Yesterday was Parkinson’s day for me. Well, every day is Parkinson’s Day, and while this is Parkinson’s Month, an entire month where I get feted, but not given presents, ice cream cake, or ceremonial ear pulls, this was a different kind of Parkinson’s day since it began with going to the doctor’s office for a 10AM 4-month checkup.
My doctor is a good guy. He gets it, and I’ve been seeing him since September 27, 2016, which was the day that got this whole ball of neurological wax going. The point of going is to find out where I am on the UPDRS (Universal Parkinson’s Diagnostic Rating Scale). This allows the doc to adjust medications and other treatments.
At my worst, I was mid-30s (just a Parkie baby, though experienced with enough symptoms to know Parkinson's sucks). At my best, I didn’t have Parkinson’s, which was up until 2011, though it seemed to always be lurking beneath the surface, ready to explode long before the first tremors and urinary changes happened (always feeling the need to go and not having a “strong” stream).
Now, now I have Parkinson's and it's the new normal.
The last time I went to the doctor's office, it was the beginning of winter. I was at a 16. Wednesday, I was at a 20. After the winter, the doctor felt this was good. I had more of a tremor in my right hand than left hand, which was odd since I began on the left (left hand > left foot > through the head > right hand > right foot). Shaking is just what Parkinson’s does. I guess you could say, “I shake; therefore, I am Parkinson's.”
I guess that makes my wife my Princess Leia!
I’ve reached a point where, though I can still use utensils and shave, my hands pretty much shake constantly. I let them. I can stop my tremors by tightening up my arms, but since my arms from fingertips to fingertips, across the shoulder, is in permanent action figure pose of rigidity, I choose to leave my body relaxed while I can.
The biggest happiness for my doctor was being this far into the game without levodopa. Granted, I have a super spider web pattern on my legs (livedo reticularis - that's my catwalk friendly legs) from the Amantadine (a “harmless,” but “U-G-L-Y” side effect of said medication), but I’ll wear that with the pride of a lack of humility (or being too old to care about what people think if it keeps me going).
From there, I drove to Philadelphia to meet the good folks at Health Union, who were interviewing me for a podcast. A few weeks ago, I had been suggested as a candidate, and I immediately jumped at the chance. I had never met them, so I was super jazzed. It was a moment where my words of educating and advocating were going to be given a 30-minute platform to speak to people, so why not?!
Upon arrival, I met Emily Downward (pictured at the top right), who is handling the project of interviewing many of their advocates, who write and speak out on behalf of 22 different conditions. The office is on Chestnut Street (smack dab in the middle of Center City and surrounded by banners of Phillies players), and the area is bustling with traffic, both foot and driven.
The office, too, is a hive of energy. Multiple floors house computer cubes, offices, and sofa areas, where a youthful staff write and post content, create art, manage a website, and meet to improve said Internet communications and causes. I’m not sure I knew what to think that it was, but let’s just say that running a website is kind of a big deal, and it's definitely staffed for such.
Emily escorted me to a room, and we discussed life with Parkinson’s, which should be out in June. I’ll just leave you in suspense to the details, but I’m excited about it. How can I not be? Emily runs a great interview, and she’s a great editor, so I’m sure she’ll make sense of my rambling flows. I’m sure she’ll take out the huge lost train of thought in the middle of one question, too, but alas… we all have our moments.
For those who aren’t aware, Parkinson’s train of thought takes your normal train of thought and switches it up kind of like shaking the brain and leaving the person in a pause, now and again. That’s why my doctor always asks me about my memory, which is generally pretty good, I think, though in long running trains of dialogue, it can get tripped up sometimes. Essentially, it’s like the London Underground, where there are 17 lines going at once, so it's inevitable something is going to go amiss.
These lines run all over the city. As with London’s underground. I have the Central Line, which is my main focus. I also have the Northern Line, which is my “Squirrel!” line. It can get diverted up or down by just about anything. I’ve got the music line, which is equivalent to the Piccadilly Line. I've got the Heather Line (AKA the Jubilee Line) and the family line. I’ve got 2 lines of random information that I’d like to know at any single time as well, not to mention the movie and literary quotes line and the random Jeopardy style facts line. I have 2 lines of random memories (good and bad) coming in at one time as well. They don’t all run continuously, but they’re there in much the same way as my places I have to go to line. Then, there’s the line of things that I should be noting down. There’s the voice of reason lines which belong to family, work, and society, and finally, there is the Circle Line, which is a centrally located line that runs around my brain and seems to go nowhere good since it’s my impetus to do something stupid line. Generally, I can avoid it by taking another line, but it’s there waiting just in case I choose to use it.
And yes, it does get some travel.
Adding Parkinson’s to the mix means that sometimes, someone is asleep on the train tracks, so we have to go a different way. Other times, we have work crews in progress since things are being done to make a section better. Sometimes, there’s nobody there to open up a necessary track. Finally, sometimes there’s just stuff getting at my brain, which makes it temporarily unavailable due to actions beyond its control. When things happen, as Parkinson's causes them to, the thoughts inside my head turn to confusion, irritation, anxiety, or simply being rerouted through an unlit tunnel. That’s what it feels like when you can’t get back to point C or point A from where you are around point B.
Let’s just say Emily is good at being patient while rerouting the tracks.
After the interview, I got to meet Kate Leonard (pictured left) and talk about Health Union, Parkinson's, writing, and her newborn son. It was great to meet her, too, and see some of the people who have brought me on to make the PD DOT NET stuff happen.
We have quite a talented team of advocates that you should check out. They come from all different backgrounds. Many are younger, which for the Young / Early Onset PD crowd is an important thing (since we're rarer), though they write for everyone based on their experiences.
That said, I encourage you to check them out.
I know I'm looking forward to going to Connexion to meet up with them in October (21+22) to experience the power of group advocacy!
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Have a great weekend!