One year ago, on February 20th, my wife and I sat in the office of my movement disorder specialist while he delivered the news that I had a definitive diagnosis of Parkinson's Disease. This came just one day after I learned I was accepted to a new role at Microsoft. Today, I celebrate making it through my first year of diagnosis. Ironically, the toughest challenges had nothing to do with the disease. We were locked down due to COVID, I held my loving and loyal German Shepherd named Indi as she was euthanized to end her suffering, and we lost my father-in-law.
It wasn't all rough times and I wrote this post to highlight the positives.
Microsoft
It may seem strange to list a company as a benefit, but working at Microsoft has been amazing. I decided to come out with my diagnosis almost immediately so that I can be an advocate for people with Parkinson's (PWP). I received nothing but positive support from my manager and peers. The company benefits cover all my care. I am a member of support groups that exist for people with movement disorders, and Microsoft matches my donations to the Michael J. Fox foundation. The company quickly accommodated working from home during COVID and has even granted us several "wellbeing" days to take above and beyond our ordinary vacation time.
My Parkinson's Community
It's been a great year for community. I've been involved with a local Young Onset Parkinson's Disease (YOPD) support group. So far, my wife and I attended several events, including a lovely walk around a lake in Seattle. We met and learned from several other people with Parkinson's. I've also been making connections online through our Instagram account. I even participate on a discord specifically focused on Virtual Reality (VR) for Parkinson's Disease.
My Health
I had a physical at the end of the year and had the best lab results of any physical, ever. My blood pressure, cholesterol, and triglycerides were at an all-time low. I believe that following a plant-based diet combined with regular, intense exercise are the main factors. My current routine is challenging and fun. Here is a snapshot of a recent workout. I incorporated balance-based exercises (balance ball push-ups and one-armed push-ups, for example) because loss of balance is a potential symptom of PD.
I still have challenges with stiffness and sore joints but thanks to nutrition, exercise and medicine, I'm working through them!
My Family
It's been such a blessing to receive so much support from family. My wife immediately took on the role of caregiver for me. It may sound strange to mention a caregiver when I am still fully capable of performing my daily activities from driving and shopping to working and working out. Doreen provides tremendous support. She is on top of my medications and schedule, she helps coordinate outings and keeps an eye on upcoming group events, she researches medical advancements and tracks my symptoms so we can work with my movement disorder specialist to tweak what's needed.
I was deeply moved when several family members (independently of each other) gave me the gift of a donation to the Michael J. Fox Foundation for Christmas. Thank you! 🙏💗
My Hobbies
Stress is a trigger for symptoms with Parkinson's Disease. I've always managed the stress in my life, but after my diagnosis I focus more intentionally on unwinding and having fun things to do that are entirely disconnected from my work. Hiking has been a huge part of that, but I also have a few other outlets.
One of those hobbies is a virtual reality game called Population: One. The game is what's called a "Battle Royale" where you pair up with others to form squads. Multiple squads are dropped on a map and much scavenge weapons and ammunition to fight each other. The last team standing wins. It's more than just a game to me, because my talent in the game is something you might not expect from a person with Parkinson's Disease: sniper accuracy. I'm deadly accurate behind the scope. Despite the tremor in my left hand, when I am using the scope and aligning the crosshairs, I'm able to concentrate and keep my hand still while I squeeze the trigger. This is how I deal most of the damage in games.
Here's me celebrating reaching level 50 in the game.
Yes, the secret is out. My online alter ego is named Jayke Savage.
The second hobby is astrophotography. The physical aspect is easy with my Stellina telescope. It handles alignment, tracking, exposures, etc. The real work comes in after an imaging session. Although Stellina does a great job of "stacking" photographs, or combining multiple exposures to produce a more detailed image, its algorithms can only do so much in real-time. I can take exposures from multiple sessions and combine them using special software.
For example, this is an animation showing the telescope's real-time stacking. The target is NGC2237, the Rosette Nebula. If you look closely you can see the detail slowly emerge. The final frame still leaves much to be desired.
Compare that with the result of combining the raw 400 10-second exposures using astrophotography software:
The entire process takes several hours to days, but the result is well worth it. Here's my favorite image so far.
I'm looking forward to upcoming clear nights!
God
I saved the best for last. The source of my confidence, my resolution, my courage, my grit, and the peace I can enjoy despite the challenges life throws my way is my faith in God. He still believes in us, even if so many have chosen not to believe back. I am thankful for the gift of free will that gives me the choice to place my faith in a creator capable of painting a canvas that stretches light years across the heavens. God is good and life's daily nuances are trivial compared with eternity.
The Future
I'm wrapping up this blog post in a hotel room in Chelan, Washington. In a few hours we will drive to a farm to meet the puppies from a German Shepherd litter. There are two females in the litter and one of them will come home with us in a few weeks. Her name will be "Pepper" and she will be formally trained as a service dog. We are very excited and full of emotion. I will forever miss Indi but look forward to this new chapter.
Finally, we are just days away from releasing the first episode of You, Me, and PD Season 1: The Year of the Diagnosis. I will post as soon as the episode is available. It took a lot of tweaks and experimentation with microphones and recording devices to finally nail the first recording. I hope you will join us as we share candid conversations about living with PD.
As always, thank you for your time and attention. Until the next post,
