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  • Writer's pictureJeremy Likness

Getting comfortable with my voice

I like to say, "Life is like going up the down escalator. When you stand still, you fall behind." I assure you that I have not been standing still.

The silhouette of a person on an escalator with a shining light at the end
Going up the down escalator

Let's start with my uninvited life partner, Parkinson's Disease.

Tweaking PD

Parkinson's Disease is a roller coaster ride and requires the ability to adapt. My first few years I spent learning about the disease and looking into measures like diet and exercises to slow the progression of my symptoms. I feel like this year has been about adaptation. My symptoms are on my left side for now, which also happens to be my dominant hand. Aside from constant tremoring, two more symptoms recently began to manifest. When I use a strong grip, like when I'm carrying heavy counterweights to balance my telescope or squeeze the lid of a jar to twist it open, my hand will sometimes "freeze." It locks onto whatever I'm gripping, exerts so much force I feel pain, and for about a second, I have no control and can't disengage.

More disturbing than the freezing is what I refer to as "slack attacks." It's tough to describe, but I'll do my best. A slack attack is when my hand suddenly goes slack. Almost like the opposite of the freezing, slack attacks strike at random and mainly target my left hand. My hand and forearms muscles suddenly go slack, and I lose my grip. After dropping a heavy box because my left hand just randomly let go, I realized I need to adapt. For the symptom, I'm more conscious about purposefully carrying things in my right hand and making sure when I move heavy items that I'm using a wagon or holding it in a way that it won't go crashing down if my left hand gives out. To address the root cause, I stretch with a focus on my forearms and have a body weight dumbbell workout that targets many of those muscles.

I wake up stiff and in pain every morning. The simple act of rolling out of bed hurts and it aches to move my limbs through a full range of motion. Fortunately, I made a commitment to doing a series of light exercises and stretches I call "The Jangle" every day. Although it's always painful to start, by the time I finish I'm warmed up and muscles are loosened up. After my morning session, my aches are almost completely gone, and my range of motion is restored.

I've also been learning to get comfortable with my own voice. For speech-to-text, that is. I type fast and out of habit go straight to the keyboard to gets things done. When my tremors are intense or my hand muscles are cramping, it can become almost impossible to type. Fortunately, my Android phone has a voice keyboard and Windows 11 has built-in dictation capabilities. I'm adopting the new habit of using this more frequently to give my hands and arms a break. It's helped tremendously but has been a tough habit to adopt simply because I'm so used to typing. Several years ago, I shared my top VR picks for Parkinson's Disease fitness. A game I continue to play because I enjoy it and because I believe it addresses both physical and cognitive aspects of PD is Beat Saber. I've improved over several years, and on Father's Day I decided to have a marathon and play different songs at the advanced "expert" level until I hit a song I couldn't complete. I crashed on one song that's consistently been the most difficult for me but decided to go for redemption by successfully taking on another. You can watch the marathon here!

My movement disorder specialist has been helping me tweak my meds and I feel pretty solid with my current mix of drugs. I read some of the historical notes in my medical chart and this is my journey so far:

  • Started with Ropinirole. Had severe side effects the first two weeks, then felt generally better except I experienced frequent episodes of light-headedness.

  • Added Carbidopa/Levodopa 25/100 and received the joy of feeling nauseous at random moments throughout the day.

  • I switched to Rytari but wasn't managing the timing of my pills well, so I started having severe symptoms with frequent OFF time.

  • We upped the dose but agreed to focus on timing the doses right, and so far, it has been a very positive change.

My main issue is random cramping. It's bad enough when your foot cramps so severely that your toes twist into a knot. What's even worse is when your abs cramp (yes, that's a thing). Sometimes it's so intense I have to just squat or sit on the floor and practice steady breathing until it passes.

A tough pill to swallow

In case you're interested or want to compare, this is my current pill schedule:

5am Levothyroxine (Hypothyroid) and Pantoprazole (GERD)

7am Rytari (dopamine), Rasagaline (prevents body from breaking down dopamine in bloodstream), and Ropinirole (dopamine agonist)

7:30am Breakfast pills: Vitamin C (immune system), Vitamin D (people with PD tend to have lower levels), Taurine (support for central nervous system), Brain On (algae for cognitive function), Fish Oil (healthy fats, anti-dementia), Men's Multivitamin mix, Glucosamine Chondroitin (joint support), Turmeric (anti-inflammatory), Mushroom mix (miscellaneous benefits), Cordyceps (mushroom may help improve oxygen uptake), Ashwagandha (stress reducer), probiotic (gut health and potential suppression of alpha synuclein and Lewy body spread)

12:00pm Rytary, Ropinirole

12:30pm Lunch pills: Vitamin C, Brain On, Cordyceps, Ashwagandha, probiotic

5:00pm Rytary, Ropinirole

6:00pm Dinner pills: Vitamin C, Brain On, Men's Multivitamin mix, Glucosamine Chondroitin, Ashwagandha, probiotic

9:30pm Ritary, Ropinirole

10:30pm Pre-bedtime pills: Vitamin C, Mushroom mix, and magnesium L-threonate (muscle recovery and anti-dementia)


The roller coaster

When I was diagnosed with Parkinson's Disease, my Unified Parkinson’s Disease Rating Scale score was a 21. If you're not familiar with the rating scale, read my post on How Parkinson's Disease is diagnosed. I had several ups and downs. My lowest (best) score was a seven. Before my last visit, I scored a 26 and that was the first time that I scored higher (lower is better) than the day of my diagnosis. That's when I realized something.


I am in the driver's seat. This disease isn't taking me for a ride. I get to manage how my body fights it. So, I grabbed the steering wheel and focused on my goal: do the things I know slow the progression of symptoms.


Last visit I scored a 13. I cut my score almost in half by doing two simple things: regularly exercising and managing my stress levels.


On the surface, it looks like I'm doing a good job of managing stress. My blood pressure, for example, dropped from 124/82 the day of my diagnosis to 110/70 on my last visit. Unfortunately, low blood pressure is a Parkinson's Disease symptom and has the potential to go too low and cause issues. So, no pressure, but I'll keep my eye on it.


The elephant in the room

In my doctor's notes, he mentions next steps when the current regimen stops yielding results. It includes a list of other drugs to try, and a note that "Deep Brain Stimulation (DBS) is a possibility if the patient is open to it." I haven't talked much about this elephant in the PD room, but I've been learning as much as I can to make an informed decision when the time is right.

Deep Brain Stimulation is a treatment that many people with PD have experienced incredible results from. DBS uses hardware that is installed over two separate surgeries. First, a set of wires is run into your skull and down your neck in order to send electrical pulses. Second, a controller is installed under the skin of your chest that controls the voltages and frequencies. Then there is an iterative/adaptive process off tuning the device (it can be remotely programmed) to find the right settings that minimize Parkinson's Disease symptoms.


A lot of people I know have received DBS. My friend Whitney had the surgery last week:


As much as I dislike the thought of brain surgery, this is something that is likely inevitable for me to do. It's just a question of when the right time will be!

Young Onset Parkinson's Disease resources

I wrote in the past about volunteering for the Board of Directors of the Young Onset Parkinson's Network. We had a great year and continue to add members, events, and resources. If you haven't checked it out yet, go take a look! We welcome both people living with Parkinson's Disease and their supporters (often referred to as, "care partners") to be members. In addition to a free session with a licensed therapist, there is a massive library of on demand videos with doctors, nutritionists, and people with PD. We hold regular events that include breakout sessions to get to know others in the community. It is my dream that everyone diagnosed at a young age is able to gain immediate access to this network to support them in the journey they have ahead of them.


Late last year, I joined the steering committee for the American Parkinson's Disease Association (APDA) to organize what we believe is the first ever large conference targeted specifically for those with Young Onset Parkinson's Disease! We have a venue, an agenda, and even a website. The event happens in October, and you can find out all of the details as well as register here:


YOPD Conference
https://bit.ly/yopdcon

I am so excited to see a conference like this one come together!


Microsoft world

On July 10th, I marked my sixth-year anniversary at Microsoft. The anniversary is a very special milestone for me, because it is the longest time I stayed at one company. Almost every other job I had ended because I had a new chapter to write. I left my job in the supply chain industry so I could start my own fitness business. I left my job at a start-up I helped build from the ground up so I could change my work/life balance and spend more time with my family. I left that job for the opportunity to build a new practice in a consulting firm and grow it to a multimillion-dollar revenue source. And then came Microsoft.


I knew Microsoft from using BASIC on the Commodore 64. I knew Windows 95 and still remember the first time I played DOOM on it. I used Internet Explorer and wrote JavaScript code to test the browser and figure out how to dynamically hide elements. I kicked off a blog with the troubleshooting tip to set a timeout on events triggered in Internet Explorer to be able to mutate the HTML DOM without throwing an exception. I used Visual this-or-that. I worked on a web app in the late 90s (yes, I'm talking about the previous century here) that used JavaScript to transform forms data into XML and post it to endpoints that passed it into the interface of a Visual Basic component installed as a COM+ package, then took the return data as XML, used XSLT to transform it along with a template to return XHTML. I remember installing Windows 95 and getting DOOM to run on it the first time. When I learned about the .NET platform, I adopted it immediately and moved our company to it. I watched the web transform with Silverlight and marveled at the success of Bill Gates.


In short: I was a fan of Microsoft, but initially did not want to work there (I knew too many people who characterized it in a negative light). I also assumed they wouldn't consider me because I never graduated college. Satya Nadella stepped into the CEO role and things seemed to change overnight. He didn't just give lip service to the transformation he believed the company needed, he was already empowering and catalyzing employees to make it happen. So, when a recruiter reached out to me and asked if I had ever considered working for Microsoft, I didn't hesitate to interview.

I was in awe of the campus and always loved visiting our remote sites when I traveled.

Campuses
Campuses

From left-to-right, top-to-bottom:

  1. The trees are bursting with beautiful fall colors beneath the skywalk that connected the buildings where .NET PM and engineering teams worked.

  2. Waiting for my in-person interview to begin, I snapped this "selfie" of an interactive art piece in the lobby. The "pixels" are pieces of wood with the end carved so it can rotate to expose more or less wood in the angle you are viewing from. A camera snapped my picture, analyzed the brightness, then instructed the wood pegs to rotate and reveal my silhouette.

  3. A cloudy day in Atlanta at the Alpharetta office.

  4. The infamous treehouses beckon Microsoft employees to enjoy the freedom of an Ewok party in the trees.

  5. My hiring manager and I meet the Channel 9 studios mascot.

  6. I enjoy a peaceful day from my quiet campus office overlooking a wooded section of campus.

  7. The windows in this Sunnyvale office masquerade as Microsoft's logo.

  8. The soothing sounds of a fountain in front of our cafe.

  9. The tiny studio I got to record at in Warsaw, Poland.

I mentioned Poland, but that's just one of many countries I visited because at Microsoft, I truly have traveled the world.

Countries of the world

Just a few places I visited include:

  1. The churches in St. Petersburg, Russia.

  2. The waterfront of London, England.

  3. A template in Mumbai, India.

  4. The city center of Warsaw, Poland.

  5. Cold streets in Zurich, Switzerland.

  6. A massive ship sails the humid skies in Singapore.

  7. Nelson Mandela dominates the square that is his namesake in Johannesburg, South Africa.

  8. I prepare for a public proclamation in the ancient stadium of Philippopolis (otherwise known as Пловдивски античен театър) that dates back to the 2nd century AD on my visit to Plovdiv, Bulgaria.

  9. The dragon's back is covered in the steam of the dragon's breath in Hong Kong.

A job isn't just about where you work or where you go, but about who you are with. I have been fortunate to work with some of the most amazing people in the industry.

"People"
  1. At our recent Build conference, I reunite with former coworkers Burke Holland and Anthony Chu.

  2. The ASP .NET team takes a selfie with Distinguished Engineer David Fowler. Or is it the other way around?

  3. I join Abel Wang for a fun and laughter-filled episode talking about .NET and DevOps. Rest in peace, my friend.

  4. My former manager, current friend, and longtime mentor Shayne Boyer and I enjoy a moment before a presentation begins.

  5. Cloud advocate Matt Soucoup and I share a laugh during the launch of a .NET release.

  6. Teacher, Role Model, former Cloud Advocate Cecil Phillip and I were set loose in New York City.

  7. Artist "reverent geek", Josh "Sailor" Lane, and Ian "Brickhouse" Philpot join me on the gridiron at a Music City Conference.

  8. MVPs and cloud advocates enjoy cloudier hops in the clear but dark skies of Warsaw's Old Town.

  9. Amazing host, thought leader, author, and caring friend Laurent Bugnion (you may know him as the creator of MVVM Light) with intrepid skier, high altitude dirt biker and longtime Microsoft MVP (now employee) Corrado Cavalli after a user group meeting in Zurich.

  10. Canada's least appreciated wonder Anthony Bartolo joins Erin Rifkin (who I met because of her role as a senior leader of our documentation team, got to know through our shared passion for hiking the Cascades, then learned at a conference in Hong Kong is the sister of the consulting manager who I met with every week at the company I was at before Microsoft) and my wife to celebrate a successful summit.

  11. Data's godfather, open source's muse and Entity Framework's empathetic leader (not to mention good friend and musician) Arthur Vickers and I enjoy a laugh with Jon Galloway.

Twenty-Five Years

In 1996, I packed everything I owned into a two-door Honda Civic (if you're curious, I owned a computer and some clothes, and my cat really didn't have a say in whether or not she joined me) and drove to Atlanta, Georgia from St. Petersburg, Florida. I purchased a little more furniture every paycheck, so after a few months I was sleeping in a real bed instead of a mattress on the floor and guests could actually sit on the faux leather couch, marvel at the fake gold lamp shades and stare at the spot on the wall a TV belonged.


I met Doreen at an Italian restaurant. I was there for a social meeting organized by a group of people connected via an Internet Relay Chat channel people like me used to learn about the area before I moved. I can't tell you exactly what it was about her that pushed me out of my comfort zone, but after she stepped in the door, I felt like I couldn't breathe. She locked eyes with me, raised an eyebrow, and smiled. Then she sat down next me and said, "Hello."


I knew within weeks that I wanted to spend the rest of my life with her. I proposed at the same Italian restaurant. When I was on one knee and she was crying and the woman at the table next to her insisting, "Girl! You better answer that boy!" there were no smartphones to capture the moment. Believe it or not, although the Internet existed, people were still deciding between that, the Microsoft Network (MSN), CompuServe, Prodigy, or America Online (the latter of which helped narrow down the field by purchasing CompuServe). Some of those services began operation before 1980! Commercials on the radio gave their "AOL search term" instead of a web address. Blogs were just becoming a thing, the last episodes of Seinfeld aired, and Grease ceased production on Broadway. A dollar could get you a movie ticket, a gallon a gas, and a dozen eggs.


From hours of surgery to stabilize her spine to holding each other as we processed my Parkinson's Disease diagnosis, from relaxing on our deck in the humid Georgia summer to enjoying a vegan meal overlooking downtown London, from walking on the warm sands of Todos Santos to collecting agates on the Oregon coast, from the house she picked for us in South Dakota that I saw the first time the day we moved in, to the house we have planned for the future, every year has been more amazing and our love continues to grow each year we're together by the grace of God.

Introducing Jinxy

For some reason now that our children have moved out, we keep adopting more. We always planned a companion for Pepper, we just thought it would be another German Shepherd. Then we thought about it and decided to make a feline-sized upgrade instead. Doreen researched cats that get along best with dogs. I am so happy to introduce you to our new Oriental Short-Haired kitten, Jinxy!


Photography

I've become deeply passionate about photography and am starting to enjoy landscape and nature photography as much as astrophotography. Here are some of my favorite shoots since I last blogged!

Clockwise from the upper-left: Crescent Nebula, Bubble Nebula, the Cat's Eye Nebula, and the Tulip Nebula. The Cat's Eye required almost 15 hours of total exposure time and I was exposing between 5 and 10 minutes per frame!

The Cygnus Loop

One of my all-time favorites was completed when I imaged another panel to make a large mosaic of the Cygnus Loop I call, "Alien." This is the ionized gas shell expanding from the central core of a star that collapsed into a supernova.

Here are two shots of the moon, one from a distance showing "earthshine" on the dark side, and the other extremely close to a crater showing the peaks inside the crater's rim.

These three photos are special to me because they represent the ultimate allure of astrophotography: the range of things you can do with affordable equipment. None of these photographs used a telescope or a special camera! That's right. I mounted my Sony Alpha 6300 (unmodified) camera with a Samyang 135mm f/2 manual focus lens and captured shots of the Andromeda Galaxy, the North America Nebula, and a region of the Milky Way!

Speaking of Milky Way, it's Milky Way season and I've been hunting!

Perhaps my favorite Milky Way shot to date is the massive galactic core rising over the North Skykomish River. I spend an entire Friday evening on the riverbanks photographing the sky and captured the evening in the video below. The last image was to prove a point. People often shy away from photographing nighttime targets during a full moon, and for good reason. The moon robs your camera of the light it needs to capture the details of your target. However, I wanted to provide that it's not impossible, as some say, to capture the Milky Way. Taken at the Baskett Slough National Wildlife Refuge in Dallas, Oregon, this shot is a single exposure of several minutes facing the moon full-on. Although it made a brilliant effort, I still managed to find my Way.

I saved a special Milky Way for this next set of shots that are some of my favorites taken from the deck on my home in Monroe, Washington that is right under a streetlight.

Clockwise left to right: the moon dissolves behind clouds as it sinks into the horizon. The shot with streaks is a combination of the light trails from drones, satellites, and airplanes I caught on camera that evening. The Milky Way is hard to find, but it's there, spilling from the sky into the glow of downtown Monroe. The last picture is a meteor I captured.

Some evenings I can't photograph the stars, but the intervening clouds are a beautiful target on their own. Oh, and the occasional rainbow!

I took pictures both night and day during a recent visit to the coast. The upper left photograph was taken early evening and shows a bird flying above crashing waves. The Milky Way shot in the upper left is sliced by the satellite trails of a "Starlink train" or a cluster of satellites recently launched into orbit. The second row features a 60-foot splash caused by a wave slamming into the Devil's Punchbowl. Next to that is the view of the Yaquina Bay lighthouse from the Inn at Otter Crest. The last picture is of the Inn itself, with the Milky Way arching overhead.

I love photographing Mt. Rainier. You can see the snow melt in these pictures. The last one was from a series of exposures that a single bird flew through.


I have a print gallery that you can purchase photo, canvas, and metallic prints from. Anything you see by me can be printed, so if there is a photograph that's not in the online gallery, just let me know and I'll work out the details with you. I'm also experimenting with limited set through a different service (check it out here) to see what's easiest to manage without compromising on the quality of the prints.


I had a lot to share and will try to write more frequently moving forward because I know there will be much more happening later this year. Until the next time remember...



Jeremy Likness













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