Author: dallanz

Tuesday, August 30

I was also limp yesterday, but less so. Today, limpness is profound. Zombie naps seem to accompany limpness, and true to form after a much-needed post lunch nap (needed because sleep suffered a long and seemingly unnecessary interruption last night) I could barely move for a half hour, and barely walk for an hour. I’ve done some imagination exercises, but even those are zombified. Everything becomes a chore, reading and understanding is an almost insuperable effort. I should probably cancel all activity on days like this, but I so look forward to walks with Roman and Tuesday evenings at Blue Bar with Erika, that I push ahead. By the time we returned home, I was feeling quite symptomatic, then within a few minutes the PD symptoms largely disappeared and left me with recovery symptoms, and merely exhausted.

Wednesday, August 31

Limp. Very, very limp. And hungry.

Thursday, September 1

A little less limp, today. I continue to be hungry. Had an appointment with an empath this evening, we worked on opening up heart energy, and the state of surrender. That was quite effective. It energized me in ways that allowed me only four hours of rather restless sleep, but barriers came down just the same.

Friday, September 2

Due to my lack of sleep, I took an early morning half hour nap so that I could be alert for the Alexander lesson at ten. It zombified me. The session was good, but after lunch I took another short nap that left me so stunned that even after another half hour wait, I had a hard time moving. And wake and shake is still an active phenomenon. I really hate both zombie naps and the wake and shakes that follow, and can find nothing to describe or explain them.

As the day grew, so did the positive after effects of the work on heart energy and surrender. It’ll be interesting to see where this goes.

Saturday, September 3

Surrender feels good; open and more relaxed. Heart energy lends spontaneity. Last night I went to bed at midnight and the next thing I noticed was dawn. Limpness backed off during the day, but put in a re-appearance in the evening. Nice day. Feeling present and internally balanced and strong. Movement is different, perhaps better.

Sunday, September 4

Last night after an hour’s sleep, I woke up urgently needing to do something, but by the time I was on my feet I had forgotten what it was. I did note, however, that I was not at all sleepy, so to pass the time I took up my phone and searched a boyhood friend, David John Pace. I had searched him many times, since the dawn of the Web, but there was never enough biographical information for me to distinguish him from the dozens of David Pace’s that populated the results. Last night there was plenty of info – in his obituary. He died of cancer in October 2020. 

He had started out as a musician and transformed into a much loved and highly regarded photographer. For some reason, I thought I’d heard that he took over his father’s wholesale business. Far from it. For ten years he documented daily life in a tiny African village, living there three months out of the year. That I had missed re-connecting with him made me profoundly sad. Our last experience together was dropping acid in Santa Cruz in 1972. 

The Guardian published his first photos taken with a Hawkeye camera he received as a gift for his eighth birthday. The banner photo was of a group of kids in Halloween costumes, “in his family living room”. His family living room was all white, so I knew the location was not correct. I looked more closely. It was in my family’s living room, not his. Our friendship survives. Our lives were separately experienced after the age of twenty-two, but still intertwined.

News of David’s death kept me awake most of the night, and put me in a funk all afternoon. But Irina swooped in with daughter Anya, took me to the cat park, walked me into four laps on the sagrato, then we spent a wonderful half hour playing catch in Piazza del Duomo, me in my wheelchair.

Monday, September 5

Surrender, aka, gratefully working with what you’ve got. Heart energy, being open to the natural state of things. With those perspectives I am suddenly aware of subtle changes in how I feel that are difficult to describe, but very encouraging.

Tuesday, August 23

For the record. I slept well with the usual one hour intermission. Walking the apartment was generally in good form, walking the sagrato was not. Experienced some general discomfort, but it wasn’t constant. Took a half hour zombie nap before lunch. Took awhile to get things working again. Fairly limp all day, occasionally very limp, mostly legs. Upper body was sometimes tight and rigid. Had a spontaneous opening of heart energy while out after the morning walk, Friend said “now, that’s what you want all the time.” I tried to hold on to it, then when that failed, to force it. I find myself trying to make things happen, but know that is not an effective approach.

Wednesday, August 24

My second sleep last night began at 04:00 after two hours of seeking a comfortable position. When I finally slept though, I changed positions (all of them cozy) without difficulty until Roman woke me at 08:00. It was like a miracle, and one that I hope to repeat.

Limpness, however, set a new record. We hit the sagrato after a dental cleaning, and I was so limp I couldn’t straighten my knees to walk. One lap.

A nap followed lunch and left me even limper, so after some safe moving of limbs to wake up the brain/body connection, I paced the hall from bedroom to kitchen. Between laps I would sit and imagine the rising and walking and turning I was about to do. Movement gradually became smoother. That’s similar to what Janice recommends to hasten recovery during limpness, and I vow to do that afternoon and evening.

The evening walk was awkward but not terrible. We ran into several people I know and love, before and after, and I was barely able to relate. That’s the worst of this, that and not being able to go to cultural events; it’s very isolating.

(From Stuck on Pause by Janice Hadlock)

“For [some people], accessing adrenaline does not automatically resume when pause is turned off. Instead, even after turning off pause for good, they might, from habit, automatically want to re-induce pause mode to deal with negativity or stress. In these people, it can feel as if pause mode is trying to reassert itself, with the help of the Blocker, any time stress appears. Until they increase the amount of energy that flows into the body and practice physical moves that use that power, thus increasing sympathetic mode behaviors, they might find themselves sliding back into pause mode from sheer habit: behaving and thinking in a manner similar to people in partial recovery.”

Thursday, August 25

Nothing unusual happened today, except that given movement in general it is a miracle that I am typing as well as I am. Oh, I slept very well and without an intermission; that also qualifies as miraculous.

Friday, August 26

Well, I slept three hours then never more. To start with I wasn’t sleepy, then around 06:30 that changed, but I was so intimidated trying to find a comfortable position that nothing would let go. Missed the morning walk in deference to a nap. Now, I realized yesterday that RLS has not bothered me for at least two days, and as usual I jumped to conclusions and expected that to last. No, today it was worse. My mind likes regularity and this process is the opposite from regular. Sometimes I despair, other times I take a deep breath and understand that aside from movement difficulties (and gallons of saliva) I feel well. So, I do the exercises and remember that hundreds of others have recovered in this way.

Saturday, August 27

I slept a straight eight last night, but only after doing more than an hour’s worth of exercises. Morning walk featured only one lap on the sagrato when it was defeated by plantar fasciitis on both my big toes. We’re on a program to remedy that, but have a way yet to go. Evening walk in the garage started difficult, but taking time to imagine vigorous form between laps paid off. Towards evening I was tempted to fall into a funk for my utter lack of independence, but was saved by my (re?) discovery of the PBS series, Shakespeare Uncovered.

Sunday, August 28

Slept well, walked very well at intermission, and not too badly in the garage this morning. I’m imagining walking as much as I can stay awake for. It helps. Limpness was, for the first time, a bit less pronounced today. (FORGET ABOUT THAT! By early evening, I was so limp that even with imagining elegant movement, I could barely walk.) Something about the way I move today reminds me that it is not weakness that plagues me – I am able lift things and myself with strength – it is non-responsive muscle and nerve. And yes, the limpness is still coupled by a restlessness that makes it impossible not to walk.

Also, I normally complain about being over fed. Today I was ravished by hunger every three hours. When I stopped eating, I slept. Reduced to my animal elements.

Otherwise, a day at drift. As usual, a good meeting with the PD support group on Zoom.

Monday, August 29

Two standouts today. 

First a remarkable reduction of struggle. That mouth tremor that I mentioned before works like a barometer; when I struggle (that is, rush ahead of myself, refuse to accept the condition of the present moment, try willfully to “get better”) the tongue and lips begin to tremble. When I cease struggling, the tremor stops with it. Today, I stopped the habit of struggling. The tendency is still there, but I am no longer drawn to it.

Second, the imaging exercise becomes easier and bears fruit. Its first fruit is the reduction of struggle. Another remarkable result is a huge increase of energy into the medulla oblongata. I sit on the edge of my bed, swing my arms up a few times while imaging a smooth rise from sitting, then imagine a vigorous walk to the kitchen (about 12 meters round trip). Then I get up and make the trip without expectation. The results are various, subtle, and very real. One of the most notable results is that after only a few days of this my self image has changed from one of a victim to that of an addict on the mend.

Here’s what I think my history is. I turned off pause shortly after withdrawing from the levodopa drugs I had been taking for nine weeks. With that came an awareness of depleted energy through the medulla and around the pericardium, so I made various attempts at increasing it. When mobility problems (and movement issues in general) didn’t disappear, I lost faith in my perceptions of energy and turned towards physical exercise as a remedy. But that was filled with struggle, was an effort of will which is pause mental behavior, so after improving over several weeks, it would always crash to zero. This was mystifying.

By simply imagining what it is like to be without symptoms, that effort of will is going away, and even though walking is often very difficult, it feels like I’m learning to use the para/sympathetic continuum after decades of being stuck on pause. With that comes a surety that PD is a habit that only I can overcome, and that nobody and no substance or technology can do it for me. With that new attitude comes the necessary energy and clarity.

To be continued.

Tuesday, August 9

It was a typical two-part night, the intermission lasting about two hours. When I finally returned to sleep, I held the same position for three hours. Trying to reach my phone to check the time was sack-of-gravel all the way. Everything was at a low ebb as of noon, dexterity, mobility, speech, but showed some signs of improvement during the afternoon.

FRIEND: Forget improvement, that doesn’t apply.

ME: Is this what you meant last Thursday by changes and not to be freaked?

FRIEND: Yes.

ME: It’s awful. What is it about, what’s the rationale?

FRIEND:You can invent dozens of reasons, the process is so much more nuanced there is no reason to struggle with rationales.

ME: But how could this be for the good?

FRIEND: You have to wait for it, you have to trust.

This was accompanied by a huge rush of energy up the spine and into the head.

ME: I have to trust.

FRIEND: And accept.

For several weeks now I’ve noticed a perverse pride in my symptoms. When someone makes light of them or offers help, something deep bristles, wants to protect the purity of my struggling. Next moment of joy that habit is on my list for destruction.

Wednesday, August 10

Several years ago, not long after I began to feel symptoms, I consulted what I called my inner companion about what I should do if indeed they indicated Parkinson’s. The answer was clear; you will get through this. I asked many more times after that and the response was always the same, with an emphasis on the word “through”. Who I now call Friend backs this up.

Today, I fell into wishing I could do life over as I experienced all the ways I’d been egotistic, especially regards my parents. I did what I always do; I dismissed it as impossible, regret must be lived with because what is done is done, no one can take back time. Friend took me by the hand and showed me that past reasons for regret can be resolved and must be faced, must be gotten through and dissolved.

So, I embark on a new leg of the journey, turning regret into granting and requesting forgiveness, then letting go. It’s an ongoing project, and will free the heart. Will get me through this.

OR

Limpness dominates (recovery symptom), legs of rubber. Really tired of this!

Thursday, August 11

Slept well in two parts, and was comfortable all night. Woke before Roman arrived, and walking around the house was hugely better; turning, standing, speed control – all of it easier. By the time we left the apartment two hours later, all was back to where it was last night. Very disappointing. Napped on and off after walking (and listened to music) until almost four. Movement was in between – better than earlier but not as fluid as early morning. What is going on!? I ask my Friend. Ask a simpler question he tells me back. Don’t freak out, it’s all for the good.

Friday, August 12

I noticed very clearly during the day that I was aware of a vast space in my heart region (where Friend recently transferred to new digs), and that I had a choice; live there with Friend, or return to the twisted, damp quarters of non-specific location that I am used to. I chose the heart and noticed an immediate difference. Then Maria came over in place of her husband, Roman, and told me that the puncture wound he got in Rome when he stepped on a nail was causing his entire leg to hurt, and within seconds I lost track of the penthouse apartment of my heart. Several hours later, awareness is almost what it was. Very instructive.

From Recovering from Parkinson’s by Janice Hadlock

“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, August 13

From Recovering from Parkinson’s by Janice Hadlock

“Again, during recovery, the ability to imagine certain movements might still be dormant for areas where the body has been rigid, as opposed to numb. The muscles for these areas, muscles that had been rigid while on pause, become limp and unresponsive when pause turns off. It seems as if, when pause turns off after decades of inhibiting the brain’s motor-imagining area, the use and coordination of some of these muscles cannot be accessed right away. If they can’t be accessed, the muscles behave as if they are asleep – still disconnected from the mind’s motor imagining area.”

And that was my day (and week, plus).

Sunday, August 14

I’ve been having periods of lighter, looser walking since yesterday sometime, brief periods that end as suddenly as they begin. Then, typically they leave me tired. So, I enjoyed a good night’s rest with an hour intermission followed by deep, comfortable sleep, and frequent naps. First movement this morning and yesterday was very encouraging (as it often is) but tightened and lost control after 90 minutes or so. After naps, nothing works for fifteen minutes, then once on my feet movement can be anything, though generally since last evening it has been controlled and easier than I’ve grown used to. 

Attitude is generally pretty good, but today I overdosed on news (on weekends, “speculation” is a better word) ignoring Friend’s warning, and that has muted my mood.

Monday, August 15 – Ferragosto

A walk this morning was suitable for the (Extra-Special) Olympics, with a general lightness of being that was delicious. That waned by 13:00, but an echo of the lightness remained. My Italian also improved.

Evening walk was record-breaking according to Roman; six laps on the sagrato without assistance, and without stopping. For part of that without shuffling. But more significantly, the pericardium was energized.

Last night I watched a documentary on the evolution of American urban parks and cried from the beauty and creativity of it all.

Tuesday, August 2

I slept from midnight to 02:30, then was awake until 06:15 for want of being able to find a comfortable position. Then I saw a thought form; what are you fretting about? Nothing really matters, in the end you’re dead. I let go of that thought, and instantly felt lighter and more fluid, and a single attempt at finding comfort resulted in three hours of sound sleep. Not all symptoms were affected, but the difference was clear. By holding onto the restrictive thinking, I am also choking off the energy needed to rebalance and heal.

In a nutshell Parkinson’s is this: a deficit of dopamine in the part of the brain associated with pleasurable automatic movement (among other things), and a surplus in those parts associated with fear and wariness. A clear example from this morning. Irina wanted me to replicate an exercise she dubbed swan lake, where I grab onto something solid and lift my legs behind me, one at a time. She offered her hands for me to hold, and I could not move my feet at all. She brought in the locked walker and my legs lifted without effort.

From Recovering from Parkinson’s by Janice Hadlock.

“While recovering from Parkinson’s, muscles that had been rigid lose their rigidity and instead became limp and unresponsive.

“Unresponsive is different from ‘weak.’ When you first begin to wake after a deep sleep, you become aware that you are conscious but your muscles might still be limp and unresponsive. Even if you are in perfect health […] your muscles will be limp as you feel the first stirrings of consciousness. After […] a few minutes, as the mid-brain resumes running awake-time electrical currents with steadily increasing amperage, the brain’s automatic motor function, which has been disconnected during sleep, reconnects. You begin to imagine moving a muscle or two, and suddenly, you can move.”

I am strongly experiencing limpness, and have to be able to hold that in context, not to slide into fear that symptoms have been worsening or expectations that they will improve on my timetable. I experience complete immobility for several minutes after sleep, so it stands to reason that after several decades of mock-death, there would be a similar period of gradual resumption of brain function.

Wednesday, August 3

I did the destroy habits routine recommended by Janice. I don’t know if there was a connection, but I also slept well on Wednesday night.

Thursday, August 4

In fact, I went from three to five hours a night plus a short nap or two, to seven hours and another three hours of sleep during the day. And I was able to roll over and easily find comfort in bed. At the same time, I have been Super Limp all day, but continue internally happy and calm. Typing is amusing. Friend says “hello”.

We stopped at Blue Bar for a morning spremuta. Antonny told us that his son (who is nine, and a fine lad) sold his old toys to raise a hundred euro for Ukrainian charities. Irina cried first, but I was soon to follow.

I was sleepy all day until after supper.

Friday, August 5

So, I did the exercise for eliminating the pause mode habit on Wednesday, and last night slept a straight eight in comfort. Today I realize what a bean-counter I have been; keeping tally on symptoms as if they caused themselves. This morning’s walk on the sagrato was no example of perfect form, but I felt lighter, I didn’t fall into pause mode because of the shambling and shuffling, and I felt the difference. I have to relearn to walk not using the pause mode override, instead of cycling through from shambling to striding, then crashing when I can no longer sustain the effort. So, today was major, even if a casual bystander would not have noticed a difference.

Saturday, August 6

I slept well and without waking during the night, turning over and changing position without difficulty. Walking around the apartment before going out had that same loose quality that I enjoyed yesterday, but by the time we were to leave I was overcome with fatigue (or limpness and sleepiness) and had to doze in a chair for ten minutes. Walking the garage was initially loose and fairly easy, but I quickly tired. Friend said on Thursday that the next few days I should be prepared for significant changes and not to let them freak me out; they will be for the good. On one hand it seems a vivid demonstration of choosing other than pause mode when faced with physical challenge, and I felt strongly that was happening before we headed out. On the other, both options remained open and I’m not yet familiar enough with how they are chosen to feel secure. At various times today I have experienced exactly what Janice describes for this phase of recovery, but I can’t find a quote and cannot put words to it myself.

Sunday, August 7

I slept well until six, then returned the sack of (potatoes instead of gravel – a slight improvement). Walking the sagrato was not easy but in fairly good form. Then I took an hour nap before lunch which left my muscles so unresponsive that I want to avoid naps for the rest of the day. Agility is up, and after pacing the hall for twenty minutes, so is mobility.

“Those who recovered did it in response to their own steady work and changes in understanding. Please know, for those of my patients who have recovered, I might have been the witness, but I was never the ‘curer.’” (from Stuck on Pause by Janice Hadlock)

Monday, August 8

For reasons unknown, I’ve always placed my Friend so he was sort of looking over my left shoulder. Well, last night he took up residence in my heart. That feels better.

Today, I feel terrific, just my body has to catch up. I’m waiting. In the meantime, I can do nothing with ease.

Tuesday, July 26

Wasted and weird followed as dominant themes from yesterday. Needed to pace the hall a lot. Typing is problematical, mobility comes and (really) goes. Sometimes movement is super slow. Patience.

Wednesday, July 27

Last night while watching a movie, I was feeling a lot of tension in my chest muscles, so intermittently began pounding my chest like a gorilla. That solved the issue and felt really good. I woke at 02:30 with a similar problem, so applied the same technique. I noticed two things. A few seconds of pounding is all I could do before I lost rhythm, but a pause would allow it again. And the exercise energized my whole chest cavity and heart region in a very pleasant way. Furthermore, the energy was associated with dopamine and adrenalin production, and seemed disassociated from use of pause mode.

After playing with this phenomenon for a half hour or so, I could easily distinguish between use of sympathetic/parasympathetic (normal) brain behavior and pause mode behavior. I came to theorize that walking was sometimes stabilized by my use of pause mode, and that the occasional “crashes” that I experience were due to the unsustainable nature of pause. I further realized that all symptoms are recovery related – a part of the healing process – which is why they can change so dramatically and so quickly. (The remainder of the week has made it difficult to remain quite so positive.)

Thursday, July 28

You know that gorilla pounding that felt so good? Well, early this morning I tried it again and could barely do it at all. Later (I don’t remember when) I could do it if it was done with a lot of force. During the day I could do it rather well sitting at my desk, but hardly at all sitting on the edge of the bed. That’s a snapshot of this journey that captures its craziness perfectly. Interspersed with all of that were moments of feeling energy moving in all the right places, of being so lumpish it felt like I would never walk again, of pacing the hall like a young man, of taking several long minutes to get out of a chair or to change direction on my feet, of bouncing up with hardly a thought. All of which leads nicely into this next quote from Stuck on Pause by Janice Hadlock.

“A person who is starting to recover might go through swings: going from safe and moving easily, to being on pause and being tight, tremoring, and with inhibited movement. A person might have these swings several times per day, or even per hour. Whether or not one is recovering is not a question of the Parkinson’s symptoms getting weaker – it’s a question of whether or not a person is increasing his use of a new, healthy, mental posture of being safe or oppositely, is continuing and/or even increasing the use of his pause habit. When he uses the fear-based mindset, all the linked symptoms of pause might re-appear, as strong as they ever were, even if he’s using them less often. The actual strength of the symptoms, at any given time, will vary in intensity, just like they did before the person started working on recovering. If the person on pause is somewhat relaxed, the symptoms might be minimal, if present at all. As tension or stress mounts, the intensity of the symptoms will increase. After all, this was the case prior to starting recovery, and it will be the case during recovery, whenever a person uses pause mode.”

Friday, July 29

I slept well, as usual, and also as often is the case, not enough. Initiating movement was very difficult and slow for the first half of the day. How I felt reminded me of what it was like during withdrawals of more than a year ago. It’s not new, this symptom, but that it appears now is strange to me. Friend says it will pass as quickly as it arrived, but I don’t really know what’s going on and am almost totally unable to explain or describe how I feel to anyone around me. The question “how do you feel” is asked with genuine concern, but I don’t know how to honestly respond in detail without overwhelming the listener, so I generally respond “I feel fine,” which is true as far as it goes but fails to touch on why I am moving so slowly or why I tire so easily. Then add to that the lack of nuance I can bring to the conversation because I am usually limited to Italian, I get frustrated which negatively informs how I behave and feel.

From Stuck on Pause by Janice Hadlock:

“If you understand how the brain works, how it retains its links and its habits and how symptoms don’t necessarily weaken or diminish, but might reappear full force every time that the pause mindset kicks in, you will understand what is happening if you take a ‘step backwards’: when a negative thought triggers all the usual, detested links. You won’t need to panic that you’re getting worse or that you have made no progress. You aren’t getting worse. That’s not the case at all. If you’ve had even a few interludes of safety and lightness, if you are improving your relationship with your Friend to the point that you sometimes feel safe, you are making progress. The sudden reversion back into your old mindset and the concomitant re-appearance of symptoms might have been jarring because you’re starting to be comfortable with the new way of thinking. You’re starting to enjoy some time when you are genuinely relaxed and maybe going through recovery symptoms now and then. So any return to the Bad Old Ways will be even more alarming than it used to be. Don’t let that alarm overtake your mind. You need to resume talking to your Friend and working on feeling safe. If you were starting to have moments of feeling non-paused, so that your temporary reversion felt worse than ever, then you are making progress. If and when you fall off a horse, you need to just get back on. Don’t choose to fear all horses.” 

Saturday, July 30

Roman and Maria leave tomorrow for a week’s vacation with their three grandchildren. They are going to the sea, I’m not sure which one. A Ukrainian lady and her seven year old daughter are tending me for the week; Irina and Anna. They are staying in town with an aunt. When Russian shells landed near their apartment building and the impact blew out the windows, she and her husband decided it was best to remove Anna from the terrors around her. Their home is in eastern Ukraine. The three months they’ve been here is the longest Irina and her husband have been apart. She is a teacher of English. This evening Roman dropped by so I could meet his grandkids. I am so blessed.

Last night, between first and second sleep, I discovered that sometimes swinging my arms released energy in the spine and into the head, so I swung my arms a lot. It felt wonderful. It also made me aware of how bunched up my body is. Between swings I adjusted posture to stack up comfortably. That felt good too, but I couldn’t actually do anything like walk – or even swing my arms – and still remain upright. Today terrible immobility accompanied every attempt to change direction. Me and my Friend have theories as to why, but are going to let them mature before sharing.

Sunday, July 31

tI didn’t display good sleep patterns last night, so when Irina tried to wake me at 09:45, I asked that we skip the morning walk so I could score another half hour of sleep. To make up for the abandoned stroll, she massaged my legs, back, and shoulders, and now I know why the Ukrainian nation was able to survive Hitler and Stalin, and will prevail over Putin. Strong people who don’t countenance self pity.

Limpness is a recovery symptom, and the word describes well my main characteristic of movement for the past week. The arm swinging that was so satisfying a few days ago is now extremely difficult to do. Gorilla pounding? Forget about it. I ask Friend for constant advice on how to navigate from point to point in the apartment because his advice is always spot on, and is a healthier alternative to living in fear from handhold to lean. Janice says that periods of limpness are the most likely times for her patients to give up the fight. This is my third or fourth experience of limp (and the most undeniable) and I can totally understand wanting to throw in the towel. The onset is rapid (over a week’s time or less) and it is more pronounced with each appearance. Until today. That’s not to say that I’m jogging about the apartment, but I do feel lighter and changing direction feels a tad less impossible. And typing is improved. For now.

Yesterday’s theory waiting to mature is well-articulated in Janice Hadlock’s Recovering from Parkinson’s:

“An hypothesis: when a person has been on pause and the channel qi has been flowing backwards for years, various sectors in the motor imagining area in the brain becomes dormant. People with Parkinson’s, for the most part, cannot imagine themselves moving. When people begin to recover from Parkinson’s, the motor-imagining area might not resume function right away. Or it might be able to imagine some movements, but not others, in the beginning. The dormancy in this imagining area might recover function fairly quickly. But until it does, people recovering from Parkinson’s might go through a period in which their muscles feel limp and unresponsive.”

The meeting of the recovery support group this evening was wonderful. Thank goodness for Zoom.

Monday, August 1

When earlier in the week, I discovered that swinging my arms would act as a kind of energy pump, sending waves of electrical charge up my spine and through my head, Friend warned that it would be days before I could do that again; that the brain’s capacity would need time to recharge. If I failed to report that it was because I didn’t want to believe it. The same with gorilla pounding and the pericardium. Well, during the night the pounding became possible again in short spurts, the swinging not so much. And I notice now that typing behaves in a similar fashion. What I don’t understand, and what Friend is silent on, is the larger cycle of the limpness recovery symptom, and why am I in the third or fourth repetition of that experience. Even the interrupted sleep of a couple of weeks ago looks like pillows of bliss next to the sack of gravel I’ve had to deal with this week – but none of it is new, I’ve been here before, it is only made to seem worse by the significantly improved state experienced during the interim.

I finally fell comfortably asleep around four – after short spurts that ended in sack of gravel standoffs between me and the bed – and woke feeling rested. Then Irina treated me to a very Ukrainian massage and exercise routine before breakfast that left me so exhausted I could barely brush my teeth. I napped instead of walking. 

Otherwise, I felt pretty good interiorly, a little less limp but not over it, and with extreme poverty of movement – so slow it took a full minute to get a hearing aide just to my ear, and another minute to put one in. The slowness and limpness continued through the day. And the fatigue. But internally I feel good! That is important.

Tuesday, July 19

From Stuck on Pause (2022) by Janice Hadlock: 

“Being on pause does give a person many benefits: heightened focus, intensity of purpose, and a feeling of being stronger, smarter, and faster than others. Of course, over the years, as the ability to sustain an effective level of mental emergency wanes, these ‘benefits’ diminish. By the time a person is bedeviled by the negative side effects of being on pause, he is not actually stronger, smarter, and faster. But his brain might very likely tell him that staying on pause is nevertheless keeping him ‘better than other people’ or keeping him ‘safe.’ Therefore, another thing a person might do to stop using pause is to stop desiring the ‘benefits’ of using pause: those benefits might have included feeling in charge; feeling compelled to be right in matters of judgment or morality; feeling powerful; feeling untouched by physical and emotional pain. So long as a person wants to have the benefits of being on pause, his brain will continue to opt for and further fortify the electrical brain circuits that support the habit of using pause.”

I wish typing were better today, I have a lot to sort out. The body is back to feeling like a sack of pea gravel, something I’ve not experienced for two months or more. But I’m understanding the process more, and my gems of thought will have to wait for a more agile day – or week.

Wednesday, July 20

If there is a cycle in how my body recovers, this week would vote in favor of a seven day turnaround. Finding comfortable positions that would last the night was nearly impossible. I slept the last three hours on my side (to discourage RLS) in the recliner; not an easy trick. The morning walk was better than anything I did yesterday, but it was still a sack of gravel being pushed along, not proper ambulation. Today, all is a bit better. We shall see what the weekend holds.

Thursday, July 21

Same sleep pattern as Wednesday. Walking also the same.

From Stuck on Pause (2022) by Janice Hadlock

“Many people who are making a mild effort to recover from being stuck on self-induced pause don’t believe or don’t want to fully accept that their own minds actually have been creating their problems. This disturbing concept can be in direct conflict with the person’s idea that his mind is extremely smart and clever and his powerful will has been the only thing making him successful in life or even keeping him alive. But when his brain has been modified enough that he has two viable thought tracks in his brain – the pause track and the ‘safe’ track – and he vacillates between them, he can start to see the relationship between his thoughts and his symptoms or lack of symptoms.

“This proof that his own mind was creating his horrible symptoms of immobility, rigidity, and tremor is often a moment of great dismay. This let down is sometimes followed by the gleeful realization that, if his health problems are only coming from his thoughts, he will be able to heal himself. This person continues, or even increases the intensity, of his steadily deepening relationship with his Friend.

“I refer to people taking this path as ‘recovering.’”

Bingo!

Friday, July 22

Sleep pattern normal and enjoyable. Lots of internal clarity. Fairly symptomatic – walking grew better through the day, typing worse. Very little general discomfort.

From Stuck on Pause (2022) by Janice Hadlock:

“Two steps forward refers to getting stronger at using a brain habit of ‘safe’ thoughts, which in turn activates a healthier motor system. A ‘step backwards’ refers not to symptoms, but to using, yet again, from sheer habit, the thoughts that activate pause mode. And those thoughts might activate all the symptoms of pause mode that you’ve ever had.”

Saturday, July 23

Slept until nine regardless of Roman’s efforts at waking me. Morning walk, very difficult, evening less so. Slept the afternoon listening to music.

Struggling with internal work. Typing very awkward, so must keep this short.

Quote of the day from Stuck on Pause (2022) by Janice Hadlock:

“When a person is slowly recovering from Parkinson’s or the habit of using self-induced pause, he might be feeling much lighter and relaxed for longer and longer periods of time when he is talking with his Friend and feeling safe…and then he might experience one hundred percent of his old symptoms when pause mode kicks back in. A person who is starting to recover might go through swings: going from safe and moving easily, to being on pause and being tight, tremoring, and with inhibited movement. A person might have these swings several times per day, or even per hour. Whether or not one is recovering is not a question of the Parkinson’s symptoms getting weaker – it’s a question of whether or not a person is increasing his use of a new, healthy, mental posture of being safe or oppositely, is continuing and/or even increasing the use of his pause habit. When he uses the fear-based mindset, all the linked symptoms of pause might re-appear, as strong as they ever were, even if he’s using them less often. The actual strength of the symptoms, at any given time, will vary in intensity, just like they did before the person started working on recovering. If the person on pause is somewhat relaxed, the symptoms might be minimal, if present at all. As tension or stress mounts, the intensity of the symptoms will increase. After all, this was the case prior to starting recovery, and it will be the case during recovery, whenever a person uses pause mode.”

To be read repeatedly.

Sunday, July 24

From Stuck on Pause (2022) by Janice Hadlock:

“…in spite of the apparent lack of change, the new thoughts were laying down tracks of new brain pathways that can eventually support new, improved mental, emotional, and physical behaviors. Eventually, when those new routes become wider and deeper, they will become the paths of least resistance. The brain will start using the new pathways in preference to the old ones.”

Slept really well. Morning walk, mildly successful, likewise midday pacing. Typing has been worse, but fine movement (like inserting hearing aids and moving a cursor with a mouse) are sheer agony. 

An aspect of my PD personality is wanting to be in charge, hence I was more a director than actor, more often a boss than an employee, more easily a teacher than a student. For this evening’s walk Natalia taught me some simple exercises, the sort of thing I was teaching my students seven or eight years ago. Whether it was the exercises that helped me walk more freely than I have in awhile, or that I gave in to being a student, I do not know. Probably both.

The adventure continues.

Monday, July 25

From Stuck on Pause (2022) by Janice Hadlock: 

“After having a few moments, or an hour or two, or a few days, of physical lightness, relative ease of movement, and softening of rigid muscles, but then reverting back to the previous status quo of rigidity and/or tremor, a person might continue working on cultivating a constant relationship with his Friend. Eventually, in a subsequent moment of once again feeling safer than usual, he will have another episode of relatively healthy mental thinking. He will again immediately experience the physical lightness and relaxation that comes with using a healthy blend of parasympathetic and sympathetic mode.

“As the person continues to work with his Friend, eventually learning to trust the Friend more than he trusts his own mind, he might find himself having predictable periods of good movement. He will notice that these good periods correspond to positive thoughts. He will also notice that his periods of ‘bad movement’ or ‘symptoms are worse’ are always immediately preceded by some sort of negative or isolationist thinking. He might be shocked by this realization.”

So, this morning about 02:30 I woke up feeling stiff which always recommends pacing the hall for fifteen or twenty minutes. Halfway through the first, shuffling lap, I watched a thought form; how courageous is self-loathing, how heroic to be able to face the abyss of my own unworthiness. It startled me, and I immediately chose not to tread that path of old, old habits. In real time my walking instantly improved, my whole body felt lighter, and it stayed that way for about forty minutes when I became physically tired and went back to sleep. Today, I’ve been wasted and weird. But I’m so encouraged by the living example of how this pause/PD thing works.

Tuesday, July 5

From Recovering from Parkinson’s by Janice Hadlock, “When attempting to come out of this [pause] mode, the body often exhibits tremor behaviors, also known as ‘shaking.’”

Whenever I wake on my own accord, I shake all over. If someone or something wakes me, I don’t. The shaking can last ten to thirty seconds, or it can come in waves for a longer period. I can successfully resist it if I try. It is not necessarily uncomfortable, but it can be tiresome when I am trying to catnap and every slight lean towards wakefulness provokes shaking.  Around 13:15 I sat in the recliner to nap while listening to forty minutes of chakra-tuning music on YouTube. That auto-followed into videos of various pieces by 2Cellos, and I let them play for another hour. There was no shaking, though at several points it seemed there might be.

Walking this morning was awkward and wore me out. But internally, I feel great. The evening walk surrounding Grand Albergo Real was hard to control at first but got better. Then I joined Erika for soft drink and conversation, and managed to avoid a symptomatic crash despite the heat, my extreme slowness of movement, and moderate discomfort.

Wednesday, July 6

I remembered as I was going to bed last night why I went on about the music in yesterday’s post. When 2Cellos started, instead of “waking” I played the edge of consciousness, still in the lovely part of sleep, but completely aware of the music… in fact, hyper aware, noticing its beauty and structure like never before. I tried again today, and occasionally could get there, but it’s almost an hour after 2Cellos started and I’m still shaking.

Thursday, July 7

I wanted to quote Janice on this, but I can’t find the passage. So, to grasp at its essence: Once off pause, the brain can go through a process of relearning how much dopamine to produce and distribute and to where. So, after a few minutes of fluid movement, the supply may deplete, and will take an hour or two to restore to effective levels. I’m just guessing, here, but if you change those units of time to hours and days, that might explain the cyclic phenomenon I experience with walking.

Today, walking was close to the bottom of its cycle, but interestingly enough, typing is fluid (though my muscles aren’t used to this so my fingers are quickly fatigued). Also, I have been dreading putting my hearing aides in, the precise movement required was sheer agony. Today they went in easily. Also my Italian became more spontaneous; I was cracking jokes all day and better understood what was being said. And all things requiring dexterity became suddenly easier.

Friday, July 8

Dexterity, language skills, and spontaneity continues improved. The morning walk was easier, smoother sooner, enjoyable enough that I wanted to keep walking when it was time to quit. Slept well last night but with a three-hour hole in the middle, but cannot nap this afternoon, nor am I especially tired. My attempts at napping, because they are attempts and shallow, end in shaking.

Janice dropped a hint in her last email suggesting that “in my experience, the majority of people with Type I PD from self-induced pause have demonstrated traits of sulkiness and petulance.” Historically, and in relation to the inconveniences of the disease, I can see that is exactly right and that the sudden openings of the past couple of days have to do with relaxing away from those habits.

The evening walk was not as smooth as the morning, but there were positive aspects. For one, I saw clearly how important it is not to feed the fearful, wary part of the brain, because I enter a downward spiral if I do. In this case courage is not just a noble sounding noun, it is an integral part of the recovery. Courage is to accept that this time walking is rough, and be cheerful. For the other, there was a rehearsal going on for a concert tonight on the front steps of the Duomo; classically-inspired rock. The concert features a small orchestra, several solo vocalists, and a choir. The music was beautiful.

Saturday, July 9

From Stuck on Pause (2022 edition) by Janice Hadlock

“Many readers have been baffled by the way that they keep slipping back into self-induced pause mode, and wonder why it returns after they have first turned it off. […] Using self-induced pause is a mental habit. So long as this habit is retained in the brain cells, self-induced pause – and all the old motor malfunctions that the body has developed to accompany it, such as rigidity, tremor, soft voice, etc, – might resume any time a person employs the mental habit of inducing pause mode. No matter how many times self-induced pause is temporarily turned off, it might be re-employed as soon as a person stops feeling safe.”

So far the newest edition of Stuck on Pause reads a little like a well-crafted crime novel, and corresponds exactly to my recent (and not-so-recent) experiences with recovery – at least those parts that describe the slow version. Today my legs are not so useful. But agility is better (therefore typing), language skills are more available (therefore Italian), and my arms and hands are freer.

There is another concert tonight in Piazza della Repubblica. For me, that is the hardest part of this adventure – not being able to attend live musical events.

Continuing on.

Sunday, July 10

Walking the sagrato this morning was pleasurable again, not perfect but in relatively good form. Likewise typing, and other small things like putting on my glasses, getting up from a chair, moving around the house. On Natalia’s encouragement I discovered that I can lift my hands above my head without feeling like I’m going to fall over backwards. Again, a little thing that is a major event in my day.

Monday, July 11

Walked well this morning, and as is often the case, was dead tired afterwards – by the fifth lap, actually. That means extreme slowness and difficulty speaking with Italian friends on the way home; even with English-speaking friends, to be honest. I slept like a stone post lunch, and was happy to note that after a dopey half hour the agility returned and I was moving at closer to normal speed. I slept really well last night, but have been taking little, almost involuntary, naps all day. Possible good news, the wake and shake phenomenon was much reduced today. I hope that holds.

Wednesday, June 29

Celebrate your life! All of it. Every corner and curve. Let your past inform your present to make you a fuller, kinder, more honest and spontaneous person in your future. That’s today’s recovery insight.

Walked okay, typing acceptable for brief stretches, slept like an angel.

Thursday, June 30

There was a black and white cat named Tito who lived next to where I am now. My first residence in Orvieto was also on Via Pecorelli, so I would pass Tito in front of his palazzo several times a day. We quickly became friends. He had a very loud and continuous meow, and would begin calling as soon as he smelled me on the wind. Those days he spent most of his time outdoors, scrupulous about his territorial boundaries. By the time I moved here, a year ago last October, he was spending most of his time indoors, but if he was out he would begin to call as soon as the main door to my building was open. Last December I saw him for the last time, and the finality of that visit was verified about a month ago by the lady who lived with him and his sister, Gigia.

From Stuck on Pause by Janice Hadlock:

“In the field of psychology, silent or spoken communication with an intangible, not physically present, loving and trusted friend, real or imaginary, is referred to as a parasocial relationship. The parasocial relationship, what I call ‘the invisible friend,’ can be one of the most helpful tools in making an accurate diagnosis, as well as a crucial tool for turning off pause.” (Because like prayer or meditation, it stimulates the striatum.) Janice later suggests you choose a deceased Friend who you knew well and loved; a best friend, favorite aunt, beloved pet. I had chosen most recently a best friend from college, and the relationship has been sweet, and honest, and sassy. Then day before yesterday I realized that every time I leave the building I check for Tito, even though I know I won’t find him there. So my college friend now has feline company. I hope he’s not allergic.

(The photo for this post is of Tito and Gigia, he is on the right.)

Friday, July 1

This morning’s insight from Friend (human). “Worry is a waste of energy and intension. Worry about the past is worse than worry about the future, and worry about the present doesn’t exist. Free yourself.”

Leaving the building for the evening walk, I checked to see of Tito was in front of his house. He wasn’t, but I could hear his meow in my head. Then I asked Friend to alert me when I slipped into or out of pause mode. He said he would. I asked again that the distinction be as clear as could be expected at this stage of my recovery. He said fine. The instant I began walking on the sagrato, he noted that I was in pause mode. I stopped, opened my heart, and began again to walk. He explained that walking in less than perfect form frightens me, and I go into pause, which of course worsens my walk and I enter a self-feeding downward spiral. “Don’t hide in your hole every time you feel a bit dizzy!” he told me. I could feel a physical difference in my brain after the adjustment, and the walking was more fluid (and more courageous) than it has been for quite awhile, and for all of the six unassisted laps. I was so happy (and tired) I could barely speak for the next half hour.

Saturday, July 2
“Don’t overthink it,” Friend said when I asked for a similar awareness of pause for this morning’s walk as last evening’s. “This morning will be different, and you’ll see how when you get there.”

It was still a very good walk, just as courageous and positive, just maybe a bit more tired, though not for lack of sleep. Friend’s warning was repeated when after a recliner nap I could not stop shaking; I eventually paced the hall for a few minutes which worked to quiet my nerves. Regardless, movement around the house has been relatively smooth all day, and for that I am grateful. The evening on the sagrato was about equal to the morning.

I’ve been here before three or four times in the past year, walking and movement in general steadily growing freer. Then each time it all crashed in a single day and I was back, more or less, to where I’d started. That hasn’t happened yet, but I asked Friend about it. “You would have a slightly off day, panic, and crawl back into your pause hole. And a little bit you were afraid of recovery, so you’d set yourself up to undermine it.” I’m determined to change that.

Sunday, July 3

Walking continued in good form. Friend continued to exhort me not to overthink. On Friend’s advice (more like orders, really) I also paced the hall several times. Both walking and pacing included deliberate stimulation of the striatum by various means, and I have avoided crawling into my pause hole for imagined protection. 

Monday, July 4

Way before I discovered the Parkinson’s Recovery Project and formalized my parasocial relationship with Friend, I conducted inner duologues with some higher entity, and five years ago when I first noticed signs of PD, I asked for advice. Over the next three years or so, every time I expressed internal concern I received the same reply – you will get through this, but understand; “through”, not “over” and not “around” but “through” and for good. Today Friend picked up on that theme. I have viewed getting through as a teeth clenching, shoulder to the wheel kind of effort, but Friend said, “it is a difficult process but one of permitting and allowing and progressively opening stuck places, it is joyful not grim.”

Walking and pacing today has not been as fluid as it has been since Friday, but I haven’t crawled back into my pause hole, so I have hope that I can navigate my way through to calm waters.