Tuesday, April 12
I’ve read that the brain takes 72 hours to adjust to new physical patterns, which may explain why this morning’s walk was the exact opposite of yesterday evening’s pleasant surprise. My legs were rubber, stability was almost non-existent, and while the gait improved slightly, it never reached the minimum on the imaginary quality meter. Be still, my heart.
RLS is very strong and annoying. There are episodes of recovery dyskinesia but they are poses, whimsical flips, and amusing gestures that involve the arms, hands, and feet, and are not annoying. RLS is mainly in the legs and is deeply uncomfortable.
The evening walk between Piazza del Popolo and Corso Cavour was better than this morning at the Duomo. It reminded me of walks of a year ago when we had to stop frequently for me to grab a pole and rest, and when talking while walking left me breathless. It was a good reference for how much I’ve improved with the exception of days like these.
Friend says not to become discouraged, that discouragement is self-fulfilling.
Wednesday, April 13
Morning walk was a shambles, in part because the nail on my right big toe hurt. Fortunately, we were to meet Claudia at Maria Rosaria’s at ten, so while we were there we made a mini-pedicure appointment for eleven, and my toe got scraped and prodded and fixed. But despite a good night’s sleep I felt good for nothing all morning, so immediately after lunch I took a nap. A nap that lasted three and a half hours.
The nap rested me, but deepened the sense of ennui that followed me around this morning, so our evening Costutuente/San Leonardo circle was more organized, but still listless.
When I was a boy, my father, who was an avid restorer of antique cars, was given a 1913 Mighty Michigan touring car that had been stored in a barn for thirty-five years. The barn doors had to be cleared of soil and composted vegetation for them to open, and the car itself was a mess, but it had an electric starter, so my dad and his brother hooked up a fresh battery, topped off the oil, and gave it a try. The engine ground away and eventually turned over once or twice. They switched off the ignition, let it rest, and gave it another try. It turned over a few more times, sputtered into action, and died. They repeated this several times, until it finally caught long enough for them to back it out of the barn. (To be safe, they towed it home.)
I often feel like that car, and like my father trying to start it.
I watched the new West Side Story. I started to cry almost immediately and never really stopped; for the sheer artistry.
Thursday, April 14
I’d say there is something to the 72 hour rule noted on Tuesday. This evening’s walk saved my day. When we arrived back in Piazza Gonzaga after admiring the stunningly beautiful view from San Giovenale, Natalia suggested I walk on my own to where we had parked the wheelchair. I wobbled a bit at first, but then I began to imagine what real walking would feel like and lo! I began to walk for real. Not a full recovery of skills, but close enough that it made Natalia giggle. As we approached the wheelchair I panicked from excitement and fell into tiny shuffles, but only for a half meter. For the next ten minutes I kept repeating “every day I need to walk a bit on my own” until I’m sure Natalia began to think I had lost my mind. But I was a little discouraged all day (contrary to Friend’s advice) and those twenty or thirty meters absolutely changed my view of the world.
Friday, April 15
It is surely spring. It is also April, so spring takes a week’s holiday when the temperatures drop precipitously on Sunday. This morning’s walk was pretty good, but I never quite rose to the point of volunteering solo meters, and neither did Roman suggest them. My marathon sleeping is on another break. I slept well last night, but when I offered myself a nap, my body gracefully declined. Which leaves me wanting to walk on my own out in the spring; but that’s surely not happening.
Saturday, April 16
Confidence has returned. So has a massive need for sleep. Consequently, there is not a lot to report, except I did walk solo again on Piazza Gonzaga, and it followed the same contours as before. Natalia noted that I walk much better on my own than when I am assisted. I’m not sure what to do with that information.
I should mention that for the past week I’ve had muscle pain on the inside of my thighs at the groin. The pain would only show up while turning over in bed. Then late yesterday the pain moved further into the groin and localized on my right side, and hurt only while rising from a sitting position (or turning in bed). According to Recovering from Parkinson’s this is caused by improper flow in the Du or Stomach channel, and will pass. I find that reassuring.
Sunday, April 17
The pain in the groin was still strong this morning, but has begun to gradually disappear.
The big news was that after going to sleep at midnight, I woke around 02:00 and slept not again until 08:00 when I snuck a half hour in before Natalia woke me. What is odder, I’ve been unable to nap in a satisfying fashion all day, not even after a long walk on a crowded sagrato this morning. It is a problem of being unable to relax muscles, which is not a part of my usual repertoire. So, I looked it up. Sudden awareness of stiffness is a harbinger of the return of sensation and function to those muscles.
Internally, for the past few weeks distant and vivid memories are coming back to me; events, friends, moments long buried suddenly there again, and without judgement or excessive emotion. It’s rather wonderful.
Some days I cry at the least (positive) suggestion, most frequently being overwhelmed with gratitude, but also when confronted with beauty in anything, beauty that connects to something great and vast and indescribable.
I was finally able to nap for thirty minutes at about five, and woke much improved.
By the way, for weeks people have been telling me that I look much better. I just now realized that they are seeing the return of muscle function in my face. This is what recovery looks like!
Monday, April 18
That pain in the groin that seemed to be disappearing bothered me all night, and still hurts when I rise from sitting, turn in bed, or cough. So, sleep was often interrupted. I did, however, nap for three hours this afternoon. Anyway, that thing erased all attention to anything else.
Except this: the mucus flow after meals that has been a regular feature of eating for I don’t know how long, suddenly ceased today. I mean, almost completely. I have no idea why.
And this: today is Pasquetta. Seconds out of the front door, Ida and Hans drove up, “There is a solid line of traffic from the autostrada to Piazza Cahen,” she reported. Minutes after that as we turned into Piazza della Repubblica it became obvious that a whole lot of Romans had chosen Orvieto as their after Easter getaway. Piazza del Duomo reminded me of Bethesda Terrace in Central Park on a Sunday afternoon. I found it glorious.