Category: Recovery

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.

Tuesday, September 20

The pain in my right wrist that for months has made it difficult to put food into my mouth is suddenly gone. For now.

For several weeks I’ve been taking Beta Glucans for excessive respiratory mucus (mostly after meals, and only ever at home, strange as that may be) and it seems to be helping. A little.

In response to last week’s report of new legs Janice wrote: “after a transcendent switch to a new way of being, such as speech or being upright or whatever, the toddler will be cranky, might need days of extra sleep and will be unable to do the new activity. and won’t even try. and then a few days or a few weeks later, suddenly that new skill presents itself as completely mastered. the brain was working right along processing, absorbing, making the new skill its own. and when it is ready, BOOM. that’s what’s going on. so don’t worry. that “new” skill (walking) was real. and now your brain needs a bit of time to incorporate it into ‘you'”.

I’m grateful that she wrote that because today I feel immobile and hunched, and her broader perspective helps me to see what I am experiencing as interesting rather than dire. Which is vital to the process.

The evening walk was better than I expected it to be.

Wednesday, September 21

Susan, who was last here three months ago, says that my posture is more bent than before. It feels that way, too, sometimes.

Somewhere in her book, Recovering from Parkinson’s, Janice mentions that as a patient is regaining mobility that those symptoms that appeared earliest will often disappear last. Today and yesterday (maybe Sunday, too) I noticed my left foot dragging. My left foot was the first to drag two years ago. Until recently both feet were dragging, so it seems that my right foot is improving. I like when my progression matches the literature.

All things dexterous are awkward. I have been slow all day, resisting naps so I have a better chance of good sleep tonight.

Thursday, September 22

Shiatsu and a mad and crazy social life, all of it grand.

Past struggling with a pizza while eating out with friends, nothing was terribly difficult and everything was buoyed up by good company.

Friday, September 23

I’ve been happy to downright jolly all day. Typing is a disaster. Walking is probably better on the average than it was two weeks ago, but holds not a candle to last weekend. I could write in depth about that were my fingers more predictable.

Saturday, September 24

The morning walk itself was quite ordinary, though it felt either slightly improved or the opposite, I couldn’t quite tell. But the passeggiata was outstanding. We crossed paths with dozens of friends, connecting joyously with all of them. There were also drums and trumpets in Piazza San Giuseppe. Why I don’t know, Roman didn’t slow down enough for me to read the sign. Manual dexterity (and therefore typing) is a bit better. I slept straight through last night, successfully resisting an urge to get up when I woke in an uncomfortable position, still dreaming. Instead, I adjusted and slept on. More of that, please.

Sunday, September 25

For the second day in a row I slept through for about eight hours, walked to the garage (instead of using the wheelchair) and couldn’t honestly say if I felt better or worse (but assuredly different). Manual dexterity is definitely better, some movement on my feet is worse. Movement in general feels unhinged. And inwardly I still feel positive and good. 

I hugged my invisible Friend this morning, something I wish I had done more than thirty years ago when he told me he was diagnosed with AIDS. Instead, I tried to remain hopeful. Being hopeful was not in and of itself the problem, but ignoring his pain was to deny the reality of his experience. I’ve done that a lot. 

The following is from Recovering from Parkinson’s by Janice Hadlock: “A majority of my patients didn’t want to recover from the underlying cause of Parkinson’s disease. They did want to get rid of the symptoms. But they didn’t want to, didn’t think they could, or didn’t think they deserved to get rid of the underlying cause: a decision to stop feeling the physical and/or emotional pain of this world.” My Friend forgave me, now I have to follow his example and forgive myself for all the comfort I failed to give because I couldn’t allow that pain is a part of life.

Monday, September 26

Today is pretty ordinary, so here is a catch up for those days I couldn’t type.

Susan read aloud to me two times last week. Each time left me in a soaring mood. Today, I read this from Janice in Recovering from Parkinson’s:

“…research done in 2019 using brain scans to show which brain areas are activated in children when being read to, as opposed to when children use computers or other screen devices for self-amusement. While books are read out loud to children, the children’s brains’ striatums become highly activated.” Presumably it can also work for adults.

David and Birgitta ended a visit with a guided meditation on the Du Channel, and that also left a positive effect on mood. Even more significantly, it was the first guided meditation I’ve done without a running commentary from a critical mind.

And this to share, also from RFP: “Doctors see Parkinson’s as a problem of motor function and a problem of tremor, only. Because of this, doctors and patients alike usually only look for a return to motor perfection or cessation of tremor when they look for evidence of recovery. But normal motor function and cessation of tremor might be the last changes to be realized.

“Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering from Parkinson’s disease. The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.”

For those of you who are following this practice, or who have an interest that goes beyond my particular case, the heart of it is explained in chapter 12 of Recovering from Parkinson’s. It is well worth reading. Or re-reading. Several times.

Have a wonderful week, everyone!

Be ground

Be crumbled, so wildflowers will come up where you are.

You’ve been stony for too many years.

Try something different.

Surrender.

– Rumi

Tuesday, September 13

Two outstanding walks on either side of the Duomo, today. What I mean is, outstanding for what I’ve lately been used to, form is still crooked and changing direction is labored, but I’m lighter and enjoying it more.

Wednesday, September 14

One lap into the morning walk, the sagrato was suddenly flooded with about a hundred elementary school children who seemed to be on a field trip on their first day back; not an identifiable teacher in sight. It was a colorful, gorgeous, chaotic scene, but my brain sensed danger so we quit after three laps.

Instead of counting laps we’ve developed a scheme of naming each lap according to a journey taken. For example, yesterday we traveled to Rome by rail and titled laps as stops along the way. This morning was appropriately set in a crowded Roma Termini, looking for various gates. This evening we hit six of Rome’s touristic hot spots. 

On a more significant note, I seem no longer subject to full body twitches when startled by even a moderately loud noise. One more PD symptom may have bit the dust. For now.

Thursday, September 15

I feel a tad more mobile and a titch more agile today. My tendency is to rush the process, and I’m trying not to. “Don’t push the river, it flows by itself.” 

Shiatsu this afternoon was blissfully powerful, though I slept for much of it. I did wake long enough to notice that Michele was doing yin tui na on my left foot.

Today we walked the parking garage because of rain. In the morning we took a train back from Rome, and this evening we imagined a trek up Corso Cavour, stopping at eateries owned by friends. Thank you Roman for not being afraid of play.

Friday, September 16

After lunch I was experiencing strong and simple heart energy. One of the things I must be doing these days is to imagine what it feels like to walk. I do this but not without considerable effort. Today it seemed as simple as remembering what it was to walk in places that I love, and as I paced the hall my gait responded. Then two cherished friends came for a much valued visit, and I lost the connection to my Friend. Try as I might I couldn’t get it back.

Saturday, September 17

But I did get it back just before bedtime and that happened because I remembered to stop pushing, to accept and work with what is available right now – that is, to surrender.

The day unfolded nicely. Reading has not been possible for the last two years except on a screen. Just before that became the case I purchased The Umbrian Thursday Night Supper Club by Marlena de Blasi, and it has sat on my shelf ever since. Susan was here to visit, and asked me about it; I explained. “Why don’t I read it to you?” So, she started, and it is wonderful.

Riding the energy of a day well spent (good company, literature, humor… surrender), Iryna took me to the Duomo for a walk a bit later than usual. The instant I stood up I realized that something was profoundly different. The gait was slow, but controlled and smooth and steady from the outset.  
“My legs are completely changed, and I cannot even describe how!” The pace became quicker without losing its good qualities, and we walked twice the usual distance with nary a pause to rest. My arms stayed tense, and posture was bent, but there was little or no shuffling, and the stride was surer than it has been in months – if not years.

Typing is a mess and my voice comes and goes, but the walking made me feel like a corner has been turned.

Sunday, September 18

The transformed legs of yesterday survived the night. Morning and night we walked almost the entire “U” of the sagrato, twice each time. Moving around the apartment was also easier. 

Monday, September 19

Movement at home and in bed was fluid this morning, but I woke at 06:30 and couldn’t return. So, when Roman got into a long conversation about a gasket for the toilet tank with one of the workers at the Duomo, I fell asleep in the wheelchair. That required a warming period for the walk. Things started out of control, but improved.

It was a fairly groggy afternoon, and I felt oddly dull all day. The evening walk held to the recent pattern, only the grogginess informed both form and energy.

Tuesday, September 6

Several years ago, on a road trip with a friend, our intention was to head towards Roma, but habit took over and we went towards Firenze instead. Pacing the hall at 02:30 so I could tire myself to sleep, I experienced Janice’s metaphor of PD being a deeply ingrained habitual choice; the onramp most taken will remain the unconscious first choice. In the hall at home, instead of mindlessly heading metaphorically north, I consciously chose south and enjoyed forty minutes of relatively smooth, controlled, and pleasurable walking. And there was a bounce to my step. For the final turn I chose the PD onramp. The gait became heavy and the tremors returned. It really is my choice!

Wednesday, September 7

The freeway metaphor leaves out that I can correct my choice immediately, I don’t need to wait for an offramp. I went to dinner with dear friends. It was wonderful, and a phenomenon characteristic of recovery manifested; speaking spontaneously, without mental preview or rehearsal. I had thought I already spoke freely until tonight, and the difference was startling.

We all went to the theatre for a concert following. The theatre was a little stuffy, and that made me uncomfortable, so I bailed halfway through and, with Roman’s kind help returned home. Mind over matter is a PD habit. I chose the other onramp and avoided tumbling down the PD symptoms rabbit hole.

Thursday, September 8

Slept long and well, but still fell into a nap while Roman massaged my legs. It was delicious but left me exceedingly limp. Walking felt impossible. All work at the computer was torturous. 

Limpness was still the case when Michele arrived at four to give me a shiatsu treatment. It was wonderful, but as soon as he lifted his hands at the end, my body began to tighten, and within a minute was both rigid and exceedingly limp. I needed his help to walk to the recliner. Things stabilized gradually, but limpness and lack of agility lasted for hours.

I remembered that with shiatsu one often feels worse before one feels better.

Friday, September 9

The morning stroll was better than any walk has been in weeks. That was quickly followed by problems my arriving friends had with train service (a strike) which messed up both my Italian and ability to think solutions for a couple of hours. Then they found a couple driving to Firenze and were offered a ride to Orvieto! I took a very brief nap and woke barely able to walk. That passed, and Roman took us to a restaurant for dinner. I had difficulty managing the pizza, but it was delicious, and it was wonderful having Mary and Stasia here, even for just a few hours. I was supposed to join them at the theatre, but by then I was tired and Wednesday’s experience voted against risking a repeat.

Saturday, September 10

The day began with a flurry of messages; birthday wishes, lost friends, plans. Roman took us on a tour of centro which ended at the Duomo where I walked (with difficulty) on the sagrato. Everyone spoke overlapping while expecting me to translate. That wore me out in short order, but I managed again to avoid the rabbit hole – but just barely. I remained limp – and mobile only with great difficulty – for the rest of the day. At night, I woke after a couple hours sleep unable to sustain a comfortable position. Imagined or not, the problem kept me awake for three hours. But when I slept, it was blissfully.

Sunday, September 11

Limp, even limper than before. I’m trying to go with it.

I remembered today that I used to feel like I was always recuperating from something, and never could. That there was something elementally out of balance and I never knew what. Despite the limpness, weird sleep patterns, and manual awkwardness, I no longer feel that.

After a short and stumbling walk on the sagrato, Iryna and Anya and I played catch in the piazza.

Monday, September 12

It was a sack of potatoes night in terms of movement in bed, so I fully expected to be limper than ever today. I was pleasantly surprised when the morning walk on the sagrato was in relatively good form and comparatively smooth and quiet. The eight year old boy acting out the dozens of characters that populated his private adventure film helped keep my gait focused and light. I wish there were a means of tracking his progress as an actor so I could be there for his first award at Cannes. 

The evening walk was pretty good, too.

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.