Month: December 2021

Wednesday, December 21

I forgot to journal yesterday. What’s more, I forgot what happened yesterday.

Today was the best of days, today was the worst of days. 

The morning featured a revelatory session in Alexander technique; the experience of being able to relax even painful muscles through thought. Alexander and The Parkinson’s Recovery Project are complimentary practices. After lunch I was really tired, and I took a compulsory nap in the recliner that ended itself with an uncomfortable approach of restless leg syndrome.

I worked for three hours on act one of Soup in increasing and vague discomfort, then spent time on other computer necessities. Ten garage laps took the edge off the discomfort. My voice is in its second day of extreme hoarseness, so the two phone calls that followed supper were sources of tremendous tension. Some qigong and a 2 Cellos concert eased the tension, then a bad choice of a movie brought it back again. I ended the day pacing the hall and stretching my back – and praying for a good night’s sleep.

Thursday, December 23

Slept wonderfully well when I slept, and didn’t need to pace or stretch too often. But a new tendency to curl into interesting and comfortable positions in bed leaves me with the challenge of finding ways out of those positions when I want to get up – an awkward transitional phase? Then I napped for an hour (in bed) after a leg massage while Yuri did the shopping. I love those naps, so cozy under the duvet, and knowing that someone is there to help me extricate my body from whatever pretzel-twists my unconscious body decides to take.

After lunch I meditated, and once more came to with oddly fractured vision, a phenomenon that only occurs after meditation and lasts for an hour or so. I can see fine, but if I try to work at a the computer, it’s as if I’m peering through ice crystals on a window pane (in a very light frost).

Work on the play went well.

The last few days have shown a hoarse voice and difficulty in observing the white light energy of the pericardium. A session with Dave, the intuitive in Oregon, made the heart energy available again. I have a feeling the voice will follow. [It didn’t.]

Friday, December 24

I slept, but weirdly. 

Waiting for me on the kitchen table was a gorgeous mountain of goodies, a gift from Yuri and his mom. I teared up a bit – it is I who should be gifting. 

Saw a friend who was visiting for only two days from Santa Barbara. We met at Montanucci. After the waiter took our very meager order, he asked for green passes. I gave him my phone, he scanned, it was rejected. Not to turn this into a short story (though it could be) but ten minutes later he had located and installed my updated green pass with nary a hint of impatience or disdain for my antique befuddlement. 

Then we went to Giancarlo’s to pick up a bag of goodies from his oven as a gift for Yuri and Natalia. 

I resisted a nap before lunch, but melted into one afterwards. I slept three times twenty-five minutes, and immediately after waking my toes pointed, my legs turned to wood, and both arms shook violently for a minute or two. That only happens when I sleep on my back. It’s weird.

There was also ice vision, as had occurred after yesterday’s meditation, but it lasted only about ten minutes.

Before my walk, I got a surprise call from my friend Maria Teresa who owns an agriturismo outside of Firenze. It was in Italian with an Italian who speaks (and writes) without punctuation, so of course it left me breathless. Then on with my walking costume for twelve garage laps, in pretty good form all of them. 

I fall asleep these days without regards to where or when. And from hour to hour I go from one emotional extreme to another without regard to cause. Together they pose a constant challenge just to get through the day (and night).

Saturday, December 25

For awhile I feel comfortable and relaxed, then irritated and tense, then restless, then sleepy. Nothing really works to even things out. Setting up gmail made me tense, or seemed to, or did the activity and the discomfort coincide by chance?

My perception of the pericardium has shifted in the last two days from one of swirling watery white light to a headlamp, steady and strong. Same with the medulla oblongata, only there the light is like a neon tube. I don’t know what any of that means. Friend says it is a good thing.

I’ve been terribly uncomfortable most of the day, sitting becomes unbearable after a short while. Walking or pacing relieves that momentarily. We did ten garage laps this evening, none this morning. Walking at home was to creep or to tumble ahead, while it was fairly smooth at the garage.

Typing is mostly a hot mess, but of course (as with everything today) there are exceptions.

Rhinitis is particularly annoying, just looking at supper caused the faucet of my nose to open full. Afterwards I was treated to a dozen sneezes in half as many minutes.

The weird post-nap and meditation vision distortion didn’t happen today at all.

None of these things feels serious but they sure as hell qualify as very, very annoying.

I hate feeling this way. I’m counting on some spellbinding entertainment.

Sunday, December 26

Late last night I found a “wave” of strength and certainty. It didn’t survive the night.

The morning walk was difficult but I managed to put in ten garage laps. Because I was going directly from garage to Ida and Hans’ for lunch, we tried using the walker on the street. Never again. Lunch was delightful, but I felt like something someone had picked up out of a heap of rotting leaves in a dark, damp forest – inert, shapeless, and immobile. Yuri swapped the walker for the wheelchair and my wonderful hosts managed to trundle me home. I napped for an hour and did my best to recover awareness of the pericardium.

At the top of the evening’s garage walk my big toes were sore from too much shuffling this morning, so we cut at five laps. I was able to achieve something like a normal walk about twenty percent of the time. I was exhausted afterwards.

Monday, December 27

Woke early after a night sleeping in two or three hour chunks commencing at about one, had breakfast, then a nap under the duvet for close to two hours more. I find it much easier to achieve a comfortable position under the duvet, but can’t manage a roll or turn. Those morning naps are luxurious, but they mean giving up the morning walk and I can feel that lack until evening.

Typing so far is bloody awful.

Walked well and plenty in the evening. Then back at the computer to the endlessly confusing task of changing over email addresses. Pulling of hair and gnashing of teeth. Time for a movie!

Tuesday, December 14

I felt like I could sleep. It was an illusion. I slept late, instead and sacrificed the morning walk.

My legs are very limp today, and the right shoulder hurts in such a way that at a certain angle it droops. Maybe it too is limp; suddenly gives way. Typing is slightly further from impossible. The right arm is relaxed and quiet, has been all day. Only yesterday did physical stress cause some tremor, and only briefly.

Wednesday, December 15

Alexander lesson first up at noon. Lots of work releasing tension for the first hour, then a half hour or so learning (re-learning) how to stand and sit. Shaky in the afternoon. A good garage walk come evening. Count it all up, it should equal a fairly healthy day regards symptoms, but I felt a bit desperate all day. Too much chocolate and coffee… yep, could be that. Time for a break.

Thursday, December 16

Very little sleep last night, but some marvelous naps this morning. Leonardo stopped by for my #3 jab. We walked 8 garage laps come evening, all in fairly good form until lap 7 when I suddenly tired out. I’m feeling “normal” today, that there is only the thinnest of membranes between me and symptom-free health. I’ll be very glad if that is accurate. Muscles are still limp, but less so. Right arm is mostly loose and quiet.

I am, I must admit, on the fringe edges of stir crazy.

Friday, December 17

I was up until 02:30 listening to the first read through of my play, Soup, taking place at normal hours in Tampa. It’s odd. The play was first drafted in 2014 and received readings, public and private in a very different format, but the current play took shape here, in Orvieto, so I’d never heard this script spoken aloud. The reading was very informative despite my difficulties understanding much of what is said on Zoom.

I started on revisions this afternoon. That both relieved and encouraged my incipient restlessness. Then on the phone with my Pennsylvania lawyer I learned that a document I need to sign must be notarized. That means a trip to the consulate in Firenze, which I would love to do, but is realistically impossible right now. I took another small step towards wanderlust.

Saturday, December 18

I slept remarkably well last night. Perhaps the caffeine fast begun a few days ago is paying off. I got up feeling downright spritely, but was plodding by the time my shoes were on, and the garage walk was extremely difficult (as was yesterday evening’s). At least typing has been fairly good, even occasionally normal. I’ve been concentrating on keeping the pericardium well-charged and that is feeling to be a strong practice. Though just now, being jolted out of a nap by a restless left leg, opening the pericardium gave rise to a terrible fear; I have no idea why or of what.

Looking back I can see clearly how I’ve been functioning on override most of my life, and maybe that fear has been in the background for decades, only now that I’m more conscious of heart energy is it rising to the surface. Anyway, that was a one-time phenomenon, so far. 

We did nine circuits of the garage this evening, and not too shabbily either, then at nine and a half I suddenly wore out and had to stop.

Something that happens all the time that I find so curious. Let’s say I’m sitting on the edge of the bed and need to rise, but can’t make it all the way to my feet. If someone else is there all I need to do is touch their hand and I rise effortlessly from a sitting position. I don’t receive muscular help at all, just the touch. Even more interesting, if no one else is there and I touch the handle of the walker – just touch, no pressure at all – the same thing happens. I’ve paid really close attention to this, and no pressure needs to be involved. It seems to be a brain thing.

Sunday, December 19

I slept a straight eight last night, then after the daily leg massage, another forty-five minutes in bed of delicious sleep, then a very awkward three garage laps followed by another heavenly nap. The legs are very limp, movement is slow, dexterity is rough, but I feel fantastic in spite of that. Pins and needles are intense, but only in my hands. Typing is remarkably smooth. 

I worked on Soup, trying to meld two versions of the first act. Mind bending.

Monday, December 20

Sleep was spotty, mostly because of a tight and achey flank. After lots of stretching and walking, it finally loosened up and let me sleep.

The day was spent working on my play, Soup. The mental effort involved intensified the pins and needles which also spread to head and face. I am uncharacteristically deliberately choosing not to rush to the finish. There’s time, and I intend to take it. But trying to keep track of who is on stage, who just left to do what, and remembering what expository info has been revealed and how – while trying to preserve favorite moments in both versions – is intense! 

Did ten garage laps this evening, which leaves me at about three-quarters of where I was a month or so ago when walking regressed suddenly to post-hospital levels. I am convinced that as impossible as it may sometimes seem, I will walk Orvieto again in spring weather, or such is my earnest prayer.

HAPPY AND MERRY EVERYTHING!

Tuesday, December 7

Early this morning, I received a response from Janice to yesterday’s diary post about the weirdness of the coat, suggesting that I can be operating on the parasympathetic continuum, even though I can hardly walk and symptoms slip around all the time. When I ask my Friend if I am on pause, she answers with a very strong NO, and has done so for months, even when I can barely function. I’ve assumed that meant my body is in repair mode, or rebuilding after a long and calamitous war, so is not firing on all cylinders (Dad was a mechanic).

But there was still a hole there that wants to be filled. Knowing that I can be on the parasympathetic continuum while experiencing the effects of insufficient dopamine distribution somehow fills that hole and is significant to my repair process. I believe that has been my dominant state for about a month. My further speculation leads me to the possibility that after the hospital (August, September, October) my daily walk involved splinting atrophied leg muscles against strong ones until that became untenable and I experienced a crash. 

She responded “here’s the deal – did you read about how the brain, when it starts using dopamine for movement, might suddenly ‘run out’ ? and suddenly, you just crumple. it’s not that the rigidity returns, it’s that you’ve just run out of neurotransmitter, even though you’re still in parasympathetic mode.” She goes on: “if your muscle response time is slower, your ability to balance will be slower. if your muscles are getting limp, their response time might be affected. however, there should be some times during the day when you have a spurt of dopamine-driven movement, and during these times your balance should be just fine.”
Yeah, limp. Limpness is a recovery symptom I’ve experienced before, in fact I’ve thought my legs to be extremely limp, even super limp. I knew not of what I spoke! This, me, today, this is limp! Limp to the twelfth power. Limp beyond all imagining. I am encouraged but I also hope that I move along to the next thing, stat!

Wednesday, December 8

Last night I turned over in bed many times without the usual screaming and cursing. This morning movement was fairly standard – that is, restricted but not terribly uncomfortable – but by the time we left the house I was essentially a cripple. I even chose to wear a down jacket instead of the peacoat, apparently to no avail. We went to an Alexander session which showed me in bright relief what a web of tension and pain my body has become. It also showed me a way out. We worked hard, and the walk from studio to Roy’s car was a tiny bit less painful than the way in. But both ankles now hurt, even a little bit at rest, though I can’t credit the session on either.

During the morning routine I was treated to a dopamine moment manifest as a feeling of deep well-being and safety.

This is such a strange journey!

Thursday, December 9

Physiotherapists have been telling me to both straighten and bend my knees while walking for years. This morning the penny finally dropped. This afternoon I put in six garage laps before ankles began to hurt, so I may also have discovered the source of pain. I had another Dopamine Moment this morning. There was also hail. There was intense pins and needles in arms and hands.

Friday, December 10

Pins and needles continued from about 11:30. Tasks gobbled up the morning so we didn’t get to walk. I’m getting too adventurous in rolling over in bed, doing what feels natural but I get stuck in positions too awkward to extract myself without considerable vocalization. I think I scared Yuri this morning. I know this because of the way he crept in, like he might find a madman. Understandable.

Around four in the afternoon, my legs got jumpy so I decided to pace the hall using my new insights on knee flexing – when to bend and when to straighten. Walking was hard. Then I called a friend, and talking was hard. Fortunately for my self-esteem, typing is easier, relative to most everything else, which is something.

I guess I am having a “bad day” even though in most situations I don’t believe in bad days. We shall see if I can exercise and if I can, how much it lifts me.

We just came back from walking where we did seven garage laps, more or less in form, and with minimal pain. Things are looking up.

At some point during the afternoon, I seemed to have had a glimpse of what it would be like back on the para/sympathetic continuum; didn’t make it there but there were signs of its approach.

Saturday, December 11

It seems that the right arm has relaxed and the tremor is gone except when there is physical stress in some other part of the body. This has been the case since Wednesday, at least, but I think a bit longer. The right arm has put on a good show before for a few days, so I’ve become averse to recording its fluctuations (I’m foolish enough as it is) but this is acting like the real thing. We shall see. Pins and needles in hands and arms continues to be intense. Walking the garage this morning was physically impossible, Friend says that’s a darkest before dawn model, but gave no idea as to timing or degree. Typing is not too bad; fingers are more lazy than inept.

Candace did yin tui na on my right shoulder this afternoon. When she first put her hands in place, they felt as heavy as the lead blanket dentists used to use for x-rays, I asked her to lighten, but she still didn’t feel any of the twitches or mini-releases associated with the treatment. 

The trauma captured there was, I believe, from when I was thrown into a pool before I knew how to swim when I was eight or nine years old, so my body’s first reaction is to feel out of breath and like I am flailing and panicky. When that relaxed after a few minutes, Candace immediately reported that the mini-releases were starting. 

The treatment lasted for an hour, and I drifted asleep. When I woke on my own, the body responded as it always does when I wake from a nap on my own (as opposed to someone or alarm being involved) my arms both shook (distinct from the tremor) then my toes pointed and both legs became super rigid for maybe twenty seconds. This never happens when someone or something wakes me. That is so strange that I have to repeat it. 

As a result of the treatment the shoulder feels significantly freer and more open. Because I had not moved beyond the physical threat and emotional discomfort stage previously, I’d avoided having the shoulder held again, but it seemed time to advance, and I’m glad we did.

Sunday, December 12

There was no significant sleep until 05:00, so I asked Yuri to let me be and I slept until 11:00. The reasons for not sleeping were silly, like not being able to fully clear my right nostril which would then make a noise that only I could hear but sounded like a voice, and I would jolt awake in such a way as to assure that I would not sleep again for at least another twenty minutes. As a consequence I paced a lot, mostly in pretty good form, and today walking (as yet untested beyond the apartment) seems to have improved. 

Yesterday, someone observed that as of a month or so ago I seemed to be doing so well. “Then it all crashed,” I responded. Today, I have a slightly different perspective. If I have a bad cold that hangs on long enough to make me stir crazy, and I venture out before my health is solid again, I am in danger of provoking a relapse. That is what seems to have happened. I got caught up in a numbers game; walking one, then two, then almost three kilometers a day on shaky legs with uncontrolled posture, pained ankles, and always reaching for more. Then one day about a month ago the legs reached their limit and called a halt. I’m slowly building back with a more aware attitude of posture and form, but when the impatience that caused my overdoing revisits, I see only the backward slide and push responsibility for it onto a mysterious unknown operating beyond my influence.

If that is the case, rest is effective. I did eight garage laps this evening without undue stress or pain.

Monday, December 13

As often happens in the morning, I could only make two laps in the garage before I collapsed, then regardless of how light the exercise, I slept like an overstressed child. Then again, I may have fallen prey to my habit of reaching too far, too fast with yesterday evening’s walk. It may be wise to assume a ceiling of five garage laps until that becomes an easy norm.

I spent the afternoon writing letters and submitting plays. That involved a lot of typing. And typing today has been as if I were in the back seat of an old Studebaker with no suspension on a washed out dirt road. But I lost myself in the task at hand, so there was a minimum of swearing.

True to my new philosophy, I called halt to the evening stroll after five garage laps. The first three laps were surprisingly quiet. I still feel like I could go to bed and sleep.

Tuesday, November 30

I took a small sedative around midnight and it did indeed put me to sleep, and in fact it is still working well after noon. I’m grateful for the sleep, but am less sure about the tradeoff.

No walk this morning. Instead we went to Giancarlo’s where he fixed an apple strudel so we could follow a tradition forcefully abandoned at least two years ago. He’s a wonderful baker and a kind man.

I never got over the sedative today, it made me woozy and wobbly and terribly insecure. So, Yuri picked up a homeopathic sleep aid that I’ve used before with only good effect, and I was able to begin taking it at dinner. No walk tonight, too unsteady plus my ankles need rest.

Wednesday, December 1

The second session of Alexander technique was today. Monika methodically opened up areas of my body that were tight (almost everywhere) but habit pulled most muscle groups back into place minutes later. Still, it was instructive to see that I could relax on command.

Then yin tui na this afternoon on the right shoulder. It was hot to the touch immediately and caused me to feel suffocated. After several minutes I was aware of being thrown into a pool when I was about ten, and before I knew how to swim. I requested that Candace ask me aloud if I felt that my life was in immanent danger. I answered with force, YES. That was a first. 

It was a very strange day all in all. Last night I was able to pace the hall – not easily but possible. I woke up at eight feeling like I’d been encased in a block of concrete, even putting in my hearing aides seemed impossible. By the evening walk I was hardly able to move, yet a week ago I had five minutes of complete recovery. I know, that’s the weirdness of recovery, but today I found it hard not to be discouraged.

Thursday, December 2

I didn’t really sleep until 04:00, but when I did it was sound and pleasant. I woke shortly before eight, and we did the morning routine, but when it came to a short rest after leg massage, I asked Yuri to let me be and slept until 10:30. I semi-slept during the activities of the half hour after that before I gratefully collapsed into the recliner for a nap. But a nap was not to be. The right leg became restless all the way up to the thigh, and the right ankle hurt even at rest. We skipped walking, it just seemed too hard.

After lunch I did nap, so deeply that 23 minutes seemed like hours. Then I meditated, and napped again for two 23 minute chunks. 

It is raining, I’ve been weeks without a shower, so we scratched the evening walk in deference to hygene, and I feel two kilos lighter.

Friday, December 3

After sleeping for a bit more than three hours last night, I woke to find my body in what is an essentially impossible position to get into while awake. I have no memory of the effort, but it was like a miracle, as for the past several months or more, I have been limited to sleeping on my side at the edges of the bed. What is more, I was delightfully comfortable. Since sleep has become a constantly shifting challenge, I’ve been envious of the bedding in movies and how easily the characters find ease. Well, look out Meryl, Russell, and Robert, I’m determined to re-enter your league.

Getting out of bed after first sleep was five minutes to a sitting position, and ten more to stand (I timed it, I actually did). But once I got through that, I was able stand, walk, and do stretches; not gracefully mind you, but at least it was recognizably human – or at least I think it was.

After an hour, I entered second sleep for five hours straight with the aid of homeopathic drops. It could be chance, but they seem to help.

The morning and early afternoon passed. Candace did yin tui na on my ankle at 15:00, and despite our having spent the whole time chatting, it seems, so far, to have reduced the pain. Friend told me this morning to rest today. I’ve taken that advice quite seriously.

Saturday, December 4

Sleep patterns persist. I tried walking in the garage both morning and evening, and was barely able. Indeed, even walking during sleep intermission early this morning was without ease. The ankle pain is reduced, however, so at least that part of the plan is working.

I want to change format of these daily reports, to allow them to be less about sleep and walking schedules, more about the colors of being Orvieto’s newest (hopefully temporary) invalid, but the effort typing involves keeps me from it. However, there is progress just in my wanting to create in a more artful manner.

I just read an article on the website Out-Thinking Parkinson’s that includes a long list of Parkinsonian non-motor symptoms, and while some were familiar from several months ago, none currently apply. It is good to be reminded, especially during times of seeming regression, that progress has been made and that rebuilding takes its own time. 

Sunday, December 5

First sleep was deep and satisfying for three hours starting at about midnight. I didn’t enter second sleep until 05:30 or later, then slept well until Yuri woke me at 09:15. I stumbled through the morning routine half asleep. When it was over around 10:45, I begged off walking and slept another hour and a half in the recliner. Then Yuri woke me for lunch, but even though I felt like sleeping again after, restless legs had kicked in by then, so I gave up. Although I wouldn’t object to sleeping in more congruent stretches of time, I’m grateful that the sleep I get is good and the total time spent asleep is sufficient, even if oddly distributed.

The afternoon passed pleasantly and groggily.

The evening walk was at the garage, three sloppy laps. Moving around at home even sloppier. Watched television, went to bed with hope and terror.

Monday, December 6

During a two-hour gap in sleep early this morning, I did some simple exercises for the appendages and found them easy and fun, if not elegantly executed. Right after rising, movement was not bad. An hour later, I found myself clumping. The walk in the garage was a disaster, as was all movement through lunch. I rested, and movement evened out, some. Symptoms change hourly with what seems to be no cumulative effect.

Okay, I’m gonna get weird (as if that’s news). For several years I’ve been describing PD as a rotten, old jacket that needs to be taken off and thrown away – I just don’t know how, for whatever reason. 

Well, I’m preparing for this evening’s walk. I go from the studio to the bedroom. My gait is smooth, even if slow, and my body feels loose (relatively speaking). Yuri changes me into outdoor clothes (see “a character from Downton Abbey” of several weeks ago) and that goes smoothly, as well. I take the walker to the front door, my gait provokes optimism, I feel solid, even confident. I spin the walker 180 degrees to position it for our return; not a problem. Yuri takes my peacoat from the wardrobe. I extend my arms and pivot. The coat slides into place, my posture crumbles, my balance falls into a pit, my legs feel heavy as lead, my voice cracks – a high school memory of a scene from ancient Greek tragedy, Jason and the fiery cloak, pops into mind; very unpleasant pins and needles cross my arms and chest.

I told you it would be weird.

The recovery from the coat part isn’t as defined. The coat comes off, I shuffle to the bedroom where I am changed into indoor attire. I nearly topple when Yuri tucks my shirt. I shuffle with the walker back to the studio and by the time I reach my desk a degree of stability has returned. An hour later I am barely able to get to the kitchen for supper.

So, what is this coat and how do I remove it? Answer in comments!