Doesn’t it seem like everything written for Parkies is directed at the newly diagnosed? For those just starting out on the journey who need to research still? For those wondering, does exercise really work? (Yes, it does.) What are the common side effects of all that medication? (Sleep, constipation, to name a few.) Is DBS in my future? (We need to shift our mindset to think of DBS as just another weapon in our toolbox. It’s a stepping stone in out treatment.)
I was diagnosed with young onset Parkinson’s Disease in 2010, but the tremor in my left thumb emerged three years earlier, just 6 weeks after the birth of my first son. I was diagnosed with Hashimoto’s Disease, or post-partum thyroiditis, and given beta-blockers, which effectively squashed the symptoms for another 3 years, until I stopped breast- feeding my second son and my hormones took a dive, creating emergency on Planet Me.
There is a picture of me from this time period at the Downtown Aquarium, which I did not buy, because, to my horror, I was posturing with my left hand in the shape of a pistol.
How many of us have had the experience of catching ourselves with our elbow up, wondering, “What am I doing? How did my arm get like that?” Yet another side effect of too much dopamine medication.
Anyway, those are my credentials. I was an Ambassador for the Davis Phinney Foundation, until I had two emergency surgeries back-to-back (not Parkinson’s related) and needed a full year to recover from those. I acted as a Guide for the Manual, Every Victory Counts, and strangers will recognize me from that. “You look so familiar. Have we met? Oh- I know- you’re from the Davis Phinney Manual – the woman who walks backwards around the park because of your dystonia.”
Yeah, that’s me.
I’m full of stories like that. Sometimes you don’t know what’s going to resonate with people. That one does, so I’m running with it.
There just don’t seem to be any voices for us middle-of-the road Parkies, who have had the disease too long to be considered “newly diagnosed” and not long enough to be considered “advanced stage.” Those of us whose Parkinson’s advanced gradually, and then suddenly.
My own experience is that I lived for a long time in the world of “This sucks a little bit,” where my kids didn’t believe I actually had Parkinson’s, to “Oh-Shit-ville” where my kids treat me with kid-gloves. And I went off the cliff suddenly, in a matter of a summer.
Suddenly, all that exercise seems for naught. I caught back up with those who have NOT spent the past 8 years spinning and boxing their hearts out, caught up in some Faustian bargain where you must exericise to move to exercise to move to exercise.
I live in a world where dance class has replaced Spinning, and Tai Chi has replaced CrossFit, and I can no longer keep up in a regular yoga class, where falling asleep on a PEMF mat has replaced pilates.
How things change.
And yet, I still hold out hope that these energy healing modalitites can stop or reverse the progression of my disease. That Qi Gong will eventually suspend me from further deterioration, that CBD oil will work its magic, that there is a common Parkinson’s personality we all share and sound healing has the ability to unblock that energy and let it flow freely. (Micromanaging sound familiar?)