Pain is the new reality I'm adjusting to. The easiest way to describe it is if you've ever had extremely sore muscles after a workout or a work project that made it painful to lift or hold anything. This is what I experience, only it doesn't just happen after workouts, but every day. It's worse in the morning but persists until I go to bed. It's hits me the hardest in my elbows and biceps, but I feel it in my lower back, hips, quadriceps, knees, and feet. This is in addition to the muscle spasms and cramps I experience every night.
Fortunately, I believe that I have both the power and resources to manage it. Let me explain.
I have a personal quote that is almost a mantra I use to remind myself every day of the choices I have the freedom to make.
"Life is like going up the down escalator. If you stand still, you fall behind." - me
Parkinson's Disease certainly amplifies the impact of that perspective. The disease kills cells that don't grow back. There are ways to slow the progression, but there is no room to rest. PD is vigilant and inflicts its damage daily, so every choice I make that doesn't help slow the progression of this disease is a choice to fall behind.
Keeping score
I've written about how Parkinson's Disease is diagnosed in the past. One way to describe the disease is by stages. There are five stages to Parkinson's Disease, and this is a very oversimplified description of them.
Stage One is the initial diagnosis. Symptoms are fairly mild and isolated to one side of the body.
Stage Two is triggered when symptoms appear on both sides and become more severe and start to interfere with daily living.
Stage Three is signified by loss of balance and the potential to fall more often.
Stage Four is marked by severe symptoms that can restrict or prevent activities. Although people generally require assistance for activities like getting dressed, they are still able to move on their own or with the assistance of a cane or walker.
Stage Five is declared when a person is bedridden or confined to a wheelchair and requires assistance for daily living.
When I was diagnosed in February 2020, my symptoms were evident on both sides and so I was labeled stage two. Fortunately, the combination of medication and exercise improved these so much that I was "promoted" to stage one my next visit. I managed to stay in stage one for two years and just recently started seeing symptoms on my right side.
There is also a test that rates things like gait, cognitive ability, and dexterity. This test provides a score. I have no idea what the maximum is, but the relative numbers help everyone understand the rate of progression. After my first visit, when I scored a 21, I was ecstatic to drive that score down to a 7. I wrote about the experience in Lucky Number Seven.
For the first two years of my diagnosis, I was well ahead of my initial score. This year has been a bit different. Despite my best efforts, even almost 12,000 burpees didn't slow it down. I'm still only slightly worse than when I was first diagnosed, but the process is like a flywheel because the symptoms make it harder to push to try to slow the symptoms down.
I take some responsibility for the drop. After we went on our island vacation, I took longer than I would have liked to start training again. I've since resumed training and am optimistic it will both help with the stiffness and pain and slow my symptoms once more. I try not to be too hard on myself, because PD already does a good job of that, but I am also constantly reminded that PD does not take breaks!
A gut feeling
Several years prior to my PD diagnosis, I was diagnosed with eosinophilic esophagitis and gastroesophageal reflux disease (GERD). There were rings in my esophagus constricting my ability to swallow. The main relief for this came from taking Prilosec (prescription) and later Omeprazole (over the counter). This worked tremendously well to keep those symptoms in check. Unfortunately, those medications come with long term side effects, so my primary care provider encouraged me to transition off.
The transition did not go well, and I don't respond to alternate treatments. The result is that I cough, hack, and choke after almost every meal and it became much more difficult to take my pills. If you've never experienced GERD, heartburn is just part of it. The biggest risk is that food can enter your lungs and cause an infection because you end up having so much food rise back up after meals. I struggled with this on top of everything else for several months and have finally decided to go back on Omeprazole until my medical team can work out a plan. Some people risk the long-term side effects because they are less risky and dangerous compared to being off.
The plan
I didn't share this to complain, but to continue to be transparent about my journey so that others can learn from my example. The good news is that I have Parkinson's Disease. It's good news because there are people with far worse afflictions and living in far worse conditions than me. I have my life, and I have a modicum of control over how this disease progresses. Above all, I have Jesus in my life. I know no matter what is thrown my way, "His yolk is easy" and this is all just temporary.
God's greatest gift is freewill, so although prayers are welcome, it's my responsibility to take control of my life. I've refocused on stretching every morning before I do anything else. I started exercising again. I even dusted off an old game I used to play almost every day: virtual reality boxing. It was an eye-opening experience because I used to box advanced levels for 45 - 60 minutes and right now I can barely do 10 minutes of beginner-level courses. My arms end up aching too much. The pain is motivating because I know the more I focus and push, the better I'll feel, the less pain I'll experience, and the more impact I'll have on slowing the progression of my PD symptoms.
My movement disorder specialist increased the dose of dopamine I'm taking and added a third medication that I'll start soon. This is the trifecta:
Ropinerole is a dopamine agonist, think of it as "synthetic dopamine"
Sinemet is dopamine (carbidopa/levidopa)
Rasagiline suppresses the enzymes that break dopamine down, so it stays in my system longer
That's the medical attack plan.
A final word
There are so many blessings in my life and my final word is that pain and symptoms aside, life is wonderful. My wife and I share so many amazing experiences together and with our service dog, Pepper. We take weekend vacations to areas around Seattle. Recently, we joined friends we met through the Seattle YOPD support group at their beautiful home in Silverdale where we celebrated Christmas with a gift exchange and lifted each other's spirits. Doreen and I booked a room and stayed overnight in Bainbridge. I snapped this picture on our ferry ride home.
Seattle's favorite volcano continues to delight.
If you enjoy these pictures, take a look at my gallery of Mt. Rainier photographs.
Here's a gallery of some of my recent astrophotography. It includes the Ghost of Cassiopeia, the "sword" in the Orion constellation's belt, the moon, Jupiter with four of its moons, the moon again, and the sweeping California Nebula.
After receiving several requests for prints, I set up an online shop and found a printing lab to partner with. I recently printed several pieces and already have them hung.
Here's a close-up of the metal print:
...and this is what the canvas looks like:
I'm very happy with the quality. If you're interested, my online galleries are here: Astrophotography prints online.
This disease treats everyone differently and respects no one. I continue to thank God for the things I can control and trust in Him for the things I can't. 2022 has been a blessed year and I wish you abundance, happiness, health and success in 2023. Thank you for being with me on this journey.
In Him,
