What a year! Astrophotography, whales, waves, new homes, work opportunities, a conference, travel, and so much more. As I celebrate 2023 and contemplate 2024, one thing that is top of mind (pun intended) is Deep Brain Stimulation.
In the past, patients who suffered from Parkinson's Disease could sometimes find relief by undergoing ablative brain surgery. Also known as brain lesioning, the procedure destroys the cells in the area of the brain believed to control the muscles that cause the unwanted tremor or muscle spasms. Even when the irreversible procedure produces results like improving tremor, it can also lead to unwanted side effects such as reduced speech and cognition. That's a tough trade.
In the 1980s, a doctor named Alim Louis Banabid noticed something interesting. Before creating the lesion, an electrode would be attached to the target region to stimulate the area with various frequencies, typically in the 20 - 50 Hertz range. The stimulation creates a reaction in the area of the body that part of the brain controls so the surgeon can verify they are about to zap the right region. Dr. Banabid noticed that the frequencies would sometimes completely stop a tremor, so he conducted the research and experiments that essentally invented the procedure known today as Deep Brain Stimulation, or DBS for short. He found that higher frequencies (closer to 100 Hertz) had the same effect as ablation but did not destroy the tissue.
There are usually two surgeries. The first is a "minor" brain surgery to implant tiny metal wires in specific locations in your brain. The second surgery is to implant a control module and battery over your chest, under the skin, and connect the wires. The pack recharges wireless and the surgery is reversible.
Although it is a surgery that has a risk of complications, I've been able to speak directly with at least half a dozen people who have had the procedure done. It's not a significant sample size, but everyone I spoke with said they absolutely loved the outcome, and several are completely off meds. My understanding is that DBS treats similar symptoms to levocarbidopa, so given its positive effect on my tremor and dystonia (foot cramping), I'm optimistic it could make a positive difference.
A graphic illustration of what dystonia looks like.
I am still waiting to establish care with my new movement disorder specialist. He is located in Portland, about 2.5 hours from our place, and is scheduled to see me in March. We'll figure out then what next steps are. No matter how good or bad my days are, the reality is that my disease is progressive and none of these solutions slows or stops it. We are just finding ways to cover up the symptoms, and DBS is one that lasts longer and without medications than drug-based alternatives when it works.
Most people have ten "good" years after their initial diagnosis. When studies look at people who are 20+ years out and still report a good quality of life, they find those people have several things in common. They engage in vigorous exercise five to six days per week. They eat mostly plant-based and organic food. They take certain supplements. I've been consuming a mostly plant-based diet with occasional egg and cold-water fish like salmon. I joined a local CrossFit gym and take plenty of supplements.
Oregon Coast Astrophotography 2024 Calendar
Before I get into more updates, I do want to share my first "official" astrophotography calendar! It is print quality (the pages are printed on Canon HD photo paper) and each month features an image taken from the Oregon Coast. For less than the cost of a single canvas print you receive thirteen images (including the cover). Preview the images by browsing the Oregon Coast 2024 Astrophotography Calendar gallery. I include dates for new moons, full moons (with their names), popular meteor showers, and more.
If you're interested, you can reserve a calendar here.
How am I doing?
Although my symptoms are progressing enough that I'm considering DBS, my body is otherwise in pretty good shape. Here's the result of my recent "lab report card":
Vitamin B12, Vitamin D - healthy levels
Electrolytes in normal ranges
Glucose was 88 mg/dL
My A1C% (diabetes indicator) is 5.1, well within the safe range
Triglycerides: 83 mg/dL
Cholesterol: 167 mg/DL, 45 HDL, 17 VLDL, and 105 LDL (all in very healthy ranges)
Thyroid levels are good (I am hypothyroid)
Blood pressure 120/68
Pulse 52 bpm
Oxygen 100%
So, if you ask me how I'm doing, my reply is: "I'm the healthiest I've ever been. And I still have Parkinson's Disease."
Return to Seattle
Last year I had the honor of joining the steering committee led by the American Parkinson's Disease Association for a new conference targeted at people diagnosed with Parkinson's Disease at a young age. Called YOPD-CON, our inaugural event attracted around 100 guests - both people with YOPD, and people impacted by or caring for someone with YOPD. I flew back to Seattle to attend and was excited to learn a few weeks before that I was nominated to emcee the event.
Whether or not the event was a success is really up to the attendees, but hearing the testimony from a young man who was diagnosed five years ago and didn't meet anyone his age with PD until the event was powerful! For me, the opportunity to host was unique because I enjoy public speaking and presenting. The symptoms make it challenging for me to type and write code for technical presentations, and in the videos that I produce, people often confuse my tremor for nervousness. This was the one place I knew my symptoms wouldn't take away from the presentation but added to its authenticity.
I personally learned so much from the nutritionists, doctors, movement disorder specialists, therapists, fitness professionals, surgeons, and others who invested their time in helping inform us about everything from exercise to DBS. I am deeply appreciative of all those involved and look forward to helping create more of these opportunities!
Baltimore
I joined the board of directors for the Young Onset Parkinson's Network (YOPN) over two years ago. We have an annual meeting of the board that is held in person. This year, we met in Baltimore. I have to admit, I don't know much about Baltimore and had no idea how beautiful it would be this time of year. Here are some of the photographs I took on a walk around the city.
The board meeting went well. I got to meet new members like Robert Cochrane, the founder of the therapeutic, PD-focused, improvisation-based "Yes, and... exercise!" and reconnect with old friends like Mark who recently summited Kilimanjaro. Our founder, Anna, always finds fun things to do and this was no exception with a ghost tour led by a paranormal expert featuring a speak easy that was rediscovered only a few years ago!
Newport
The city we live in is amazing! The people here are incredibly kind and supportive. We met more neighbors our first month than we did over five years living in Monroe! From our quirky 113-year-old home, one direction is a beautiful bay.
The other direction leads us to the beautiful Oregon Coast.
The area is so beautiful I created a dedicated gallery of Pacific Northwest photographs. The move has been fantastic in so many ways. Although I deeply miss the friends I made or met through the local YOPD support group, we had no idea how welcoming this community would be. It's been a real blessing. We also received an early Christmas gift: our old house in Monroe just sold! I have an endless backlog of new adventures to take on in the area with my wife and friends.
If I were to summarize what the past few months have been outside of work and home repairs, it's been whales, waves, and dark skies. Here's a pair of whales we spied close to shore when my friend Dan came to visit.
These are the crazy waves we get to witness during king tide season!
You can see more in my "Waves of the Oregon Coast" gallery.
The pictures don't capture just how amazing these waves are. Check out this short video:
The dark skies made this Milky Way season the best ever!
I also picked up a new rig that doubled the resolution of my imaging as well as added narrowband capabilities that capture details I just couldn't achieve with my old setup. Here are some of my favorite shots from the Oregon coast.
I continued my tradition of celebrating the best photos of the year in a video. Looking back, this was an extraordinary year of astrophotography!
The Bottom Line
Every year, Doreen and I think, "Maybe this year will be a little quieter." Yeah, right. One thing is certain: we aren't members of the "not much" club. There's always something going on! I've been making some improvements to my website (DeepSkyWorkflows.com) to make it easier to browse the gallery, add more information and improve the integration between parts. I also wrote some code to automate some of the effort it takes getting images published. The manual process that used to take up to 30 minutes per image is now streamlined down to about 5 minutes, so I can clear a backlog of dozens of images that I published to social media but haven't uploaded to my site yet.
I made the commitment to step away from both work and astrophotography during the break. I look forward to taking time off between Christmas and the New Year to spend time with Doreen and "the kids" (our German Shepherd, Pepper, and kitten Jinxy). The first week of January will be a celebration of Lizzie's birthday in Colorado. I'm wrapping up blog posts and image uploads by tomorrow and then switching from reading programming and astrophotography articles and blogs to a nice old-fashioned "hold it in your hand" book.
Next year will be a year of change. Whether I like it or not, PD is changing me, but I still get to make choices. This coming year I plan to hike with Doreen when she recovers from her upcoming partial knee replacement surgery. I will have a plan in place for DBS. I will see my first total eclipse. I'll visit new destinations like Crater Lake. I have an upcoming opportunity to present my astrophotography knowledge to the community and am considering joining a gallery.
I also received this Christmas gift: the National Plan to End Parkinson's Act was passed by the House! It still needs to pass the Senate, but the progress is promising.
2023 was a year like none other, but I've been saying that every year. I thank God for my loving family, for my friendships that endure regardless of location and for this beautiful and welcoming community we are a part of. That thank Him for my opportunity with Microsoft, for Doreen's surgery date getting moved up to February and for options like DBS that have the potential to improve the quality of my life.
Merry Christmas. Happy New Year!
My husband legs felt like they each weigh 200 lbs. Moving was very hard for him. We figured it was the PD progression. He started a PD-5 programme about 4 months ago. He can now walk down the street and back daily. It doesn’t make the Parkinson’s go away but it did give him better quality of life. We got the treatment from binehealthcenter.com I’m surprised a lot of PWP haven’t heard of it. This treatment is a breakthrough