Month: April 2022

Tuesday, April 19

Today was about pain in the groin. It got so bad that no position was comfortable. My doctor gave me a shot after a “wait and see” period that felt unnecessary, and within an hour the pain began to subside. It never went away, but at least I didn’t terrorize my neighbors with my screaming when the muscles in question spasmed in bed.

Wednesday, April 20

All activities were suspended in deference to groin, only a session in Alexander survived. By all opinions it is a pulled muscle (how it got pulled is a mystery), but to be safe I’m having an eco-doppler on Friday morning.

Thursday, April 21

The small bruise that showed in the fold of my right thigh grew huge overnight, and this morning the swelling had traveled down my leg as far as the knee. I sent medicos photos, and am on course for an eco-doppler to see what is going on.

My dear friend Jeff is here today and tomorrow, and although in a general way that makes everything better, PD symptoms are heavy, made nervous by the pain and discomfort in the flank.

Friday, April 22

Last night as I sat watching a movie, the pain in my hip was suddenly familiar to about sixty years ago. It was during a swimming lesson when I was nine that the instructor, in showing me how to kick, grabbed both feet and tore a muscle in my groin. Some time later the pain settled into the right hip and remained there whenever I sat for a long while. At some point during my teens that pain stopped bothering me. I bring this up because injuries can become disassociated and healing can be deferred for decades when a person is in Pause mode. The doctor who did the eco-doppler today kept wondering aloud why my leg would have reacted as it did without having been exposed to a recent trauma. Deferred healing would explain that.

Today I was still hyper PD and Recovery symptomatic, but less so than yesterday. Last night I hardly slept (not from pain but from discomfort in the leg) and although today I had only two hours rest to make up for it, I feel that I will not sleep well tonight. All of that seems to have been brought to the fore by the deferred healing process.

However, lest I be viewed as unhinged, I save my speculations for all of you and my friend Jeff – who leaves for Venice early tomorrow morning. We dined out tonight, my first time since last summer. Not once did I have to blow my nose, and the liter of water I drank stayed put until after I arrived home.

Internally, another layer has peeled itself off the onion of fear.

Saturday, April 23

I was right about not sleeping last night; one hour then nothing until five. Today the right hip hurts less while seated than it did yesterday, with the exception of being seated in the wheelchair. The bruising is also less, and the swelling, although it continues to spread downwards, it feels less severe. 

That all of these are signs that a deferred injury is finally healing is astounding to me, and that it is happening to me is on par with my winning a mega lottery.

Sunday, April 24

I slept well and for seven hours. Because the right leg is still swollen and bruised, Natalia gave me a ride into town without a corresponding walk, and it still tired me so much (in part because the hip pain required sustained adjustment in how I sat) that I slept three hours after lunch. The leg looks and feels better, however.

Had a good meeting with the Parkinson’s Recovery support group on Zoom. Some of the members have had really positive developments during the past few weeks, and all were generous with their sharing and attention.

Natalia was late. Eight people including babies and a woman of 88 arrived today from Mariupol with nothing but the clothes they were wearing, and she made sure they had food enough for several days. There are 2,000 Ukrainian residents in the greater Orvieto area, and they, with the larger community, have welcomed more than 500 refugees.

Remember, always, to find reason for gratitude.

Monday, April 25

Slept two, was awake for three, slept three. The right hip is still sore as is a muscle on the inside of the right thigh, but the bruising is almost gone, and the swelling is gone above a distinct point just below the knee. 

I’m tired tonight. Will find a means of staying awake and hope for a good sleep.

Tuesday, April 12

I’ve read that the brain takes 72 hours to adjust to new physical patterns, which may explain why this morning’s walk was the exact opposite of yesterday evening’s pleasant surprise. My legs were rubber, stability was almost non-existent, and while the gait improved slightly, it never reached the minimum on the imaginary quality meter. Be still, my heart.

RLS is very strong and annoying. There are episodes of recovery dyskinesia but they are poses, whimsical flips, and amusing gestures that involve the arms, hands, and feet, and are not annoying. RLS is mainly in the legs and is deeply uncomfortable.

The evening walk between Piazza del Popolo and Corso Cavour was better than this morning at the Duomo. It reminded me of walks of a year ago when we had to stop frequently for me to grab a pole and rest, and when talking while walking left me breathless. It was a good reference for how much I’ve improved with the exception of days like these.

Friend says not to become discouraged, that discouragement is self-fulfilling.

Wednesday, April 13

Morning walk was a shambles, in part because the nail on my right big toe hurt. Fortunately, we were to meet Claudia at Maria Rosaria’s at ten, so while we were there we made a mini-pedicure appointment for eleven, and my toe got scraped and prodded and fixed. But despite a good night’s sleep I felt good for nothing all morning, so immediately after lunch I took a nap. A nap that lasted three and a half hours.

The nap rested me, but deepened the sense of ennui that followed me around this morning, so our evening Costutuente/San Leonardo circle was more organized, but still listless.

When I was a boy, my father, who was an avid restorer of antique cars, was given a 1913 Mighty Michigan touring car that had been stored in a barn for thirty-five years. The barn doors had to be cleared of soil and composted vegetation for them to open, and the car itself was a mess, but it had an electric starter, so my dad and his brother hooked up a fresh battery, topped off the oil, and gave it a try. The engine ground away and eventually turned over once or twice. They switched off the ignition, let it rest, and gave it another try. It turned over a few more times, sputtered into action, and died. They repeated this several times, until it finally caught long enough for them to back it out of the barn. (To be safe, they towed it home.)

I often feel like that car, and like my father trying to start it.

I watched the new West Side Story. I started to cry almost immediately and never really stopped; for the sheer artistry.

Thursday, April 14

I’d say there is something to the 72 hour rule noted on Tuesday. This evening’s walk saved my day. When we arrived back in Piazza Gonzaga after admiring the stunningly beautiful view from San Giovenale, Natalia suggested I walk on my own to where we had parked the wheelchair. I wobbled a bit at first, but then I began to imagine what real walking would feel like and lo! I began to walk for real. Not a full recovery of skills, but close enough that it made Natalia giggle. As we approached the wheelchair I panicked from excitement and fell into tiny shuffles, but only for a half meter. For the next ten minutes I kept repeating “every day I need to walk a bit on my own” until I’m sure Natalia began to think I had lost my mind. But I was a little discouraged all day (contrary to Friend’s advice) and those twenty or thirty meters absolutely changed my view of the world.

Friday, April 15

It is surely spring. It is also April, so spring takes a week’s holiday when the temperatures drop precipitously on Sunday. This morning’s walk was pretty good, but I never quite rose to the point of volunteering solo meters, and neither did Roman suggest them. My marathon sleeping is on another break. I slept well last night, but when I offered myself a nap, my body gracefully declined. Which leaves me wanting to walk on my own out in the spring; but that’s surely not happening.

Saturday, April 16

Confidence has returned. So has a massive need for sleep. Consequently, there is not a lot to report, except I did walk solo again on Piazza Gonzaga, and it followed the same contours as before. Natalia noted that I walk much better on my own than when I am assisted. I’m not sure what to do with that information.

I should mention that for the past week I’ve had muscle pain on the inside of my thighs at the groin. The pain would only show up while turning over in bed. Then late yesterday the pain moved further into the groin and localized on my right side, and hurt only while rising from a sitting position (or turning in bed). According to Recovering from Parkinson’s this is caused by improper flow in the Du or Stomach channel, and will pass. I find that reassuring.

Sunday, April 17

The pain in the groin was still strong this morning, but has begun to gradually disappear.

The big news was that after going to sleep at midnight, I woke around 02:00 and slept not again until 08:00 when I snuck a half hour in before Natalia woke me. What is odder, I’ve been unable to nap in a satisfying fashion all day, not even after a long walk on a crowded sagrato this morning. It is a problem of being unable to relax muscles, which is not a part of my usual repertoire. So, I looked it up. Sudden awareness of stiffness is a harbinger of the return of sensation and function to those muscles.

Internally, for the past few weeks distant and vivid memories are coming back to me; events, friends, moments long buried suddenly there again, and without judgement or excessive emotion. It’s rather wonderful.

Some days I cry at the least (positive) suggestion, most frequently being overwhelmed with gratitude, but also when confronted with beauty in anything, beauty that connects to something great and vast and indescribable.

I was finally able to nap for thirty minutes at about five, and woke much improved.

By the way, for weeks people have been telling me that I look much better. I just now realized that they are seeing the return of muscle function in my face. This is what recovery looks like!

Monday, April 18

That pain in the groin that seemed to be disappearing bothered me all night, and still hurts when I rise from sitting, turn in bed, or cough. So, sleep was often interrupted. I did, however, nap for three hours this afternoon. Anyway, that thing erased all attention to anything else.

Except this: the mucus flow after meals that has been a regular feature of eating for I don’t know how long, suddenly ceased today. I mean, almost completely. I have no idea why.

And this: today is Pasquetta. Seconds out of the front door, Ida and Hans drove up, “There is a solid line of traffic from the autostrada to Piazza Cahen,” she reported. Minutes after that as we turned into Piazza della Repubblica it became obvious that a whole lot of Romans had chosen Orvieto as their after Easter getaway. Piazza del Duomo reminded me of Bethesda Terrace in Central Park on a Sunday afternoon. I found it glorious.

Wednesday, April 6

A turbulent night, not without sleep, and one that would have been treasured several weeks ago, but for the first four hours my awareness was stuck in how difficult it was to move. After that, looser, lighter. In between I paced the hall thirty or so times.

Walking was heavy this morning, awkward this evening, and tiring both times.

I did a lot of computer work, mostly getting finances in order.

Thursday, April 7

I discovered during the night that if, when I wake unable to return to sleep, I do thirty sets of leg lifts at my walker, that I sleep instantly afterwards. This happened twice. Good news because it’s faster, easier, and safer than pacing the hall. So, I slept well, got up chipper and ready to roll, but when it came to leaving the apartment, I could barely walk. Then after wheeling around town (poor Roman) looking for a hat, going to the Duomo showed the same result. After two very slow and exhausting laps I gave up. After lunch I slept two hours.

The evening walk in a circular route between Corso Cavour and Piazza del Popolo was laborious but better than this morning’s. 

Aside from walking (and typing) I feel good!

Friday, April 8

Habit.

This is speculation founded finally on observations I made during our morning walk in the garage. I risk making a further fool of myself by writing this, but it seems that symptoms of PD have reduced themselves to excessive saliva and some restless leg syndrome, and with the latter it may be a recovery dyskinesia, I cannot honestly know for sure. Everything else is habit or damage repair. The habit of applying tension to remedy a feeling of not being safe. Damage repair for muscles that have atrophied over the past twenty to thirty months, and nerves that are frayed from fifty-plus years of holding on to avoid panic.

Alexander technique teaches how to think a muscle relaxed. I applied that during this morning’s walk and it worked every time. I could also see how the arms were connected to the legs and the neck was connected to the pelvis. The trick is to learn to sustain the relaxation.

Today before Alexander, I spent a half hour meditating (sort of) to one of those open the heart chakra musical sequences which I enjoy but am skeptical of. When Monika arrived she took one look at me at said “you are glowing, brilliant”. Maybe my skepticism is another habit that needs relaxing.

Dexterity is good, as is typing.

Saturday, April 9

In my eagerness to be done with this process I may have jumped the gun yesterday. Walking was easier this morning, and I was able to relax my body into it more than yesterday, and while there are definitely recovery symptoms at play, there is more going on (it seems) than atrophied muscles and exhausted nerves. Maybe. I have difficulty with seeing things for what they are, sometimes.

I’ve been tired all day, and come evening, even more so. Bone tired. We walked Piazza Gonzaga and the potential was there for a good one, but the nail on my left big toe hurt badly and one lap wore me out, so we finished off with the wheelchair.

Sunday, April 10

That I thought my sleeping a lot phase was over, was a mistake. Walking was very difficult at first, but got better. Sleeping was terrific all night – and day – long.

Monday, April 11

A varied day, wonderful moments of clarity and calm interspersed with trembling, tight, painful muscles. 

But what a surprise — the evening walk was wonderful; muscles loose and flowing, balance better than usual, half of it on my own. Mind you, progress in these cases rarely follows a straight line, so I may not see the like of it again for weeks, but the immediate payoff was nonetheless welcome.

Tuesday, March 29

I hesitate to write anything, today, for fear that it will sound either redundant, ridiculous, or will be something I have to retract or qualify in a few weeks’ time. Well, had I applied those restrictions six months ago nothing would have been written at all, so I guess I’ll take my chances – but keep it simple.

Maria Rosaria changed my ugly feet into less ugly ones through the use of scrapers and wheels and other tools that looked like they belong in a dentist’s office. Her work reduced pain caused by callouses and other dead-skin phenomena. 

I slept a lot, and always soundly and with great pleasure.

I’m redirecting my efforts at being open to energy from the medulla (base of skull) to energizing the pericardium (heart).

Wednesday, March 30

Walked as usual, slept a lot and well.

Through music, meditation, and simply paying attention, I can feel the heart energy opening up. Every therapist of any kind that I’ve ever been to has emphasized the need to open my heart. It takes a particular kind of courage. And today I’ve had episodes of energy pouring through the medulla oblongata without any conscious effort on my part, so attention to the pericardium pays dividends!

During the evening walk, one lap involved the swaying and swinging that is typical of a healthy gait. It happened spontaneously and I could not summon it back.

Thursday, March 31

It seems like I slept more than I was awake.

A woman who keeps a shop on Piazza del Duomo greeted us and made sure to note that my walk was improving. I have an audience!

Friday, April 1

I walked, I slept, I slept some more.

Saturday, April 2

Repeat. Except…

While watching television I usually spend a lot of attention trying to comfortably position my right arm, and except for a few minutes now and then, I fail. Last night the arm gave me no grief at all. That, to me, is pretty major. I hope it’s a new norm.

Sunday, April 3

Did some street-walking before the garage, this morning. Umm, I mean…

Spent the rest of the day doodling at the computer (I now know a bunch about Diocletian’s Palace in Split, Croatia including the factoid that much of the stone that went into its construction was quarried on the island my paternal grandmother was from), and wishing with my aching thighs that I were able to take a brisk and spritely stroll at will and at length.

I got my wish, sort of. Maybe the stroll was neither brisk nor spritely, and I held on to Natalia the whole time, but we walked to San Giovenale and back without any real rests, so good. Wore me out, it did, so I’m thinking I ought to take that route more often than once a week.

For the second night in a row, I was up for three hours after sleeping one, and my body felt impossibly heavy.

Monday, April 4

The last few weeks have been characterized by needing lots of sleep. That phase is taking a break.

And after yesterday’s stroll to San Giovenale, this morning’s walk was with lead feet. This evening’s was better, and my legs (although sore from the exercise) feel stronger and more stable.

I am also studying Italian again with Yabla.com, and am cleaning things computational, neither of which I have felt like doing for almost two years.

Janice has said that recovery often begins inwardly, and that the physical symptoms can be among the last things to go. So much has changed internally in the last year or so, I can’t begin to describe it all. When I write my book I’ll let you know; all the changes will be in there, encoded.