The Long Climb Ahead
Have you ever looked into the mirror only to be surprised because you saw what felt like a stranger looking back?
Every day I live my Parkinson's Disease experience without knowing what it's like for those around me. I was recently invited to host a short show at Microsoft that highlights open source projects by interviewing the maintainers. I had a lot of fun producing the episode and my level of excitement was high to see how it turned out after the editing completed.
It was a complete shock when I watched the video because the person on the screen didn't look at all how I feel.
The face I saw was mostly expressionless. When I smiled, what I thought was a big face-lifting grin looked more like a slight curling of the lip on the right side of my face. My movements were stiff and jerky, and my mouth hung slightly open most of the time. It was sobering to see the "me" others see.
Don't get me wrong. I'm not embarrassed, and it doesn't deter me from wanting to do more presentations in the future. What makes it frustrating is simply the reality of the disease.
Parkinson's Disease is chronic and progressive. Currently, there are no known mainstream therapies that can bring back the cells we lose. In a recent interview, Michael J. Fox said, "You don't die of Parkinson's, you die with it." Most of my daily energy is devoted to doing as much as I can now to not only enjoy the abilities I have, but to keep Parkinson's away from claiming them to never give back. It's a one-way street. The block I'm on is fine, but when I look back, I'm both amazed at how far I traveled and terrified by how much distance is between me and the person I was before he tremors began. I'm thankful for the support I get from friends and family, but to be blunt, it's not enough. I'd be in a much different place if there wasn't anyone else available to pick up the slack. Fortunately, there is.
I am a facilitator and presenter for a workshop we give at work about psychological safety as part of what we call "brave conversations." Amy Edmonson coined the term psychological safety and explains it well in her video about building a psychologically safe workplace. There is a great push today within many organizations to train people to have more empathy and understanding, be more inclusive and open to diversity. Unfortunately, many people who openly proclaim their desire to be a part of this movement are hypocrites and selective of who they include. They actively support and spread stereotypes and humiliate people like me who are willing to speak out about God.
I follow Jesus Christ. I believe the bible is the inerrant word of God.
What type of reaction does that bring to your mind when you read that? Here are two direct quotes from well-known and influential people who work in my industry (one quote is from someone at my company).
"If you pray... you deserve to be mocked."
"I'm not sure how you get through to someone askew of reality."
People don't take the time to learn that I was atheist most of my life before coming to Christ. It doesn't matter that I'm familiar with string theory and quantum mechanics because if I don't believe what they do, I must be "forsaking science." Many other beliefs that come from believing God is sovereign are categorized by others as either attempts at control by privileged white males or phobias based on antiquated beliefs. When people do engage, it's often from a position of condescension. "We've figured it out through science, but you believe in God, so clearly you are a child."
Ironically, information theory has come a long way to dispel the myth that monkeys banging on a typewriter will write a Shakespearian sonnet if given enough time. For every letter, space, and comma you randomly match, the probability of the next character matching becomes exponentially lower until you must rely on infinite time and universes for it to even be conceivable. If you came across a bible verse written on the beach, would you assume it was purposefully written by a human being or randomly etched by sunbathing mollusks?
Carl Sagan once said this about a simple bacteria cell that is far less complex than a typical human cell: "The information content of a simple cell has been estimated at around 10^12 bits, comparable to about a hundred million pages of the Encyclopedia Britannica." The appropriate reaction according to the secular world is "how marvelous evolution is!" The causality principle, the second law of thermodynamics and entropy all get a pass. Even before I believed in God, I struggled with the notion that life was created by some random chemical reaction. After all, scientists armed with all our knowledge about what is necessary for life are incapable of creating life in a fully managed environment where they control all of the variables.
My intent is not to start a debate or even change your mind if you hold different beliefs. Instead, I want others who suffer from this horrible disease to know my faith isn't something I simply chose out of fear or ignorance. The reason why I'm not terrified of what the future will bring is because I know God is with me. I can bear it all because I don't have to face it all alone. I put my trust in Jesus and that comforts me more than you can imagine. It also frees me from being angry about my situation or wasting time on worrying about what could happen in the future when I can be celebrating what IS happening right now, in the present.
I've heard some people say that if there were a God, the disease wouldn't exist. That God either "wouldn't allow it" or is evil for willingly letting it happen. That existence sounds terrible to me: automatons in a sterile utopia without free will. No thanks! The greatest gift I have from God is my free will even though I can use it to deny Him and commit evil. There's more to it that I'm happy to discuss with anyone who is genuinely curious.
30 things about Parkinson's Disease
April is Parkinson's Disease awareness month and I decided to start a fundraising campaign and contribute one thought about PD every day. I am aesthetically challenged so I relied on artificial intelligence to help by using DALL-E to generate the illustrations. I left the campaign running in case others wish to donate.
A huge, heartfelt "thank you" to the eleven donors whose gifts ranging from $1 to $400 helped me exceed my goal of $1,000 in April.
Just because the month is over doesn't mean that PD is. I built a web page to exhibit the campaign and provide a resource for people seeking to learn more about PD. I enhanced many of the facts, tips, and symptoms with links for you to explore to expand on various topics. If you know someone who has been recently diagnosed (or discovered a friend or member of their family has it) with Parkinson's Disease, consider sharing this link.
The National Plan to end Parkinson's Act
Legislation must be introduced and passed by the house and the senate before it can be signed into law by the president. The National Plan to end Parkinson's Act was introduced to the senate as bill S.1064 and the house as bill HR.2365. I'm often asked by people how to make a difference or provide help and support to me for PD. This is a perfect option that doesn't require any money, just interest and time. If your representatives aren't listed as sponsors or co-sponsors for this bill, let them know how important it is for them to provide their support by writing to them. This bill is incredibly important, and I appreciate all of the support we can get behind it.
My daughter and son-in-law live in Colorado, so we recently took a short vacation to visit them. Traveling with me is always an adventure because I bring a portable set of astrophotography equipment that provides many interactive learning opportunities for airport screeners. Although our luggage was flagged for different reasons both going and coming back, we had no issues sorting it out. An unexplained delay resulted in an unexpected overnight stay in Salt Lake City, cold air led to the decision not to visit outdoor hot springs, and snow was the reason we ended up not driving to a town we planned to see.
Despite these changes in the plan, the visit was amazing. I had a great time with my daughter and son-in-law and their dog, Willy. I witnessed a rare atmospheric event and captured space photos from an ideal location that had very little light pollution and excellent seeing conditions due to its altitude of 8,400 feet.
The main thing different about traveling with Parkinson's Disease compared to trips before my diagnosis is the importance of medications and timing. I handle this a few ways. Using tiny zip-locs that we used to call "nick-sacks" and stored something entirely different in when I was younger, I pack my pills for the trip, then repack those in a larger zip-loc. I have a pill organizer I use with a compartment for every day of the week, but I end up using the "days" as "hours" in a single day and refill it every morning. The pill organizer goes in my backpack for easy access. I always overpack by a few days in case of unplanned emergencies and circumstances. I also always give extras to my wife to hold in case I either lose or damage my own supply.
The current regimen I follow includes (daily):
1x1 Omeprazole for my stomach
1x1 Levothyroxine for my thyroid
4x2 Rytary for Parkinson's Disease
1x1 Rasagiline for Parkinson's Disease
3x1 Ropinirole for Parkinson's Disease
5x1 500mg Vitamin C for my immune system
1x1 1,000 IU Vitamin D3
1x1 Taurine (can't remember the dose)
4x1 Turmeric for inflammation
2x1 Cordyceps for oxygen
2x2 Glucosamine for joint health
2x2 Men's multivitamin
A mushroom supplement with Lion's Mane, Chaga, Maitake, Shiitake, and Reishi
3x1 BrainOn algae for cognitive ability
2x2 fish oil capsules for healthy fats
1x3 Magnesium threonine for muscle recovery
I also find that THC and CBG in a 1:1 ratio is incredibly helpful for pain management and quality sleep.
During my stay, I photographed Pikes Peak at 3 am and captured the headlamps of hikers winding their way to an early summit.
At the dark site I photographed an area of the sky I'm not able to see from our home in Monroe.
I also captured a panorama of the Milky Way.
That's not all! One morning I witnessed the rare event of a piece of space debris disintegrating as it burned up in the atmosphere. I caught the entire thing on video and included it in my recap of the trip you can watch here:
The long climb ahead
I have a long, steep climb ahead of me as I progress through the stages of Parkinson's Disease. You may be surprised to learn how excited I am to reach that summit. I'm not on this journey alone, and the harder PD tries to wrestle away my quality of life, the more I appreciate the qualities of my life. From my daughter willing to brave 20-degree weather at midnight so her dad can photograph the stars to a wife who will celebrate 25 years of marriage with me in a few weeks to the soothing sounds of wind blowing through massive old growth pines and the shining slopes of gold sunlight reflecting off the snow on Mt. Rainier, I enjoy these magical qualities that reveal the blessings in my life. God is great!