PD is not welcome here
It's easy to be optimistic about a diagnosis of Parkinson's Disease (PD) when you aren't experiencing major symptoms. Everyone's PD journey is different. For the past two years my main symptom is a constant tremor. That's evolved to a very stiff hand that now interferes with my typing. In fact, I started typing this paragraph on the keyboard and quickly switched to voice assistance. I was more stubborn about accommodations in the beginning. Perhaps it's because they expose and amplify the condition, but that's the wrong way to think about it. Instead, I realized these accommodations help me be productive and adapt so that I can move forward with my life.
This blog comes at the tail end of Parkinson's Disease awareness month, so I want to share some information for awareness. PD is responsible for both motor and non-motor symptoms. Fundamentally, we know they are caused by lack of dopamine, so most medications are designed to either replace missing dopamine or minimize side effects. There is mounting evidence that a protein called alpha synuclein is involved, and promising research into methods that can halt or reverse its spread. The only scientifically proven way to slow progress is through regular, intense exercise. Many of us are literally fighting for survival to slow the onset of symptoms so we can maintain our quality of life as much as PD will allow.
I created a challenge to do over 66,000 burpees in 2022. Today I will do a total of 118 burpees because it's the 118th day of the year. I'm doing great so far. I no longer feel like I'm going to throw up doing burpees and knock out sets of 30 in about 3 minutes. That means at the end of the year I'll be spending just of 30 minutes daily. Honestly what's become more of a challenge is documenting the journey as I'm constantly producing weekly time-lapse videos to show my progress. Here's my most recent video celebrating 16 weeks of not missing a single day of burpees.
Just doing burpees with no other structured exercise, I've gained muscle and lost almost 20 pounds on the scale. Hiking season is here, so I imagine that will produce even more results. My primary motivation to keep going is knowing what I'm fighting against. Here are some of the things we get to look forward to with a PD diagnosis.
The physical motor symptoms are perhaps the most obvious. You may be surprised to learn that more than 1 out of 5 of people diagnosed with PD don't have a tremor and that something as simple as physically acting out dreams in your sleep may be a sign of PD.
This symptom has steadily progressed for me, mostly in my left arm and hand. It's what makes it difficult for me to type. I stretch throughout the day, wear a finger sling at night to keep my hand from clenching, and see a massage therapist every other week. I give my hand a break by using accommodations like speech-to-text so I can dictate rather than type.
If you're a Windows 10 or Windows 11 user and struggle with typing, take a look at the voice typing feature. It is surprisingly accurate. In fact, as I'm typing this, I'm upgrading my work laptop to a newer version of Windows 11 to take advantage of Voice Access. This new feature will let me control my laptop with my voice, using commands like "Open Outlook" or "Press Delete" to interact without relying on the keyboard or mouse.
I'm not quite sure what to make of this symptom. I do move more slowly, but that is because I'm stiff and also because I have a heightened awareness around the risk of tripping or falling.
It was a resting tremor that prompted me to embark on the journey that ultimately led to my diagnosis. It is also the one symptom that consistently gets worse over time. I used to be able to control it with enough concentration, but not anymore. Now it is a very visual indication of the disease growing inside of me. I'm not embarrassed by my tremor, but it is very frustrating to live with constantly. In the end, I'm thankful that it's "just" a tremor and not something worse.
One way PD is diagnosed is by examining your gait. The combination of symptoms that I listed before contribute to uncertain stride and imbalance when walking. So far, I have not had major issues. I'm hoping that the long walks I take with my wife and our German shepherd, Pepper, along with the longer weekend hikes I'll be taking in the summer will help keep that symptom at bay.
As if the myriad motor symptoms are not enough, PD also comes with its own set of non-motor symptoms. Here are some of the common ones:
Low blood pressure
I haven't suffered from any of the non-motor symptoms, although my blood pressure is at an all-time low my medical team attributes it more to my exercise and nutrition than PD. I also think that consuming a mostly plant-based diet gives me plenty of fiber it helps with some of the gastro-intestinal symptoms.
Surprise! We're not done yet. We also get (at no extra cost) a fine list of mental symptoms:
Depression and anxiety
I have noticed that I need to write things down more often than I used to in order to remember them. I'm also an expert with the multiple alarms feature on my phone. Otherwise, I'm doing well! I believe I experienced depression and anxiety as side effects of PD prior to being diagnosed in early 2020. I say this because both of those issues went away after I began taking my PD medications.
Here is the final list of fun facts about a body impacted by PD.
Drooling may happen as the result of losing control over the muscles in your face and mouth. Most of the time my facial symptoms manifest as an apparent scowl when my face goes slack, but I've had my fair share of drooling surprises too. Fatigue/sleepiness is something I battle during the day that I suspect is mostly a side effect of my medication. Prior to moving to Washington state, I also suffered from insomnia. Although use of THC for medicinal purposes is controversial and the research around how it may (or may not) benefit PD is still inconclusive, it works 100% for me. I take a small dose in the evening and have no problems sleeping deeply and soundly until the morning. It also helps suppress the feeling of nausea I sometimes experience as a side effect of taking ropinirole.
There is a lot of pain from stiff and sore muscles, but the worse culprit is cramps. I often get muscle spasms in my left foot so severe it causes my toes to cross at angles that just aren't natural. Sorry, but I'm trying to share what I can. I'm thankful I haven't experienced loss of smell. With the quantity of pills that I take daily, I'm in constant fear of developing difficulty swallowing. My speech is still good but it's another area of concern because I use speech to text services to help write blogs like this. There's a risk that the computer will not be able to understand me if my voice becomes too distorted.
Again, my motivation for sharing this laundry list of symptoms is not to be negative but to raise awareness. The positive is that I'm still productive at work and still fully capable of pursuing my hobbies. As many of you know, I'm passionate about astrophotography and had some great sessions lately. This is a photograph of a target known as M81, or Bode's Galaxy.
Because it's often cloudy or raining, sometimes my only available target is the moon. I've taken quite a few lunar images, including this color close-up of the almost-full moon.
I also am practicing high-magnification photography. Here is a closeup up the crater named "Tycho."
Of course, a telescope doesn't always have to point to the sky. Sometimes I point it at terrestrial targets, like this one of Mt. Rainier.
I am so excited to start hiking again and sharing photos of the beautiful Cascades!
Putting up a fight
PD is not welcome here. This year, I've taken a five-finger death punch approach to fighting PD.
As a leader in our disability-focused employee resource group (ERG) at work, I help spread awareness, connect with others who I can both mentor and learn from, and provide feedback to leadership about the experience of working with a disability
I signed up to be the "disability tester" for all of the trials and experimental projects then I can gain access to
I started the 67k Burpee Challenge to both be accountable and consistent and to raise awareness
I joined the board of directors for the new, non-profit Young Onset Parkinson's Network to help bring much-needed resources, support, and networking to the 2 - 4 percent of people who are diagnosed with PD early in life
As always, I continue to partner with Team Fox for fundraising that benefits research into finding the cure.
Last but not least, because it's fun but educational at the same time, I wrote and filmed this video for awareness.
PD is not welcome here!