Month: September 2022

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.