiance on an Oregon trip that my wife and I were planning. However, despite having this trip booked, it didn’t happen because life and death did when we lost our 2-year old great niece to Alper’sDisease, which is a really horrific condition to have. Imagine a very tiny child who gets liver disease, epilepsy, and issues with mental and movement abilities all at once as many of these children also go blind in the short time they have left until the final bomb wipes out everything. At birth, everything seems great, and then the first effects happen and there it is.
Thinking about this now makes me realize how tough that little gal was and how lucky we all are, as Dr. Seuss might say.
After that realization that my problem with running pains was more spondylosis nonsense that meant slowing down walking. In addition, I felt the hikes I was taking becoming more affected. In the end, spondylosis ended carrying a heavy backpack since my spinal issues left me feeling jacked after wearing the pack or driving for too long. On that last winter backpacking hike to the top of Hawk Rock on the Appalachian Trail, I came back super jacked up from the weight, and well, I even went as far as to stop some of my daypack carrying hikes.
In addition to the oncoming winter blahs, there was the leftover sadness of the end of that summer. The loss of Ava was a tough pill to swallow, but it taught me a lesson (as I’m sure it did to everyone else who was Rock Bottomed by this cruel twist of life that goes with burying a toddler). This revelation was that life is valuable and short. Things happen. Not everything goes as planned. It was hard to make sense of it, but in the end, I did it by choosing to try to live the life I was given. I knew that I and those affected had to find a way to rejoice in the value of life, so we needed to live it as long as we could. It’s not like we forgot her, but we moved on for ourselves.
Amazingly enough after all the sadness and tragedy of that August, Ava’s little sister Lydia, now 2, is still smiley and giggly. She’s a great little pirate, in fact. During her baby days, she saw her sister for about 5 months before she passed, so she never really knew her. However, from time to time, she sees Ava watching her from time to time as a guardian angel.
I guess a guardian angel is what we all need to choose life over darkness. I’d like to think that Nana and Gram are looking over me, too, though I’ve never seen them personally.
All in all and even in death, life is about living well. However, when this is phrased as “choose life,” people think of other things. To a degree these things aren’t 100% overlapping on the Venn diagram, but they do apply to Parkinson’s in no small quantity. Of course, some people might debate on the potentially life-saving technologies of stem cell research and what can come from 4-day old embryos, which might have been thrown away after they weren’t used for in vitro fertilization if they weren’t donated for this option. I’m not here to debate right to life and church doctrine and pro-choice. That’s someone else’s argument. I for one believe good things can come from people who conscientiously and compassionately donate those cells, but I also know that it seems selfish that as someone who can use these cells to get better, I would feel that way and try to make you believe so, too.
Then again, I know I’m also smart enough to know that this technology will most likely never be used by me. I’m 45 now. I could be 60 years old when the time to use them comes, and by that time, I will have progressed further, so I’ll tell you that this is more about no more me or Janet Reno, Pierre Trudeau, or Linda Ronstadts. Let the next generation get to skip this trip into a loss of balance and control, as it moves its victim into fear. For me, I want other people to live and be happy and never know what I’m going through (the same altruistic notion as my family felt when we didn’t want anyone to go through the pain of Altzheimer’s like my Gram did when it took over the final 10 years of her life).
Nevertheless, I’m also not here to talk about fear. I’m not here to talk about being the face of early onset Parkinson’s disease, though I guess that I am. I’m here to talk about people first language, because I’m all of these things first and foremost before I get to be a walking, talking neurological condition.
I am a husband to Heather
I am a son to John and Essie
I am a brother to Beth
I am a nephew to Toot, Dave, Pat, Steve, and Deb
I am Big D’s godfather
I am Uncle Dan to over 20 different kids and adults in Pennsylvania and Ohio
I am a cousin and all other kinds of family related tags
I am a friend to some really great people who have listened to my story about this and been there in good times and rough days
I’m a Berks County Boy living in Ephrata, smack dab in the middle of Amish Paradise
I am a teacher / tutor who works hard to push people to be great while teaching them how to write well, and for this, I’ve seen some really great people I feel awesome about working with
I am the proud product of a community college, which transformed my life
I am a writer of ghost stories and outdoor tales
I may write ghost stories, but I believe in God and the power of true love
I went to a Catholic college whose teachers also influenced me
I am a hiker who is active in hiking groups to include the Standing Stone Trail which in my humble opinion is the best trail in Pennsylvania
I am a photographer
I love music from all genres, especially Polyphonic Spree and Neutral Milk Hotel
I’m a baseball fan
I served in the Air Force
I like chocolate iced donuts, cheese steaks, and pizza more than I should
I’m heavily influenced by stories of people overcoming hardship.
I have a weird sense of humor
I’d like to think I’m a good person, but I’ve done some knuckleheaded things that I wish I could undo, too
The Stockdale Paradox is my defining code.
You must never confuse faith that you will prevail in the end with the discipline to confront the most brutal facts of your current reality, whatever they might be.
Victor Frankl’s Man’s Search for Meaning and Laurence Gonzales’ Deep Survival also taught me a lot as did Aron Ralston. To be honest, if not for reading those books and going on a course of finding strength in my struggle, I’d be in a bad place now.
And no matter what, I’ve listened to the words and advice of a lot of people.
I remember prior to going into the Air Force, my dad played Tom Petty’s “I Won’tBack Down” and saying this should be your anthem to do great things. At the time, I was scared of my drill instructors to be, so Basic Training was very hard for me, though somehow I made it through despite never going back to that song. That’s all changed now since I’m using that song now as strength and motivation. After all, Tom Petty should know. He was a Wilbury.
There’s a lot of good heavy metal and songs by the Rollins Band to also push me through these tough days. U2’s “Where the Streets Have No Name” and The Script’s “Hall of Fame” also come to mind as life-pushing songs.
Right now, I consider myself to be “OK.” My disease is a word. I’ve learned to deal with the symptoms and what I can’t do. I’m confronting how this disease will progress, and it will progress. Like the part in Jaws where Hooper says, “What we are dealing with here is a perfect engine, an eating machine. It's really a miracle of evolution. All this machine does is swim and eat and make little sharks, and that's all.”
That’s Parkinson’s. All it does is make the left side shake with tremors. Then it moves to the right side. Then it makes the voice slur. Then it makes people fall and forget. It robs them of their independence and forces them to use medicines to cope with things. It doesn’t kill like cancer, but its symptoms cause problems that can kill. The symptoms are not guaranteed, but neither are things like sight, a cancer-free life, hearing, walking without a cane, or living free of Type-2 diabetes. Heck, I could be hit by lightning, crashed into by a drunk driver, buried under anavalanche, or eaten alive by one of my bear friends. Stuff happens. There’s no point in worrying about what if. The alien invasion can come any time. Until then, I need to get busy living.
Typing this here, I’m confronting my brutal truth as I own the whole gamut of what’s to come. Stuff is going to happen, but I’m going to work my hardest to get through this and not worry about it more than I have to.
Fortunately, like Michael J. Fox felt about himself, I’m lucky. For one, I’m not alone. If I pushed everyone away with mean inconsiderate and horrid behavior that I refused to apologize for or it was so bad no apology would be accepted, I would have failed in my life, but here, I haven’t done that at all. Life happened, and I’m living with it. I have a personal caring network of people who I value and who value me. My wife Heather, my entire family, and a series of friends and bosses who know and understand while supporting me are ready to help me out.
Thank you! Thank you! Thank you! Thank you!
If you know any of these people (or anyone else on this blue / green planet for that matter), please be there for them with a smile, kind word, or hug since you’re their support system. You never know the power of your support to help support another person through the things they are dealing with, both individually and as part of a team. Life is about love and compassion and people. This is how you (and I) pay your (our) dues for getting to live here.
For two, I’ve had 5 years to wrap my brain about my oncoming loss of ability, though I refuse to not be able to do things (even if there are a few things I’d still like to do, which are vanishing). My “THINK / ABLE” shirt says everything. My Jackie Robinson Brooklyn Dodgers hat also inspires me. After all, nobody is trying to kill me or my family for me daring to play a game. That’s real toughness to endure that, and that’s a classy wife who helped him persevere through it. My Rock brahma bull Under Armour shirt also makes me feel tough enough to do this. After all, with Dwayne Johnson as my tag team partner, I’m all right.
In addition from the 90% definite diagnosis of Parkinson’s on September 27th to today, November 1st, now that I’ve gotten my diagnosis, I’ve had a lot of time to get ready for this. I’ve talked to people and got them ready for the consequences of the time bomb in my head. I’ve been hiking at Glen Onoko, Nolde Forest, the Ephrata Rails to Trails, and on the Standing StoneTrail. I’ve slept under a million stars on a 32° night, and I stayed warm and happy, getting some relaxing sleep in the Butler Knob Shelter while getting to see a couple deer and a porcupine.
As I said, for years, my condition has been slowly motoring along, just waiting to get strong enough to really happen. Now, it’s here for all to see. It’s doing / not doing its thing. What else is there to say, but to learn?
Then again, don’t spend a lot of time learning so that the learning scares the crap out of you and keeps you from living. Like my physician’s assistant friend Will said, there’s a lot of well-meaning bad advice out there on the Inter-web thing that can make people into a hypochondriac or a scared mess (my terms – not his). He recommended the Mayo Clinic.
If you learn about a condition, whatever that condition is, you can make informed decisions about it. You can support it. Whether it’s the crisis in the Middle East, poverty, or Tourette’s syndrome, you can understand it and talk knowledgeably about it. Find your cause. Fulfill your mission, whatever it may be. You’re here on earth to make a difference.
Prior to my slow course of learning, I did see a sad video of Michael J. Fox slurring on that first day of my warning of what was coming. I didn’t know what Parkinson’s disease was, so I went to the video world, and WHAM! It really hit me hard. His video was taken 20 years or so into his disease, and it hurt to see this. I’ve also been troubled seeing the faces of loved ones, especially my wife, who deserves nothing but the best things. Those experiences affecting others hurt more than my hand and foot, but we will get through them. We’ll be OK. We will persevere. It’s what people do. We only have one other choice, and frankly, that choice sucks, so forget about choice. “Don’t think; just throw.”
Standing here with this sense of strength going into battle is not the whole truth of what it’s taken to get here. Oh, no, not at all. Had I dealt with this diagnosis in the horrible year that was 2011, life would have been catastrophic, and to be honest, well, you can fill in that blank. It was bad enough turning 40 and looking back on life and dealing with limited work that year, but it would have been much worse dealing with neurological and physical troubles to come. For that, I’m OK with being where I am today, even if it meant not having the right diagnosis at first. As I said, I’m even keel, but I’m also dealing with it in happy and sad ways. There will be good days and bad days, but I intend to have a lot of good days for a long time to come.
So yeah, as I said, I’m OK. Don’t trivialize my struggle with pity. Parkinson’s sucks, but I’ve been given the opportunity to make you aware of this struggle. That most definitely doesn’t suck. Consider supporting / working to solve it or some other life-sucking disease. Should you want to learn more about this one, go to Michael J. Fox Foundation or any other organization like National Parkinson’s Foundation or the American Parkinson’s Disease Association. Like I said, it’s not all about my condition. Other conditions need love and research, too. Consider giving to other charities, not just the one that has the most news about it. For instance, Alpers is very rare, but it’s brutal. That would be a good place for some brilliant science / medical researchers.
And while you’re at it, do things for others, no matter the cause. Please remember, charity is more than taking an ice shower on video. Consider what you believe with research technology, but don’t compromise your beliefs. Besides, if I can change your beliefs to my way with a short 9.5 page essay, someone else can change them back with a little bit longer and / or louder essay.
Here, I’m more concerned with the big picture, and that’s choosing to live life no matter what else you believe or who you vote for or what you look like. You’re reading this, which says something awesome about you. You should continue do great things for yourself and others. You should choose to be good for other people and to not be a jerk. I know sometimes we have to be the blockade in someone’s day, be it kids, coworkers, or customers, but do it for the right reasons, not to be malicious.
Most importantly, and I’ve said it before, but I’ll say it again; you should choose to be there for others, whoever they may be. This isn’t all about me. It’s about you. Be a better you. Life is short. We found that out with Ava, and I’m continuing to learn it with myself and the motivational TV world out there. Besides, even though people are here for me, I still have responsibilities to be there for them, regardless of my diagnosis.
I’m not letting Parkinson’s stop me. I’m still going to hike. I may not be doing things solo, but I still plan to hit the rock fields, waterfalls, and ice. If this is my last year for a frozen Rickett’s Glen, I’m going to take advantage. If I can still climb the rocks at Lehigh Gap, I want to. I still want to go back to Sullivan Run, and I’m damn sure going to get to see the Holy GhostPanel at Canyonlands.
And when I’m at these places, I’m going to smile because I’ll be with the good people living my life, my way, enjoying things and spreading happiness. What more is there to the meaning of life?
Thank you for reading this!