Month: May 2022

Recovery – May IV

Tuesday, May 24

The feet hurt (callouses and corns) and little else of any note happened that I can remember. Except! I was drawn toward medical qigong for my left foot, which re-associates old injuries that never fully healed. For lack of a stronger description, the foot immediately felt more present.

Wednesday, May 25

Maria Rosaria did her magic on my feet, sculpting them and removing a handful of dead skin and tissue. The evening walk was therefore much improved; first lap ugly, second lap less so, third lap not bad. All day I felt that I was divided in two, though I can’t identify what those parts might be. Whenever I checked in with Friends, instead of partying they were meditating. I did my best to adjust.

Thursday, May 26

The morning began dual, but that sensation faded as the day progressed. The left foot hurts because of the qigong, but in a good and not incapacitating way. Morning walk was a repeat of yesterday’s three-part special. The evening walk began the same way but on the fourth lap I went solo, and the walk got smoother and stronger for five more laps, all of them unassisted! I was exhilarated. Friends continued to meditate. 

Friday, May 27

I slept a straight eight, and Roman still had difficulty waking me. The morning walk went five laps (two unassisted) and could have gone more, but we ran out of time. I paced the hall during the afternoon, and my gait was solid. But the walk to Roy’s car – and from there to the Alexander studio (and back) – was tortured. The lesson itself was wonderful (and free of restless leg syndrome, for maybe the first time) but was nearly nullified by the getting home. The evening grew fresh after a heavy-aired, humid day, and windows were thrown open to welcome the breeze.

Saturday, May 28

Morning on the (north) sagrato saw us do six laps, half of those unassisted. There were rivers of colorful tourists everywhere, flowing through the piazza and into the cathedral. I particularly enjoy those who exchange greetings with us, believing as they do that they have interacted with a real Italian. Takes me back to my traveling days.

I slept a straight six last night, not turning in until late as I waited for the air to cool. I had gotten it down to a comfy 20 degrees by midnight, then decided with unwarranted generosity to share the air with other rooms by opening doors. That foolishness will not be repeated. But, making good use of the time, I put in at least a kilometer pacing the hall while I waited. The walking improved, the turns and suspensions of movement did not.

Come evening, we paced the garage because of threatening rain. I’ve been fighting discouragement all day (as I do about once a week) and the quality of my walk this evening caused me to lose the fight. (A bit of lemon gelato helped.)

Sunday, May 29

Slept another straight eight last night, did five laps on the sunny side of the Duomo due to first communicants on the shady side, napped before lunch, after lunch, and again an hour or so later. Mobility is nil right after sleeping, but improves with use. Dexterity is rather astonishingly good. 

A wonderful exchange during the Zoom meeting of the Recovering from Parkinson’s support group led to my increased confidence that the path we are taking is ultimately effective. The evening walk right afterwards included a healthy sway, swinging arms, and a confident stride while holding on to no one. 

Monday, May 30

The morning walk on the sagrato reflected last evening’s, but with more of it unassisted. I slept well last night but with an hour’s gap, and due to work on the little balcony off the bedroom had to be up before eight, so perhaps that’s why after our walk I collapsed into the recliner for an hour’s nap (my first of three). Naps in the recliner of late are characterized by stabbing pains in feet and toes which trigger episodes of violent shaking. There is some occasional shaking in bed, but nothing as extreme or frequent. None of this is new, rather a new wave.

I noted last week that I’m experiencing hunger again, and double that for this week. Also, the jasmine is in bloom (and is everywhere) and yesterday evening I got a whiff of it for the first time in decades. And for this evening’s walk, much of the time my gait was automatic — such pleasure from such simple things.

Recovery – May III

Tuesday, Wednesday, Thursday, May 17 – 19

Walking was difficult all three days, improved a little on Thursday. Likewise with typing. Wednesday, by the way, we stopped at Bar Sant’Andrea with Erika and Michelle and joined an expat group that included several favorite friends. But the conversation was laced with how important health was, and each reference caused me to decline. No fault of theirs, but my reaction was recognizably self-conscious and the result predictably symptomatic. 

Friday, May 20

Walking continues difficult, but it is increasingly necessary. I paced the hall for an hour yesterday afternoon until it was pretty fluid, but put on shoes and take them outdoors onto a cobbled street, and it turns into an exercise in terror. Then I paced again for an hour yesterday before bed, hoping to secure a full night’s sleep – no dice. I slept four hours, then was up for three before I finished it off with 90 minutes in the recliner. Then, shoes on and onto the sagrato, it was shuffling and jerks for two rounds, but finished with a surprise third that was “much, much better” according to Roman.

My Friends keep telling me to get out of the way of recovery, and mixed in with that I see an almost lifetime habit of feeling unworthy. So, a mantra arose; I am worthy of complete recovery. It, and variations, repeated during pacing last night and today, gave me a thrill and made me feel grounded. 

Saturday, May 21

I woke at 04:30 and once up for water, could not rediscover the comfortable spot in bed that had satisfied me for four hours of delicious sleep. So, I paced. For an hour. And after a few minutes was walking well; not perfectly but easily and enjoyably. But every attempt to return to bed in comfort failed. At 06:30 I gave up and used the recliner. An hour later RLS set in, and shortly after that general shaking, but I somehow slept through it all until 09:15.

Having paced the hall so happily, I expected a good walk on the sagrato. Nope. A horrible walk; hunched and shuffling and difficult. By the time I met Ida for coffee, I was a trembling, inarticulate mess. I returned home to the recliner with results similar to this morning’s.

For the first time I can remember we gave up on the evening walk almost immediately. For one, the corn on my little toe was very painful, but we also experimented with a site and time of day that didn’t work out. My mood was improved by watching two dogs fall in love, but as soon as we returned home, I collapsed into the recliner for a late, long nap. There might be hell to pay tonight… and maybe not.

Sunday, May 22

I didn’t really sleep until four, but once I did, it was a solid five and a half hours. Walking outside has been a challenge all day, while I spent at least two hours, cumulative, pacing the hall in fairly good form. Part of the difference is due to painful corns and callouses, made more so by shoes or sandals.

I seem to have regained the Recovery symptom of sleeping a lot. Also the limp period between 11 and 13 is back, and was so profound today that I wondered if I wasn’t actually paralyzed. Nope – 13:30 arrived and I was no longer averse to movement, just slow as a drunken turtle. 

Monday, May 23

The brain, says Janice of The Parkinson’s Recovery Project, is by nature conservative. When there are significant changes in neural circuitry, the brain’s job is to return the system to the status quo, to stabilize. Okay, I get it. Do your job, brain, and let me move.

A key element of Recovery is to replace the ever-present inner monolog (which can often be negative and grounded in destructive habit) with a dialog with an “invisible friend”. It is suggested that the Friend be someone who is physically departed, but still close to the heart and fun to be with. My Friends have come and gone over the past year and a quarter, and I had settled on one full time Friend bolstered by guest appearances from a couple of others. Then two weeks ago a chum more recently passed came knocking at my door, and it wasn’t long before I let her in. My two Friends never met in life, but (however it works) they have now, and they are having a wonderfully theatrical time of it! Whenever I check, I’m greeted by a burst of color and laughter and song. “What’s up?” I ask. “We’re celebrating your recovery,” they reply. I hope they know of what they speak.

Free Bonus!

From one of Janice’s recent letters, quoted here with her permission:

“Recovery is crazy, it is not a straight line, but at some point, as we start to have good movement instead of bad, we have to admit the ‘degenerative’ nature of PD seems to have turned around.

Your report, esp on [last] Saturday, really tells the story: you’re having various good behaviors that you haven’t had in years.

It’s all very interesting. It isn’t as if bad symptoms slowly, steadily change into good ones. When they are bad, they are still bad, and when they are good, they are glorious.

This has to do with the brain behaviors. When the mind goes into negative past thinking patterns all the brain links for pause-mode movements might be activated. When the brain is in the new, ‘I’m safe’ way of thinking, movement might be great, even though there are recovery symptoms due to weak muscles and dormant nerves.

What really changes, really, is the amount of time one is spending with the positive mindset. That determines how much time is spent with ‘good’ movement and with recovery symptoms, which are actually good, a form of healing.”

Recovery – May II

Tuesday, May 10

I slept well, but walking the circuit around Torre del Moro was a struggle. Nevertheless, we did two turns, and half of that was unassisted. The weather is perfect and I have wanted to walk normally all afternoon. There is not even the hint of an urge to nap.

The evening stroll was no better or worse, but at least I held my own. We stopped at Blue Bar afterwards. The cough decided to return just as there were lots of lovely people to talk to, which was disappointing.

The focaccia, half of which I ate at Blue Bar with only a hint of a drippy nose, was finished at home followed by a bucket of snot, sneezes, and exaggerated coughing. I coughed through a conversation on the phone with Gina, who I adore, my body squirming with discomfort. It wasn’t a bad day, but I’m hoping for a simpler tomorrow.

Wednesday, May 11

We walked nearly a kilometer around Torre del Moro, and half of that was unassisted. Then I lunched with my friend Cheryl at Enoteca al Duomo. By the time I got home at 14:00, I was destroyed. I slept until my Alexander lesson at 15:30 when I presented Monika with a pretzel of a tired body which she set about trying to relax and, to a large degree, succeeded. Then we did another half kilometer at the Duomo, and had a dozen street-met conversations on the way home (plus a delicious salted caramel gelato). It was a fine day interspersed with periods of abject desperation.

Thursday, May 12

Walking was difficult and noisy at the Duomo this morning, though I managed to shuffle half of it without holding onto Roman. Lunch was difficult to deliver to my mouth (no tremor, just slow coordination) and then I slept 90 minutes in the recliner; but without restless leg syndrome, and only the slightest moment of stiffness and trembling when I finally woke. 

Then after an afternoon of benign discouragement, Natalia took me to Torre del Moro where I did three completely unassisted turns around the “block”. That was more than I’ve been capable of in a year and a half, and the most in two years without medication.

One of the greatest challenges is to accept that all improvements are not going to arrive all together and all at once, nor will they necessarily stick around for very long before taking a vacation. Cherish the little things, like being able to put my pants on all the way, and without trembling; a change that also seems to be lasting.

Friday, May 13

We did two circles around La Torre this morning, unassisted. There were lots of people out, so I returned home content but tired.

I slept some.

The evening walk was on the sagrato, not easy but unassisted. Then we wheeled around, meeting people, while my spinach pizza rustica was being prepared. I returned home utterly spent and uncomfortable, and so I remained all evening.

Saturday, May 14

Sleep was made difficult by a deep discomfort and an internal heat. Indoor temperature was a pleasant 21 degrees, but after an initial sleep of 90 minutes, every attempt even at lying in bed was met with a feeling of suffocating warmth.

That was accompanied by a strong poverty of movement, and walking was not only stiff and slow but felt theoretically impossible (typing, however, was mostly fluid).

I slept around four until Roman woke me at nine. We walked the sagrato, frequently dodging tourists, but I managed to complete five laps and 90% of that was unassisted. I lay in the recliner after lunch to meditate and listen to “heart” music. When I came to, about twenty minutes later, I was in a puddle of white light, which couldn’t be a bad thing. 

The rest of the afternoon I wanted nothing so much as to take a walk on my own. Oh, well. At least a strong desire is next best to imagining, and imagining a thing can train the brain to make it real.

By three-thirty I could not sit still, so I paced the hall for thirty minutes, paying special attention to keeping my strides as long and stable as possible. 

This evening, an unassisted walk from Gonzaga to Giovenale and back. The first few steps were good; right arm loose and swinging, stride strong and stable. Then I stopped feeling safe and the arm twisted into a gnarled root. It was welcome relief to be out and moving, but I returned home feeling shaky, tight, and empty. A very short rest didn’t help. Some time and a smoothie, did.

Sunday, May 15

I woke after a sound sleep feeling loose and relaxed. We hit the streets early, before the crowds and heat, and I walked three times around La Torre, completely without assistance, stopping to hold onto a poll now and then to straighten my posture. After those three laps, we walked to Bar Brozzi for morning refreshment (a spremuta for me, caffe for Natalia), again without assistance. While there, the crowds thickened, so walking back to La Torre was more difficult, but I made it.

Both Natalia and Roman are always reminding me to stand straight. Today, I told Natalia that the disease makes me hunched, and that there was little I could do about it. “No! It’s a habit!” she said, “The whole disease is a habit of the brain! Make new and better habits.”

Otherwise, typing and dexterity are not great. And the recovery symptom of sleeping a lot has given way to sleeping more normally. I paced the hall a lot this afternoon; sitting still was difficult.

This evening we did three circuits of Torre del Moro, then walked down Corso to Cassa di Risparmia. Every so often my gait would normalize for ten or fifteen meters. Huzzah!

Monday, May 16

I lost a couple hours sleep last night hassling with temperatures. That kept me busy until seven, and when Roman woke me at nine, I was so sleepy I could barely move. A dental appointment at eleven meant shortening the morning walk to once around La Torre, and as I was only half awake, it was hardly representative of my best form.

The right leg, by the way, is still a little sensitive to touch, but the swelling is down and remaining bruises are light – almost gone. Also by the way, my appetite which has announced itself through low energy rather than direct perception of hunger, is roaring back.

The evening walk was difficult and exhausting, and I hung onto Roman like my life depended on it.

Recovery – May I

Tuesday, May 3

My right calf was much stronger and pain-free for the first hour after rising, but by the time we reached the sagrato, it was tired and achy. After lunch I slept for three hours. The evening walk around Torre del Moro was magical; filled with friends and well-wishing. Then on the way to Blue Bar, and just past the Torre, it showered while sun lit the raindrops. We stopped at the gelateria and watched, stunned by the beauty of it all. It was a very local rain, just between La Torre and Piazza della Repubblica, which only added to its magic. An hour at Blue Bar with very special friends and home.

Who cares about an aching leg when surrounded by such beauty? Oh, by the way, my doctor came over this morning and gave me stuff for the leg, then we ran into him three times on the street, each time treated like we’d not seen each other for weeks. I slept a lot.

Wednesday, May 4

Leg quite sore, walking a real challenge. I slept a lot. Friend teased and prodded me all day, which kept me out of dark moods.

Thursday, May 5

The cough provoked by trying to speak was persistent all day – very annoying. The leg ached at rest and was very painful when first standing, but by evening it became rather benign. I was able to attend Kansas State’s student architecture exhibit on my own feet with the wheelchair parked outside the main space. It was hard but not so much as to be an impediment. The cough was far more bothersome, and interrupted not only speech itself but word choice as well. My arms were loose much of the day, tightening only when faced with possible pain or physical challenge in some other body parts. I slept a lot.

Friday, May 6

The cough was brought significantly under control by being more regular with using an inhaler my doctor prescribed for the same cough last summer. I walked about half our perambulations in the garage on my own. Even though the right leg still hurt and was a bit swollen, walking was much more fluid than it has been. Katrin, my physical therapist, gave me a late afternoon stretch that was remarkably relaxing, but there was no time afterwards for an evening walk. I slept a lot.

Saturday, May 7

Thirty-four years since my father died – half a lifetime and more.

This morning I woke at 05:30 and padded to the kitchen for some water. I was already back in bed when I realized that my walk was solid, fluid, and involved appropriate upper body movement. So, I got up and paced the hall, enjoying the normalness of it all. The gait was not perfect, but the arms swung in a way I’d forgotten they could, and turning was easy. I went back to sleep confident I could return to that gait during the morning walk. Not quite so simple as all that. Our pacing of the sagrato was better than it has been lately, and I did half of it on my own, but the coordinated magic of my morning trip to the kitchen was barely represented.

Fast forward to evening. Just getting up from my desk I knew things were different. We wheeled to La Torre del Moro to do a circuit around the block, and as soon as we had begun the early morning gait returned. I ended up walking three-quarters of it on my own.

Otherwise, I slept a lot.

Sunday, May 8

We did two circuits of the Torre del Moro this morning, and I walked most of that unassisted. It wasn’t pretty, but to be fair, it wasn’t a shambles, either. But we did eight evening circuits in the garage, all of it unassisted! My sense of balance is stronger which makes walking easier. Upper body response today was not as engaged as yesterday, but movement in general was more solid. Otherwise, I slept a lot.

Monday, May 9

I was hoping to end this week’s report on a triumphant note, after all there was a good setup for it, but instead the day is one step back. In the long view I’m doing okay, but walks today were more or less equal to yesterday with the shine knocked off, my voice was hoarse, and connection with others was labored. I wanted to sleep a lot but couldn’t.

Recovery – April V


Tuesday, April 26

From the moment I woke this morning to about seven this evening I was in a state of wonder that I don’t remember experiencing since childhood. Everything and everyone was not only beautiful but captivating, exciting, and full of promise. It began subtly and grew in power as evening approached. There was in the background a little voice complaining that I had spent sixty years or so in any other state of being when I could have been living so richly, but the voice never gained power, the reality of the present was so strong. Then suddenly I became physically tired and the wonder slipped away. But not for long, I am sure of that.

Wednesday, April 27

No wonder. The right leg is much better but it hurts and wears out after one and a half laps on the sagrato. Not a bad day, all in all, but I’ll be happy when the leg is healed. We saw Leonardo, my doctor, on the street and he took a report. He said not to worry.

Thursday, April 28

A wonder-filled morning. The right leg continues to feel better, but very slowly. Its stiffness has set my walking back in quality by at least two weeks.

Yesterday Roman introduced me to a beautiful young woman from Ukraine. Roman’s wife, Maria is helping her find work. We met her, her mother, and grandmother again this morning and Roman spent a good half hour getting them free admission to the Duomo.

Another family just arrived from Ukraine, six people in all. It is the mother’s birthday, so Roman went off at one to gather the necessities for a party at his house, which will include guiding them there by foot because they know neither the town nor the language.

There is nothing more important in life than taking care of one another. 

Friday, April 29

The right leg is stronger today, but hurts to the touch almost everywhere from ankle to thigh. Yet, walking has improved even as we are taking a cautious approach so not to trigger anything worse.

As an aside, I’ve forgotten to mention that for the past three to four weeks my left ankle has been sore (at a location not previously felt); not so much as to impede movement, but painful enough to draw attention. Yesterday that pain resolved and continues to be absent today.

As an additional aside, I’ve had a periodic cough for about two weeks. If I am laying on my back when I start coughing, the fit is followed by full body shakes for about thirty seconds. Regardless of position, the fit will often give rise to full body pins and needles; they generally last for a minute or two.

And probably the last aside for today, I’ve had a persistent pain in my right shoulder for at least a year which has been gradually going away for the past month or two. It would manifest when I lifted my arm, but never so strongly as to prevent movement.

These, according to Recovering from Parkinson’s (chapter 23) are likely old injuries that were suppressed rather than healed due to my being in Pause mode (other than the cough, perhaps). Now, off Pause as a regular mode for almost a year, they are healing in a staggered fashion.

Katrin my physiotherapist gave me a treatment for the leg this afternoon. She put me into stretches I’ve wanted for as long as I can remember, but couldn’t do myself. Time (and further sessions with Katrin) will unfold that mystery.

Saturday, April 30

Walking is subtly improved but still very difficult. 

The town is bursting with spring.

Katrin instructed Roman to put cold compresses on my right calf. It qualifies as torture to me, the muscle at the top of the thigh tenses in a way that shadows pain for hours afterwards. 

Timing and ice torture left no time for an evening walk. I was on the edge of throwing a tantrum all evening, and would have had I known how without hurting Roman’s feelings.

As if to rub salt in my own wounds, I chose this evening to scan The Playwright’s Center for submission opportunities. Were I a lesbian playwright living in Kansas with two children between the ages of 12 and 16, and wanted to submit a play of 20 to 45 minutes (with ten percent of the dialogue in a non-European language) I would have had several opportunities to choose from. As I am a boring, old, white guy with full length, untested scripts to peddle, I just got depressed.

Sunday, May 1

A similar day to yesterday but without wanting to throw a tantrum or be depressed. Everything else was a tick up on a positive scale; nothing dramatic but plenty that is encouraging.

Monday, May 2

It began when I woke at 05:30 and went into the kitchen. While not “recovered” my walk was secure and fluid. “It’s gonna be a good day,” I said to myself. My hands and arms were loose, my voice was strong, the right leg was much improved. Then little by little it all fell apart. By evening I was a coughing, spasming mess. Then thanks to a phone appointment with an intuitive therapist in Oregon, it all turned around, and by bedtime I felt much improved. I slept extremely well.