The National Bill to End Parkinson's Act
This week, I had the opportunity to advocate for legislation on "The Hill" by sharing the story of my battle against Young Onset Parkinson's Disease with the office of my district's U.S. Congresswoman, Suzan DelBene. The purpose of my virtual visit that happened over a Microsoft Teams meeting was to advocate for The National Bill to End Parkinson's Act. The bipartisan bill has no cost associated with it. Instead, it follows the same formula as the National Alzheimer's Project Act (NAPA) that was passed in 2011 and creates a foundation for further progress. Since NAPA was passed, government funding for Alzheimer's research has quadrupled to $1.2 billion per year. Parkinson's, on the other hand, still receives the same under $250 million it did over a decade ago.
The bill establishes a framework to take further action to end Parkinson's Disease. It is my hope that Congresswoman DelBene will cosponsor and help push this bill through. I am immensely grateful to the Michael J. Fox Foundation for making this possible and coaching me through the process!
Here are some facts I learned:
1 million people with Parkinson's Disease in the U.S., estimated to grow to $1.6 million by 2037 (and I think this estimate is low)
$52 billion in costs per year (U.S.)
$23 billion annual cost to Medicare
$2 billion in disability benefits
23,600 people with Parkinson's Disease in Washington State
$1.2 billion in cost per year (Washington)
Of course, we're not sitting on our shaking hands waiting for the government to take action. One cause I'm proud to be a part of is the Young Onset Parkinson's Network. I've served on their board of directors for over a year now. Our goal is to be first point of contact for people newly diagnosed at a young (typically 50 or younger) age to provide the resources they need to navigate the long road ahead. Unlike the traditional support groups that target retirement age individuals, people with Young Onset Parkinson's Disease (YOPD) face different challenges and are by definition many years shy of retirement age and often have children to care for.
If you would like to contribute to this very unique cause, tap the Donate button!
Here's one way to help, and it won't cost you anything but time: write your local Congressional Office and ask your representative to support the National Bill to End Parkinson's Act!
There is a popular expression that says if you've met one person with Parkinson's Disease, you've met one person with Parkinson's Disease. The implication is that the disease takes a unique course for everyone. At the end of 2022, I stopped exercising regularly and paid the price. My symptoms progressed quickly. I came into the new year feeling stiff and sore all day, constantly tremoring, and experiencing bouts of severe nausea.
I realized that exercise is my greatest ally, so I implemented these three new habits.
To reduce stiffness, I Jangle first thing every morning. This makes a HUGE difference.
I now exercise three times a day. I found spreading it out is more effective. I tweak and change it week to week, but in general I do a set of 25 squats with dumbbell front raises at the bottom, 25 push-ups, 25 good-mornings with dumbbell rows and reverse flies, and finish with 20 burpees (instead of jumping, I hold onto dumbbells and raise them over my head).
I also stretch with every workout.
The changes have helped tremendously. The reality is that I'm now sore every day, all day, but it's manageable with the exercise. The bouts of nausea are harder to deal with. I never actually get sick, but it makes for a very unpleasant 15 minutes - 2 hours depending on how long they last. It didn't help that one morning I stepped onto the backyard and slipped on a patch of wet grass. I landed on my elbows and sliced my hand on the edge of a rock. Fortunately, I didn't hit my head or hurt my back. If you can't avoid tripping, learn to trip well.
A source of inspiration for me to train is the power of knowing the pain I feel is voluntary, under my control, and serves to relieve me of the pain from Parkinson's Disease that is involuntary and outside of my control.
When I'm on campus, I like to take breaks by shooting a few rounds of pool. I was having a good day so I filmed what I hoped would be a "run out" but I ended up missing one ball. It was a fun game but I'm not sure who won.
I've been focused on adaptive accessories and using those a lot more. For example, typing this blog post has been extremely difficult and so I used speech-to-text to dictate a good portion of it. As a left-handed person with most of their symptoms on the left side, I'm capable of using the mouse with my right hand. Fortunately, Microsoft's adaptive mouse makes it possible to continue using my left hand. Sometimes typing feels like this:
Living with a disease can be unrelenting and feel like there is no way to "escape" to a moment and enjoy the quiet and stillness. I have two hobbies that alleviate this: hiking and astrophotography. Fortunately, I've been able to participate in my share of both.
When my daughter and son-in-law came after Christmas, I reached out to my hiking partner (and coach, and mentor) Dan to see what we might be able to pull together. He took us on an amazing hike around Wallace Falls.
We also took a trip to the Oregon Coast. We watched the rain slide into the coast from behind Gull Rock.
Then we heard the angry crash of waves as they hammered furiously against the rocky shore.
We marveled when just a short time later, the clouds parted for the sun to alight on the Devil's Punchbowl.
My son-in-law received a drone for Christmas and quickly mastered its use. My daughter edited this breathtaking video of McMinnville, OR, Otter Rock, OR and Monroe, WA.
After our guests left, Doreen and I found a close, easy-going hike through the trees.
That's not entirely accurate. We had a guest. Pepper came with us too!
Finally, our local YOPD support group (shout out to SEAYOPD) arranged a snowshoe outing! I can't think of anything more peaceful than walking on snow through the woods with nothing but the sound of breathing and ice crunching.
It was so invigorating, I had to throw my arms up and cheer. Apparently, extraterrestrials attacked at the very moment my wife snapped this picture and the phaser blast just missed my head.
Their timing was uncanny, because they went after my wife too. Here they missed right instead of left.
The green comet, and stuff
I mentioned two hobbies. The second is astrophotography, and this year started with multiple achievements. I sold my first prints and opened an official online astrophotography print shop where you can receive copies of my highest quality photos on photo paper, canvas, or metal (my personal favorite). I had a great January and captured some of my favorite photos ever.
This collage includes only images I either captured or processed in January 2023.
One of the more exciting developments was the discovery of comet C/2022 E3 (ZTF) in late 2022. This comet is computed to have a wildly eccentric orbit that lasts 50,000 years! A chemical on its surface began reacting with ionized solar winds that causes it to glow a bright green. Because the relative motion of a comet is different than stars, it requires some extra effort to process. Here's a video of an earlier observation.
And these are some of the images I captured.
One night as I was filming the comet, I set up my camera to capture the timelapse in the previous video. By overlaying the frames of the timelapse, I was able to create this star trails picture that contains the comet trail too. I brightened it to help it stand out but notice how its path spirals in rather than following the perfectly space star lanes.
I also caught a rare shot I didn't think would be possible due to the clouds. This is the comet passing next to the Red Wanderer, Mars.
I also took some of the most detailed and close-up pictures of the moon I've ever captured.
Angels among us
It's not an easy road, but it's one that I don't have to walk alone. I've made incredible friends through PD. I've had old friends (hi, Jason!) call me after 20 years out of the blue to let me know they're thinking of me and share resources they came across to help my PD fight. My wife is constantly by my side and my faith is stronger than ever.
In Matthew 11:30, Jesus says, "My yoke is easy, and my burden is light."
I moved to the Pacific Northwest for the beautiful outdoors, and despite the struggle it's been to type these final paragraphs, I feel blessed. This is what I sat enjoying with a cup of coffee the other morning. I call this one, "Hope."