Tuesday, August 9
It was a typical two-part night, the intermission lasting about two hours. When I finally returned to sleep, I held the same position for three hours. Trying to reach my phone to check the time was sack-of-gravel all the way. Everything was at a low ebb as of noon, dexterity, mobility, speech, but showed some signs of improvement during the afternoon.
FRIEND: Forget improvement, that doesn’t apply.
ME: Is this what you meant last Thursday by changes and not to be freaked?
FRIEND: Yes.
ME: It’s awful. What is it about, what’s the rationale?
FRIEND:You can invent dozens of reasons, the process is so much more nuanced there is no reason to struggle with rationales.
ME: But how could this be for the good?
FRIEND: You have to wait for it, you have to trust.
This was accompanied by a huge rush of energy up the spine and into the head.
ME: I have to trust.
FRIEND: And accept.
For several weeks now I’ve noticed a perverse pride in my symptoms. When someone makes light of them or offers help, something deep bristles, wants to protect the purity of my struggling. Next moment of joy that habit is on my list for destruction.
Wednesday, August 10
Several years ago, not long after I began to feel symptoms, I consulted what I called my inner companion about what I should do if indeed they indicated Parkinson’s. The answer was clear; you will get through this. I asked many more times after that and the response was always the same, with an emphasis on the word “through”. Who I now call Friend backs this up.
Today, I fell into wishing I could do life over as I experienced all the ways I’d been egotistic, especially regards my parents. I did what I always do; I dismissed it as impossible, regret must be lived with because what is done is done, no one can take back time. Friend took me by the hand and showed me that past reasons for regret can be resolved and must be faced, must be gotten through and dissolved.
So, I embark on a new leg of the journey, turning regret into granting and requesting forgiveness, then letting go. It’s an ongoing project, and will free the heart. Will get me through this.
OR
Limpness dominates (recovery symptom), legs of rubber. Really tired of this!
Thursday, August 11
Slept well in two parts, and was comfortable all night. Woke before Roman arrived, and walking around the house was hugely better; turning, standing, speed control – all of it easier. By the time we left the apartment two hours later, all was back to where it was last night. Very disappointing. Napped on and off after walking (and listened to music) until almost four. Movement was in between – better than earlier but not as fluid as early morning. What is going on!? I ask my Friend. Ask a simpler question he tells me back. Don’t freak out, it’s all for the good.
Friday, August 12
I noticed very clearly during the day that I was aware of a vast space in my heart region (where Friend recently transferred to new digs), and that I had a choice; live there with Friend, or return to the twisted, damp quarters of non-specific location that I am used to. I chose the heart and noticed an immediate difference. Then Maria came over in place of her husband, Roman, and told me that the puncture wound he got in Rome when he stepped on a nail was causing his entire leg to hurt, and within seconds I lost track of the penthouse apartment of my heart. Several hours later, awareness is almost what it was. Very instructive.
From Recovering from Parkinson’s by Janice Hadlock
“Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering from Parkinson’s disease. The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.”
Saturday, August 13
From Recovering from Parkinson’s by Janice Hadlock
“Again, during recovery, the ability to imagine certain movements might still be dormant for areas where the body has been rigid, as opposed to numb. The muscles for these areas, muscles that had been rigid while on pause, become limp and unresponsive when pause turns off. It seems as if, when pause turns off after decades of inhibiting the brain’s motor-imagining area, the use and coordination of some of these muscles cannot be accessed right away. If they can’t be accessed, the muscles behave as if they are asleep – still disconnected from the mind’s motor imagining area.”
And that was my day (and week, plus).
Sunday, August 14
I’ve been having periods of lighter, looser walking since yesterday sometime, brief periods that end as suddenly as they begin. Then, typically they leave me tired. So, I enjoyed a good night’s rest with an hour intermission followed by deep, comfortable sleep, and frequent naps. First movement this morning and yesterday was very encouraging (as it often is) but tightened and lost control after 90 minutes or so. After naps, nothing works for fifteen minutes, then once on my feet movement can be anything, though generally since last evening it has been controlled and easier than I’ve grown used to.
Attitude is generally pretty good, but today I overdosed on news (on weekends, “speculation” is a better word) ignoring Friend’s warning, and that has muted my mood.
Monday, August 15 – Ferragosto
A walk this morning was suitable for the (Extra-Special) Olympics, with a general lightness of being that was delicious. That waned by 13:00, but an echo of the lightness remained. My Italian also improved.
Evening walk was record-breaking according to Roman; six laps on the sagrato without assistance, and without stopping. For part of that without shuffling. But more significantly, the pericardium was energized.
Last night I watched a documentary on the evolution of American urban parks and cried from the beauty and creativity of it all.