50 Bits of Parkinson's Wisdom for Fifty Years
Today, August 26, 2021, I turn 50 years old. And it has been 5 years since Avalanche Day, aka the day of diagnosis (September 27.)
However, I am 10 years into tremors, so I have more Parkinson’s history. Because of these "milestones," I thought I would share 50 thoughts on life with Parkinson’s disease.
Things I am thankful for
- Health Union and WEGO Health are amazing. I’m proud to be a part of this amazing team's platform to create change for all of us. "Big props".
- I'm incredibly thankful for the love and respect of my wife, family, friends, and co-workers who are supporting me on this journey.
- The Parkinson's veteran who warned me that year 10 is a more difficult ball game appears to be onto something.
- He lived well and adjusted accordingly. He's still making it count on the Parkinson’s frontline for others. I respect his truth and am thankful to have heard it.
- No matter what I can and can’t do because of Parkinson's, life is good. In fact, 98.6 degrees is everything.
Coping with the symptoms
- For all of the random aches and pains that make me feel like Mick Foley when the Undertaker slammed him off the top of a steel cage, my mindset improved because Parkinson’s helped focus me on what’s important.
- If you don’t believe that, listen to Tim McGraw’s, "Live like You Were Dying." Yes, 2.7 seconds can be a lifetime (R.I.P. Tug.)
- The Foo Fighters’ song, "Times like These" and Neil Young plus Pearl Jam's "I Am the Ocean" work, too.
- Physical therapy is essential. Massage therapy is, too. Fifty years of life and significant time with Parkinson's makes that clear.
- Fortunately, like Yoda said in the Revenge of the Sith book, "only my pride" was hurt, but that’s still a deep wound.
- I’d like to say that if I had shake weights to use with these tremors, I’d look like Hulk Hogan by now.
- I need to cut down on back-step pirouettes, especially when clutter is behind me. Trashcans and cords are tricksters.
- I am afraid of the dark, so I sleep with a night light. The ghosts I see are nasty, even if they aren’t real.
Mental health and outlook
- Crash Davis had it right about the value of being able to "just be." You may call this stillness or meditation. No matter the name, calm is good.
- When nothing else works at bringing up your spirits, crank the stereo! Change the words to whatever works, if necessary. I recommend Steve Miller Band’s, "Jet Airliner."
- Sometimes it’s "grinning for the winners" or Eminem dropping the mic. Parkinson’s will kick our butts, but the comeback attitude is everything.
- Stay positively loose!
- We may not be able to dance like Jon Batiste in his "Freedom" video, but Parkinson’s can’t stop us from dancing to our own vibe.
- Watching Jimmy Choi do pushups with weight plates on his back is all that.
- I'm not afraid to laugh at goofy things or be a little eccentric. "Me" is A-OK!
- Learning to laugh about Parkinson's crap show can make a difference.
- Phony though makes a huge difference the other way. So it goes. Open up. Get help. You matter.
- Sometimes, it could be a lot better, but it could always be a heck of a lot worse.
- Remember, if Parkinson’s sends you to "zee cooler," be like Steve McQueen in The Great Escape and bring a baseball and glove. Survival mandates defiance.
- Rocky expressed defiance in his "how much you can take and keep moving forward" pep talk.
Sharing my experience and connecting
- I may be introverted, but I’ve come to realize that I need to be around people to share my life and experience theirs.
- It’s good to be open about your issues, but just read the room first. I know my casual discussions can trip some people out.
- Opening up about Parkinson’s effects is my way of saying, "You don’t have to feel ashamed of what you can’t do and asking for assistance." From anxiety, to having to use gymnastic movements to wipe my butt (range of movement issues), I’ve been there. It is what it is.
- There’s a difference between expressing honest challenges and implying "suffer like me." Don't consciously make Parkinson's issues contagious.
- There are many wise voices who "keep it 100." Find some for you.
- It’s easy to respond to negative people’s comeuppance with glee. Be the bigger person. Schadenfreude is evil. I’m working on this.
- Love, respect, and empathy are essential. Even when it sounds sweet, pity doesn’t equal respect. This is why Lou Gehrig "retired."
- We need to respect and empathize with our caregivers, too. Parkinson’s is too often a 2-way, poorly maintained dirt road of thankless suffering.
- I can finally talk about getting beep brain stimulation (someday) with my doc in a way that doesn’t completely freak me out. It only took 5 years.
- If you’re going to sell me anything for my Parkinson’s, please care more about my mental and physical health than financing your next purchase with my lost dopamine money. We’ve seen these ambulance chasers and miracle "cures." Say yes to assistance. Don't let the parasites in.
Travel and hobbies
- It still feels as good as when I was a kid to get a baseball card I really want, even if I can’t get or even find my way to them all.
- Nearly 2 decades later, I still can’t watch videos of hiking Angel’s Landing in Zion National Park. Yes, my balance negated that steep, chained hike (I never wanted to do anyway), but having a "permanent issue" gets me a free National Parks pass to see the rest of the park.
- Listen more, speak less. Live vicariously through fellow travelers on Walt Whitman's "open road."
- The first real fall will clarify what your acceptable risks really are, as well as your supportive aid needs.
- I recommend not having your first fall at work (I did). That said, if you do, have a supportive work crew.
- If you’re going to have a big fall on a rocky trail, try not to scare passers-by with a face first drop. This applies to your non-Parkinson’s friends, too.
- No more jelly-leg thousand-step staircase hikes for me. Fortunately, I had at least a baker’s dozen over a decade.
- Still, that view from the Standing Stone Trail was something. I recommend breathing in the pure air of the places that make you happiest while your abilities still allow you to do this (whether you have a permanent condition or not.)
Thoughts for the future
- My biggest future challenge will be adjusting to life after I am away from a steady stream of minds to educate. "The Pasture" is terrifying.
- Frustration with Parkinson’s and fear of our future is natural. No matter how strong we are sometimes, other times we aren’t. It is what it is.
- Knowing what comes down the road is imperative, but acclimating to the water is just as important. Never pass your negativity onto other people, but speak honestly about future realities.
- I still believe the best is yet to come, even with sciatica and dystonia beating down the door like zombies in The Walking Dead.
- No matter what else happens, "It (dancing to the rock and roll station) was all right." Right on, Lou.
- I still believe everything I learned up until now will guide me 50 more years.
- Life doesn’t have an imaginary timeline. Don’t make one.
Good things to come
Here’s to the good things to come. Cheers to no more new cases of Parkinson’s and a cure for those of us who have it. As Oprah might say, 50 more good years for everyone!
Have you ever tried journaling?