Month: September 2021

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.