Month: February 2022

Tuesday, February 22

I’ve noticed a tendency to go blank at about 11:00 am, and to stay that way for about two hours. Because Roman has my days scheduled, I move regardless of my inclination not to. The result is two hours of euphoria when everything is breathtakingly beautiful. Okay, the view from the cliff this morning at San Giovenale was especially spectacular for its vibrant colors washed in air so clear it sparkled, but so was the plywood and corroded wire protecting a cellar door under repair down a rusticated alley. All that is a variation on a recovery symptom, which makes those two hours doubly special.

From the list of little things; I’m walking with my whole foot, rolling from heel to toe, something I may have never noticed until I stopped being able.

We went to Blue Bar after an evolving walk on the sagrato, visited with Erika, and petted her dog Teah. The small repetitive movements it takes to pet a dog properly have been beyond my skill set for many months until today; big bonus. Very nice end to the active part of the day. I was very tired after supper, listlessly watched some video, went to bed earlier than usual and slept eight hours.

Wednesday, February 23 

We walked nearby Piazza Gonzaga, but not long enough to get the kinks out. Alexander lesson was arduous but very effective (and coincided with my blank period). I’m supposed to lay on the floor of the study for twenty minutes a day but getting down and up again is rather demanding. We shall see.

I napped after lunch and so sweetly it surprised me. Naps in the recliner of late have not been so rewarding.

The list of little things: typing is especially good, the right arm continues to be loose, pins and needles in my hands are very intense (and spread when I cough).

The toddler metaphor holds; a few days of euphoria, solid energy, and occasional physical spontaneity, followed by being really tired and cranky. Nuff said. Good night.

Thursday, February 24

I slept very well, woke to a dream of beautiful music being sung by three fabulous sopranos. Shared coffee with my very special friend, Lisa (during my zombie hours). Lamented the pointless tragedy of Ukraine with Roman and others of his community. We walked alleys near Piazza Scalza, hilly and twisted; not easy but psychologically healthy. I napped for ninety minutes like I needed it. Walked the sagrato with increasing confidence. Talked with Emiliano who was re-opening his Osteria del Duomo. We stopped for gelato on the way home, saw Sara for the first time in well over a year. Once home, I obsessed with the news. 

Friday, February 25

We walked Piazza Gonzaga to San Giovenale during the 11:00 to 13:00 blank period, and while it was pleasant enough, walking itself was a hundred percent deliberate. Then, while still blanking, I was given a shower and ate lunch. As Roman left, I took up residence in the recliner and slept deliciously for two and a half hours!

If you had asked me at five this afternoon how I would be walking this evening, I would have predicted awkward, noisy, and deliberate. So it was a great surprise when it was spontaneous, smooth, and silent – and accompanied by birdsong. There were also waves to all the people who live or work in the piazza and have become friendly. It called for gelato on the way home.

Saturday, February 26

Slept like a stone again, although my right shoulder was particularly painful for some of the night. Was hazy all morning through prep and walk and after. But walking was smooth, silent, and generally spontaneous. Napped a total of two hours in separate shifts, and woke feeling alert and focused. I spent a little moderately useful time on the novel. The evening walk was better than usual, and agility is for the most part spontaneous and quick.

Sunday, February 27

Another great sleep, more comfortable than I’ve been in a long time. I woke feeling like icebergs of symptoms had fallen away. After actually rising I understood that was a tad optimistic, but some of my early walking included a bounce, equilibrium is much improved, my sense of smell is occasionally active, and agility is (for the most part) astonishingly quick. Also, I can go hours without peeing (and it is seldom urgent anymore), ankles rarely hurt, left knee is also hugely better, the stabbing pains in my feet are rare, and restless leg syndrome has calmed way down. I can still sleep any time and anywhere, but that’s probably because my nervous system is working hard to heal and needs the rest. No complaints, here.

Well, maybe one or two. At around seven this evening, I became suddenly droopy tired, apparently a replacement for the morning droop of the past few days. That lasted until about nine, then followed a wilting pain in the right shoulder and forearm.

Monday, February 28

I slept two hours, then two awake, then five more in blissful sleep. So, okay, that’s an odd step backwards but not bad. Pins and needles, always in hands but sometimes elsewhere, have been constant. They are a recovery symptom, but that doesn’t make them comfortable. Otherwise dexterity, speed, and ease of movement is good – not yet with walking and definitely not changing direction on my feet, but both are better than usual. Typing leans towards awesome (viewed in context), or at least it was until evening when it took a dive.

Tuesday, February 15

Oh, did I sleep so sweetly, all spread out and splayed, arms and legs akimbo, discovering places I could put my body I’ve not explored in two years or more. And I dreamt of friends long-lost and it was such joy to see them again.

Walking leaned towards deliberate, everything else (except for typing) leaned towards spontaneous.

In the evening we went to Blue Bar. Only Antonny the proprietor and our friend and barber, Alessandro, were there, so we settled in for a wide-ranging conversation about movies. Haven’t had such good fun in awhile.

Wednesday, February 16

Everything leans spontaneous today. Alexander lesson was so subtle I found it difficult, but I felt more balanced afterwards, so good. I want to work on the book but typing lags a little behind the rest of my movement. But I am also experiencing a kind of writers’ block; afraid to go forward for fear of painting myself into another corner. In the meantime, my spirits are high, my heart is light, and my body has shucked off a layer or three of oppression. It’s hard to describe, but I feel as if I’d been wrapped in plastic film and suddenly it’s been cut away – or most of it. I’ve not felt this free and joyful in (maybe) decades. And my Italian is smooth and confident despite a constant stream of errors.

Thursday, February 17

Walking fit into the deliberately spontaneous slot, today. The best example of what movement was like rests with the putting in of my hearing aids. Until two or three days ago, just getting them tucked behind my ear was an acrobatic feat; I dreaded doing it. Then that started to change, and today it was as easy as two years ago. 

I continue happy and relaxed socially, more so than I have been since I was a kid. I slept a lot today, but easily, without RLS, and without grogginess in between. My voice has been clear for several days, and my arms loose. Typing is better than average.

Friday, February 18

Typing continues to improve, if I don’t watch out I’ll lose my best excuse for not working on the novel. Lots of small actions continue to improve, things I notice during the day that are too difficult or embarrassing to describe in this journal. Walking is improved, too, but still awkward, and that sets up a tension between my body’s craving the exercise and my legs not being up to it. Arms are loose. And I am happy, speaking well and freely, reveling in company as it presents itself, glad to be alone when it doesn’t. 

The evening walk was a strange hybrid of elegant spontaneity (relatively speaking) and trodding deliberateness. I am, however, getting in and out of chairs with such (relative) ease that I do so unnecessarily for the fun of it. 

I had a chance to pet the adorable little black dog at the tobacco store in Via del Duomo. Made my day.

Saturday, February 19

Today feels mixed. Walking was definitely in the deliberate side of things. Dexterity leans largely spontaneous. Hands are covered with pins and needles. Getting in and out of chairs is much better than it was two or three weeks ago, but harder than it was mid-week – or yesterday. Typing is better than it has been in awhile, but still wouldn’t win any stenographic awards. I want to walk briskly up a hill but know it is not possible. I want to work on the novel but am weighed down by lassitude and self-doubt, maybe a soupcon of brain fog. 

The actual walking this evening was unremarkable, but the town had gone from empty last night to an explosion of energy tonight as families took to the streets to celebrate Carnevale ten days early. My favorite costume was a dinosaur in a stroller, sound asleep. The celebrations begin a week or two after New Year, the confetti thickening as the actual day grows closer. It’s Italy, where Carnevale is at least as long as Lent – as it should be.

Sunday, February 20

This morning Natasha wheeled me to Piazza Gonzaga and we walked to San Giovenale and back. Deliberately. Slowly. But without undue strain. This puts walking almost to where it was before I fell, except that today I didn’t shuffle and posture was pretty good. 

Then we wheeled to Torre del Moro, listened to a couple of street musicians, admired the ways people were dressed, interacted with little children. I watched a toddler’s fascination with the music; his wobbly approach and unplanned sit that drew a protective jerk from his mother until she saw that he was not bothered by his sudden change of elevation.

I thought about the novel without advancing it in any way.

What works in the morning, works at night – repeat the walk.

Monday, February 21

This from an earlier email by Janice (The Parkinson’s Recovery Project) describes the first part of the day perfectly:

“you are recovering. isn’t it glorious? and yes, it can be slow, and seemingly unpredictable, and frustrating at times. but it’s actually very predictable, if only you could see what is going on in your brain. anyone who has raised a child will be able to compare this to the baby who magically does a new motor skill one day, and does it beautifully. the next day he does it very poorly. and then he doesn’t even try for a week or two or three. and after that, he owns it and never loses it. and in the meantimes, he sleeps more than usual and is cranky and emotional.”

And so followed the evening.

Tuesday, February 8

I slept in bed with no problems turning over or adjusting position for about six hours without interruption; Roman arrived, I peed, and slept another hour and a half. Movement is more fluid today, and our three rounds on the sagrato, while not up to the ease felt on Saturday, were distinguished by lack of shuffling and good posture, both automatic and without deliberate mental effort. The evening stroll was a little better than the morning, but in the same general category, and six rounds. Words are difficult to put together and typing is halting, but neither is extreme. The right arm is very relaxed.

Wednesday, February 9

Both morning and evening walks were on a par with yesterday evening or better. I slept for 7 hours last night without rising for any reason! I can get into and out of chairs without strain. Typing ain’t great but has been worse. Had a wonderful session in Alexander Technique. Life is good.

Thursday, February 10

Walking is still good, but without spontaneity and bounce. Those were on the way out yesterday evening, so no surprise. I slept well again last night and took only one relatively short nap today, so sleep patterns feel fairly normal. Eating lunch was logistically challenging what with a right arm tremor and general lack of dexterity, but eating an afternoon snack and supper was normal. I am emotionally trigger happy about anything and nothing. Typing is not bad but pretty irregular. Life is still good.

Friday, February 11

I lack the word. There were two or three days this past week when the prevailing state of movement was spontaneous and relatively strong and fluid. I don’t mind calling those good days, they are and I enjoy them. But last Saturday’s good day was followed by Sunday’s day of my body’s regrouping and learning, and brain recalibration. Good stuff is happening on those days so I don’t want to call them bad. How about movement spontaneous and movement deliberate? That’ll work for now.

Well, then after several movement spontaneous days this past week, I’m having a movement deliberate day. But compared to last Sunday, today is spontaneous. True, getting out of a chair is harder than it has been so far this week, but I still can and with minimal struggle. Walking today lacks spontaneity so it takes conscious attention to maintain good posture and stride, but I’m not hunched and shuffling. So, if this is as far as my brain needs to go towards deliberate this cycle, things are looking good! 

On the theme of looking for words, I happened upon this from the text of Recovering from Parkinson’s and it filled another gap I’ve been feeling about my reporting.

“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.

“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, February 12

Rose early so to get to a dental appointment, and consequently had an early breakfast. We went to the Duomo for a walk after the dentist. I started with tremendous energy and wore out at a half lap. Too hungry. Otherwise, movement is rather fluid, dexterity good, and speed of movement is increased. Typing is very good. 

I feel emotionally a bit down, perhaps brought on by the prospect of a pointless war advanced by yet another psychopath who is eager to wage a battle based on 70 year old geography, and who makes the Guelphs and Ghibellines look rational by comparison. My Ukrainian friends refer to him as the “mad dog” which is unkind to dogs.

Sunday, February 13

Movement is deliberate today. Again, both walks began with bursts of energy that quickly depleted. Neither were spontaneous, and both left me tired. But I feel happy and clear, getting in and out of chairs is relatively graceful, and typing is tolerable; so tolerable that I started in again on my book. Only a few pages, but at least it crawled forward.

I look forward to another day of spontaneous movement, but am trying to be careful not to expect one.

Monday, February 14

I slept seven hours straight, getting up not at all, for nothing! (Does it show that I am happy about that?) Then we walked the garage, briefly, and I napped for 90 minutes afterwards. Walking leans toward deliberate, but all other motor functions are leaning towards spontaneous. I especially enjoy that gestures and reachings are quick and agile, that my arms are relaxed, and that I can get into and out of chairs without undue effort. Also, balance is improved.

The evening walk was pure spontaneity.

Tuesday, February 1

I woke up feeling downright spritely, even if lacking in easy mobility. That lasted through breakfast and the morning ceremonies of massage, cleaning, and dressing. (During leg massage, my right leg is usually so sensitive that it twitches and leaps; there was none of that this morning.) The sprite also endured several longish messages I had to write in search of transportation to Florence on Friday. Typing was not only accurate, but fast and automatic.

Then we took a very brief walk (brief to save my ankle and because the typing put us too close to lunch to do otherwise) and by the time I’d eaten I was tired. The nap that followed was restful, but I woke with distant echoes of RLS (not fully realized, but a little shaky) and a great slowness of movement. It’s about an hour later as I write this, and while typing is more than usually accurate, it is no longer quick and automatic – the natural ebbs and flows of recovery. But I still feel spritely even if the edges of my wings are frayed.

Something surprising happened on Sunday – I could suddenly scratch the center of my back with my left hand. I still can. I’ve not been capable of that for years!

Still, by four I felt tired and tight and typing was becoming sloppy and goofy. So I took a nap. When Roman came in at five, the noise of the door latch caused my body to jump like from an electric shock.

Walking Via della Costituente was very pleasant, and revived my energy and high spirits.

Wednesday, February 2

As per usual of late, I woke on the top of the world, and when walking the hall shortly after I swayed from side to side (as a healthy stride does) and without trying. I also got out of bed several times over night with a similar ease and spontaneity. PD hits automatic movement hard, so that I am experiencing its revival is wonderful news.

We rolled to an empty Piazza del Duomo that was washed in sun, still feeling fabulous, but trying to walk the sunny side was a shambles. Roman blames the broken pavement, but today I think the dopamine just wasn’t spread out enough to support my jolly mood and walking, both.

The big news yesterday was typing smoothly. Today, it’s back to sometimes accurate but always slow and needing effort. I’m disappointed but not discouraged. I’m coming to accept the squiggly line that recovery takes.

The Alexander lesson today was at home – illuminating, but strenuous.

Thursday, February 3

This morning after a decent night’s sleep, I transferred to the recliner to wait for Roman and slept for about fifteen minutes. When Roman tried to help me up I felt like I was losing consciousness or dying. I theorized a low blood pressure episode – I’d had one about a year ago, and this felt the same. Roman took my pressure and temperature about twenty minutes later and they were perfect. But I’ve been hopelessly weak ever since, though to be accurate, the really unpleasant part lasted only a minute or two, and my memory of last year is that after 24 hours or so, all residue had vanished.

Walking from recliner to desk with Roman’s help took several minutes, and typing at first was practically impossible, but it’s getting better now. Then he took my temperature again at 16:30 and it was 37.5 (normal is 37) so I alerted my doctor and Roman got a test kit. All is (thankfully) well, but a residue remains, most notably I can barely walk and feel as heavy as lead.

My doctor recommended an antibiotic which I happily had left over from last summer so was able to start it before bed. 

Roman offered to spend the night. I said yes, please. I slept the full night in the recliner, and slept extremely well.

Friday, February 4

We were supposed to go to the consulate in Firenze today, but yesterday’s fever makes that impossible now for fourteen days. I’ve spent the morning sorting all the ramifications of having a fever during the time of covid (there are many) and by the time all was resolved, the fever was gone. Then after all that computer work, I napped like a stone. We managed an evening walk in the garage which was followed by another stoney nap.

Saturday, February 5

Roman notes that my hands are no longer cold. “What about my feet?” I asked. “They warmed up several months ago.” Cold feet and hands are symptomatic of PD.

I slept really well, and Roman didn’t wake me until ten, which allowing for a ninety minute intermission at about six, gave me a total of eight and a half hours. We walked the garage and I felt more steady on my feet than I have in well over a year. Upon arriving home I was instantly tired… or maybe I just wanted to return to the loveliness of sleep. Post lunch I tried to nap but RLS returned after being largely absent for awhile. That annoyed me, but now that I’m up it seems that in this case RLS was a reaction to my trying to oversleep.

Typing is very good. Pins and needles in my hands began the instant I thought of typing and a good five minutes before I was at the keyboard. They continue at varying intensities. I worked at the computer all afternoon, getting in and out of the chair without any problem.

Walking this evening is spontaneously lighter, knees bend, I sway with each stride. Roman noted before I said anything. It felt fantastic! As the evening continued and the quality of stride degraded, the knees lifting and the swaying survived. So did getting in and out of chairs (which was incredibly easier).

Then around 23:00 I got hit with a snot attack that lasted for an hour (provoked by a sip of water!) so I took some NiQuil, which was effective almost immediately. It also made me sleepy. I managed to stay up until 00:30.

Sunday, February 6

I slept until 09:15, and continued to sleep whenever I was deprived of stimulation. And I could barely walk, though curiously, rising from a sitting position continued to be easier than usual. Also curious, I continued to pick up my knees while walking, even as the walk itself was reduced to jerks and freezes. Left knee is sore and sometimes feels like it will give way.

It is a beautiful day so we wheeled toward San Giovenale and did a few laps on Piazza Gonzago. Then I skipped lunch and fell back to sleep for over three hours. 

Mobility come evening was severely compromised, and despite all the sleep, I was tremendously tired. I bowed out of the evening’s phone calls. The contrast with yesterday could not have been starker. Roman stayed over again, and I slept in the recliner for nine hours.

Monday, February 7

Mobility is still bad but less so than yesterday. Naps abound.

Janice writes that when periods of recovery begin that they are short, and that the body’s need to recuperate takes much longer than the recovery period. Then, as recovery periods expand, recuperation shrinks. My first noticeable recoveries were of a few minutes length, and I chose to view them as breakthroughs rather than early expressions of healing. But Saturday’s recovery period lasted for hours and had a “soft” beginning and end (it didn’t just click on and off). And my body’s subsequent need for rest is profound. I also am not the least bit discouraged by the recovery period’s ending. I am experiencing these changes somatically, and see them more in context of a larger process.