Month: July 2021

Tuesday, July 2o

Have I mentioned in this log that I am extremely sensitive to stimulants and sedatives? I noticed before Monday evening that the sleep drops the doctor gave me periodically made me walk funny, and there were a couple of times I leaned against the wardrobe while pacing the hall and fell asleep. I had been warned.

Because I had slept many naps on Monday, I was concerned that I’d have problems sleeping, so machismo got the best of me and I took a half dose of the sleeping medicine. The strongest dose I had taken up to then was a quarter and that fairly knocked me out. Machismo prevailed again when I had to pee at four on Tuesday morning, and instead of using the pappagallo that sat on the bedside table, I insisted on getting up and groping my way to the bathroom. Just after entering, my walk went funny, I fell, gashed my forehead, turned, tried to get up, fell backwards and broke two ribs.

The next few minutes were interesting. In terms familiar to those who follow my reports on the Parkinson’s Recovery Project, I went into Pause Mode. I became extremely focussed, there was no panic or energy wasted on anything unnecessary. There was a lot of blood from the head injury, and it didn’t bother me at all (a guy who has grown faint, crawling to the floor of the grange hall that was screening it, while watching a black and white film in which a character cuts himself). I adjusted my mode of crawling to take advantage of the bathmats that would follow me and provide traction. I called the two people whose phones might be on, had keys, and lived nearby. I reached Roman, he was on his way before he put down his phone. I leaned against the bed, breathed deeply, and relaxed. I was safe. It was only a matter of minutes. Then I noticed that my back really, really hurt.

Roman and the ambulance arrived together. My new pair of shorts of which I was so proud was cut off my body, I was put into a diaper, my head was wrapped, and I was strapped onto a hard plastic pallet to be carried every which way down three flights to the street. The ride to the hospital felt quicker than I expected. There, they washed, and stitched, and organized the lump of flesh thrown so suddenly into their care, they send me through an MRI, then up to a room in general medicine. I was given an IV of a painkiller, and I fell asleep. Previous worries about not sleeping were painted absurd.

When I woke, the kind and smiling face of my new doctor greeted me on one side, and that of an orange clad nurse on the other. My doctor’s smile is conjecture, as his face was covered with a mask, but his eyes attested. He has a beautiful smile, and as if to give me its benefit, he briefly pulled down his mask. It was sheer joy to see him. He explained that I’d had several stitches (numbers weren’t my thing at that moment) and that I’d broken my wrist which explained the back pain. I rotated my right hand, and considered the possibility wilder than anything I’d lately learned from Chinese medicine. He told me I’d be in for at least ten days, to rest, and not to worry. He probably said other stuff too, but after hearing ten days my capacity for mental absorption suddenly abandoned me. I blurted that I wanted to be given no anti-Parkinson’s drugs. He agreed. 

Then I was alone. I was an American in central Italy without his phone. Without his id card, health system card, any money, his hearing aides, any clothes, or even a memorized phone number of a friend. I wondered how all that would be resolved, but had not quite enough energy to worry for more than a minute at a time. I slept, was given IV’s, fed food, and washed. That evening Roman walked in with a smile, some clothes, all my official documents, and my phone. He held my hand and shook his head, said something in his Ukrainian-accented Italian, and gave me a tour of my regained identity. He looked absolutely angelic.

It wasn’t until Wednesday sometime that I realized the broken wrist was actually a rib, and a call from Katrin clarified that there were two. The healing: to lie flat on my back at all times for at least ten days.

I’m writing this on the tenth day. This evening I was given the honor of an arm chair. If all goes well tomorrow, I’ll be released on Saturday. If not, Monday. The diary will pick up again as soon as I have enough chair time to catch up. Writing or talking on my phone from bed is cruelty enough, using my notebook is impossible. Anyway, my body is mending, and I am able to write again.

And my friends have been amazing. So has the crowd of nurses. Andiamo avanti!

Wednesday, July 7

After a very spotty night trying to sleep in bed, I moved to the vibrating chair at dawn, and despite some interruptions for additional magnesium (to counter RLS) and for comfort adjustments, I slept a solid three hours. An early foot massage gave me an hour or so more. Darina fixed a lovely breakfast (even brought a fresh cornetto from Palace Cafe) that included coffee, and the day showed promise. But when lunch was had, the proffered new desk chair rejected, a shave and shower was accomplished, and another hour’s nap was taken, and there were still six hours to fill until sunset, and the summer ahead seemed impossibly long. That blandness would be relieved by a comfortable seat at the computer and some air conditioning. Both are on order, and a part of me is still surprised they are of such importance. Comfort didn’t used to be so sought or so difficult to find. Now finding it seems accidental. As the day wore on, comfort grew more elusive. By midnight, an accidental crossing of paths would have been most welcome.

Thursday, July 8

After very little sleep in bed, I transferred to the vibe chair shortly after four and slept well for a couple of hours. When sustaining that became impossible, I went back to bed and instantly discovered a way of sleep on my side which gave me another couple of hours. Movement to and from those various locales was as slow and tentative as can be imagined, limp had clearly won this morning, no question of confusing it with weak. Foot rub followed breakfast, then another good nap in any position I wanted to; it was liberating and refreshing. Alternating waves of feeling like I’d been hit by a bus and waves of anticipated full recovery. Sometimes together. I napped well and often all day. By sunset I was feeling more solid than slammed, but discomfort was fairly acute and fluidity level was low. It also became apparent that the overriding discomfort was limpness in legs; it was not Parkinsonian weakness. The limpness varied in intensity, but the later half of the day it was dominant.

Friday, July 9

Sleep was random and fragmented, but for the first time in a long time, without extra pillows. I was able to find comfortable positions quickly, they were simple and easy. It makes the months’ old difficulty in finding comfort in bed nothing more than a mental error, a construct based on a false premise. I wonder how many other of the symptoms will follow down that path. Still squashed in reaction, I now think, to shot #2. Many attempts at naps. My lovely sleep was cut short too early by gusts of cool air blowing on my back. By the time I’d remedied that, I was committedly awake, so spent the rest of the day searching for the perfect nap. I never found it. Meetings about badantes commenced at four and went on for three hours. The result is Roman, a very kind fellow who will become a friend. By the time Katrin left, I was dizzy. I lay down on bed for twenty minutes but was repeatedly jolted awake by what I would call RLS, except that it was not limited to the legs. Recovery dyskinesia? 

Saturday, July 10

Simple new positions for sleep notwithstanding, after a few hours, my mind made them complicated and tedious unless I took a break, in this case, a stretch in the vibe chair just before dawn. That attempt at recapturing a delicious sleep was successful only insofar as I was able to tolerate dyskinesias as elaborate as a foot lifting into a long imitation if a bird startled from its nest. That happened several times, while filler entertainment was provided by more mundane versions of twitches and spasms of the legs, though as before occasional full body or arm movements were featured. After dawn, I returned to bed for a couple of hours, and was able to find and enjoy what has come to call itself, the lawyer’s side (that is lying on the right). I rose shortly before Lucky arrived to take another chance on the black chair, fortified with an extra dose of magnesium citrate, all vibe zones off except for the neck and shoulders, and slept for two hours. Since then it’s been all about fighting boredom and discomfort, not in that order. My mood is improved by knowing that a new desk chair will arrive on Monday, and that with luck an air conditioning unit will be installed sometime next week. Also, that my new badante, Roman, comes today with his wife to fix weekend meals, and (I hope) to give his first foot massage. The next big event after that is sunset. After that, the day is pure pleasure.

Sunday, July 11

Roman’s usual line of work is as a handyman, and he attacked massaging my feet just as one would expect; like they were old wood in need of oil. Little by little I coached him for what felt good, and he adjusted, but not before he left a protective coating of mustard seed oil on my parched lower extremities that was as much a preservative as it was therapeutic. His wife, Maria checked out the fridge and put together a lovely plate for last night’s dinner, perfectly suited to the heat. Still stunned by my reaction to shot number two, I wandered from uncomfortable chair to uncomfortable chair, grateful for any and all distractions from the clock. Today began with solid sleep from about four this morning to about eight when my quota of comfort ran out. I showered and shaved, then sat in the vibrating chair and fell into a coma of a nap until minutes before Roman was due at eleven. He put the place in order and gave me a foot massage so improved it was as if he’d taken classes overnight. I’d mentioned in passing to him yesterday that I am a fan of Slav cuisine, and lunch was a fabulous potato and tarragon soup, with a plate of perozhski and sweet peppers. After years of Italian (which I also love) the change of cuisine almost made me cry. Then he went off to the lake to picnic with friends and I weighed my options between hot rooms with flawed chairs. The recovery symptom of 18 hours a day asleep may be reaserting itself, or if not 18 at least a lot more than is usual. I hope so. I prefer too much to not enough when talking about sleep. I napped in the vibe chair after a short visit from David, then resisted napping again to no avail, falling deep asleep for a few minutes at a time for more than an hour. I finally gave in and slept first on my back, then on my side, and finally in the psoas stretch for a total of about ninety minutes, and had to force myself awake to get back on my feet. 

Monday, July 12

First of all, let it be known that umbrichelli is anarchistic form of spaghetti; difficult to eat for the most skilled of us, almost impossible for those of us recovering from Parkinson’s. Green salad is close behind. Roman provided both for lunch. Delicious to be sure, but challenging. Sleep was a bit better last night with the usual quirks. Roman gave his third foot massage at nine, and as yesterday, it was exponentially better than before. I fell asleep a few minutes in. He told me later that he didn’t wake me because I was sleeping like a baby. But I was fully aware of his finishing, moving his chair, and leaving, but lacked the ability to move or speak. I’ve felt decidedly more limp ever since then, after feeling solider during the night. The heat continues to eat at my spirit. I’ve been facing blank days for almost a year now, but they are no more welcome now than they were then. Nor has my typing much improved. The new desk chair arrived, but there was no time for Roman to put it together. I do wish I felt stronger today, but on the bright side I’m beset with numerous recovery symptoms all at once. Towards evening I encountered an isolation panic. Too much heat, discomfort, and pain. Too little I can do, entertainment, and company. Bruce talked me down. I’m still frothing at the pain and increased awkwardness, but feel I’ll make it through to morning. A lovely friend characterized me as stoic. I am not stoic, or at least am not trying to be.

Tuesday, July 13

Same patterns for sleep last night, perhaps I snuck in a few minutes more than usual. The usual massage was followed by the usual coma during which Roman put together the new office chair. It is an improvement, how much of one depending on having someone here to help make adjustments. We threw open all windows around 13:00 because indoor and outdoor temperatures were equal and were served by a gentle breeze. Lunch was preceded and proceeded by naps. Walked the hall, if you can call it walking. Walking relieves soreness in feet, but a few minutes sitting is to start again almost from zero. I seem to have an anti-social time from about six to eight, frequently nap, and am unable to talk or remain pleasant. Or it may be that my recent lack of meaningful sleep is catching up with me.

Wednesday, June 30

My badante gives me foot massages a couple of times a day. They aren’t therapy, they’re just rubs using mustard seed oil. I’ve been urging her to do something closer to yin tui na, and today she finally made the commitment and just held the feet and ankles, made them feel safe. I fell asleep after a few 

When I woke I finally understood the characteristics of limp (as opposed to weak). I was blissfully unable to move, couldn’t find my legs or abdomen or back. Everything felt so safe and cocoon like. My badante oozed me to the edge of the bed, but I could barely sit, let alone stand. She had to leave shortly after that, so a line up of friends took over for her, and an hour or two later I was able to stand and make jerking steps with the walker. The bliss wore off, sleep took over, but I am left with the sensation of having experienced something significant to my recovery.

Thursday, July 1

Day two of real limpness, of being doubtlessly limp. It still feels good, but is also a bother. Every move is a huge organizational effort, every question a riddle. I’m grateful that sleep hovers so close, most of the time. It gives me something to do I can actually accomplish. 

Friday, July 2

Limpness continues. Then around noon, my badante started to melt down. Her downward spiral only worsened as she became repetitive and incoherent, until she was talking loudly to herself without a pause. I called Bruce. Claudia called my badante. Between them (and on Michael’s advice) he got her keys, we paid her, and managed to get her to leave without further incident. It was as if she had forgotten her meds the night before (entirely possible). I felt bad, I like her, but there was no way back to comfort together after that. Katrin came at five, offered to help find another badante. Katrin’s treatment passed like a dream. Sleep at night was interrupted and in brief stretches.

Saturday, July 3

Limpness continues. Spent the later part of the day writing requests to friends for badante candidates; the most time I’ve spent working at the computer in months. My gait remains soft instead of rigid. I’m encouraged. Sleep at night very spotty, no comfortable position until 05:00. Even then, did not sleep well or long; attempt at vibrating chair failed. Finally slept deeply at about 07:30. Such a dramatic change from just a few days ago when I was sleeping my life away.

Sunday, July 4

Would have been difficult to get out of bed were Lucky not here just in time, I was so limp. Needed more sleep, so chair napped for about an hour. Lucky helped me up when he left, then I dealt with correspondence for bandante search, and napped for 90 minutes (and well) on bed, always on my back (no RLS). Very tricky getting up, imagined my way as best I could, and eventually made it. Why I can’t sleep as well as that on my back during the night, I do not know. Napped again at 15:20 for less than 30 minutes – seemed like hours – also a challenge getting up. More work wrapping up badante search, grew tired and a bit nervous from all the activity. Another profound nap of about 40 minutes, woke feeling my mother’s loving presence and missing her terribly. Getting out of bed still difficult, walking a bit easier, and the gait remains soft. I re-read chapters Recovery from Parkinson’s on Limpness and Dyskinesia and understood them for the first time. Experience fosters clarity. There are subtle improvements in being able to initiate movement. I’ve not felt massive discomfort in a week or more – or rather only brief periods and of less intensity. Imagining movement is still largely confined to the next step or gesture, I fall asleep trying to do anything more, but no effort is wasted. Today sitting and rising have both been more graceful and solid than in the past few days – though to be accurate, changes of all kinds happen hourly, not daily. 

Monday, July 5

Went to bed around midnight and slept in short shifts until about 05:00, transferred to vibe chair and was totally out in minutes for two hours. Returned to bed, and using the formula “commit to sleeping in whatever position I land in” slept until 11:00. The recovery symptom of sleeping 18 hours a day seems to have passed, and I’m not sure what’s taking its place. Am able to walk unaided this morning, and once the foot pain wears off (usually after a few minutes) the gait is not too ugly. Posture is wretched, but I’m slowly able to rise into it. I met Darina, new badante of unknown duration, at 12:30 (she’s great). I didn’t realize how symptomatic I was until there were guests, or… social pressure has that effect; voice hoarse, tremor more apparent. But walking drew applause from Katrin, my physiotherapist. Napped in vibe chair for more than an hour until about 15:15. Woke groggily, weather very hot. A fear of failure (of my recovery) is gone; I feel both more confident and that the process is not entirely mine to own, if I can stay connected to Friend and enjoy the unpredictable details as they mysteriously appear. The day ends with my gait less fluid than earlier, but still softer than before. Getting up and down is also clunkier. The middle of the day was stuck in a blue chair to endure the heat, perhaps all I need is to move around and imagine dancing.

Tuesday, July 6

I slept relatively well (with several interruptions) from midnight until 06:30. I fixed breakfast on my own, and was ready to go (for shot number two) when Darina arrived at 08:00. She’s bright, sunny, brave, and forward thinking. We left for the vaccination center at 08:30, arrived about 20 minutes early, were taken right away by a group of wonderfully friendly, helpful people, and were back home by 09:30. Then Darina gave me a foot rub, gentle, enjoyable and sleep inducing. I woke from the automatic nap so limp I could only imagine getting up, but once moving around, I felt stronger. And thus the day unfolded, waiting. For shiatsu, for sunset, for the big event of the evening – opening windows to the Giovenale breeze, or at least to what remains of it after the zigzags of the medieval quarter have their way with it. Shiatsu was, as usual, astonishing. I told Michele that I was aware of and working on neck tension. He said afterwards that my work has paid off, that the neck was looser, then to prove it, he worked on neck and shoulders for five more minutes. I felt like a thief. Now he’s off to work outside of town and sneak bits of vacation, but if he finds himself in town with time on his hands, he will let me know. I almost cried. Then he instructed me in a technique for imagining movement immediately before it happens, an exercise central to recovery, and one I’ve been having difficulty with. One waits for the evening breeze and it comes delivering treasures.