I've got a lot of information to pack into this post. A reflection on two years of Parkinson's Disease, an update on my quest to complete almost 67,000 burpees, the launch of a new community for people with Young Onset Parkinson's Disease, and more.
"Resting tremor, cogwheel rigidity, and bradykinesia with a positive DaTScan Right > Left. Brain MRI with a few punctate white matter hyperintensities."
That was how my movement disorder specialist began his notes on February 24th, 2020. It was the day that I received my official diagnosis of Young Onset Parkinson's Disease. In a way, it was a relief. My wife and I were exhausted by the constant referrals, furrowed brows, puzzled looks and no firm explanation for my tremors. I think we both spent that evening on various websites starting the journey to understand how our lives just changed and what we could do to slow its progression. It was a Monday.
It's amazing to think of the signs that existed but weren't noticed until afterwards. I hosted a show called On .NET and noticed my hand was exhibiting symptoms as early as a year before my diagnosis.
Just a month earlier, Doreen joined me on a trip to London for a major conference. I was suffering from severe depression and insomnia, and this was the first time she was able to be with me to comfort me as I struggled to stay positive. We had no idea these episodes would be linked to the same source that was causing my left arm to shake uncontrollably. After London, I went straight to another conference in Atlanta and got to spend time with close friends and my daughter. Then it was home to an internal company conference.
My good friend Doug visited Seattle from Atlanta. After touring the city, we returned to his hotel, and he introduced me to portable virtual reality. We played Beat Saber on his quest, and I was hooked. I had no idea this would become a sort of therapy for me in the years to come.
I also was making a career change that would ultimately fit well with my diagnosis. I had a great relationship with my manager, Shayne, and he knew I was considering switching roles. We were at the hotel for a team summit enjoying bourbons when I received the call. The new role was mine. It probably wasn't fair to Shayne that I not only dropped the news that I have Parkinson's Disease, but also that I would be moving to a new division. I remember we played some pool and celebrated with another glass of bourbon before I took the hour-long Uber ride home. It was the Wednesday, two days after I was diagnosed.
I spent my first three years at Microsoft working remote and traveling a lot. My new role promised less travel but was an onsite role. I would be going in every day. I was already coming in several days a week to record at the studio on campus, but this would be a lot more time away from home. Then, on Friday that same week, the world shut down. Including the Microsoft campus. I started my new role remote and did not see my new team in person for a year. The pandemic had begun.
In June, on Father's Day weekend, I had to drive my beautiful German Shepherd, Indi, to the vet. She had blood cancer and was in constant pain. We traded: she went to sleep, and I felt a deep vacuum that would suck away my joy for months. Fortunately, it was Summer, and that meant outdoors even during a pandemic. I went on many amazing hikes and celebrated the things I am still able to do.
Summer left. Autumn came. Over Thanksgiving, my father-in-law passed away. After losing her mother, then her brother, this left Doreen as the lone survivor of her family. It was a painful time, but we supported each other and focused on healing. Doreen shared with me the vision of launching a podcast, so we went for it and produced You, Me, and PD.
I decided I wanted to try something new. I've been fascinated with space since I was a child, so in January 2021, I bought a telescope.
In March, we decided to move forward and adopted a puppy named "Pepper." She helped tremendously with healing from our losses of Pa and Indi.
I also started another hobby: growing peppers. I grew Jalafuegos, Habaneros, and Serrano peppers. I made a hot sauce and dried pepper flakes and I'm not the only one who thinks they were awesome.
In July, I was on a team meeting and someone, "Sorry to hear about Abel." He was a good friend and colleague of mine who was battling colon cancer. We had chatted a few weeks earlier and talked about getting together to look at stars. "What about Abel?" It was a tough way to receive the news that he had passed. I quickly turned off my camera and microphone and sobbed for a few minutes. It's still hard to believe he's gone sometimes.
I continued to focus on working, working out, taking meds, and astrophotography. I finally got the hang of planning sessions to capture photos and process them into final results.
That month, I did two things. First, I decided I wanted to step up my abilities and order a more powerful telescope. So, for my birthday in September, I purchased a Celestron EdgeHD 9.25" Schmidt-Cassegrain telescope. To put things in perspective, a bigger aperture means more light for better images and a longer focal length means higher magnification. My camera has around a 10mm aperture with up to a 212mm focal length. Stellina has an 80mm aperture with a 400mm focal length. The new scope? 235mm aperture and 2350mm focal length! Unfortunately, supply chain issues due to the pandemic would put it on backorder for a very long time.
Second, I launched a website dedicated to astrophotography.
My symptoms progressed to the point that I switched from "just" ropinirole, a dopamine agonist, to the mainstay for most people with Parkinson's Disease: Carbidopa-Levodopa. I also received my first work accommodations to help me adapt.
On a special visit to Colorado to see our daughter and son-in-law, my wife graciously allowed them to take me to a remote site on her birthday to take star pictures. I captured my first Milky Way shot.
For no reason I can describe, I stopped exercising consistently for a few months. Exercise is the one thing that can slow the progression of Parkinson's Disease symptoms, so I set a challenge to motivate me to exercise: I will do one extra burpee every day of the year until I do 365 burpees the last day of the year. That's almost 67,000 burpees for the year! I am videoing every burpee and you can watch at https://bit.ly/67kburpees. Here's the most recent week of burpees:
I was still waiting for my telescope, so I decided to purchase a less expensive "in between scope" (a doublet refractor with 420mm focal length extensible to over 1000mm with a special "Barlow" lens, and 70mm aperture). I was able to take some amazing photographs, even during the day.
I even got close and personal with the moon.
A few of us at work were chatting and came up with the idea to create a rap and music video for our team. Our product has the nickname "Magic Unicorn Edition," so we created Unicorn's Kickin'. That inspired me to write and record a few more tracks, like "Tricky."
It's a lot of fun even if I'm a little rough around the edges. Practice makes perfect!
One day I mentioned to Doreen that I was frustrated my telescope was still backordered. "It will come when it's God's will for it to come." So true, but God gives us free will, so I used mine to call the vendor. "Jeremy! Why did you call?" "I'm just checking in." Turns out my timing was perfect. They were looking at a scope in a damaged box (scope was fine) and because I called when they had it out, they were willing to repackage and ship it with my permission. It came a few days later, so of course we've had bad weather.
Last week, Microsoft's campus reopened almost exactly two years after shutting down. I went in on a Wednesday. It was a surreal experience. It almost brought me to tears when I was in the cafeteria to see it full of people and energy. Someone walked by with long, black hair and I felt a surge of excitement - that could be Abel! Then I remembered: he's gone. And two years of living with a chronic progressive disease under the life-altering stress of a pandemic came crashing down on me.
But it's OK. My shoulders aren't strong enough to bear the weight, but God's are. Jesus said, "For my yoke is easy, and my burden is light." (Matthew 11:30). I place my trust and my burdens on Him, and even though I don't deserve it, He gives me comfort.
Speaking of comfort, I find great comfort through the support of community. A community I've been helping drive for some time now just went live. I'm pleased to announce the launch of the Young Onset Parkinson's Network. It's an amazing non-profit set to transform the support and networking available to people like me who are diagnosed at a young age and have to balance the diagnosis with family and career. Please consider sharing this with your YOPD friends and caregivers. There is opportunity to both donate and sponsor as well.
Speaking of donations, special thanks to Salon Tagua for their generous donation to my burpee challenge!
This was a bittersweet reflection but felt great to share and write. If you made it this far, thank you so much for caring and being patient with me as I continue to get comfortable with the changes in my life. It's already March and I've worked out every week of the year, my meds no longer make me nauseous, my only debilitating symptom is difficulty typing with my left hand, my new telescope is waiting to peel back another layer of the universe, I'm back with friends and colleagues on campus and able to go in person to church again. More important than all of these great things are the two most important sources of support in my life: God, and my wife, Doreen.
I'm blessed. I'm looking up, not down. And dangit, I'm doing a LOT of burpees. So there!
Comments