Category: Recovery

Tuesday, October 5

It threatened rain this morning, so instead of walking the Duomo sagrato we walked Via delle Costituente, a street somewhat longer than the sagrato and with a slight incline. I’ve always been aware of Orvieto’s being a hilly town, but with my ambulatory problems it has become mountainous. However, I’m pleased to report that even going uphill there was very little scraping and shuffling.  Bravi, feet and legs! 

Getting up from sitting is, I am finding out, not absolutely even. For at least twenty minutes after a nap, movement is compromised, and standing from a sitting position goes back to needing help from arms. And every now and then habit takes over and I grunt and strain and use arm power. But if memory serves, I was already having difficulty with this three years ago while working on the first draft of Colloquia, so it’s not just muscle recovery, there is a brain component, as well. Were it just atrophied muscle, the problem would have begun with the first signs of injury to the Achilles tendon in June of last year.  Bravo, brain!

The evening walk found us back on the sagrato. The piazza was almost empty, twilight was happening way too early for my tastes, and the air was autumn fresh with a hint of moisture. I walked pretty well.

Wednesday, October 6

It’s rainy and chilly today, so I ordered a caffe latte chiaro instead of a cappuccino chiaro. Chiaro but not chiaroenough. Now I’m suffering the after effects of too much caffeine (I’m sensitive). But we walked Via delle Costituente again today with similar results as yesterday. And beyond the caffeine poisoning, I generally feel lighter and more agile, though I doubt it’s apparent to anyone but me… and maybe Roman.

One of the most common symptoms of PD is drool; an excess of saliva, especially at night. As I understand it, it’s not that more saliva is being produced, rather it’s that the automatic swallowing mechanism is short circuited along with a lot of other automatic muscle functions (in that sense, shuffling is like drooling with your legs) so the saliva collects and overflows onto your pillow. There was a period of maybe a bit more than a week last spring when the drooling stopped. It was heralded as a powerful sign of recovery, only to return in all its swampy, puddly glory, so I hesitate to declare myself drool-free. Let’s just say that the symptom is once again in suspension and has been for more than a week. Here’s to hope!

Another common symptom of PD is dyskinesia, or unwanted movement. This often manifests as an arm tremor (internal, external, or both) or as restless leg syndrome. A different variety of dyskinesia is also a recovery symptom, a variety that can be willfully stopped and is often rather pleasant. Again, I don’t know this for sure, but after I cough (especially if I cough lying down) both my arms tremble (as distinct from “tremor”) and can go on that way for quite awhile until I stop them. Which I can. The tremor does not respond in that way. So that may be another sign of recovery.

I include these “signs” for those of you who are, or connected to, fellow travelers as a way of sharing. 

Thursday, October 7

We are finally getting much needed rain, and that puts my walks into a large, private parking garage located across the alley in the neighboring palazzo. Our morning schedule was a bit different, too, to allow Roman to shop without getting drenched, and I took an early nap of about a half hour (to make up having not fallen asleep until four) so the walk was affected as the brain and muscles were not in great communication for the first three-quarters of it. But we got the lay of the land, and feel more prepared for fall weather. Otherwise, I felt rather spy this morning. Even during the walk, turning at the ends of a lap was so much easier than usual, as is getting into my office chair. The little things add up!

Another symptom of PD that has bothered me for at least three years is what I called “walking in orbit” – I always felt like I was falling forward and catching myself just in time. This would sometimes lead to losing control of speed. This would happen whether I walked alone or held a friend’s arm, indoors or out. I just walked the hall at home to stir the blood and realized that I have not experienced orbit for at least two months. The little things.

Evening walk on Via delle Costituente was flawless!

Friday, October 8

The morning walk (on Costituente) and the wheelchair trips to and from, were, in total, absolutely wonderful. The walk itself took some warming up, but by the third lap it was pretty regular. Then after lunch I took a short nap and woke shaky and physically awkward, right down to typing. This seems often to be the case, and more so when the nap is short rather than long. I followed what my body wanted and paced the hall for twenty minutes, this for the first time before I fell on July 20. There was no weaving or staggering, nor any sort of loss of control, all of which were present before I fell. The form is not as good as when I walk outdoors, but pacing makes me feel much more solid.

Pins and needles (a recovery symptom) continues to be a daily occurrence. 

I had a session with Katrin, physiotherapist, late afternoon. It seemed pleasant and benign but she warned that there may be kick back. There was. During the evening, all movement became harder, and…

Saturday, October 9

…this morning even more so. We walked the Duomo sagrato, and muscles and brain warmed up after four laps, but everything required more effort and afterwards I was so tired as to be insensible. Katrin also said things would get better after they get worse. I can only hope!

A post lunch nap (profoundly deep) left me rested but with the typically degraded brain to muscle connections. Pacing the hall for thirty minutes helped. I’m not quite where I was yesterday, but much closer than before.

Call me il gatto. The evening walk on Via delle Costituente was as silent as a cat’s. I still have a ways to go before I can call my walk graceful, but posture was strong without reminders from Roman, and we dodged lots of people both directions, which would usually scramble my concentration, without negative effect. Meow, purrrr.

Sunday, October 10

This morning’s walk was not perfect, but relatively solid. I slept little last night, so was very tired by the time we returned home. (Today, Natalia joined Roman to learn the care giving routine so that he can take some much deserved time off.) An hour’s nap helped, and I wasn’t quite as stunned by it as I usually am. On the other hand, I slept forty minutes after lunch and woke totally stunned.

Evening walk, meow, purr, only the encounters with a large group of tourists who, in both directions, were disinclined to make room for us to pass interrupted otherwise perfect laps.

Monday, October 11

Monday was illuminating and complicated – and long – so I will put it up later as its own file.

Tuesday, September 27

Left ankle is still sore, the pain continues to move around, but is not as sharp as it was. Met my ex-neighbor, Giancarlo at Palace Caffe afterwards, and even though I was feeling pretty symptomatic and off-kilter from not really walking, we had a nice conversation. Rested briefly before lunch, worked at the computer after, then napped for about 40 minutes and woke feeling more symptomatic than I’ve felt in weeks. And atypically so. Typing very erratic, overall discomfort with muscles; not tight really, but “on alert”. Movement not slow, but “confused”. Tremor barely reads, if at all, but really shaky after my nap. Very strange. Difficult to get out of a chair. Voice is only half present. Generally a feeling of wanting to escape my body. 

Late afternoon found me feeling much better with really intense pins and needles in arms and head. Evening walk was also distorted by pain in left foot and ankle, but we managed six laps – very slow, mostly shuffling. As weird as I felt this afternoon, I feel good tonight; the body and brain are doing their thing.

Wednesday, September 29

Early walk today with what was at first a very sore left ankle. After a few minutes, Valerie passed by, and with the help of her company we managed to do eight laps with occasional pain and very little “perfect feet”, but at least there was movement. It honestly felt that without the ankle pain it would have been an exceptionally good walk this morning. 

Typing is smooth. Took a forty-five minute nap at 15:30, and woke barely able to walk. 

Shiatsu this afternoon was thorough and, as ever, powerful. Michele did some very specific work on the left foot, and it paid off later while walking. He said that the legs have grown stronger and that the upper body is good and loose. 

The major shift for me is that I no longer expect Michele to “fix” me, rather that shiatsu is a part of the healing process. That allows me to let go and enjoy whatever comes along, although I admit to still being disappointed when he enters the final stretch. I always want a session to last longer. 

The evening walk was damn good given that for the first two laps the ankle pain was pretty bad, but we ended up doing nine.

Thursday, September 30

Good walk this morning, very little ankle pain, very little shuffling, only one cat (black, with fur like velvet). Otherwise, feeling moderately symptomatic, but part of that is due to a dislodged contact lens at 02:30, after which I only managed to sleep two, then another three, hours. 

I read more of Recovering from Parkinson’s, sections on stimulating the striatum, a part of the brain associated with how dopamine is distributed, among other things. It refers to research by Andrew Newberg and Mark Waldman into how brain health is affected by meditation in all of its expressions, from prayer to mantra repetition. I was inspired to chant, but when I tried the cough would come back, so I repeated silently along with a 40-minute recording, followed by 22 minutes of silent repetition on my own. I came out of it with symptoms greatly reduced. 

My mornings and evenings are highly structured around walks and meals, but afternoons were spent sleeping until a few weeks ago when sleep patterns shifted again from a plentitude to a dearth. Since then, the afternoons have become five hours to be gotten through. So, now I have a pattern to follow; short nap, mantra repetition, instructional reading, Italian study, some writing. I’ve been deprived of much of my accustomed independence for most of the last year and a half, which is ideal for establishing healthy new patterns in how I use my time.

Friday, October 1

The morning walk was accompanied by live music on a grand piano set up in Piazza del Duomo. I treated myself to a cappuccino chiaro on the way to, and a spremuta on the way back. I saw friends in both directions that I’ve not seen in months or years, most of whom live in Orvieto. 

And somewhere in the midst of all that, was a period of easy communication of the heart – the real thing – something else not experienced in years and an essential aspect of the recovery from Parkinson’s process. 

The walk itself was good. Lunch followed, and a half hour nap followed lunch. I woke feeling strong and solid, but barely able to move, and with persistently itchy feet. Chanting restored some movement. Pins and needles are still periodic, ankle and shoulder pain is almost completely gone. The dull ache in the lower back persists, but is a universally experienced recovery symptom, so that’s a good thing. 

By the way, the red fungus on the feet (a recovery symptom, too) has cleared up, and my toenails (which for the past year, at least, resembled rotting parchment) are growing back with a healthy clarity. 

The evening walk was the best, so far; upper body starting to swing and sway, feet taking full articulated steps, posture erect most of the time. And there was a sizable wedding party in the piazza that serendipitously broke into applause as we finished laps. Fun.

Saturday, October 2

The pianist was in Piazza del Duomo again this morning, and again the walk was above average; though not quite as encouraging as the one last evening. I napped for about ten minutes before lunch and for twenty, after. Both were sound and felt like I’d slept at least an hour. 

Something I’ve been having difficulty with is getting up from a sitting position. The last few days I’ve been employing visualization just before I have to rise, and astonishingly, even imagining the action once makes it not only possible, but often makes it easy. When I forget, I go right back to struggling. I realize that that sort of ongoing visualization is what I often do during walking sessions, imagining each step before I take it helps it be silent and shuffle-free; trains the brain. 

Psychologically, the big retraining challenge is unworthiness. I’ve been aware for many years that in my adult life there was almost nothing I wanted that wasn’t offered me, and that my reflexive response is to hold it at arm’s length or not to notice it’s being offered all because I feel less than worthy to receive it. Or, a variation, that I see fulfillment as my taking advantage. Or, another variation, that I haven’t earned it; fulfillment comes too easily. This is true of everything, and is huge obstacle to accepting recovery. 

Sunday, October 3

It’s the third or forth day that legs, especially, have been limp (a recovery symptom) and I forget to factor that in to the quality assessments of our walks. Doing that takes them from just okay to quite successful. 

This morning the weather was stunningly lovely, the streets were active with guests dressed in beautiful colors, and the pianist was in Piazza del Duomo for the third day. We now exchange waves with both him and his wife (when his hands are not otherwise occupied). 

We stopped for coffee on the way with Roy and Deb (and I discovered that Diner is a Polish surname… who knew?) and Roman threaded his way skillfully through the crowds. 

It was a beautiful morning walk. So was the evening passeggiata. I discovered again how normal people throw their feet up and forward to introduce each step (whereas people like me have formed a habit of striking the ground heel first) and making that adjustment makes all the difference. Learning to sustain it is the next adventure.

Monday, October 4

A perfectly (new) normal morning walk, but without tourists, cats, or soundtrack it seemed rather dull. But the most notable development was that today for the first time in at least a year and a quarter I am able to lift myself from a sitting position using only my legs. Look, Ma, no hands! At the same time I feel oddly limp (a recovery symptom), but that makes the muscular recovery all the more remarkable. 

On the other end of the scale, my voice is very hoarse today, distractingly so. I am told that it will heal in its own time, not to push it or view it in a negative light. The strong legs afford me a lift in more ways than one. 

Also, as sometimes happens, in spite of feeling weird after a nap today, there was a period of absolute stillness, no tremor, internal or external. At times like that, I feel as if a full recovery is just a mental leap away, but I can’t yet figure out how to propel one. Perhaps my legs will provide a clue.

Several periods of intense pins and needles – mostly arms and face – happened this evening.

Tuesday, September 21

Both walks were on par with what has become the expected, the evening walk was a little bit easier. In between passeggiate I experienced the same discomfort I’ve been having for the past few days; all my muscles want to move and to stretch. I’ve been trying to do armchair yoga, as should I get down on the mat I’ll be there until someone comes along to pick me up, and it helps. But after an hour or so of sitting (watching a movie, for instance) I want to do jumping jacks – and I can’t. I’m trying to take this as a positive sign that my brain/muscle connections are waking up, but sometimes the urge to move is so intense I have to push pause and walk in circles. The same phenomenon keeps me awake at night. I suspect that babies go through this (my suspicions are fueled by Janice’s observations) and between the way Roman takes care of me and the fact that I have to learn basic physical skills like walking, I do feel like an infant all over again. It is rather wonderful when I can surrender to it, and it allows me to work through childhood annoyances of being fussed over. With apologies to my dear, sweet mother, I now understand why she fussed, why I rebelled, and now have a chance to re-accept that fussing as an expression of love.

Wednesday, September 22

I felt unusually agile and quick from rising to leaving the apartment. Sometime between leaving and walking things went south. We took a gift of wine to my former neighbor Giancarlo, and I found the language issues to be stressful, in part because I got parked in the sun and at a right angle to Giancarlo, so I couldn’t see him directly, and there were masks. Can such a simple thing create fatigue and physical/neural change? I don’t know, but I think that self-consciousness can. The first half of morning walk was extremely difficult, the second half was more like the walk I’ve come to expect; largely perfect feet and not over much effort. But I was pretty tired by the time I met Valerie for lunch. Evening walk was perfect for the first quarter lap, then I quickly wore out and struggled through until lap five when the gait began to smooth, again. But I didn’t allow frustration to get the better of me, and kept in mind that I deserve to recover… and will. We stopped in Piazza Sant’Andrea and watched a delicate, absolutely gorgeous, sunset; rich blue sky with wispy orange clouds.

Thursday, September 23

The real story these days is to not allow variation and expectation to spawn frustration. Not with sleeping, nor with speaking, and especially not with walking. The morning walk was mostly smooth. It got a bit sloppy in the turns between laps because there were seven or eight cats in the piazza and Roman and I got a bit distracted trading favorite cat stories, but it was good being able to walk and talk together and to do both acceptably well. In other news, my right shoulder hurts a lot. The evening walk was distracted until the sixth lap, then everything was perfect feet through the end of lap eight. In yet other news, for the past four or five days I’ve experienced periods of intense pins and needles in various areas of my body (sometimes, almost everywhere). I mention this because Recovery from Parkinson’s suggests that pins and needles in this repeated fashion is a sign of the nervous system waking up, or correcting itself. These last few months have convinced me that the body is always striving for health and balance. How we treat ourselves moment to moment determines how successful the body is in its healing. I began this adventure with PD with a persistent image of its being like an old, rotting coat, that once acknowledged for what it is can be removed and discarded. I still feel that way. Medical science, so effective for so many ailments and conditions, I think is wrong on this one. I will persist in removing the rot unless I am convinced otherwise.

Friday, September 24

Morning walk was mediocre, about the same indoors and out as yesterday evening. Was very tired by the time I got home, napped briefly, had lunch, napped another half hour or so. It would be an overstatement to say I was therefore refreshed, but it took away the desperate fatigue. Did paperwork during the afternoon quite comfortably, a remarkable change. Katrin did body work late afternoon, said muscles were loose, no significant sign of rigidity. Evening walk was almost flawless, and I was not at all tired afterwards. The instant I came indoors, gait became shuffling and cramped – something to do with being forced to take small steps. For the past few months, I’ve been looking back at my younger self (even just four or five years ago, but mostly further) and am astonished at how much anger I carried with me. How did I stand it? How did anyone stand me? I guess I didn’t display it much, so it rarely rose above annoyance or impatience, but it was there, and a lot. On a certain level, I’m amused. And better to be amused or I carry the anger into the future, only turned against myself.

Saturday, September 25

The morning walk was more or less like yesterday morning’s walk, not perfect but in the main pretty good. Then we went to the market, dodged large groups of tourists, and by Piazza Repubblica I was tired. I napped for about a half hour before lunch, and tried to nap again afterwards but RLS returned about a week ago, and today it kept me awake. Evening walk was about the same as morning, periods of perfect feet, some shuffling in between, but good posture throughout. By the way, the pain in my right shoulder has subsided, but pins and needles rage on, several times a day.

Sunday, September 26

Fifty/fifty walk this morning. Both movement and voice were strong until we left the house, then each encounter with others became more of a challenge and a drain on energy. By the time we returned home, I was exhausted. I slept for a half hour before lunch, together they had a restorative effect. I spent most of the afternoon re-reading sections of Recovery from Parkinson’s. For awhile, I wished I could travel to Santa Cruz for a month or two of personal sessions with Janice; I thought it might resolve a few basic questions with my relationship to the process. Then this evening, a distant fellow traveler reminded me (or called my attention to) four exercises that help speed recovery, just what I had been looking for – it was there all along and hiding in plain sight on page 131. Perhaps my PD habituated brain had blocked them from memory. Regardless of how I missed them, I’m grateful for having found them. Now to practice them without falling asleep!

Monday, September 27

Around 04:30 after having slept well since midnight, I felt the need to move so got up to pace the bedroom for fifteen minutes. There are rugs and things to hold onto, so it is a safe environment to give my legs some exercise. Immediately upon standing there was a sharp pain on the inside of my left foot and ankle, this out of nowhere. I’d not slept on it wrong, it was not a cramp, and it didn’t really work its way free while walking. I was as gentle with it as I could be and kept pacing. When I returned to bed, the pain went away and I slept another three hours. Upon rising this morning, the pain reasserted itself, only it had moved to the outside of the left ankle. By the time we went out for a walk, the pain had moved to the top of the foot and the front of the ankle. It severely inhibited my walking, so we called it quits after three laps (with a rest between each). As I’ve read, recovery can include deferred healing, so this pain might be an unresolved injury from fifty years ago when I was hit by a car and my left foot was in fact injured. Once channel energy is flowing again, the old injury finishes healing and this often means that its symptoms reappear, even after decades. The next few days will tell the tale. Late afternoon saw a return of limpness (a recovery symptom) and while the ankle still hurts, the nature of the pain interferes less with walking, which is a good thing because mixing the two could be problematical.

Tuesday, September 14

Usual night with a break between 02:00 & 04:30. Usual perky wake up. Usual difficulty walking right out of bed. Morning walk included a couple of rather lengthy episodes of perfect feet surrounded by scuffing at best and rampant shuffling at worse. No voice in the morning. Several stops to chat on the way back, which was tiring. Exhausted by the time we got home, but only needed a short nap (partly due to RLS or whatever). Tendon in shoulder pretty sore, makes working at computer difficult. Voice better in the afternoon, but still very hoarse. Evening walk had flashes of perfect feet, then on the final lap (and almost all of it) the hips and shoulders became involved. It was so energizing that I wasn’t exhausted like I usually am after a walk. I even enjoyed sitting in front of Sant’Andrea and watching a large family slowly peel off on their separate ways.

Wednesday, September 15

Didn’t sleep until 03:00, not because of mental or emotional activity I just wasn’t tired, then only until 05:30, tried the recliner, no luck, back to bed at 06:00, slept until 07:30 when I apparently set off the emergency bracelet. Feel terrible about that, have to adjust my phone so no one else is bothered by my mishaps. Walking pre-walk feels better than usual, as does comfort in general. The morning walk was mostly near-perfect feet and significant portions were perfect feet, though having set a new standard I am more particular about what is perfect. There was no fatigue afterwards, and my voice was relatively strong. Around lunch I began to wear out, but only napped about forty minutes and was satisfied. Wonderful shiatsu early evening, powerful as ever. Evening walk was perfect feet right out of the gate, and although I couldn’t sustain it for the full seven laps, it was there or came very close most of the time. I’m learning how to walk! I’m so happy! It’s just a beginning, but it’s like having my life back, only better.

Thursday, September 16

Both walks, perfect or near-perfect feet for a combined total of 1.5 kilometers. Wasn’t tired at all, all day long. Went to Buongustaio with Susan and Maria for lunch, excellent food, wonderful company, beautiful view of Orvieto. Still difficult to move delicately, like getting in and out of chairs and cars, or cutting sausage, but all in all, a great day.

Friday, September 17

Pre-morning walk I was moving around the apartment with increased agility and courage so I had high hopes for the actual walk. They were disappointed, but in reality the walk was not bad; about 10 percent shuffling, twenty percent perfect feet, and the rest some version of near-perfect. I also expected to sleep really well having not napped at all on Thursday, and that was also disappointed; I was not at all sleepy until 04:00 then I slept like a stone until almost 09:00. I have no idea why. Evening walk, according to Roman, was 90 percent perfect. I would rate it a bit better than the morning, but I’m becoming particular. We did 16 laps (1.6 kilometers) today. Otherwise, creeping and slow around the house, typing is cautious but accurate, and I’m headed for bed at 23:30.

Saturday, September 18

Morning walk was on par with yesterday’s walk with the exception of the turns which were awkward and shuffling. However, I was able to maintain good posture almost all the time, and that reflected hints of upper body engagement with shoulder and arm movement; very subtle but there. Was tired but not exhausted afterwards and napped for a few minutes before and an hour after lunch. Both naps left me wobbly and shuffling, a complete antithesis of what I experienced on the walks. Early to bed last night didn’t work. I didn’t find comfortable positions until 04:00, then slept like a stone again until 08:30. My brain seems to be set for 04:00, so I’ll try to reset to midnight using melatonin. 

Sunday, September 19

Slept from about 02:30 to 06:00 and that’s about it. Muscles were tight, and could not find comfortable positions. Morning walk about the same as yesterday except that there was occasional arm swinging that happened and more visibly than before. Upper body a bit stiff in gesture and positions at rest. Voice is not terrible, but still hoarse and broken from time to time. Envisioning good movement I still find difficult. Friend suggests giving the energy flowing into the medulla oblongata more attention, that recovery will be speeded up if I can get it back to pre-hospital levels. All such interior work has been extremely difficult after my hospital stay. The evening walk was taken at Piazza Gonzago, near my house in case of rain. It’s a macadamized parking lot about twice as long as the Duomo porch. Results were mixed, but I did manage to avoid bad shuffling. We did three laps, took a brief rest and did one more. Right after the rest I walked so normally for about ten meters that I let go of Roman’s arm. It was great. I also discovered, but was unable to develop, that we throw our feet out, toes first, with every step, ever so slightly.

Monday, September 20

Had this morning’s walk happened a week ago, I’d have been over the moon, but in context of the past few days, it was pretty normal. Some periods of perfect feet, minimal scuffling, involvement of arms, shoulders, and torso, occasionally a tiny bit of bounce. On the other hand, I went to bed at midnight, slept comfortably for about an hour, then could not reproduce any of the agreeable positions I’d just enjoyed. Finally slept at 03:00, woke again at six, slept again at seven. Not terrible when I look back from here, but frustrating at the time. Overall, I’ve felt good today, if a little sleepy. Evening walk was, according to Roman, 99.9% pure; almost no shuffling, good posture. The arms started to swing on their own occasionally, there was a hint of upper body involvement, still holding Roman’s arm but only for security.

Tuesday, September 7

Slept well, woke feeling good. That was shattered immediately when I had to move. Movement was relatively fluid, but super slow. The morning walk was a marathon. I have no voice so the encounters I had with friends were difficult and exhausting. As the day passes, movement becomes more awkward but no less slow. Typing is hard enough to rule out writing. This may be an afternoon for podcasts and reading. It seems that once a week I am scheduled for a Parkinsonian day. Once a week ain’t so bad, if it stays that way. Friend says it will and that movement and imagining fluid movement will become easier. Here’s hoping. Found during the evening walk that longer steps are less shuffling; now to communicate that to Roman.

Wednesday, September 8

Slept well until 04:30, then hardly at all. Terrible typing day, so far. Longer steps are good for a closer to silent walk, also for stamina. Tried imagining better movement, some slight success before I fell asleep, uncomfortable chair notwithstanding. Evening walk was a bit tired. My voice is still hoarse, so I avoid conversation. Fell asleep easily enough, but ran out of dream space around three, and am unable to find comfy positions. May try going under covers, it may be time for that change.

Thursday, September 9

Tried going under covers, but couldn’t manage. Did listen to Sulic’s performance of Vivaldi’s Four Seasons while exercising, and confronted how out of order are my legs. I continue to try to imagine better brain-to-muscle connectivity, and continue to wonder if any of it is being done correctly. But even though movement is slow and limited, there are subtle improvements, too small (or specific) to describe, that I notice all the time. I guess it comes down to which wolf will I feed. I just reread a few of the chapters on recovery symptoms in Recovering from Parkinsons, and the one on limpness made me laugh, it described my experience so exactly. I’d read it before, but it meant more, this time. I realized once again that I’ve been recovering from drug (levodopa) dependance, broken ribs, two-weeks in bed, foot surgery, sore and swollen ankles, a cough and fever, and Parkinsons all at once, and things are bound to get confused. Now my only question is how much longer have I to go with this limpness thing, and there is no answer for that.

Friday, September 10

Slept well until 04:30, had a hard time being comfy until about 06:00, then slept well again until 08:00. Morning walk included several periods of walking absolutely normally, and it was nothing like I remember it being. No wonder I was having such a hard time imagining it! And it has been a very long time since I’ve experienced that kind of rhythmical, effortless walk. I hope this is the beginning of the brain’s reconnection process and continues. The same walk in the afternoon occurred for 40-50 meters at time, three or four times. It’s not something I can consciously provoke, in that way it’s like slipping into meditation – you know it when you get there, and getting there is less a matter of doing than allowing. Upper body was robotic and stiff all day.

Saturday, September 11

Slept until 03:00 then again from 06:00 – 08:30. Upper body feels a lot looser. Lower body is even limper than before. This showed up in the morning walk which was a shambles. There were distractions; a monologue from Roman, a load-in for some event that needs lots of special lighting and electronics, large groups of tourists. I never got the ultra-normal stride that happened yesterday, not even close, but I described what happened yesterday to Roman, and he affirmed it, he had noticed. That made me feel better, the walk was real. Legs remain super limp into the afternoon. Evening walk saw several periods of new normality, again; very encouraging.

Sunday, September 12

Slept until 04:00 then not much at all. Left foot became very active towards dawn, either RLS or recovery dyskinesia. Morning walk included periods of “perfect feet” as Roman put it. I don’t know if or how I provoke or encourage that, or if it simply happens. There seems to be a kind of effort involved. Whatever it is and however it works, perfect feet happened again on the evening walk.

Monday, September 13

Slept six and a half of eight hours, and soundly enough, but woke wanting more. Morning walk yielded only flashes of perfect feet – 10 to 20 seconds at a time – otherwise was exhausted and exhausting. I fell asleep at least twice on the way home, and napped immediately upon returning, but the right foot was active so a post-lunch nap was short and not particularly satisfying. Upper body feels, for the most part, loose and fluid. Evening walk was a catastrophe. Could not rise above really leaden shuffling. I finally got so frustrated that I started to stomp, and once that movement was relaxed it came the closest to perfect feet. Came close, but wasn’t really it. Turns were also shambolic. I otherwise feel pretty good today. Two forward and one back, I guess.

Wednesday, September 1

Missed entry. If memory serves, it was an unremarkable day except perhaps that I was PD symptomatic and coughing all day.

Thursday, September 2

PD symptoms strong all day. Janice says it’s the usual two steps forward one back that occurs when the brain is trying to establish new patterns. But I rose in good spirits and feeling perky, and spent three afternoon hours working instead of sleeping. I also started with the inhaler which had an immediate effect on reducing the cough – on de-triggering it from trying to speak. My voice feels weak and hoarse, but on the phone (my first conversation in a month) Joan reports it fine. Lots of right arm tremor when first waking (or coughing – and sometimes eating) and gait feels shuffling and heavy. By bedtime, things had calmed somewhat. Slept well after a little trouble.

Friday, September 3

Woke perky and happy. Walk was middling (hard to pick up my feet) but aspects of it were good – off and on. Voice felt very weak and muddled. Went to Blue Bar for snack, was quite tired by the time we returned home, slept briefly, ate a lot, napped for three hours – always with the intention of imagining a strong fluid walk, then after several minutes trying I’d fall asleep. Evening walk was as usual, but got me wondering if the bumpy ride in the wheelchair isn’t what wears me out, more than the walk itself. Voice very hoarse by evening, but cough faded to almost nothing.

Saturday, September 4

Slept until just before 05:00, then hit a wall, so transferred to the recliner where I can always sleep and, sure enough, was out for three hours within minutes. Morning walk was encouraging – balance exercise is easier to hold, was able to avoid shuffling for some of the time. Nothing miraculous, but progress. Wonderful lunch, then couple hours nap in spite of myself. Agility is not quick, but it’s not random or fumbling, either.

Sunday, September 5

Slept well, and woke at seven definitely done, so transferred to recliner and fell asleep while waiting for Roman. Both agility and stride feel closer to normal this morning. The strong PD symptoms of earlier in the week have abated. Morning walk was constructive; balance stronger, little or no ankle pain, was able to pick up my feet more often. Same with evening walk – six laps each time instead of the usual five. Cough is much better, I can speak without triggering a torrent, but my voice is very hoarse. I’m not sure if that is Parkinsonian or simply the result of a month’s coughing, but it is annoying. I’ve always been attached to a clear voice and good speech, and being without makes me feel feeble and stupid and inarticulate. I have noticed, however, that there is a part of me that is attached to feeling poorly, that proudly resists getting well or any suggestions that I might be.

Monday, September 6

Woke at around 05:30, got up, read messages, doodled around the web. Am hungry. My legs want to walk more than I am able to. Lying in the recliner yielded no sleep thanks to angry, jumpy feet. Massage calmed them. Morning walk was good, but fell way short of the Forrest Gump-loses-his-braces moment I keep expecting. Typing is slow and awkward. Not being able to write, I’m a bit bored. Hours Roman is here are kept busy washing, changing, eating, and walking, but the afternoons are long and I’m running out of movies and shows I really enjoy so evenings are becoming longer. Walking used to take up a few hours of that, and maybe will again, but in the meantime…

Tuesday, August 24

Second day on antibiotics and a small lessening of cough frequency. Also an improvement in energy, though not being able to leave the house (because of fever) puts a bit of a damper on that. Slept well, night and afternoon. Walking is a little smoother, tremor comes and goes. RLS is gone. Feet have shown no signs of swelling in more than a week. Left ear remains deaf. Being alone and idle no longer frightens me. Moving in bed is usually slow, but is relatively easy. Vague discomfort is no longer an issue, at any time. 

Wednesday, August 25

Cough less frequent but still strong and provoked by speech, and chewing. Meals are hell, between cough and volumes of clear nasal discharge. No fevers today, morning or evening which will clear for a walk in the morning. Tremor is most consistent while eating, or on my back trying to sleep. Also, a shaking is usual right after waking for a brief period, and usually in both arms. Sometimes while in bed, I try to recall symptoms and come up with walk, tremor, and nothing more. Other times I have to add agility issues and slowness. The variations are either normal with the disease, or normal with Recovery, I often don’t know which.

Thursday, August 26

Slept well in 2-3 hour chunks, and rose to pee more because I was awake than because I had to. Getting in and out of bed was in at least three of those times, fairly easy and fluid. I finally woke (and rose) just before Roman arrived, and was feeling pretty frisky. The experience of breakfast, which I forced myself through with all its drippy, messy, phlegm-filled glory wore me out. I relished the brief rest after leg massage, and the morning walk was a get there, do it, and get back kind of thing. I napped immediately, endured a snotty lunch, and napped more, being unable to face the small accounting I have to do. Emerged about 15:30 feeling better and frankly dreading the next meal. The work went well despite the awkwardness of a lap top in a bucket chair from Ikea, and typing was smooth throughout – given the chair, etc. Evening walk was closest to normal than it has been for months, even the three steps in the building’s front hall.

Friday, August 27

Slept in a five and three hour chuck, with a middling need to pee at 05:00. Felt more agile than usual all morning until Roman left me wondering after foot rub when he went down for filing for state aid (for me), as I didn’t quite catch the schedule. That put me into extended rest mode without really wanting or intending it. Then followed a cleanup and treatment from Jana which always put me into a blissful state. After lunch I took a nap (last thing I really needed), and rose from that slower and less nimble than I was earlier. Perhaps it’s time to get the study functioning again. Cough is less severe and less often. Everything else seems to be recovering, but my talent for sleep is supreme.

Saturday, August 28

Slept solid from midnight to well after 05:00! Then because I misunderstood that Roman was beginning rising ceremonies at 06:30, I transferred to the recliner to wait. Once again fooled by the sei/sette similarity. Roy took us to the doctor (ENT) who promptly declared my ears full of wax, cleaned them, and restored my hearing. What a joy! But the cough was bad all night and morning, so by the time we returned home, I was beat. Traditional mucal flood after lunch, napped from 13 to 15, woke less agile than I was before the nap, and more eager to move. But the wobblies kept me from indulging in other than a nap. I think I must set up the desk again, or risk atrophy in legs and arms. And brain! I cannot keep on sleeping this much!

Sunday, August 29

Another solid night’s sleep. Felt chipper and clear this morning, but the walk wore me out. I slept a half hour before and an hour after lunch, and ended up with a pretty bad typing day (improving). I miss writing, I miss not coughing, I miss walking. I miss projects and having the capacity to do them. Evening walk, I realized I’ve been walking on my left foot, all the focus there, on my “naughty” left foot, my right foot a well-behaved ghost. Also had the strong intuition that I’m blocking the brain’s tendency to walk, automatically – that I’m still using override to accomplish what the brain is ready to do on its own. I’m not sure how to address that, but it seems significant, if true.

Monday, August 30

Horrible experience with AUSL specialist this morning. Slept two hours after lunch. Bruce helped me set up the studio again. Feeling slow, but steady. 

There is no need to burden you with every ripple and current of these endless days, so this is more of a newsletter. If you want the diary format, that’s here, too.

Around August 7, I developed a cough that is provoked by any sudden intake of breath, like speaking for annoying example. On August 10 I woke up with normal hearing in my left ear (normal being less than perfect but workable) and within a few minutes all the hearing left that ear. Because of the timing (that it seemed to have to do with inserting my hearing aide) II thought it was earwax, but when the doctor did what seemed to me like a very half-hearted attempt at cleaning them and with no improvement, he concluded it was blocked eustachian tubes and began treatment for that. In the meantime, the cough got worse, and occasional fevers set in, so he tested me for Covid. The results were negative, so he put me on a short course of antibiotics and threw in a few dietary restrictions – lots of carbs, reduced intake of fluids – for good measure. I’m feeling a bit better today, but I still can’t really talk and the hearing is unchanged.

What has been most annoying through all this is that doctor and caregiver don’t seem to understand that wearing my aides is not going to make a difference. There is a little fanfare that plays when the aides turn on. I can hear the right one, but nothing at all for the left.

“I could hear it clear over here!” shouted my heroic caregiver Roman. “How come you can’t?”

Because the hearing in that ear is gone.

“The aide needs adjusting to your new levels, that’s all!”

First of all, why are there new levels to begin with? Second, the new levels are at zero, there’s no room for adjustment.

All this in Roman’s Ukrainian influenced Italian.

My doctor who speaks good English got me an appointment with a private specialist for Saturday, one who also speaks English, so I hope to break the language barrier then. I’m still not convinced it isn’t wax, but try to explain to the pharmacist why you want a removal kit with hydrogen peroxide and see how far you get. Worse, try to explain what you want to your Ukrainian caregiver who asks the pharmacist. It’s like a game of telephone.

A similar thing happened 18 years ago. I went to doctors and specialists, who all told me it was a freak but permanent hearing loss. So after a few weeks I went to Mark Seem, my acupuncturist is New York, he treated the gall bladder channel, and the hearing was restored by the time I left his office. An acupuncturist here tried the same yesterday (he didn’t feel quite as dynamic or enthused as Mark) with no result.

Anyway, Recovery has been on autopilot. I’ve been able to do almost none of the inner work. The cough wears me out, and the only position I can escape it in is flat out on a recliner, in which I instantly fall asleep. Symptoms are all over the place. Sometimes I can barely walk, other times (like today so far) I can walk pretty well. The tremor comes and goes throughout the day and night. I feel like I want to move more, but when I try to, nothing happens. I have to be careful not to slip into I just want to die mode.

Plus, my phone now shows date information in Chinese, the emergency bracelet I signed up for turns out to be a clunky and unwearable necklace, and Netflix won’t find movies I know are on it when I search (some I’ve seen listed minutes before). Very Kafkaesque.

Janice already said it with her comment about an emotional jolt can scramble the program, and that feels where things are at. Too much going on to untangle. Just a no-progress report.

Tuesday, August 10

Today was air conditioner day, so we were up at six so that Roman could make me and the apartment presentable by the time the crew arrived at 08:30. There had been quite a bit of confusion as to where the unit could be installed, and it was finally back to the first conclusion; the bedroom in the corner to the right of my bed. I was not happy with this. It meant having cold air blow on me while sleeping, and given the bedroom is at the extreme western end of the apartment, nothing else would ever be cool. Roman and I discussed this last night, and came up with what seemed like a reasonable alternative, which he proposed to the crew as soon as they arrived. There ensued a lot of shouting. Roman popped into the salotto where I was waiting to update me; it would mean a longer run of tubing.

“I’ll pay for it!”

“And instead of one side of the hall, they’ll install it over the bathroom door at the end of the all, so they can run the condensate tube into the shower.”

“At least it’s not in my bedroom.”

The shouting calmed, and we went for our morning walk.

Later, when I checked my phone, Janice at Parkinson’s Recovery had answered my weekly report, one I thought was rather banal.

“This is profound,” she said, and went on to describe recovery not as something I was still going through but as something I’d done. I was feeling strong and in balance, and ready to believe it; we had walked 1.4 kilometers today. I became aware that each step has its origins in the thigh and buttocks, and that awareness helped to made the gait smoother. Recovery made sense.

But my feet still have a tendency to swell. When I mentioned this to my doctor, Leonardo, this afternoon, he suggested compression socks. The calves had become weak in the hospital and their activity is essential in drawing blood back up from the feet. He also suggested trying a medication mornings to increase urine production.

Roman understood about the socks but expressed his disappointment that he would have to suspend leg massages.

Wednesday, August 11

While putting my hearing aids in this morning, I seem to have pushed a plug of earwax deep into the left ear canal, and am now temporarily deaf. I wrote Leonardo. He told us what ear drops to buy, and promised an appointment on Friday for wax removal. I had already developed a cough that bothers when I try to speak, so now I am cut off from speech on both ends. Enforced silence. Appointments and phone calls were canceled, friends who plan to visit have been notified. 

I was able to walk almost as well as yesterday, but more effort was involved. I took a urinary production pill with breakfast, as instructed. The new air conditioner works well.

Thursday, August 12

When Leonardo suggested the pee pill be taken in the morning, it was so that it would have lost its potency by evening, so as not to add to how many times I have to… well, this deserves some explanation. I keep telling Roman that he doesn’t need to stay overnight anymore, but he insists that he does.

“Call me every time you need to pee. I don’t want to find you on the floor because you overreached for the papagallo. Each time.” That was yesterday evening, and I swore I would. But the pill didn’t lose its potency, as hoped. I called him a dozen times during the night, or at least that’s what it seemed like. This morning we were both of us ragged. 

“No more pill,” Roman said this morning. I agreed.

My morning walk was not nearly as fluid or strong, and we stepped back in distance as well. I slept all afternoon. My hearing had not improved. The PD shuffle was strong. I reported to Janice.

“Things like fluidity when walking will be affected by things like sleep and emotional state for some time to come. You don’t have a lot of reserves. You have the ability to be healthy now, but it will take time before you can smoothly get past rough spots such as no sleep.” Or like not being able to hear or speak, I may conjecture to add.

Friday, August 13

Walking this morning was extremely disappointing. Every attempt at keeping stride was met with left ankle pain. The pain itself is not unusual, but that it showed up on the first lap, was. Then we wheeled over to Leonardo where he flushed out my ears. No difference. 

“It’s not wax,” he said, half sighing. 

“Eustachian tubes?”

“Yes, it’s probably related to your cough and runny nose. There are sprays to help with this.”

An hour later, Jana my physiotherapist of the hour came on a house call. She worked on freeing my muscles. 

“You have your entire body protecting your ankle pain by turning in. We’ve got to open it up again.”

My friend Richard arrived from New York via Nice at almost midnight. He has worked as a caregiver so will be able to give Roman the weekend off. That makes us both very happy. I’m not sure how happy it makes Rich.

Walking was hard, due mostly to pain in the left ankle. Movement is generally slow, and the gradually increasing isolation from now not being able to hear or speak is depressing. Typing remains okay, but slow. But I am sleeping like a baby!

Saturday, August 14

Ears continue to be blocked, hearing is nil, the cough welcomes every word I even attempt to speak. Walking around the apartment is a joke, movement is slow. The right arm tremor is back after several months’ absence. Morning walk at the Duomo was difficult; any regularity of stride was soon met with left ankle pain.

I slept a lot in the recliner which provided relief from the cough, and the usual products of oversleep never made themselves evident. Rich and I lunched at a pizzeria on Via Signorelli. The food was good, but (for me) a challenge to eat. I spent the day having to pee every fifteen minutes. Typing is middling. All in all, this is the most discouraging and uncomfortable day I have had in a long time. I feel bad being a burden on Richard’s Orvieto sojourn. He says he does’t mind. 

Then, the evening walk, which because of extreme heat was delayed until 10 pm, encountered mobs of people on the Duomo steps who were all out for the same reason, and was moved to Piazza Febe in front of San Francesco. It’s a dark, circular, freshly paved little piazza, perfect for walking at night. We did five laps without stopping and no ankle pain until the very end. Again, I slept like a baby.

Sunday, August 15 – Ferragosto

For the first time, I wasn’t looking forward to my morning walk. The pleasantness of last night’s walk was overshadowed by yesterday’s overall coloring of defeat.

We beat the really bad heat, but it was still hot. I was able to put in four laps before my ankle gave out, but the reason for the ankle was a sudden influx of people swarming the porch, my concentration went nuts and I stepped wrong. Nothing injurious, just uncomfortable.

The cough is looser today, the hearing a wee bit better, and except for this morning, I feel like moving (ill-advised in this weather, but a positive sign). 

I hit bottom again during the afternoon. The cough would only be still if I were flat out on the recliner. It reminded me too much of hospital. 

Rich and I went to Bottega Vera for a dinner platter, then we walked the Duomo, but my left ankle kept giving away to pain, especially, it seems when I get in “stride” all movements connected, no shuffling. “Hey, I can do this! Ouch!!!” Pretty much like that. I expect to sleep well. (I did.)

Monday, August 16

Roman was back for the morning session. Rich has been a great help, but it was also good to be in familiar hands. We did the morning walk only with the support of Roman’s arm, resting briefly after each lap. The stride is much easier to maintain without pushing a wheelchair, but also more tiring as different muscles are being used.

From there, the day was an emotional roller coaster.

Roman fixed Rich and I a wonderful Ukrainian meal that I could barely eat, due in part to a compromised appetite (heat, blahs) and in part to not wanting to have to blow my nose through the eating of it, as I do with every meal I have at home. Eating out with a drip free nose has already spoiled me. I kind of thought the air conditioning would help, but it hasn’t.

I took an unneeded nap after lunch, and woke soon to wait for Rich to come back and wheel me to the nearby playground which is a perfect spot for an afternoon walk. Waiting is not something that I can tolerate much of lately, though I have plenty of opportunity to practice. I am quickly approaching the sick of the sickroom stage. 

The other oddity… well for four days after hospital I could not produce a bowel movement to save my life – typical of when I change residence, even just a short distance like that one was. Then once started, it has been five to seven robust deposits a day. That caused quite an excitement among my badante. However, the trend has turned into a new normal. Almost every urge to pee is accompanied by an equal urge to sh*t. That’s a good thing, I suppose, but it is also isolating, and when left alone it can be a bit scary. 

Evening walk at Duomo was also only with arm support, and in total I did nearly two kilometers today. Parkinson’s symptoms have gone back into hiding except for whatever effect they may have on walking and periodic slowness. Went to bed a tad too early, and peed my way through the night, though I could recall drinking very little and sweating quite a lot. I gave in at six and got up on my own to wait – for Roman.

Last Saturday evening, fresh out of hospital, Roman wheeled me to the Duomo for our first walk. The north terrace has an access ramp, and is shaded most of the day, five full laps equals a half kilometer, so it’s made to order for recovering legs and feet after twelve days of nothing. I was shocked at how difficult walking again was at first, I’m still shocked. But walking the Duomo has become our twice-daily routine, and we are up to a full kilometer a day. Is walking easier? Maybe a little, but the quality of the walk has improved – most of the time.

This last Friday, someone asked the dread question “How are you?” Dreaded because there is no easy answer. Parkinson’s Recovery seemed to be going ahead nicely, then I fell and a host of complaints and symptoms arrived with the fall. Then there was recovery from the hospital and another lot of symptoms and confusion. But day before yesterday I could honestly report that Parkinson’s symptoms were all at a very low ebb, and that the only exception to that were sore feet and weak calves which may not have much of anything to do with Parkinson’s anyway. Then last night I slept wrong on my right side, and woke with a swollen back and amazingly painful reaction on my right neck and upper right shoulder. The pain persists, and all day it has been affecting my energy, appetite, and mood. It is a setback on top of a setback on top of a setback. And discouraging because on the heels of a little clarity comes another stream of confusion.

Today, the neck and shoulder pain has abated and the swelling gone down, but last evening, and this morning my feet – mostly the left one which had surgery a year ago – hurt while walking. In each case I could, after a bit of warming up, achieve a normal, long, and shuffle-free stride, but after a few meters the ankles give out and begin to hurt. This may just be compounded weakness of the calves; they atrophied in the hospital to a rather astonishing degree and were already weak from lack of training after last year’s operation. But the residual back pain, plus a good stride subverted by foot pain, took the steam out of me.

“You look like you’re working yourself through a terrible meal,” Roman observed. 

“I just want to be home and asleep in the new recliner,” I answered sourly.

Roman allows what I need, but only gives me as much slack as is absolutely necessary. 

On the up side of things, the Ukrainian group that Roman brings with him has been a marvel of lent resources. It began just before the fall when Roman brought home a wheelchair. We took it out on a spin and for the first time in over a year I saw Orvieto without the intervention of an automobile. Then I had the poor grace to fall and stared at a wall for almost two weeks. When I returned, talk turned to finding a sick-room potty. Two days later Roman brought one home, also on loan. The next goal was a motorized recliner. On Friday, Maria and Roman came in very excited. They had mentioned it to a friend whose mother she had cared for for years, and they immediately offered one on loan.

“We got you a recliner, and Slavic is here to help move it. Go into your bedroom and don’t come out until we call you.”

“Right now?”

“Right now.”

But all that sidesteps the central issue; that the Parkinson’s Recovery seems to be working, but leaves me with having to deal with unwalkable feet. My doctor comes over tomorrow to look at feet, and Giaccomo, who trains people with walking problems makes another call on Wednesday. My job is to see this all as steps in a process, and to try to let go of the notion of setbacks. 

In the meantime, I’ve met some extraordinarily generous and wonderful people.