Interestingly enough, my last post was written a few days before my last sanctioned meet and now, 18 months later, I find myself in the exact same state of affairs. I’m currently 3 days away from my first powerlifting meet since my brain surgery on September 20th, 2016 and the last thing I want to do right now is to continue this exorcism. It would be so much easier to simply pick up with an inspirational post after this meet, saying, “Hey, sorry I took so long dear readers, but things got rough there for a while, you understand.” The truth is though, you wouldn’t, and some of you need to. Some of you are like my brother, refusing or unable to see that, to a person with a disease like this, it hurts us far worse to be reminded that our affliction hurts everyone around us than any dystonia, tremor, or fall. Some of us on the other hand, need to see that it’s not just us waking up every morning and wondering why we’re still here. You aren’t the only one to be buried by guilt in knowing that you should still be able to work, to support your family,… but you can’t. That guilt is what buried me for months. I remember thinking that it would never leave. There are no platitudes or pretty phrases that I can tell you to make that feeling vanish. There is no river, there is no fire, and there damned sure is no river of fire inside all of us that holds our superpowers. I can recite Invictus by memory (impressive for a Parky) and it would never get through to the jaded mindset of the eminent victim. Fix this in your mind now, whether you are a caregiver or a care-needer, a PwP or a harshly judging brother, that everything is cyclical. Remember when your eyes crawl open after two hours sleep, when you can’t swallow because that part of your nervous system is currently incommunicado, that this is a valley. Keep your boots on and your eyes up, one foot in front of the other, and the light will find you. Enjoy the sunny heights so much that their memory is enough to shine through that jaded apathy that you know will come again. In the words of Charles Bukowski, “We are here to laugh at the odds and live our lives so well that death will tremble to take us.”, … OK, fine, I happen to like wordplay and platitudes…and on that note…

  Caffeine & Kilos Deadlift Event, September 2016: I feel a bit of satisfaction after the failure in July. I finally have a 600 lb. deadlift in official competition. Even better, finishing second in my weight class to Silent Mike, who I just watched pull his first 700, stokes those dying embers in my forge. I realize, even though I’m the oldest competitor there by ten years, not to mention the only Parky, that I’m actually very close to that number and decide to push hard for it in the three weeks before Deep Brain Stimulation and the uncertainty (athletically at least) to follow.

  Ironborn Strength Gym, September 2016: Last deadlift session before surgery. Ten minutes ago I finally pulled 655 for a PR and everyone is getting ready to leave. Beer bottles are in the trash, (yeah, we’re that kind of gym), but the plates are still on the bar. Junior looks at me and asks if I have another. “Let’s go seven plates.” As far as I know, 666 is still the world record in my division of the IPL (age 40-44, 220 lbs). Seven plates on each side of the Texas Deadlift Bar is 675. I’ve been in a groove all day, and it continues when I push the world away and feel all 14 plates come up so fast that they start to oscillate the bar as it bends up and down, like an Albatross flapping it’s wings on take off. Even though it would never count in competition, I know with a few weeks work, I could do this and make it official. As the bar settles down and I look to my left at Junior Magana, “Is it good?” I ask with just a look. “It’s good! It’s fucking good.” I slam the bar and do something very dumb. All day long, my little plastic action figure has ridden every single lift taped to the weights. I swing my left foot like a sand wedge, intending to launch the poor thing across the gym, but this is Kratos, magnate of the God of War video game franchise, and regardless of his eery likeness to my appearance, he will not be launched. My foot swings inches too low and kicks the weight hard enough to rock all 675 lbs. Miraculously, it wouldn’t hurt for two days, but then…yeah. The lesson here, dear reader is that we really can do almost anything we put our mind to, but we must contain the celebration!

 

  San Francisco, September 20, 2016, 5:00 am:  I feel completely peaceful as I walk the three blocks from our hotel room to get my mom’s car. I think the hospital might be closer to the hotel than our parking lot is. It’s misty and pleasantly chilly, every light on the street stretched out into a halo as if they’re in a Thomas Kinkade painting. Still no fear or anxiety, just peace and calm determination. I know this will be fine, but damn, I would kill or maim for a cup of French Roast on a morning like that.

kinkadeSF

—UCSF Med Center, 6:00 am:In pre-op. Still joking around with the staff as they screw the metal frame onto my face. The local anesthetic was the only pain I would feel in the entire procedure. My only concern is my mom, who will be staying in the hotel around the corner alone, my brother, still angry about the fight weeks before, will have nothing to do with me. She pokes her head around the curtain and her cheery smile melts and tears well up as she sees the metal mask bolted to her “baby’s” smiling face. She can’t stay and has to go to the waiting area for what must be one of the longest days of her life, alone. The anesthesiologist comes in and…

—The Operating Room, an eye-blink later: I blink my eyes and I know right away that the surgery has started. The blankets are warm and feel fantastic but my neck is already stiff from my head being bolted into the CT machine. The target for my DBS procedure is the subthalamic nucleus, or STN, a pea size structure deep in the base of the brain. A voice from behind me asks “Josh, how are you doing? It’s Dr. Starr.” I’d planned a horrible practical joke, but thankfully I settled for mere joviality, “So doc, are you guys in my brain right now?” “Yes, sir.”… “Cool.” After hours of testing, moving my right arm and leg in different patterns, touching a series of dots on an ipad, all while listening for the signal that they had exactly located the STN, I blinked my eyes…and I was in the recovery room, talking to the recovery nurse. Mom was there, covering her stress like the 42 year veteran parent that she is. An oddly dull headache is the only discomfort. Even the Zippo lighter-sized neurostimulators installed in my upper chest don’t hurt, and for only the second time in my life, out of far too many, I’m not nauseous coming out of surgery. These guys are good!….

—My bed is comfortable, but the angle keeps making me slide down into a slouch. I carefully plant my hands on the mattress and push myself up <STOP!!!> My head gurgles audibly as pressure in my skull builds then falls. MY response, <Keanu Reeves voice> “Whoah, awesome”. Over the next two days, I eat like a horse, ordering two entrees at each meal and never having trouble finishing them. Mom is in and out and my ex-wife and step-daughter call. I recover quickly, and two days later, we drive home. I enjoy making faces at people on the freeway with my head bandaged. My mom, is not a fan of my tomfoolery or shenanigans, but she’s used to them by now.

  A few weeks later the DBS would be turned on and while I didn’t have one of those clear black and white, tremor one second, perfectly still the next moments, it was a huge success. The 47 staples were removed from the 4 incisions in my scalp and the steri-strips were removed from the incisions in my chest. Rewiring the human brain is not a simple process and there were some adjustments needed, but at first I felt so good that I convinced my neurologist that I wanted to try going without meds and just rely on the DBS to manage my symptoms. The fact that my issues had been predominantly motor vs. non-motor symptoms made me a poster boy for the procedure, so we gave it a shot. For a couple of weeks, I was basically healed. I had forgotten what it felt like to have both hands under my control. No tremors and only a ghost of a limp from muscle memory. Of course this thing wouldn’t be the undefeated champeen of painintheassery if it was that easy….

  Over the following weeks, months, and now once every year, I would make multiple trips back to San Francisco for the study I volunteered for. I agreed to let Dr Starr install a third electrode on top of my brain. This electrode simply reads the signal from my motor cortex, giving the research team a chance to isolate a signal produced when my STN has too much stimulation. The hope is that this can lead to a smarter neurostimulator that can turn itself down when that signal is detected. About six months ago, the opportunity came up to actually put my system in a closed loop, or self-adjusting configuration. While it was just a temporary test, it was a great success. According to the rep from Medtronics who was there that day, I was one of the first people in the world experience it, and that is one of the things I am the most proud of. I encourage anyone reading this because they are considering DBS surgery, first of all do it. The surgery has an incredibly high success rate, and recent studies show that it has a much better impact on symptoms the sooner it is performed. It also presents a huge opportunity to help the medical community advance the technology that is helping so many people reclaim their quality of life. This is a chance to truly make a lasting difference and as for myself, it gives me a sense of purpose to hitting the 1 in 10,000 shot to win this disease at my age.

  Now if that was the end, I’d be back into powerlifting mode, trying to translate the beauty of a strength sport into an inspirational essay and how each lift is a metaphor for…luckily there’s a bit more to come. Part three will wrap this little odyssey up with my attempt to return to work, my darkest months, a cross country road trip, and the effect your family can have on you,  for good and for ill. Until then, Live. Your. Life.

WHERE HAVE YOU BEEN MR. ROBINSON?: Part 1

  Where have I been, you ask? Apparently it’s been about 18 months since my last blog post, and I am just now trying to answer that question for myself. A better phrasing of the query might be “WHO have I been?”, and then the one that really punches me in the gizzard, “Why the hell are you back?”. That last one, though it does cut me deep, is the easiest to answer. I’m back to telling my story because of you ladies and gents who have convinced me that, despite a broken and sickly brain constantly poisoning my self-confidence, I still have a story that helps people. That really and truly is all that I have left to do with this cosmic eyeblink of a life. So let this long overdue essay serve as my sincere thanks to all of you who have reached out to say, “We’re rooting for you!” The time between July of 2016 and a few months ago is fractured into tiny islands of memory floating in the River Styx. Is that last bit too dramatic? Yeah, reading it back, it sounds like my writing. Maybe I really am on my way back. All I can do to recall this 18 month fugue state is hop from image to image and try to keep them in order. These are my experiences with PD and, as usual it will get dark, but hopefully, that just makes the other side of the tunnel that much brighter.

 

  Ironborn Summer Smash, July 2016: To say it’s hot the day of the meet is a monumental understatement. The heat is inescapably dense. Looking back at pictures and videos, my dry, unsweating skin is a sure sign that Parkinson’s was definitely having a say on the day’s disastrous outcome. Earlier, I had missed my first squat in competition. A perfect squat record and my first ever attempt at 500+ lbs without knee wraps, gone to two red lights from the side judges. It’s ok though, I’m only here to deadlift, with my eyes on unofficially breaking the world record in my class of 666 lbs. As I try to pull on my deadlifting shoe, my abs cramp so hard on the right side that they stand out like knots the size of walnuts under the skin. Only the three on my right side mind you, and they would be sore for days afterwards. This is another shot to the autonomic nervous system from Parkinson’s called dystonia, and for some, it is absolutely debilitating. I’m lucky it’s only an occasional annoyance.

  I step up to the bar for my opening attempt at 617. I’m not concerned at all. Five minutes ago, my last warm-up at 585 felt light even though I haven’t felt right all day. My body is a lava rock in a sauna, and the muscle tissue on my right side has dessicated from prime rib to beef jerky. Even still, I’ve hit this weight for 3 reps without a belt and months ago hit my personal record of 645, so I’m not worried…until it’s too late. A poor starting position leads to a slow pull that leaves no gas for the last few inches of the lockout. Inches that might as well be miles… The second attempt is over before I know it really begins. My head spins. Again, it doesn’t feel heavy, but with no balance, I have to drop it as I fall forward….Final attempt. No more thoughts of unofficial records. Just trying not to bomb out. This place is loud. I have inadvertently given myself one of those moments that any competitor lives for. I have the last lift of the day. I’ve failed it twice. The crowd at Ironborn Strength Gym is so loud that my ears buzz. I yell as I take my grip, but I barely hear it. All fire and no focus leads to the same faults and the same result. No score in the deadlift means my first disqualification. I’m proud of the effort, I like to think that I “failed while daring greatly”, but this one leaves a scar. It is a week before I feel physically right again and truthfully, damage is done.

 

  Mom’s back patio, September 2016: I’m so angry and embarrassed that I am literally shaking (not just tremoring). If there is one thing that every Parky has in common, it’s the fear of becoming a burden to our family. I haven’t been able to work for months. With disability paying next to nothing, I have no choice but to live at my mom’s house. I take a little pride in the fact that I remodelled the kitchen for next to nothing years ago, and that I “have my own place” in a studio separate from the main house, but really, it’s just a foolish bit of pride trying to protect a proud man’s ego. I’ve raised my family, and raised them well, my ex-wife remains a good friend and my kids are all truly beautiful people and now, I have to sit here and be berated by my brother because he has to mow the lawn, as if we’re children. I wish I could still mow my own damned lawn. I wish that the vibration didn’t cause my hands to cramp and tremor. I wish I could still train or exert myself without being absolutely wrecked the next day or risking a heat stroke. My first ever episode of a PD-related impulse control issue is to throw a cup of water in his face. From there, things go downhill with a quickness. I still hate the fact that I lost control. I started the physical fight, but I am very glad, even now, that I never hit him with a closed fist. The right cross is on it’s way and on target, but at the last minute I see my little brother and open my fist into some kind of ridiculous looking open-palm face shove. It’s very hard to fight someone while pulling punches. At one point he throws a lawn chair. I caught it like a boss and set it down. I should have sat in it. Instead, I charge him, he reverses and I pull guard as if I know what I’m doing. (Though I’ve never lost a fight in my life, I don’t) Forgive my irreverence here. It’s how I have to deal with this situation, but it has honestly been the biggest source of pain I’ve had to cope with since my separation from my wife.

 

   There is obviously more to this story, and truthfully, it was never going to be told at all, but it does have a huge lesson for family members and caregivers, so that’s the part that I’m telling here. I’m going to bet that I speak for an overwhelming majority of Parkies, but no one feels worse about the things that we can no longer do than we do. No one can ever hurt us as deeply as the people who are closest to us. It takes guts to keep an open heart, but damn it, we are here to experience all that we can in the time we have and that means living maximum effort, safeties off, and savage.

 

   After trashing six hours worth of pointless and vapid writing yesterday, I got some great advice from two friends and fellow writers that I have a ton of respect for. Just write. Stream of consciousness. Flow state. Be the ball. Nananananananana…. Basically. Thanks Alex and Junior, and of course thank you all for following along. The best therapy for me personally is the thought that in sharing my struggles and my victories, I can pay it forward just a bit. More to come as I get caught up over the next few days, from the threshold of the 700 lb club, to being awake during brain surgery. From feeling cured to the deepest depression I could have imagined and finding my way through to my first competition this coming Saturday. Until then, Live. Your. Life.

Any and all donations to the campaign started by my friends at work are badly needed and greatly appreciated. This is my only source of income until my Social Security case is approved, a process that can take up to a year. If you can’t donate, I invite you to share both the campaign and/or this website.

https://www.gofundme.com/robinson-vs-parkinsons

 

 

FEAR – Part 2

I’ve really had a tough time getting going today. Being physically broken down from brutally heavy training for the Ironborn Summer Smash this Saturday. I had put so much work into this competition after finding out that my home gym was hosting our first USPA sanctioned meet the same month that I had planned on taking a shot at my next record. Recently finding out that the World Record is not breakable at our event, and two injuries at the very worst possible time have really gut-punched me. The chances of my performance this weekend even coming close to my expectations have been virtually crushed… but not totally. My initial reaction is fear. Fear of failure. Fear of disappointment. Fear of running out of time. It took me counseling a friend about overcoming this emotion this morning to remind myself that I’ve been here before. I looked up an old post and video from my currently hibernating blog to find her an answer, and in doing so, I found my own:
<MOLON LABE – COME AND GET THEM> My earlier experience at defeating this emotion.
and the video that goes with it: FEAR
I am not afraid to fail. In fact, I can guarantee that I won’t. Because “There are an infinite number of ways to succeed. INFINITE. But their is only one way to fail, and that’s standing still.” – Eddie Pinero<LINK TO “The Pursuit”> , Eddie’s phenomenal video, and the source for this quote. Well this Saturday, I won’t be standing still. I’m sticking with my plan to open with a 625lb deadlift and then gun right for my goal. My feet will try to drag just walking out my squat. My arms don’t listen to what my brain commands and any bench press has a chance to die at any point in the attempt and the deadlift, my best lift, has recently been getting weaker and weaker. This does give me a real chance at bombing out, but I’m not there to participate. I’m there to show what you can do with Parkinson’s. What that really means is not that you can break world records or lift incredibly heavy weights despite balance issues, immobility and a slow nervous system. Those things are just a cool side effect of the real answer to the “what can you do with PD?” question. The real answer of what you can do is simply to try. If you can’t stand, LEAN. If you can’t walk, CRAWL. The option to make an effort is always there and if you push on the walls of the box that life tries to put you in, they will grow. Today’s step becomes tomorrow’s stride, tomorrow’s stride becomes a walk and from there you learn to fly.
I have a lot of friends getting ready to compete this weekend all around the country. Many have expressed worry, doubt and fear about how they will perform. The only way that fear of failure becomes reality is with your permission. When you decide not to give in, but instead to step into the arena, to feel the grit of it’s sand under your feet and take up what weapons you have to face your foe, you have already won. You are alive now, so LIVE. Accept your fear and drag it kicking and screaming into the arena with you, then throw it to the lions. Since they won’t be eating you, at the very least, let the beasts not die hungry.
gladiatorvslion

NUTS

I can’t tell you how many times I’ve heard it. “Man, you are nuts!” In my younger days, this much appreciated appellation could have been encouraged by any number of shenanigans that my friends and I enjoyed. Jumping off cliffs or train trestles? Check. (It’s even more fun when the train is running right next to you.) Wakeboarding in the river? Sure, you just have to remove the pin from the outboard so it won’t snap off when you hit a rock as you’re pulling a skier up the rapids. If I told you about the time five of us chased down a truck to a bonfire party with over forty people you would’ve said “O.K. that’s just stupid.” You would’ve been right too, but when some guy in the back of said truck throws a beer bottle and said bottle splits some poor girls head open, that guy was going to feel something, no matter how many friends he ran to. As a side note, after explaining why my buddy just flattened their friends nose (literally), we were all made welcome, which was handy, because our party had just broken up (which happens to be the reason that flatnose decided to try his hand at makeshift artillery).

But that was then, and this is now. The Josh who was sometimes known as Thor now goes by Grandalf. I’ve raised four kids with no drug addictions, arrests or teenage parenthood. I even managed to do my part in teaching the Code of Man that can only be learned on the football field to dozens of young men, the majority of whom now have beards bigger than mine and are raising their next generation of gridiron grunts.

I can hear it now. “Well thank God you grew up! The good lord musta spoken inta yer life to cause such a turn around. Hallelujah, welcome to the fold!” Sorry, friend, but if there’s one lesson I’ve learned from all of my wilder days, it’s that having the conviction to follow your own path will almost always be the best choice, yet virtually never be the easiest. This includes the decision to spend much of my adult life without many real friends after saying adios to most of those from “the 612 days”. (Our apartment number…it was legendary. Sometime I’ll tell you about finding a 500cc Honda dirtbike parked in the living room when I got home one night. Wouldn’t have been a big deal except that #612 was upstairs.) When many of my friends questionable life choices became bad habits, I did not follow along. One of the things that originally set me apart from my crowd was that I never did any drugs. There may be many things that I would use a time-traveling Delorean to go back and slap the taste out of 19 year old Josh’s mouth for, but standing against the tide would not be one of them.

That beautiful gem of a personality quirk is literally making my life right now. Those who know me now will laugh at the notion that I am some kind of rebel. The Thor who calmly walked into a fight against dozens with four friends is now Grandalf who has two beers left in a 6-pack that he bought a month ago. The 13 year old who walked up to a Black Bear with a video camera now spends all of his time in the gym, at the computer writing programs for the gym, or editing inspirational videos…which are mostly based on what I do in the gym. If I take it back even further, I really owe the 10 year old that spent entire summers from sun-up to sundown swimming in a river  that any sane adult insisted was full of undertow currents that would suck you straight to hell and giant eels with eye-lasers that would give you face cancer. That little sunburned rebel is the reason I was able to save my wife’s life on that same river decades later. Back then it was “You’re nuts for swimming in there!”. A quarter century later, when my wife and her friends are trapped under a submerged tree and I’m twenty yards downstream it came out more like “Thank God you’re a strong swimmer.” You can thank God, I’ll thank that skinny kid who knew what he was capable of and trusted in himself.

The odd thing is, it’s only been very recently that I’ve realized that I never outgrew the outlaw-viking-pirate phase. I just thought that I didn’t need it anymore. Now, though, the comfortable life inside the village walls is gone. The village, razed to the ground, it’s signpost now reads a line from Rage Against the Machine, ” The frontline is everywhere. There be no shelter here.”

The invasion by the Dread Pirate Parkinson three years ago set my comfortable life to the torch. Going along, running the treadmill to nowhere and taking my daily piece of cheese had been fine, and then, in the chaos and confusion of early diagnosis I found myself alone again, the kids suddenly grown and that wife that I had saved just a friend. I shudder to think of what I might have turned into if that 19 year old daredevil hadn’t stayed alive and well somewhere inside my dopamine deprived brain. Luckily, he stuck around to take the wheel when our collective life ran out of road because the kid can still drive it like he stole it. The other personalities might be sitting in the back seat now, but they’ve got smiles on their faces, because the kid always pops the clutch in second gear.

“Man, you’re nuts!”, is something that I’ve started hearing again recently after spending a couple of decades as a perfectly sane, rational adult who pretty much colored inside the lines of life’s coloring book. Now though, I hear it about what I do in the gym instead of the insane things that an invincible 19 year old used to do for fun. To be frank, I’ve started to hear that I’m flat out wrong,… again. “You train too hard, too long, too heavy.”, “You squat/deadlift too much”. I have heard all of these things from friends and family, most of whom really know what they’re talking about, for three years since picking up the barbell again. Hearing this used to shake my confidence and make me question myself, but not anymore. I appreciate the concern, but I’ve been training this body for decades, and while I am constantly having to make adjustments, I do know exactly how to do this.

Would I put anyone else on my exact program? Hell no. But my willingness to follow my own trail has taken me farther than all of the research I’ve done on every aspect of training the “right way”. Do I think I know better than Rippetoe, Wendler, Burns, or Lilly? Not even close. I’ve read Practical Programming for Strength Training and  Scientific Principles of Strength Training and I actually understand both of them with all their fancy science, so it’s not easy to disregard conventional wisdom from people who know far more than you do. In this case however, it is an absolute must. You see, I’m training and doing all of these crazy things for one monumentally outlandish goal. I’m trying to break a world record in the lift that best defines pure strength despite having Parkinson’s. I’m trying to make a statement that will be heard and seen by the entire PD/Dystonia community: That in spite of all that this disease has stolen, I can still be me.

In my case, I can say that pushing too hard and following my instincts to my own path has led me to right where I need to be. In this case I’m actually not talking about being 21 lbs away from a world record. What I’m referring to are the almost daily affirmations and encouragement I get from fellow PwPs that seeing what I’m doing is helping them. That my crazy idea to share a story that I would have much rather kept private is doing exactly what I hoped to accomplish with this new and NOT improved Life version 2.0. Now it’s easy to see, being content with average, trying to be like everyone else and staying in the little box that life hands you on day one? That would be nuts.

VALOR AND GRACE – My Daughter the Shield Maiden

My first grandchild Arya Grace Gutierrez was born 3 weeks early, capping off the fastest warm-up to grandpahood ever. While my daughter was shocked to find out about being pregnant when she was already 5 months along, it was another shock to find out that the doctor wanted to induce labor on Friday after a normal checkup revealed low amniotic fluid. Nothing emergency or dangerous, just life saying, “Don’t forget, you’re on my schedule!”.

Above is a video slideshow I made for her when she gave me the news. I wanted to let her truly know how much I believed in her.

This has me thinking philosophically (I know, big surprise!), and in this case, learning a lesson from my 20 year old daughter Brittney (now also known as Arya’s mommy). My daughter is not naive to the life-changing impact this beautiful event would have on her. She  and her 19 year old sister Ashley have helped to raise four younger sisters with their mom and step-dad. She knows the true impact this event had in store for her life. With only three months notice, rather than the usual eight to nine usually given to first time mothers, she never let the event overwhelm her. She handled it with grace and valor. She accepted help when it was needed and bore down and fought like a Viking shield-maiden when it was time to plant her feet and push. At 6:01 pm last Sunday, my daughter’s life was turned beautifully upside down by a 6lb, 3oz miracle and she took the first step on a strange new road with unblinking courage.

As a father, it’s natural for me to take pride in my children, and I gladly help myself to heaping portions of it with all four of them. While I hope that my love as her father has been a good influence on her, the truth is, this is all Brittney. She knows the path that she is starting on is one that she will never leave. She knows very well that her life will be infinitely more challenging and never again will it be centered solely on her. In spite of the height of the summit suddenly before her, I saw my little girl step boldly onto the first steps of that lifelong path leading up the mountain that is parenthood.

As a parent, it’s only natural to worry about your children being confronted with the great difficulties that life will inevitably bring. Could we possibly have done enough? There is so much for them to learn and so many things to fear. Did I give her everything she needs? How can I ever let go? What I learned from my daughter and Arya is that we never have to let go. When they’re ready, they will step out from the circle of your arms, grab your hand and walk beside you.

One of the greatest memories I will ever have is holding her hand as she fought to bring Arya into this world. She laughed and cried as she took her new baby from the nurse, never showing a shadow of fear or hesitation. In that moment, she took up her shield and became Arya’s guardian, leaving the safety of my protection and setting out to guide her own family.

Thanks to being able to witness my daughter’s personification of valor and grace, I am reaffirmed on my own course. Regardless of the new challenges rising before me, I know that I too must simply step boldly forward and continue the next chapter of my journey without fear. When you start learning lessons from your kids, you know you’ve done something right. In this post, I am not the teacher. Today we all follow my daughter. She is strong. She is brave. She is a Valkyrie Shield Maiden and her steps through life will follow a noble path. She is valor and grace. She is a mother.

Valorandgrace

P.S. I want to take this time to appreciate my ex-ex-wife Kristi and her husband John Paul. I am so relieved that the two of you have come together and created a great home for our girls in a time when I can’t provide enough and am overwhelmed just taking care of  myself. There is a good chance that later this year could see a huge improvement and a return of the old me via DBS brain surgery. Until then, I rest easy with them under your roof. Expect regular visits from Grandalf, though I do promise not to mark up your door with my staff. To Nick, I have to say, you have started off on this path very well. Stay true to it. Being a great father comes naturally when you put the needs of your family ahead of your own. I believe you can do this. You have my trust.

 

A LIFE

What is a life? The entirety of everything we will ever know, no matter how long we may live, is the briefest fleeting fraction of an eye blink on the scale of the universe. Even if we were to ever conquer the aging process of our own bodies and measure our lives in centuries rather than decades, our experience wouldn’t equal the scale of a grain of sand on a beach. Looking further, let’s imagine we miraculously unlocked the secret to transferring our consciousness to new forms, allowing us to learn, live and love for 10,000 years. Even in that far off level of conjecture, our maddeningly long lives and all we would ever feel and know would still not equal that grain of sand.

When some people come to this realization they feel infinitely small. The question of why we are here no longer matters. If you allow your vision to be narrow, if you cast your eyes only on your own feet and what’s under them, life loses value. What you do with the time you have becomes an afterthought. In all honesty, to many, it’s not even an afterthought, but rather a non-thought. The shear repetition of each day mesmerizes and blinds us to the opportunity we have simply by being born and given a chance to walk our road.

A few weeks ago, my step-dad, Dennis “Bud” Shingle, taught me the most important lesson that he ever passed down to me in the three and a half decades that we shared. At 9:00pm he joked with my brother in the kitchen as he warmed his dinner, then he went to his desk in his bedroom, and sat down at his computer, most likely preparing to enjoy his flight simulator. Sometime very shortly after that, he had a sudden heart attack and was gone. His bedroom doors were open and my mom and brother were in the front room but he didn’t even call out. He simply closed his eyes in his chair and his journey through this life was over.

My purpose in exposing this story today is not that life is short as it might appear to be. We all know this. The lesson that I got from Bud was on the importance of how we deal with the stones that life puts in our path and what can happen when we decide to start carrying them with us rather than sweeping them aside. If we collect these stones as we travel our path, their weight will eventually bring us to a halt, leaving us to stand, holding on to our heavy burden while the world moves by.

Let me first make one thing abundantly clear. Bud was a great guy. He had an odd but great sense of humor and for most of his life was constantly joking with razor sharp sarcasm. He Loved my mother and raised my brother and I with her for 35 years. But Bud was a pessimist through and through. He learned that from his father, I’m sure. His way of looking at life was not to get your hopes up to high so that you aren’t disappointed. In spite of this “preparedness”, whenever life would eventually disappoint him, it would still hit him hard, leaving him to focus on what had been taken away. Life did disappoint too. When I was young, his family lost their travel agency that was going to be his. He had to take a job at Sam’s Club to get by for a few years and would eventually settle in at as a technician rebuilding aircraft parts for a company that would eventually be bought by Gulfstream.

Over the years however, the jovial man with what many people see as a “practical” outlook kept collecting those stones and, truthfully, there were only a couple of large ones along the way. Despite being a heavy smoker and daily drinker his health was great, even if he did carry an extra thirty pounds or so. He had a devoted wife and a home of his own. Eventually though, he found what would be his stopping stone, and when he found it in his road a few years ago, he sat down and stayed with it.

As happens to many of us, he was let go unceremoniously from his job with Gulfstream. At his age this was no doubt a huge hurdle and he simply decided he wasn’t going to jump anymore. He decided to try to make it through for the last couple of years before he bacame eligible for Social Security. That decision is not what really hurt my old friend though. The problem came when he spent those next few years polishing the stone collection that life had given him. His focus became everything that had hurt him and how terrible life had been. My mother, who is nothing but a bright light in this universe had to struggle with and convince him to enjoy anything. He eventually became resentful of anyone being happy around him to a certain extent.

One of our last conversations was extremely confrontational as I made an effort to verbally defend my mother. When I tried to tell him that he should really look at his life and realize how lucky he was, his response was immediate and crystal clear lens on the way he viewed the world. “If I was in your shoes, I could see how you might feel that way.” was his response to me referring to my Parkinson’s Disease. I never took it as an attack, but it was a refusal to change his perspective. His attention was consumed by what had been taken away and how hard things were.

In the end, one of the most comforting thoughts on his passing was the same that we all think when someone passes after a long illness. “At least he’s not suffering now.” we realized. Imagine that, a healthy man, who had basically willed his life into a state where his loved ones were relieved for him on his passing.

Our family is moving on now. My mother will shine her light on her first great grandchild in one month (I have chosen Grandalf as the grandpa name for little Arya to call me). What I want us all to learn from Bud is the importance of how we choose to perceive our struggles and obstacles. For your own sake, sweep those stones off the path and move on.

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I have read that science calculates the probability of you being born as you are is 1 in 400 trillion. You are the only one who can walk your path, so walk it. Life is struggle. If you kept trying for another shot at your life, you would fail 400 TRILLION times. The fact that we are given such a tiny window to experience anything at all only makes that time more valuable, not less. I may have come to this realization the hard way, but I am honestly very glad I came to it. If the price I have to pay for the chance to wake up for the second half of my life rather than stumbling, hypnotized, from stone to stone is a limp, a shaky body, brain surgery and a life of harsh medications then I will pay it.

I will likely never have many of the things I dreamed about as an young man and this difficult life I’ve had will only get harder. I, however have been shown the way to keep my path clear with my head up and my eyes focused on what I do have rather than what I’ve lost. Don’t wait 400 trillion times for another shot. Live this one. Thank you Bud, and Godspeed.

OBLIVION – the highest of stakes

This post is the companion piece to my latest video:

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OBLIVION – by Josh Robinson

Living with Parkinson’s is like climbing a snowcapped mountain. Every hand and foothold is a fight to simply maintain position. Every slip, every ability lost brings the question “How much more can I lose? Is this my avalanche?”. When holding on above this abyss, there is only one thing to do…put your best foot forward and climb.

This song “Oblivion” by The Briggs has always been my “Parkinson’s Song”. While it may sound  like a dark image of staring into oblivion, that is the truth of what we must do on a daily basis. There is strength in accepting that and, as the song says, putting our “best foot forward” without fear. We may one day fall, but until that day comes, we climb. We climb our crumbling mountain and every time we fall, we gear up and climb again.

This is our life and we accept it. Many Parkies that I have spoken with are actually thankful for the greater appreciation for life that comes with this affliction. I know I am. That’s not to say we are oh so happy we have received this gift of enlightenment. Far from it! This “gift” came wrapped in fish-market newsprint and it was not a fresh catch. But if you want optimism, find a Parkie. (Just be careful about using that nickname unless you happen to be an anointed and esteemed brother or sister of the Loyal Disorder of the Almighty Tremor!)

Seriously though, I have never known a more steadfast and loyal group as the brothers and sisters I have found with this disease. When I was first diagnosed, my thoughts flew towards carrying those who despair at sharing this condition because I was very young (for a Parkie anyway) and very strong. I knew I would do great things in spite of my diagnosis. It turns out that I am truly nothing special in this unlucky fraternity. I haven’t met a single PwP who lacks awe-inspiring amounts of courage and grace. Truthfully, I have more often been myself carried and inspired by a tiny warrior princess, two girls of an age with my daughters and a man old enough to be my father.

It shouldn’t come as a surprise, while it’s true there are many afflictions that are far worse, this disease has it’s own special weapons of mass despair and they demand that we summon the entirety of our greatest human qualities in our communal defense. To fight this fight requires that we vigorously work a body that is being robbed, very painfully for some, of it’s mobility and grace. This bastard of a disease attacks and steals the very weapons we need to fight off it’s advances. The after-effects of our exertions are often painful rigidity, tremors and extreme fatigue. Yet almost every Parkie I know powers through these simple yet impossible sessions of mild torture with a zeal that exceeds the majority of the elite lifters that I know. Of course they do, their stakes in the game are far higher than any young athlete dreaming of even Olympic glory. The price for denying our duty is not death, but rather the loss of living without the loss of life. If we don’t take up arms in our daily battle, our lives will likely end in a wheelchair or even a bed. Which fate is worse?

Even the dreaded C-Word gives a decent amount of hope to many who it besets. Please, take no offense, I do not make light of cancer. It ruined my father’s life for almost thirty years even after he defeated it. It’s a war that I am also familiar with, but while cancer steps in the ring and gives it’s opponent a fighting chance, Parkinson’s has paid off the judges and rigged our bout. Should we give in to despair and throw in the towel when the bell rings our outcome is certain. Parkinson’s call to us? “Fight me in this sham of a contest. Fight me, or face oblivion.”

Contrary to common belief, oblivion does not always mean utter destruction. Rather it is defined as “the state of being unaware or unconscious of what is happening“. This is a more accurate description of PD’s grand prize, to be an immobile witness to the still moving world around us. To receive the embrace of friends and family but to not be able to return it. These are our stakes. Our game is No-Limit Texas Hold ‘Em and the chips measure out the time we fight for.

All is not lost, however. For every Parkie knows that we have the power to shape our own destiny. We have our medical miracles, like many diseases. While they may not offer a cure yet, they do offer us time, and we know very well now how valuable a gift that time is. We also must know that as long as we keep up our fight, our odds of avoiding a wheelchair or a bed get better and better. We also must know that we fight, not just for ourselves, but to encourage those who stand beside us in the trenches, our brother and sister Parkies as well as our family and friends who gain strength in witnessing our struggle. The gift that has been well hidden in this malady is a life with true purpose. We have an opportunity to truly lift up those around us by simply fighting our battle with dignity and courage. I believe this is a great gift and we were given it because we are strong enough to bear it. So stand, stare at oblivion and smile, knowing that your fate is truly your own to define. It holds no true power over you. Put your best foot forward, and live your life without fear.

***A special note on the video: In the video I show a few of the movements that I have found effective in improving my balance and coordination. They are fairly advanced, but if you can still safely do them, they may be of help to you too. First and foremost is the squat. In any form, even a simple air squat with no weight, this movement is one of the most important movement patterns that we have. Practicing it and finding ways to challenge yourself with it will be one of the best ways to increase your strength and balance. I personally take this a step further with walking lunges (at 1:40 in the video) and one of the most hated movements in all of weightlifting: the Bulgarian Split Squat, which I make more difficult by adding chains to really challenge my sense of balance. When first shown at 0:36 my partner Tony is having to help steady me to get my rear foot onto the bench behind me while I prepare to split squat 95lbs plus 40lbs of swinging chain. When shown later at 1:25 and 2:05, a few weeks of practice has allowed me to double the chain load to 80lbs and no longer need assistance getting started. The body still responds to demands that you place on it as well as to systems that you allow to fall into disuse. Find ways to challenge your body’s ability to balance and coordinate movement and it will know the systems are still needed and make efforts to maintain them. That is the essence of training and a key element in maintaining quality of life in general as well as fighting this disease. Here are some links to Youtube videos giving instruction in these movements from easiest to hardest:

1. Air Squat & Squat Fundamentals 2. Goblet Squat  3. KB Goblet Squat Halo

4. Back Squat 5. Integrated Walking Lunge  6. Bulgarian Split Squat

THE SMALL GIRL WITH PARKINSON’S

Kári Sigurðsson – Alive (Extended Version)
A few months ago, Sunday’s were for writing. Then, Parkinson’s stepped it’s game up. Apparently it didn’t like the kick in the nuts I gave it on November 7th.
Yes, I assign this disease a personality. I humanize it. It gives me a face to drive my elbow through (much more satisfying than a simple punch). I’ll digress here and go merrily off onto a violent tangent at my adversary’s expense (ahhh…dat ground and pound doh…good times). So after the Sacramento Open, I took a much needed breather…from everything.
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SCENE: Josh sitting on the stool in his corner after round one. Cole Goddard, Jimmy Le, Daniel Logan Pearson, Mike Preston, Tony DeVaughn, shouting encouragement through the cage.
“You cut him!”
“He can’t stand with you!”
“Sweep the leg, Cobra Kai! “(yeah, I went there.)
Colby Robinson holds the ice bag on the back of RvP’s neck while managing his cuts.
Benjamin Riddle: Trying to hold his fighter’s attention-“Alright you hurt him bad there at the end, but his jab’s doing work. Keep that head moving, he’ll over-extend, shoot and put him on his back. Make him pay the iron price.”.
Josh hears but his eyes are fixed on the opposite corner. Not to see if he has really hurt the undefeated champ, everybody knows that Parkinson’s is connected. All of his fight’s are fixed, the only betting action is on how long the challenger can drag out the fight.
RvP : Staring across the bloody canvas to leave no doubt (telepathic voice-over)- “We’re going the distance punk, you don’t have my first KO in you. This is going to hurt you. After this fight, everyone’s going to know your game and give you five rounds of punishment.”
SCENE: RvP is standing early, eager for round two. The bell rings. RvP takes the center, eats a jab looking to invite the big right cross and set up a double-leg takedown into side-mount. He let’s his hands drop a bit, throws a body shot, inviting… PD jabs once, twice, connecting, then winds up the right…
RvP: Smiling, in thought-“There it is…” He ducks under the right cross and drives his shoulder into PD’s ribs, throwing his hands around in search of the far leg to complete the big takedown…
SCENE: The leg is planted firmly out of reach. He’s the one who’s been set up. PD is a veteran who fights nothing but steel-spined warriors. He pivots as RvP slips forward and takes his back, coming down on top of him. He drives  his left forearm under Josh’s jaw, crushing blood and airflow as he grabs his right bicep, locking in the choke and using the right hand to drive RvP’s head down harder into the blade of the forearm buried into his neck. Our “hero’s” vision is blurring around the edges. The world is going red, not black.
Parkinson’s: Whispering in Josh’s ear-“Sleeeeep. You were never special. I only take on the strong.” As he cranks harder on the choke, using his legs for leverage, he lifts RvP’s head, allowing the crowd to enter his fading, red-washed vision.
RvP: Thinking-“Why drag this out? It’s only going to get harder. Let’s take a break and ease out.”
SCENE: RvP won’t tap, but he starts to relax his neck and let the fight be over. Then he hears the crowd, all fighters who have gone the distance in their own bloody wars. They are a screaming mob of hazy revenants, ghostly to his pressure-damaged eyes, but one is clear. She is small, but her voice is crystal clear and familiar.
SmallGirlWithParkinson’s: “Get up. I did.”
RvP: “Thank you.”
SCENE: Despite the full Rear Naked Choke being completely locked in, it is too early in the fight and this “hero” is just too strong. Tucking his chin with all his might he easily separates the arms locked around his neck. As air roars in the world returns to focus. Robinson rolls…
Fade to black…until next episode.
The above overly-dramatized bit of fiction is just my metaphor for what really happened over the past few months. I was on top of the world even though my record didn’t stand for long (It never even got posted!). Then PD stepped it’s game up. Tremor pretty much non-stop, insomnia returned, and if you’ve seen me at work lately, you know my limp is as bad as it’s ever been. Usher in thoughts of early retirement, lost pension, depression’s triumphant return and my old pal loneliness and it’s no wonder I checked out. Forget 7,447 days, I didn’t want 7 more days like that! A clarification here: I’m not talking about suicide here, though I completely understand when people do think about it. I’m just saying I didn’t have the energy to fight. Honestly, I felt like a hypocrite. I’m still Stage 1 (I think) and I get knocked down? Some inspiration!
Then, scrolling through my facebook feed, I noticed a WordPress link from one of my Parkinson’s support groups. This was the first fellow blogger with PD that I had seen so of course I clicked the link and read the latest post…and then through the rest of the night read the whole entire blog. It’s called Small Girl With Parkinson’s by Meg Bernard.
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She’s tiny, but she just may be the strongest woman in the world. Not only that, but she shares a distinct writing style similar to my own. If you do yourself a favor and click the link that will be permanently mounted at the top of my blog, I’m sure you’ll see it. It was the best use of a sleepless night I will ever spend because I realized, no one is alone in this. What she has survived is beyond incredible and you need to read her (very well written, I might add) story.
I’m sharing it today to remind us all that we’re all going to fall down, feel defeated and maybe even give up at times. Here’s the secret…THAT’S OK! Open yourself to your inspiration wherever it may come from. There are no rules in this fight. So you left the ring? Grab a metal chair on your way back in and come flying off the top rope with it! As for me, thanks to the SGwP, I’m going to get back after a certain crazy goal I’ve had since this thing started. Seriously, does anyone know of a woman (even a self-titled Warrior Princess) who can lift 700 lbs from 1300 miles away? I do. Thanks Meg. Sunday’s are for writing again.
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635 for a 30lb PR while I was supposedly “down”. This is just 31lbs away from the national record. You’re not down until you stay down.

 

BEAUTY AND STRENGTH

Falk Wünsch – I Have To Tell Something

Beauty is difficult to define. That’s a concept that I’ve thought about for some time now, and when you live your life in a constant struggle to simply maintain who you are, finding beauty becomes one of the most important things you can do. It gives us both the strength to keep moving forward, and something to move towards.

For those of us who carry a burden like Parkinson’s, it’s often necessary to find it in dark places. We are like a lone knight, standing watch while staring into a far too rapid sunset. The light dives for the horizon while we try to protect what’s ours. A steady hand. A firm stride…our independence. On this lonely vigil, if all we see are the shadows and the night, then why do we stand?

Our armor is heavy. The drugs, the therapies… often painful and an affliction themselves. Why not cast it aside?…

Because we choose to see the beauty behind the shadow.

Since joining the Parkinson’s community three years ago, I have seen strength on a scale that exists in no gym you will ever find and beauty beyond my ability to describe.

Strength is defined in many ways. It’s what I am known for. It is both the ability to press the attack and to endure defeat. More than that, it is the ability to return to the field, day after day when the outcome is already known.

While I am humbled when people are motivated by it, my strength is nothing compared to the strength that fills the smiles you will find in any children’s hospital.

I am not special in my strength or determination (and I am most definitely not beautiful). I am one of many, a single soldier in an army full of heroes.

Strength is to fail while daring greatly.

Beauty is the grace to accept the helping hand with dignity intact.beautystrength

Beauty is to stay and share your light and to carry your children and your fellow soldiers a little farther down the path.

Why stay?…Why struggle?

Because there is beauty here.

While we may fear the night that is falling on our watch, we should greet it with open arms and a smiling heart. You see, that day that we so desperately tried to hold on to? It had the light of one star. In the night, we are surrounded by them.

Strength is to choose life when life means pain.

Beauty is that light that survives through  the cold void of space and time to reach us from impossible distance.

Where beauty and strength unite is in the eyes that choose to see that beauty, and smile despite the pain.

KEEP YOUR GUARANTEES, I’LL TAKE THE STORM

Going through some old posts with a new friend, I found a few from the start of this blog that remind me the course I’ve set myself. I’m proud to see that a tough year hasn’t caused me to drift. The winds have been fierce, but so far this aging battleship holds hard and true.

Robinson vs. Parkinson's

It’s 3:45a.m. and insomnia is back. I had it beat there for a few days but there’s no getting around bio-chemistry. You see, the main problem with Parkinson’s is that it causes a deficiency in the neuro-transmitter Dopamine which is responsible for communicating movement demands to the body. The medicine that I take does help the symptoms, but it’s just not very smart. It doesn’t make me hyper at all but it just floods the brain with neuro-transmitters which makes it very hard to even want to sleep at night. So I’m bummed because I need to sleep. It is vital for recovering from training. In fact, with the amount of sleep I’ve been missing my body’s Testosterone production is surely almost non-existent. This mystifies me as to how I’ve been able to keep making gains in my training in spite of this deficiency. Mind over matter? Maybe. I strongly…

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