When I met Jimmy Choi at the Second Annual Parkinson's Circle of Care Alliance Event, I couldn't help but notice how much his hands tremored as he huddled close to all the people he took pictures with.
And he took pictures with anyone who asked.
Far from being a rock star / actor with a price for autographs and pictures, which can get costly for some "stars" and other known quantities (for instance, at Aliencon, pictures went up to about $150 with the 2 main stars together), Jimmy was hanging out in the hall introducing himself to fellow Parkinson's warriors like you and me before his presentation. Between discussions on legal advice and a talk by Dr. Stephen Gollomp, Jimmy and his wife Cheryl were talking to fellow Parkies like they were old friends bumping into one another at the Appleby's. He was even the one initiating the conversation!
And people, younger and older loved it. We felt a part of something like the sea of hands raised up during an earlier presentation when asked, "Who has these symptoms?"
Is this how an American Ninja Warrior really is when he's not beating nearly half the field in how far he gets in the competition? Yes. A man who has run American Ninja Warrior in 2017 and 2018 with those same shaking hands seeming so stable as he flies through the air with the greatest of ease is just like me or you or any of us, even if he's an outlier.
But when you listen to Jimmy, he really is just like us. Some days Parkinson's get him, too. He talks about the nightmare fall he took with his son in his arms (his son was unhurt, though Jimmy knew he had to change into the new him). He talks about hesitance to do things like sign up for American Ninja Warrior or even get out of bed.
Except something in him or outside of him just does. Maybe it's his daughter asking him what his excuse is for not applying to American Ninja Warrior in 2016 after Allison Topperwein, another person with Parkinson's, competed on the show. Maybe it's marathon training. Then again, maybe it's not a trip back to 240 pounds and a cane. Maybe it's the fact that, by nature, he's an affable, athletic, and funny guy, a leader and inspiration, but still someone you'd share appetizers with at the aforementioned Appleby's while talking about life.
When we meet our heroes, we have this elevated ideal of who they are and what they do. After all, this is a guy who Michael J. Fox sends messages of inspiration to. This is a guy who does push-ups with 100 pounds of metal plates in a backpack.
But when he talks about how people see him as some exceptional level of competitor that they can't be since they have a nasty condition, he opens the door to let them all in on the secret. While nobody should have to join the Parkinson's club, they can all get active and beat the rigidity to some degree. After all, he's not our only athlete, which is evidenced from the presence of Rock Steady Boxing's athletes and all of us who do things to stay motivated, no matter how slow or unsteady. It's also evidenced by other runners and athletes along the way, too.
This is just the message that I need. In my own life, I find myself shaking a 2 month void of feeling like Parkinson's finally caught up to me. The mantras and the pushing back, the shaking off problems, the worry about the future, and all the responsibilities as well as the lack of responsibility; suddenly all of these things combined into a perfect storm. I needed to see someone who was just like me making it work because I no longer was (though I'm coming back to me again).
I'm glad I met Jimmy that day. I'm thankful for the opportunity to take a picture with him and my wife in the same image.
I'm glad that my mom could just go over to him and talk about appreciating who and what he is. I'm glad that his talk inspired my dad, who was also there to support me in this Parkinson's journey. It's not easy to watch your children go through this.
Then again, it's not easy to see anyone go through this, so seeing someone who seems to be winning the fight is a necessity.
But here's the thing: you and I are just like Jimmy in that we have something that sucks, but we fight back against it. Some of us are just like Cheryl in that we have someone we love, who we support, who is going through this storm, too. Others of us are just like his children, growing up inside the storm and learning to fight it off to become a beacon of hope for all.
What a run!
In the end, the real victory that Jimmy is fighting for is hope. He's prouder of raising $250,000 for medical research and tests than he is of his run. Getting medicines and treatments ready for medical testing is paramount, and his words of encouragement for that are incredible.
If you're interested in taking part in a study, see HERE.
In the end, we're pretty much the same. We're not one size fits all. We're good people with a bad lot in life. We're fighting back. As we do, we're making connections to one another. Hopefully, someday we can all hang out and do appetizers at an Appleby's somewhere.
In order to spend time working on my supernatural books and to not go into depressive overload from the news, I am working on my next novel with the majority of my free time. You can read about and from my books HERE. You can buy them HERE.
My only note on the news is to STAY SAFE PEOPLE! There's a hurricane brewing and you matter. Find shelter, support, and supplies. This one is for real.
+++
Nevertheless, I am revisiting and updating older posts, too. Many of these were written before I had a lot of readers, so I'm going to give people a chance to reread them. Generally, I'm changing them very little, though I am adding search words, pictures, links, and some newer thoughts to express more things I've learned since then.
I plan to add one every couple days until my 2-year diagnosis is 90% certain anniversary on September 27th. November 1st was confirmation, but I knew for sure when I went to the neurologist that day. To me, this is the real diagnosis day since that one was so foretold.
The first post is from 2016 and deals with staying positive in spite of symptoms and diagnosis. It's called "Confident, but not the Demi Lovato Song."
The second post is from 2016 and it's a hiking trip in the snow and ice to Heberly Run with Rusty Glessner and Steve Rubano. It was a reward for kicking Lyme disease.
The real life influences of my book - my friend Will anda Heidi's kid Liam (above) and my sister's stepson CJ (below). My cousin David is at the top.
Summer is a super-duper time to be out and about. While I like hiking, I realize that this season demands less-challenging hikes. Most times, it's about being indoors and going to see a musical like The Hunchback of Notre Damewith my wife because it's too risky to face the exposed heat.
With regard to my experiences with Mr. Hugo, I couldn’t read the French names in Les Miserables when I was in 7th grade, so I tried to abbreviate them. Too many similar abbreviations led to me not finishing that book, and uh, yeah… I’m a slacker.
A few years ago, my wife and I went to a performance of that show in Lancaster, Pennsylvania, and I learned that “to love another person is to see the face of God.” I also learned that our local theater (the Fulton) is spectacular. I bet yours is, too. This theater is huge, so you would kind of expect off Broadway, but to us, it’s hard to see the difference (even for my wife who has “experience” with this stuff). Even the Ephrata Performing Arts Center, our local town playhouse, is always spot on for the couple hundred people who can fit in the room.
As a result, you don't need to travel to the Big Apple to enjoy musical culture, so consider an escape from the heat in someone else's air conditioning!
Our previous favorite was Beauty and the Beast. This time, we debated if the 100+ person cast took Hunchback over the top. After all, it included a huge choir behind 5 huge bells and a 3-level almost 30-foot bell tower. In the end, my wife, my mom, and I decided it was wrong to compare 2 next level awesome shows.
I get that musicals aren’t everyone’s cup of tea. My dad tried West Side Story a long time ago, and he still reminds my mom he did. Nevertheless, he feels musicals are a punishment, like “the cooler” in The Great Escape.
Prior to meeting my wife, I only saw a few musicals / plays. I went out for Annie Get Your Gun to be with a high school girlfriend. I saw Shakespeare’s Twelfth Night with a former girlfriend. Finally, I saw Aristophanes’ Lysistrata because I like Greek plays. At least I enjoyed the latter 2!
It took my wife to convince me that I could be a “musical guy” (sometimes), too.
Hunchback shows universality on many levels. The evil of Claude Frollo was played with bright red lights to portray him as the devil. Here, he personified a "Me, Too," villain as he lusted after Esmeralda, offering her unethical choices or death. I have to say that even though this was a Disney play, the idea of possession of another person, with or against their consent was played off as the crime against humanity that it is.
Additionally, Quasimodo’s true inner spirit wrestled with his outer disabilities and lack of confidence in grand fashion. Occasionally, he broke through to show true strength. What's more, he fell in love with Esmeralda, who was ostracized for her beauty.
Additionally, the quest for identity wages as the Gypsies battle for the right to be. In a battle against tyrannical control, the only hope is to show the world that they matter.
Times haven’t changed in 500 years. Heroes haven’t changed either. No matter who we are, we have the chance to let our voice be heard. The powerful statement of love that culminates this experience is not a Disney kid’s story, but instead, it is 2 people from 2 different worlds who have found one another to be 1.
No matter what group we are a part of online, it's a good place to be. However, we need to mix and mingle with the world, too. We may not be as good at belting out tunes as Rebecca Ferguson (Jenny Lind) in The Greatest Showman, but we have the right to speak and be heard by the world. Even if we find our voices growing quieter, the right people will stop and listen. The point is to open ourselves up to the world. Never let a person make you feel inferior, unworthy, or voiceless.
So on these 100° days, when you have the choice of a day out at a minor league baseball game, a walk in the park, or being in the air conditioning, ask yourself if you want to risk Parkinson’s heat injuries or needing to drink gallons of water to equalize hyperehidrosis’s evil powers. I may like baseball, but I love being 98.6° for the people who love me.
You do, too. Protect yourself this summer with smart temperature-related choices. If musicals aren't your thing, consider going to the movies or playing fun games with others. Whatever you do this summer, have fun with it!
While I was in California on vacation, I received a Facebook message from a person asking for positive thoughts on coping with his Parkinson's disease diagnosis. If I had access to my trusty computer keyboard, I could have whipped up a response in no time (I've been on this for about 2 hours, but that's not much time for a writer), but I was on the road, and yeah... typing on a cellphone isn't ideal, so I went with the simple version.
In today's world, we take for granted that we have Internet access pretty much everywhere, and when we get to those connected spots, there are computers to hook up. However, this is not true, as there are still places that lack for connection in the lower 48. Most of these places are either in the desert or the mountains, but there are also sections in places like the middle California coastline (where we were), which not only don't have cellphone connection, but they also have mega expensive gas!
And yes, before I go too far, there are towns, but they are far apart because it's beautiful on the coast, and we don't need a million towns interrupting nature when we can have lots of elephant seals instead. If you're not sure what that means, see the video below.
That said, we do need clumps of civilization in between the somewhere and nowhere we encounter across this great country. In these towns that do exist, since things have to happen, we need food and supplies, and in the bigger places, there have to be hotels, motels, bed + breakfasts, souvenir shops, and amazingly enough (since they still exist), libraries.
Prior to the message, I went looking for one of these "antiquated" libraries since I only had my cellphone and Kindle with at the time, and I needed to finish my grades (the program we use for online learning isn't compatible with my phone, and it's not always WIFI ready for Kindles in other road stretches or tiny towns). Cambria (around San Simeon) was a no go, so we went to Palo Robles (inland a little bit) instead, and I graded there (much thanks for that!).
Heading for Yosemite via Angel's Camp, I wasn't thinking I would have much luck to answer this person's message, so I was unable to type a deeply meaningful and lucid response that the magnitude of the question demanded, but I did type some things, which I hope went over well.
Nevertheless, now that I do have time, I want to compile a list of things that I would want someone to tell me upon being diagnosed. Granted, I'm a stoic, and that means I need writers I don't live with telling me to tough it up and live life the best I can with the cards I'm dealt with. This also means that I'm a feeling human, so I need people who I do live with to tell me that everything is going to be all right (and I in return need to say this to them). If this sounds like a contradiction, it probably is, but it's me all the same.
Not knowing the person who wrote me, I was humbled that someone would ask my opinion. I often think of my life in terms of the things that I struggle to do right, but I'd also like to think that I have my current attitude to Parkinson's, my marriage to my wife, and my writing as things that I do fairly well. Thus, I was empowered by his request. Additionally, his request also made me want to write this better now that I'm home.
So here it is.
1) Parkinson's isn't the end of the world. Yes, it's a progressively acting neurodegenerative disease (that's a mouthful), but it's not King Kong and Godzilla rampaging through the city today (instead, it kind of starts as a fly buzzing around your head and landing on your face every day). What does that mean? It means you have plenty of living to do; however, you have to live this life with tremors and some other conditions that most people don't know about for a while. It's not easy to put them to the side, but you can do it. I believe in you. You seem like a good person, so you have that going for you, too!
2) Yes, someday, you'll have other issues that people will notice (and you will, too), but I can't tell you when or if you'll get to all of them. Besides, if King Kong and Godzilla rampage through the city tomorrow, it's not going to matter anyway. Life is like that. Sometimes other things take precedence, and then we need to fact up to those. Besides, we can't predict the future, so get living today (as much as you can, spending time with the people who love you and that you love). There's a lot of fun things to do in all sizes, shapes, and forms.
3) Start thinking about the bucket list. Make these things happen. Yes, you are running against a clock for how long you might be able to do some things, but you're not Dostoevsky facing the intensity of coming back from the edge of life with the heavy responsibility of living each moment perfectly. Besides, there are other options for taking on pain and suffering and pessimism. With that, even if you don't like country music, you should have / could have been listening to Tim McGraw's thoughts about life as he watched Tug's final chapters. Personally, I think he's right on. Bring on Fu Man Chu.
4) You're a great person, and you're still you. The only difference is now someone has a name for your tremors or the symptoms you presented. Stop thinking about Parkinson's 24/7 (I know that sounds easy for me to say, but I'd like to believe you can leave that at home). Family, friends, job, hobbies, and commitments outweigh Parkinson's... no matter what conditions it plants between your brain and your toes. Yes, they'll all have questions, and you'll have to answer them, but you still have a lot of memories to make and gatherings to attend. Make the most of it!
5) Stay in motion. Parkinson's is all about rigidity and exhaustion. Some people rock steady box. Others go dancing. I go hiking. Whatever you do, just do it! No hobby is wrong if it keeps you active.
6) GARY PAULSEN (Hatchet author) - “He did not know how long it took, but later he looked back on this time of crying in the corner of the dark cave and thought of it as when he learned the most important rule of survival, which was that feeling sorry for yourself didn't work. It wasn't just that it was wrong to do, or that it was considered incorrect. It was more than that--it didn't work.”
By the way, your middle school kids have probably read this book to wire themselves tougher. Stoics can read this quote as, "Man up. Do what you need to do. Your survival depends on you." Feeling people can read this quote as, "Sometimes, you're going to feel like crying or getting emotional. That's OK. Get it out, but when it's done, take a deep breath and do what you need to do. Your survival depends on you." 7) Support teams are essential. Find the people who love you and tell them what you need. Listen to their advice, give + receive praise, and work together for your betterment. Sometimes they'll get it wrong, but people genuinely mean well. BTW - Don't badmouth them and encourage them not to badmouth you when they hate on your Parkinson's in private. There is a difference, and besides, once you start belittling the person, things never stay the same (even if the person didn't hear it).
8) Everything you have learned is what you go into this rewiring with. If you're reading this early on, you have time to change before the next avalanche hits (avalanches can be anything - they are my expression for that moment when the bad stuff hits (loss of job, relationship, sickness, accident, diagnosis, etc.). Avalanche Day is your diagnosis day). The term "avalanche" comes from the Cory Richards (below) story. If you aren't wired tough to withstand the moment, then you need to find those who are and learn from them. Whether you're a stoic or a happy go lucky person, it's all about finding calm in the storm. I recommend whatever works for you. I say that as a client of myself, not a professional trainer. This woman writes about radical acceptance.
However, if you want to know what changed my attitude, Laurence Gonzales' Deep Survival and Surviving Survival saved my life the last time I went through a bad time in my life (2011's post school job hunt days). They outline the methods that work for me.
9) NOTE - if I was diagnosed in 2011 when my symptoms started or early 2015 when I was misdiagnosed, I wouldn't have had the benefit of 19 extra months of looking at the lives of heroes and role models to get myself in order. Frankly, I would have been a mess. Get yourself a hero and a code of life / philosophy / theology now. They will help carry you when you and your caregivers can't.
BTW, my numero uno hero in the world is Jackie Robinson.
Check out other cool uplifting things by some of my heroes like...
If you want a female or a funny or a great established blog, check out PERKY PARKIE
10) Here are some of the quotes that inspire me. Find ones that inspire you. It doesn't matter by who. Post them around the house.
11) Since you're a Parkie, you get Muhammad Ali (above), Neil Diamond (below), and Michael J. Fox and his foundation on your team!
12) When you're first learning, try to only view solid websites with real credentials like Michael J. Fox Foundation and Parkinsonsdisease.net when it comes to information. I could list a lot of good medical ones (NIH, Mayo Clinic, and other reputable Parkinson's orgs), but if you start looking for miracle cures R us, you're going to find them and get led astray (as well as snake oil salesmen and conspiracy nonsense on otherwise good blogs). If you go looking in chat rooms, you're going to find a million diagnoses from possible to impossible to rare to wrong. Some people know their stuff. Some want to help. If it's bugging you, see a specialist. The best thing chat rooms do is provide support that you aren't alone and allow you to make friends, while learning about the issues. For this, I recommend many of them. However, don't substitute them for doctor's advice and experience.
On that note, don't go looking for further down the line symptoms until you need to. Move into this step by step and adjust to the water's temperatures. There will be time to think about deep brain stimulation videos later.
13) Educate others, advocate for Parkinson's cures, respond kindly - don't go looking for a fight (for not using People First Language, offering help or just not knowing), document your experience, don't sit thinking the miracle cure will be here by Christmas, and live your life to the fullest! Whatever will be will be, but remember, we can be the generation to motivate a cure for the future - even if it will never be for us. For me, that is my purpose numero uno in this game of PD.
I thank you for reading this, and I hope it helps you and helps others.
Recently, I started blogging HERE at Parkinsonsdisease Dot Net. You can read my diagnosis story at that link. I encourage you to check out other bloggers there, too.
I blog regularly on my own and havea Parkinson's site on Facebook. I encourage you to like it if you would like to read more about my Parkinson's experience as well as read about me being the me that still does what the old Dan used to do before he had PD (and some new things he's learned to like since then).
Here are 2 other videos I took on vacation about my thoughts on standing up to Parkinson's.
The past few weeks at Chateau Glass have been rough. First, we've finally been getting out of the hospitalization issues (pneumonia and hypoxia) that early winter gave us and getting ready to go through the sleep apnea stuff (my machine becomes mine at 3pm today).
Then, we have the fact that every day with Parkinson's is a challenge, so yeah.
Sometimes, not even a cheesesteak can solve that.
Work has been busy for both of us, and juggling other issues of life with it, yeah... it's definitely a challenge.
With that, my wife had to have on the spot gallbladder surgery, which saw her miss 11 days of work. Yes, she's better now, but that smarts both of us (the patient, the caregiver, and the extended family support team). Fortunately, she had minimal surgery (on the left) and was in and out the same day.
Then, on Sunday, I got into a car accident that destroyed my beloved Yaris. Fortunately, both the guy driving the other truck (a Dodge Ram) and I were OK, though I'm shook up and sore on the left side. All things considered, so much of it could have been worse. My car, officially-named the Macho Dude, took the hit squarely and kept me safe. The Yaris takes a lot of abuse, but I loved mine.
Unfortunately, it "died" in order to keep me safe.
Before the accident, it gave me 251,000+ miles. My mechanic at Meineke said it owed me nothing. I would have liked 50,000 more miles, but life happens the way it does for a reason.
So I got another Yaris and went to 2016 (I had 2007), and while it's not new, it's new to me. I'm still thinking of a name for it.
We can contemplate being in the book of Jobs (see quote above) or the Book of Job (even though it's Biblical, it is taught in literature classes as well - essentially, why does the universe / God test good people with bad situations), or we can focus on the good things in life and stay as strong as possible while we work it all out.
Like I always say about my wife and me: "We'll get through. It's what we do."
If we don't stop to see our good opportunities in the midst of life, we might miss the chance to make someone else's life better.
One of my greatest do-overs in life would be to sing Christmas carols for Laney, a local girl who died on Christmas day a few years ago. Many people came to do it. It was national news. Even Taylor Swift played a part. At the time, I didn't investigate the story more because I didn't realize it was only 25 minutes away. It's a very life-affirming story, and now they have a small memorial to her gentle spirit. However, I was so caught up in me that I didn't see what I could do for someone else.
Regret, regret, regret.
So with that, I give you this week's list of things to stay half full and optimistic in spite of our own issues.
#1) Never give up an opportunity to give a real or metaphorical Toyota "Oh, what a feeling" jump when the opportunity presents itself.
#2) Get your family involved in your life. In this case, my mom did a Parkinson's walk with me a few weeks ago.
#3) Count yourself lucky when your family stands with you and supports you through tough times.
#4) Cherish your memories of family.
#5) Live vicariously through young people. Encourage, inspire, and educate them while having fun with them or supporting their fun.
#6) Look at the stars in wonder of how small whatever is in our life really is.
#7) Sit outside and let the world drift by at the fireplace.
#8) When life gives you night herons, stop to admire them and take their pictures.
#9) 1 word - massage.
#10) Take time to smell the flowers, especially the tulips, which are the official flower of Parkinson's Awareness. These pictures are from my wife's garden.
