Month: October 2022

Tuesday, October 25

Yesterday’s personal theories about zombie naps and related subjects were blown to bits by today’s reality. The details are not worth getting into. Suffice to say that I will try to suspend my mental habit of figuring everything out for myself, and turn instead towards taking each day as it comes.

Things that came with this day include:

Roman has been massaging my legs morning and night since early July 2021. He said that for the first time the calves are supple instead of hard. (Six days later, they continue to be so.)

There were several periods of ecstatic love, Sunday, yesterday, and today.

The feeling of assurance regardless of how talented (or not) movement is, continues.

Janice’s response to this week’s report; “that gradual improvement is really the test. NOT having all the symptoms be completely gone by today or tomorrow.”

Wednesday, October 26

Walking has been wretchedly difficult all day (though it started down that path yesterday) and putting on glasses or inserting hearing aides (and the like) is arduously slow, but typing is good enough that I wrote and edited an 800 word article for Orvieto News on last Sunday’s concert. That felt like a return to life.

As far as movement goes, I let it be what it was. Interesting result perhaps; Teo the Tabby walked four out of five laps on the sagrato with us and waited for us at the ramp for the fifth; dogs were friendlier than usual (and so were people).

Thursday, October 27

I slept nine hours with an hour break around four. Movement is laborious, though typing is not bad. I still feel safe. To our great disappointment Teo didn’t show up for our walk tonight. I hope he knows he is always welcome.

Friday, October 28

Sleep last night was interrupted at around 04:30 by a dream-induced need to reposition my limbs. When attempts at doing so yielded no relief, my sleeping mind decided to crawl out of bed without plan or strategy. I flailed and twisted and groaned and finally pulled myself over the edge, heart pounding like a hammer. I’d done something similar several months ago. The difference this time was that while my body was frightened by the experience, the mind was not. Nevertheless my body’s fear discouraged further quality sleep.

I mentioned last Sunday that I could not stand and clap at the same time. What I didn’t say is that I couldn’t clap at all for longer than about three seconds. A couple of weeks ago, Janice responded to my post by saying that I was essentially recovered with mopping up to do. I prefer the war metaphor; the longer the conflict the longer the reconstruction – meaning such things as relearning to execute repetitive movement. I decided to apply effort towards that relearning, and by this morning I could clap. Stand by for more.

Saturday, October 29

Walking was so hard in the morning, and I was so tired all afternoon, I was surprised when the evening walk turned out to be pretty decent; controlled, rhythmic, and quiet.

Sunday, October 30

A week ago when I wanted to give Maestro Cambri a standing ovation, I couldn’t clap my hands. In truth, I’ve been unable to clap for well over a year now. Repetitive movement needs to be automatic in order to sustain itself, and one of the characteristics of Pause mode is the lack of automatic movement. So, Sunday before bed I began to re-train my hands to clap. By Wednesday evening I could applaud for ten seconds before I ran into a wall. By Saturday evening, I was able to clap for a minute or more.

As I mentioned before, Janice recently responded to a week’s report that I have recovered from the root cause of PD – being stuck on or habituated to Pause mode or Pause mode mental habits – and that now I have mopping up to do. The example of clapping is, I believe, what much of mopping up will look like.

Natalia helped me regularize my inter-lap exercises, this morning, and they coincidentally involve repetitive movement, as well as isolation of movement and tension. For the past several weeks, my hands tighten when I walk. The more fluid the walk, the tighter the hands; they want to grab hold of something for stability, and the aftereffect is severe muscular pain on the outside of the wrists. Today we discovered that when I slowly close and release my fists and fingers while walking, the hands remain relaxed.

The next few months are going to see a lot of that kind of thing. They are also going to see my becoming suddenly tired during exercise as the brain learns how much dopamine to produce and where and how quickly to release it. In the meantime, there may be accompanying mood swings. I will deal. Just be careful not to spill on others.

Monday, October 31

The streets were filled with angels and demons, witches and wizards. My evening walk included a few echoes of Bob Fosse (unsustained but fun). I didn’t wear out during the five laps, but was fairly wasted afterwards. Yesterday’s Zoom meeting of our PD support group was profound. Typing today were better done by a team of hyperactive kittens. Have a good week.

Tuesday, October 18

T’was a beautiful morning. Piazza del Duomo was full of sun and people. And Paolo Zanzarelli, the classical pianist, had his concert grand set up in front of the Duomo to provide a musical underscore. Then just as we were starting to walk, bells rang out. 

I asked Roman where they were.

“Maurizio is returned from vacation!”

Maurizio is the bronze knight who was put atop the smaller clock tower to strike the time for the workers who built the Duomo. He has been inactive for at least a year.

And for our final lap on the sagrato, Teo the Tabby Cat followed us.

As we came down the ramp, a police car pulled along side the piano and parked. He rolled down his window, and as we passed I could see that his eyes were closed.

I walked well, by the way, seven laps without even realizing it.

This evening we circled the Albergo Reale twice, and it was so much easier than ever before.

People are congratulating me, and I love it. But there is still a lot of repair that will happen before movement is fully restored. (I’m not complaining.)

Wednesday, October 19

I slept eight hours last night with a one hour break in the middle. During that hour, walking and sitting were better than usual, and so was typing. Also more prominent was nasal discharge, so I took two demitasse spoons of NyQuil to help stem the flow. It worked. But this morning, walking and typing are back to being awkward, and little things that were calmed or absent during the early morning break (like the mouth and tongue tremor) were back.

So, most of the afternoon I sat, and I never became uncomfortable (an hour sitting has been my limit). When I finally got to my feet at 16:45, walking was slow but steady. Typing now is decent. I still feel assured. So, perhaps this morning’s backwards movement was the result of cold medicine at 05:00.

This evening’s walk around Grand Albergo was unremarkable in all ways. I have to be careful not to let my mental habits throw out – as imagination – all the progress of the last ten days.

Thursday, October 20

A fabulous garage walk this morning, controlled, relatively relaxed, and in pretty good form. (“Fabulous” is my own highly subjective assessment, Nureyev I’m not.) (Well, okay, I never was a Nureyev, but today compared favorably to what I could do a year and a half ago.)

The afternoon was a total space-out. I don’t know why. That state of mind blended into the evening walk on the sagrato which was otherwise pretty good. Changing direction on my feet and initiating movement has been easier today than they have been in a year and a half. (Easier, not easy!)

Friday, October 21

Walked the garage this morning, did well but ran out of oomph at the end. Could barely walk afterwards, though I took the three lobby stairs so well that Roman teasingly suggested that I forego the elevator. Energy recovered moving around the apartment. Then I napped for twenty minutes while sitting upright, and woke immobile. Staggered to Roy’s car, and recovered during the drive. The walk from car to studio for Alexander was strong and relatively smooth. I took the six steps up without difficulty. The lesson was good, but a lot of work. Afterwards, I could barely walk back to the car, and once home, could barely move. I had guests for two hours, movement continued difficult. The evening walk around the hotel was smooth, and relatively relaxed. After two circles, I opted for a third, but a quarter way around I could feel the dopamine deplete, so we called it a day. All through the day whatever the quality of movement, I felt in control and assured; there was no panic or elation. That was a very good thing, indeed.

Saturday, October 22

I was wired last night and therefore slept poorly, and that made the morning walk an on again off again proposition. The afternoon featured a couple of timed naps, and much confusion with a friend trying to find my apartment (never did). That and some incipient boredom left me emotionally on edge, but it lurked threatening and never spilled over. The evening walk was steady, calm, and controlled until I suddenly ran out of dopamine in the middle of the fourth lap.

I am reminded of how important it is to actively counter the propaganda of PD’s being incurable and neurodegenerative. Falling into that habit sets up a “clinging to life” struggle which sends me right down the Pause-like symptoms rabbit hole, and results in a downward spiral into self-induced Pause-land. (Forgive me if that sentence is too jargon-y to be sensible, it is meant primarily for fellow travelers.) In other words, it is essential not to be frightened by seeming setbacks. PD is an electrical not a chemical imbalance, and recovery is therefore prone to be quirky. But progress is real and the zigzags do not invalidate that reality.

Sunday, October 23

Sleep was back to being sound, last night, and even with a very slow start, this morning’s sagrato walk was steady, controlled, and in good form. I took a timed nap (25 minutes) after lunch and woke to zombie immobility that took longer than the nap to recover from. That doesn’t happen when I wake during the night after two or more hours sleep, nor does it happen in the morning

The wake and shake phenomena, however, seems to be on the wane. Dexterity seems pretty good (with the exception of zombie-ness) as does directional change and initiation of movement (same exceptions).

I went to Maestro Cambri’s piano recital at Teatro Mancinelli this evening. It was magnificent. And I was in the wheelchair for a total of three hours without discomfort. I tried to stand for the ovation, and I did too, but couldn’t gain my balance to applaud at the same time. What a thrill, though, to be back in the Ridotto (reception room, see this week’s photo).

Later, movement became difficult again, and a feeling of being under water (best I can describe it) prevailed.

(from Recovering from Parkinson’s by Janice Hadlock)

“In addition to becoming limp during the time of day when a significant amount of healing was happening along the path of a given channel, a person who is recovering might become limp for a short while if/when the brain’s dopamine supply temporarily runs out. During these fairly short periods, which occur when there is no emergency on the horizon, the person feels limp and relaxed – which is how a person feels when dopamine is sufficient for consciousness but insufficient for motor function. Over weeks or months, as the recovering brain steadily increases the amount of dopamine in response to need, these short-term, temporary events become further spaced apart and last for shorter durations until, at some point, they never occur again.”

Monday, October 24

My personal theory as to why there are zombie naps is that with real sleep the brain prepares for being awake and a part of that is release of dopamine, which is inhibited during sleep. So, from a nap I wake dopamine depleted, or in my highly technical description, zombie-like.

As to yesterday’s quote, two or three months ago that depletion/regeneration cycle seemed to occur over a period of days instead of hours and minutes as noted above. These days, it seems to occur over a period of hours. Though because the recharged periods involve improved movement but not yet free movement, perhaps there are cycles subtle enough that I don’t notice them.

Tonight’s walk was automatic but not perfect (posture was wanting, my arms seized up, there was minor dragging of the left foot), and lasted about thirty minutes before I lost steam. Recovery took at least ninety minutes, but that’s better than several hours.

At some point this afternoon while I was sitting on the edge of my bed, I spontaneously experienced the five steps of turning off Pause; a “hug” from my Friend, full body tremble leading to feeling safe, a deep breath, head wobble/shudder, a thrill of energy up the spine. The experience was involuntary and very strong. Where to put this episode in relation to being on Pause is unclear to me, but it was undeniably significant.

Janice’s response to this event was: “your spontaneous Five Steps means that, the most recent time you automatically, from habit, turned pause back on, your brain, with no input from your conscious mind or any ‘techniques’, said to itself, ‘oh. we can turn off pause. there’s no danger here.'”

Then there is this from Janice in response to last week’s report.

“…when you go limp this last week, you’re able to accept it with bemusement, not terror. that’s really the difference. you are using a different personality to deal with life. that’s the real recovery. the symptoms, they are not the measure of your change. the ability to say ‘ha! and now i am limp.’ without having an emotional self-attack, that’s what’s really important. the symptoms will go away as fast as they can, once you are no longer using pause.”
This makes total sense to me and jives with my experience. Huzzah!

Wednesday, October 12
I’ve been doing a kind of medical qigong on the left knee and ankle, and both are better. Walking today was lighter and easier. Roman was in a very silly mood, which was also nice.

This pretty much sums up how I feel about living in Orvieto – We are happy from ORVIETO

Thursday, October 13

I felt better today in terms of movement than I have for a long time. Nobody is going to ask me to dance or run a race, but from my perspective the improvement is huge. Also agility is smoother; putting in hearing aids, showering (with help, but also with pleasure), putting on glasses, rising from a chair. I can actually feel that I am not using Pause mode at all, and the result is silky and pleasant, which I guess is the natural state of those not on Pause, but to one who has been on Pause for who knows how long, it feels like a miracle.

Walking shows great promise, typing is in a world of its own (some good, some not so much).

Friday, October 14

This day left intentionally blank (too busy). Except! I moved to Orvieto seven years today. In many ways it seems a lifetime.

Saturday, October 15

I can feel that I am off Pause, can catch myself leaning towards it by habit, and can choose not to go there. Staying off Pause most often results in a moderation of symptoms, but not always. It does, however, create a lightness of being which is very encouraging. And symptoms are gradually releasing their grip, overall.

By evening I was feeling a tad restless. Then Natalia came and took me on a gradually expanding walk through town. It was hard towards the end but I stayed off Pause and was not too tired afterwards. And my right arm, which tenses up while walking, stayed relatively (not completely) relaxed. And while the streets were crowded, the activity didn’t’ freak me out, like it usually does.
(from Stuck on Pause 2022 by Janice Hadlock)

“Stories abound of saints who are unharmed by, who even play with, animals that are usually considered highly dangerous. This is because those saints feel safe. Their feeling of safety has nothing to do with any logical assessment of the odds for physical safety in a given situation.

“If the self-induced pause habit was used for decades, it might have become deeply entrenched. If so, then even after turning off self-induced pause for the first time, the person might find himself reverting into self-induced pause mode again in response to even a mild emotional or physical upset: if the phone rings, or if someone knocks on the door. If this is the case, the person might need to turn off self-induced pause repeatedly over a few months or years, until he starts solidifying the new habit of feeling safe. When that habit can be invoked on command, he can destroy the pause habit and replace it with the new healthy habit.”

A curious phenomenon exhibited itself this evening, a feeling that all movement was confident and fluid, while in reality there was no objective change. The fear and wariness were gone.

Sunday, October 16

That confidence lasted through the night, and reappeared in bursts on our walk from Piazza Gonzago to San Giovenale. (From cliff’s edge the valley was filled with fog, and it gave the illusion of our being high in a plane.)

The feeling of self-generated confidence waxed and waned through the afternoon, then stabilized again come evening. Natalia took me on a tough-love walk to the far edge of Piazza Gonzago – head up! back straight! longer steps! pick up your feet! I understand better why the Ukrainians are winning. Then she gave me supper with polenta, funghi, cingale, and grilled vegetables. I am totally spoiled.

Monday, October 17

I slept nine hours without a break last night!

I’ve a new word for how I’ve felt these past few days; assured. This morning’s walk on the sagrato was smoother than usual, enjoyable, and… I felt assured. Typing is a mess, but it’s not bothering me, just preventing work on projects. Talking and voice are in and out, there is some shakiness, and there is far too much saliva being produced, but I am okay with all of it. Underlying everything is a feeling of safety.

Tuesday, October 4

A marvelous day. Good visits, conversations, and encounters. Exchanged smiles with strangers. Substantial walks on the sagrato. Waves, nods, and greetings. Happy to be here, grateful for everything. Movement not terrible, sleep good, spirits high. Friend smiles and thanks me for the day, I thank them back.

There was shiatsu in the early evening, very powerful. My left leg was active (RLS?) almost the entire time. Sleep came early and was sound.

Wednesday, October 5

Slept a straight eight, rose at 07:30 and remained energetic and fairly mobile until about ten, when while still walking I went limp. Limpness remained until afternoon, but the most significant thing about all of that was how unbothered I was, in fact I rather enjoyed it. The process of recovery seems almost random, and I’m coming to realize that the importance of surrender is allowing that randomness without panic, and trusting the process even when I don’t understand it. Especially when I don’t understand it.

Thursday, October 6

A wonderful day overall. A male nurse came here at nine to draw a blood sample. After some discussion on paperwork, he let me know that it would cost me fifty euro to take the sample today, but if I wait until Saturday or Tuesday it would be free. After some weak resistance on my part, I acquiesced.

I read The Umbrian Thursday Night Supper Club after lunch, then David and Birgitta came over and we had an interesting and far ranging conversation. The evening passeggiata included meeting Cheryl from San Diego area, Nikki from Capetown, and Rudi, originally from Switzerland, who I’ve not seen in three years. Plus a number of Orvietani.

I came home very happy.

Movement of all kinds is marginally more adroit. Food is tasting especially good. Urinary retention has shown a marked improvement in the last few days.

Friday, October 7

A pretty ordinary day, all around pleasant. Nothing much to say about it.

But this caught my eye.

(from Stuck on Pause 2022 by Janice Hadlock)

“If the self-induced pause habit was used for decades, it might have become deeply entrenched. If so, then even after turning off self-induced pause for the first time, the person might find himself reverting into self-induced pause mode again in response to even a mild emotional or physical upset: if the phone rings, or if someone knocks on the door. If this is the case, the person might need to turn off self-induced pause repeatedly over a few months or years, until he starts solidifying the new habit of feeling safe. When that habit can be invoked on command, he can destroy the pause habit and replace it with the new healthy habit.” 

Which is perhaps why Janice prefers calling her approach a “practice”.

Saturday, October 8

A good day all around. Can readily and automatically imagine easy and fluid movement even if the brain/muscle connection is not there yet.

Yesterday, a grey tabby accompanied us three quarters along the “grande U” of the sagrato, always staying one step ahead and between us. This morning we told Kasené (one of the blue nuns assigned to the Duomo) about our feline companion and were informed that his name is Teo. It’s a long story how, but we always call him l’ex-sindaco (the former mayor). So, now we have a friend and know his real name. His company was a great privilege.

This evening we walked the circle around Grand Albergo Reale for the first time in awhile. It’s a bit more strenuous than the sagrato, but the change was nice. Plus, because it’s all on streets, I get lots of encouragement from familiar passers by.

Sunday, October 9

Having broken the routine yesterday, we circled the Grand Albergo morning and evening. For two hours or more the site of a shoulder injury I sustained twenty years ago hurt in a profoundly deep manner, then suddenly disappeared.

Monday, October 10

I slept well and woke up sleepy, a condition that lasted until after lunch when I took a twenty minute nap and woke feeling like I’d been dropped onto an old mattress from a moderate height. After a stunned hour, I addressed the situation with physical and mental exercises which improved everything, even the pain in the left ankle and knee began to melt. 

We walked the short route on the sagrato this morning, but there was no sign anywhere of Teo.

My Friend “hugged” me this afternoon, and I began to understand what feeling safe really means.

(from Stuck on Pause 2022 by Janice Hadlock)

“The ‘I’m safe’ mental behavior must be continually practiced in order to form a new brain habit, one that can eventually be used to replace the habit of using self-induced pause. When specific brain techniques are used to destroy the pause habit and replace it with a healthy habit, the use of self-induced pause can come to an end.”

Working on it.

Tuesday, September 27

Not being able to find a comfortable position in bed plagued me for at least two years and disappeared several weeks ago. But last night the sack of potatoes returned (only it was marbles instead of potatoes) and turning in bed was suddenly almost impossible. And my left ankle and knee, that have been hurting a little for weeks, suddenly hurt so badly when I walked that it kept me from trying. The pain continued (and seemed to get worse) into the day. Short nap at around two left me zombified which in turn made me feel limp, trapped, and depressed. I couldn’t connect with Friend. Then early evening I remembered heart energy, and Friend pointed out that none of the symptoms were Parkinson’s and all were associated with recovery. I was in a much better frame of mind going into nighttime. 

A sneak peak into the future, perhaps, that I forgot to mention yesterday. There are three steps going from lobby to elevator in my building. There are five going from lobby to street at my dentist. I struggle up both sets of steps, even with help. Yesterday I climbed the set of five without thinking or assistance. Roman gasped.

Wednesday, September 28

The sack-of-something theme continued last night but the contents were lighter and more manageable. I woke up grateful. The left ankle and knee were still very sore. The locations of pain correspond exactly to injuries sustained from a run in with a moving automobile when I was twenty.

(from Recovering from Parkinson’s by Janice Hadlock) 
“Many of my Parkinson’s patients wrongly assumed that the healing of a dissociated injury and/or restoration of healthy Qi flow should be pleasant. The end result is pleasant enough. But many patients, after re-associating with an injured body part, experienced the long-suppressed pain of the injury.”

Thursday, September 29

Off and on groggy all day. Ankle and knee still sore, but walking well if I make a deliberate effort to pick up my feet. Wonderful visit with Nan and her new friend Paul. Otherwise feeling a bit lost, craving normality – whatever that is.

Friday, September 30

Last night was in line with what my experience has been these last few weeks until about 06:00 when I suddenly went limp, was utterly unable to roll or turn in bed. After an hour of stretches and pacing I was able to sleep another three, but they were leaden, movement never quite restored.

Afternoon Shiatsu was powerful. In fact, it may have kept me awake that night.

Saturday, October 1

I was back to searching for a comfortable position in bed last night, and slept hardly at all. Consequently, I was stunned all morning. Then as we prepared for a walk, the elevator didn’t respond, and no one picked up when we called the weekend emergency number. Thankfully, no one was inside when the elevator stopped working, but what if…? So, I will have to pace the hall at home until that changes.

Took a needed nap during the time we would have been walking and woke as rigid as a warped board. Michele always warns me that Shiatsu can make one feel worse before better. Still, I was so uncomfortable that it frightened me.

The elevator remains broken come evening. I paced for forty minutes this afternoon, that loosened me up a tad. I’ll pace again in lieu of the evening walk.

[Turns out the elevator was repaired around 14:30, then without actually trying to use it, we believed one another’s declarations of non-repair. A metaphor?]

Sunday, October 2

Slept rather well despite some evidence of potatoes. Still, I’ve been incredibly slow all day. The interesting thing is that is that my slowness doesn’t bother me. Initiating movement is easier, but is so subtle as to be perceivable only by me. Left ankle and knee are much less painful. Typing is a joke. Ha, ha.

The evening walk started super slow and became gradually more fluid. I felt (as I often have) that normal movement was just a shrug away. If that’s true, I cannot find the nuance of the shrug.

Monday, October 3

I slept especially well last night, not withstanding an hour’s intermission at two during which I stretched and exercised. Typing today started out astonishingly good, then slowly leaned towards mediocre. That’s fine, mediocre is better than absurd. Walking has been better. It has also been worse. Internally, I feel just fine. This morning was glorious weather wise, and there was an odd shortage of tourists. But locals were out in force and smiles and waves were exchanged with particular vigor. No matter the state of my brain, I live in Orvieto and nothing could be better than that, for me, in this time!

At the end of the evening walk, Roman, who isn’t able to read any of Janice’s literature (it’s all in English) began describing what it is I’m doing vis-a-vis PD recovery. He got it right, too, even describing (by name) the Blocker function.

“Do you remember M–?” he asked me.

“No.”

“Well, he had Parkinson’s, and he believed there was no cure and acted like it would kill him.”

“How’s he doing?”

“He died. Do you remember Daria who we ran into at the photo booth last July, who we hadn’t seen in a year?”

“Sure.”

“She couldn’t believe how much you’d improved. Almost like you were faking it before.”

Perspective. Thank you, Roman.