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!).
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.
I also recommend Victor Frankl's Man's Search for Meaning.
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...
LITTLE ZEN MONKEY
PASS IT ON DOT COM (USED TO BE VALUES DOT COM)
Random Parkies' blogs like this one SHAKE RATTLE BE WHOLE
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 have a 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.
This one is at Yosemite
This one is at Muir Woods