Tuesday, June 27
Not a lot to report. Walking continued difficult except for brief and randomly occurring episodes, some of them in the middle of the night when a sudden lightness informed my gait. Sleep got better as the week moved on. Typing did not.
A street exchange with my friend Massimo captured it for me the best.
“How are you?”
“I feel fine. Walking is difficult, but I’m good”
“I understand.”
Tuesday, June 20
A shift in self image occurred last Thursday from old guy fighting to walk to a forever youthful man facing a surmountable challenge; that lasted a couple of days, then returned for brief periods. Mousing became easier for the day, a really welcome change.
More or less simultaneously the energy surges reported last week have become routine, repeating themselves dozens of times daily, most often deliberate, sometimes on their own.
On Saturday’s morning walk everyone we passed looked odd and misshapen. That evening, they all looked like movie stars. Attitude is everything.
Also randomly, a fluidity found its way into movement from time to time, nothing dramatic to look at, but wonderful to feel. On the other hand yesterday and today movement of any kind has been extremely difficult. On the other hand, I’ve been giggling at my body’s foolishness. Attitude.
For my fellow travelers and for friends who are feeling super nerdy, attached is a comparative taking stock of symptoms. Disclaimer: no sooner do I “finish” the list than the particulars change, so this is a snapshot of an ongoing parade, generally reflective, but not a scientifically accurate report. Click here to be overwhelmed.
“Doctors see Parkinson’s as a problem of motor function and a problem of tremor, only. Because of this, doctors and patients alike usually only look for a return to motor perfection or cessation of tremor when they look for evidence of recovery. But normal motor function and cessation of tremor might be the last changes to be realized.” [from Recovering from Parkinson’s by Janice Hadlock]
Tuesday, June 13
Sunday evening while standing up from the recliner, I spontaneously felt a surge of energy go up my spine, join light flowing into the medulla oblongata, spread over the thalamus and striatum to the yin tang, and down onto my upper lip. The next five or six steps from chair into hall were smoother and more fluid than I have felt in years; alternate distribution of weight, better posture and balance, looseness in the arms. I said, out loud “is it really that simple?” and Friend answered, “yes, that simple!”
I’ve tried replicating the sequence since then with mixed results, but am nevertheless encouraged. Oddly, I can’t come close to reproducing those strides on formal walks in garage or at the Duomo, but can, from time to time, while pacing the hall. Part of that may be due to antibiotics I’ve started to clear up an ear infection; they always make me groggy and vague. But even though today has been especially dopey, last evening I picked three things up from the floor without leaning on anything to do it! That would not have been possible last Saturday.
Tuesday, June 6, 2023
Somewhere in the www.pdrecovery.org literature is discussed the necessity of regularly visualizing what it feels like to walk normally and automatically in order to hasten restoration of movement during recovery. I’ve tried this while seated (I fall asleep) and while walking (I get distracted or self-conscious with other people around) or while pacing the hall (I forget or mentally wander). This week I realized that my pacing sessions are regular, solitary, and numerous, so it would make sense to somehow attach the visualizations to them.
I begin each lap sitting in the bedroom, so I decided to take a minute before standing to imagine what it feels like to walk vigorously and freely, then on the way to the kitchen to pause at doorways to refresh the imagery. And it worked! The improvement is often immediate (though probably would not be to an outside observer) and sometimes carries over into the next session. And it is easy to remember and to sustain, already connected, as it is, to a well-established habit.
I’d recommend this format to other PD’ers (if they can visualize and walk on their own), regardless of what path of treatment they are on. It’s not a steady improvement, but over time it will benefit.
