Tuesday, March 14
I slept eight hours with only one brief interruption at about 02:00. There were other points during which I was conscious enough to note my twirling and rolling between positions and that it was impressively agile. Then we walked the garage. By 10:15 I could barely remain awake. At 10:55 I got into the recliner and immediately slept until woken by lunch call and an twitching left leg. After lunch I returned for what felt like a fifteen minute snooze, and woke at 14:30!
The evening walk was very instructive. There is a pattern. The first two garage laps I shuffle and groan and hold onto Roman’s arm like dead weight. By the fourth, the feet are silent and I’ve lightened up. Then I walk solo with Roman shadowing. Tonight, at every turn I took a pause to straighten posture, beat my chest like a gorilla – or like Tarzan, or Charlemagne, or Harriet Tubman, some other strong individual – and went forth with atteggiamento sicuro. It was exhilarating. Then we went to Blue Bar and enjoyed Antonny’s amazing social skills.
Wednesday, March 16
We kept the walk routine, morning in the garage, evening at the Duomo. In between I slept a lot, and had a wonderful lesson in Alexander Technique.
Thursday, March 17
Slept well, woke spritely, was already tired when we went to the garage at ten. We came, we walked, we left. I slept through the leg massage and kept falling asleep through the back massage (given in a chair, so not so easy to do). I went straight to the recliner at 11:10 and slept profoundly for a bit more than an hour. Then lunch, but the nasal mucus flow began about three-quarters through and I lost interest in food. Roman left and I retreated to the recliner and slept for another hour. Then I spent an hour catching up on news public and personal and slept another hour. I woke feeling fantastic.
Back to the mucus; has anyone had the experience of taking Zyrtec for allergies, having it work for a day or two, then not at all?
Back to sleeping a lot; it is a recovery symptom that, for me at least, comes and goes periodically. I rather like it, but it’s hard for me to explain in Italian. So sometimes I feel like a sleepoholic who hides my naps and denies that I am as sleepy as I act and feel. That deception doesn’t keep me awake nights, but I do have a need to confess.
This evening we walked the Duomo. I did over half the distance on my own. I learned a lot. Everything leaned heavily spontaneous. Confidence. I brimmed with confidence. Doesn’t matter about what, it is a clear, crisp state of being that we can carry with us like a rose. By 8:30 that rose had withered, but is wasn’t dead, just not as crisp. As the flower drooped, the body grew a bit stiffer, but not for long. The confidence lurks, promising to bloom anew, and I am confident it will.
To add to the list of little things: for the last two days I’ve been able to finish a beverage to the last drop, something I’ve not been capable of in a long time because I couldn’t tilt my head back. This is a special thrill when the beverage is hot milk and honey.
Friday, March 18
Walking this morning was great. There was no shuffle, I did more than half on my own, and speed was entirely under my control. Then off to the dentist for a cleaning, followed by a pizza by Tempio di Etrusco’s new pizzaiolo (and my longtime favorite pizza maker) Kamal. It was telling that I ate an entire pizza without provoking more than a few drips from my nose; at home it would have been, well, a mess. There is something about my apartment to which I am allergic.
Having enjoyed a wonderful morning, I took a short nap and woke feeling really strange. Was up for an hour, then slept another thirty minutes and felt better. The confidence of the last few days is taking a rest and is replaced by a non-specific, mild dread. Also, sitting for more than a half hour at a time is very uncomfortable. But even at home, when I get up and walk to relieve the discomfort, my stride is smooth. But sitting is a parade of clenching muscles, mostly in the thighs. A couple of minutes pacing resets them to neutral, but it isn’t long before they are at it again.
Typing has been good all week.
Saturday, March 19
The morning walk was up to par again, and I bettered it in that arms were loose and free – even showed a bit of swing. I feel some confidence returning. After massage and bathing, I sat a few minutes early to nap and fell asleep before I knew what was happening. Slept for about 90 minutes (that, after a solid eight last night, with relatively easy turnings and rollings) and was woken again by muscular jumps and twitches. I sat back down after another 90 minutes and slept undisturbed by anything for an hour.
The evening walk went from the top of Piazza Gonzaga, two full circuits, a stroll to the cliff at San Giovenale, and a return (about half of which was on my own). It was difficult, but good to do.
As evening comes I feel the strangeness of the past couple of days creeping back, eroding the confidence. Trying very hard to keep the medulla oblongata at full flow, but it seems to top off at eighty percent.
Typing is very good, as are all things requiring manual dexterity.
Sunday, March 20
I begin this entry very early Sunday, in fact just after midnight. I rewatched episodes from season one of The Marvelous Mrs. Maisel, earlier, with my legs and back hurting and clenching, but even with those distractions I enjoyed the episodes as if they were new. There were moments I had not remembered at all. I took a needed break from sitting in front of the television, and read a piece of Recovering from Parkison’s. Passages I’d read before were not at all familiar.
I had spoken with my friend Nan earlier in the evening and out of nowhere she asked if I did stretches at all. I used to. I took a forced break when I injured my Achilles tendon almost two years ago, picked it up again once that had healed, then stopped again during and after hospitalization last summer. Last night I got down onto the floor and restarted. It seemed impossible at first, but Friend kept whispering that it would quickly grow easier, so I persisted.
This afternoon I tried again, and what was nigh impossible last night was relatively easy today. I’m only doing four or five poses/stretches so next I will try to remember my old routine and we shall see what happens.
The other major change requires some background. One of the principal goals of recovery is to reactivate the striatum and thalamus in the mid-brain; both are involved with management of dopamine production and distribution. Brain scans have shown that when a person is in heart-felt prayer, or anything like it, these areas become highly active.
So, what Janice advises is to form a parasocial relationship, that is to replace our inner monolog with a dialog with an invisible friend, someone close who has died and with whom you had an easy, humorous, and loving relationship. I had read that section in Recovering From Parkinson’s at least a dozen times, but last night saw it with new eyes. A natural shift in who I had chosen for my Friend had occurred a week or two ago that saw three connected relationships functioning as one, but another shift occurred last night when I finally understood the importance of the connection’s being a deeply personal one, like a best friend or favorite aunt. So, with all due respect I thanked and turned aside from two thirds of my inner troika and began to converse directly with my long-deceased best friend. The difference was immediate and profound. Love flowed. I felt safe.
Going over familiar territory for another look is rarely a waste of time.
Standard reports: walking unremarkable, sleep (a lot of it) very pleasant, typing and dexterity better than average, voice is often so strong that I occasionally startle myself when I speak.
Monday, March 21
I slept in any damn position my body fell into last night; there is great freedom in that.
Welcome to spring! Benvenuto alla primavera! We stayed out longer than usual this morning in celebration, and when 11:00 came around the limpness exploded upon me like a stage effect. I began a recliner nap at 11:30 but was somehow able to remain limp and tense at the same time. A quick lunch ensued followed by a shift of venue to finish the nap – on the bed in the sun. That was very relaxing, so I napped in bliss until 14:00. Then I napped again for thirty minutes at 16:00. Altered sleep patterns are a recovery symptom (and usually in the direction of excess) but it goes on and on, takes a break for a few days, then returns overwhelmingly. Fortunately, most of what I could categorize as work does not demand my wakefulness these days, so this interpretation of narcolepsy is tolerable.
When Roman arrived for the night shift, he was telling me about our needing to stop at B&B La Magnolia on the way to the Duomo. I missed some of the references so didn’t get what he was trying to make me understand.
Then I did.
“A Ukrainian woman arrived here yesterday. She knows no one in town, doesn’t speak Italian, and has four kids with her, one of them an infant. Serena at La Magnolia is giving them a place to stay. I got her a few things she needs,” said Roman.
I burst into tears. We all need a good cry these days.