I was just going to leave the title and post the blog "as is." But I wonder how many people would have caught onto the humor. So, before we get into what is a more serious topic, let's talk about the good.
Moving my disorder
That's me in the corner. That's me in the spotlight, moving my disorder...
Because I moved to the coast and my movement disorder came with me, I had to move my movement disorder specialist, which really moved my cheese. But that's OK, because I'm used to change. And in fact, I embrace it with two wide open arms. 50% tremor-free. I was eager to embrace my new movement disorder specialist, but he's so popular there was quite a wait. But the wait was over (like lifting a wait off my chest) and my wife and I visited him for the first time. By then embracing seemed awkward so I just shook. And hands.
I was very impressed.
He was familiar with my former provider's notes, but asked my explicit permission to conduct a thorough exam as if I was a first-time patient. I was very open to the idea and in fact, he had a very different approach in my former specialist. I won't say better or worse, just different. I think there was a lot more questioning of my cognitive abilities, giving me things to recall and having me do things like list months backwards. I got confused because I wasn't sure if I should start with December, Rebmeced or yraunaJ? Also, instead of just the normal hand tap and walking test, he tested my reflexes and examined other areas.
He tried to stump me by sharing three words, asking me to recall them later, and then a third time. I master memory games using mnemonics. In my case my memory tends to be visual. The three items were:
An airplane
A baseball
The color red
My mnemonic is to incorporate those into an image. I image-ined an airplane with a baseball on the side and a steak of red. I asked AI to render the image for me. It would work, but seemed a bit overembellished if you ask me.
The end result was some good news. According to his assessment, I'm not a good candidate for deep brain stimulation surgery (DBS) simply because I'm very functional on my existing meds and where I'm not, we can sort of smooth the edges with some tweaks. He gave me my first tweak that I implemented the 1st night, and it appears to be going well. I'm still very confident that DBS is an effective procedure, but obviously don't mind putting off something so invasive until I absolutely need it. And apparently that is not today.
I suddenly had a flash of how this will end up going. At some point, I'll be down to three dopamine cells. One will be dead, and the second will have the third in a headlock saying, "Tell me what you know!" while Sally from the Tet asks, "Are you still an effective team?"
Parkinson's awareness month.
April is Parkinson's Awareness Month. It is so much more official when you capitalize it (just don't capitalize on it). Per capita, e pluribus unum and we all just dance. My specialist asked me what the date was, and I correctly answered "March 5th 2024" so why am I talking about the cruelest month, breeding lilacs from the dead land and stirring dull roots with spring rain?
This year my new theme is "Planning ahead.: For example, I planned ahead for the eclipse last year and as a result, my daughter and I will be in the path of totality and hopefully be able to capture a few pictures. Totally. I also planned ahead for Parkinson's Awareness Month. I knew that I wanted to do another rap similar to last year's PD is not welcome here.
I wanted time to get the rap down as best as I can (because I'm down by law, and you know that I can) and also film a "good" music video. Last week I was on campus for a workshop that I helped host (my symptoms held up well, which was great because presenting can be stressful and often brings out my symptoms.). As I was on campus, I decided to take advantage of various locations to film some B-roll. I actually have four full verses written that I'm practicing, but here's the intro.
I also have a coworker who's willing to produce some entirely original music for it. But until then, I'm practicing at the same rate of 120 beats per minute using a track I licensed and my heart out. Here are a few clips as a preview of what. I hope to have finished in time for Parkinson's awareness month. Oh, and putting together the video too.
OK, bad to the lab with a pen and a pad while I try to get this... label off.
The heart of Redmond.
We stayed with friends when we drove up to Redmond who lived in the heart of Redmond, near campus. Bobby "Blue" Bland says there ain't no love in the heart of the city, but I beg to differ. In spite of a forecast that called for rain, I brought a case with my astrophotography gear, and we ended up with a few clear nights. After a bit of trial-and-error piecing things together, I assembled a rig and set it to work.
I pointed it at the sky, and it landed on a large target called IC1805. Due to its distinct shape, it is commonly known as the Heart Nebula. I found the true heart of Redmond.
Speaking of astrophotography...
Gettin' busy-ness
I have been overwhelmed by support, encouragement, and appreciation our community has for my astrophotography. I was given a very warm welcome and am "recognized" around town. The two most common questions I'm asked are:
Where is your art being exhibited/do you have a gallery?
Do you coach/train/teach/mentor?
Under other circumstances I'd consider starting a non-profit, but it seems like more overhead than I'm ready to handle right now. So, instead, I created a limited-liability company (LLC). No, it's not part of a plan to retire early or become a wealthy philanthropist who sells six-figure art. Instead, it's a way of legitimately providing the opportunity to exhibit and sell art here locally. Obviously as a business, I'll need to profit, but I seeded it with enough money to run operationally for a few years and we'll see how exhibitions go.
I'm excited!
Introducing: DSW Galleries LLC! If you're unfamiliar with my existing astrophotography site, DSW stands for "Deep Sky Workflows."
Apathy
I'm working with an amazing team to produce a new podcast for the Young Onset Parkinson's Network. It's so fresh that I don't even have a link for you yet, but it will come soon. As we connected with each other to prepare for the podcast, there were two topics that really grabbed my attention. The first was that we all seem to have a unique phantom smell that comes and goes. I don't have much more to say about that, other than, "That's interesting, too, Greg."
What was more intriguing was the discussion about apathy. To make sure that we're on the same page, apathy is a lack of feeling, emotion, interest, or concern about something. This may sound funny, but it's not: it's hard to be concerned about apathy, but it is concerning. Apathy strikes different people in different ways, and our ego can make it worse. I like to keep a positive attitude and make the most of life, so it is easy for me to say, "I'm finding my peace and calm and avoiding stress" when in fact, it's apathy.
How does apathy impact me? I'll give you a few examples. I used to take a shower every day and brush my teeth. I did these things because they are important for health and personal hygiene. Plus, I just took a shower, and it feels good and is relaxing. Would it surprise you to know I've gone weeks without doing either? To some, that may be both shocking and disturbing at the same time. I simply stopped caring. I would think, "I don't have time for that, there are other things to do."
It took me awhile to recognize what was happening. To fight it, I do the same thing I do when I work out: I make a commitment. I never had to commit to taking a shower before. It was just something I did! But now I need to consciously talk myself into doing both and remind me that they are important. That's just a small example, however.
What about my career?
I love what I do. I've been doing it a long time and I've been fortunate to work with great people and companies (hey, I've had some of the opposite, too, but that's water under the bridge). After learning that stress is a trigger for symptoms, I intentionally focused on reducing my stress. My ego told me I was successful when I stopped getting nervous about giving presentations or having difficult conversations. But in hindsight, it's probably more apathy than peace and calm.
Fortunately, for me, I've had a system to organize my tasks and boost my productivity, and it works whether I care or not. What scares me is that I know I want to keep doing this as long as I can, and I thought the limiting factor would be something physical like losing more function in my hands or starting to lose my voice. As it turns out, however, my biggest enemy may be mental. Apathy has the potential to pull the rug right out from under me.
What's ironic is that I still do feel. I feel deeply. I'll give you an example. Yesterday, I walked from our campus to my hotel that was a mile away It was a cool evening with clear skies. I felt so fulfilled from the day of connecting with colleagues. The summit I came to campus for is one that happens annually. My first summit was over 15 years ago, and I made friends and connections that have lasted just as long. The pandemic forced us to go virtual for a few years, so the event this year reconnected me with people I haven't seen in years. I was almost in tears with gratitude over the support of my friends, all who genuinely care for my health and provide support and check-in. I know it's there.
But here's the kicker. It's such a stark contrast to how I normally feel that it was like a kick in the gut. My normal state is not sad or depressed, but I am recognizing that it is apathetic. What should have just made me smile actually forced me to pause and catch my breath because the emotions were so strong. And quite frankly, that scared me.
The American Parkinson's Disease Association (APDA) has a great article about apathy and Parkinson's Disease. I'm quoting it here:
Someone who is apathetic might not feel sad or despondent, but simply has no interest in doing the things that he/she used to find fulfilling.
The positive is that I'm aware of it both as a symptom and something I experience, and that is one step in overcoming it. I communicate very openly and frequently with my wife, close friends, and colleagues. At work, I fight apathy through weekly one on one meetings with my managers and peers to hold myself accountable. At home, I communicate with my wife and friends so they know where I'm at and can provide support and encouragement.
Many people don't have the privilege of working at a company that actively focuses on accessibility and support. Many people don't have a wife they've known for 25 years who ca sense my emotions and provide support. Those people may not even know what's happening, and they're the reason I wanted to speak out about this topic. It can be hard to understand for people who haven't experienced it.
Here's my request: if you are reading this as someone who knows or cares for someone with Parkinson's Disease, learn about the invisible symptoms they may be experiencing and help them by looking for signs they may not be aware of. Practice empathy and try to realize when they drop the ball or miss the appointment or forget to do the thing, it may be more than just forgetfulness, stubbornness, or unwillingness.
Your empathy can help us fight apathy.
Concluding thoughts
I just realized something interesting. When I started writing this blog a week ago, my symptoms were so bad that night, I ended up using voice dictation for probably the first half. My symptoms have been so under control during this trip that I had no problem comfortably typing the second half. Last night I started to wrap things up and my hand was tremoring so bad I had to give up. I was too exhausted to even try voice dictation. When I woke up this morning, I felt completely different.
But that's life, isn't it? Ups and downs?
If you are family or a close friend, thank you so much. I cannot tell you how deeply I appreciate your love, concern, and support. Just when I'm ready to talk about lack of feeling and emotion, I end up in tears over gratitude for the people I have in my life. Even if you don't know me except for my blog or social presence, thank you so much for your time and attention.
Today, I feel PD strong.
