Month: March 2023

Repair – March IV

Tuesday, March 21

Not as flowing as yesterday, but there are little things that remain easy where that is not usually the case. And joy. Lots of it. And everyone is excited about spring.

Wednesday, March 22

Could walk hardly at all in the morning, a result, I think, of not sleeping except in one and two hour chunks. But Roman and one of the guys from Opera del Duomo spent a good deal of time discussing how I could get in to see the Zubin Mehta concert on Friday, which touched me so deeply that it was all I could do not to cry.

The evening walk was almost the usual.

Thursday, March 23

I slept what has become my standard pattern, but was (almost virtually) asleep on my feet all day until shiatsu at 16:30 when I was able to sleep lying down. Morning walk was wiped out by the callous on my big toe; the pain overrode all good intentions. The same happened on the evening walk.

Friday, March 24

Slept until almost 10:00 having fallen asleep for good at 03:15. Then I sat for more than four hours around and at the concert at the Duomo without a hint of RLS, which is close to miraculous. Walking before and after that was a bit weird, unhinged, and random.

Saturday, March 25

After shiatsu on Thursday, Michele said that my muscles were exceptionally relaxed. Yesterday and today walking was (technical term) weird. Especially at home where there was actual, spontaneous arm movement; not coordinated or rhythmic and totally random, but still. Today walking the sagrato was similar but difficult and the arms were tight, as usual, and symptoms are as annoying as ever; weak voice, stammering, drooling, typing a mess, all of which had retreated earlier in the week. But RLS is largely absent or at least mild. What is happening??? Don’t know.

Sunday, March 26

When I have to pace at night in order to sleep (which lately is all the time) I ask for, and follow, Friend’s instructions. 

This was overheard Saturday night:

ME: How many laps or for how long a time?

FRIEND: Walk until you are walking normally.

ME: You mean without symptoms?

FRIEND: Yes.

ME: That could take weeks.

FRIEND: Yep.

ME: You can’t mean that.

FRIEND: I do.

ME walks for a long, long time. Buried in all that pacing are a few steps that are perfectly normal.

FRIEND: There! Did you catch those?

ME: Yes. And?

FRIEND: Repetitive action is difficult for you at first. Work on those. You can stop now.

Monday, March 27

Yesterday I attended a concert at Teatro Mancinelli. There was frequent clapping. Being repetitive action, clapping was difficult, but gradually I learned (again) and was able to do it.

Symptoms, so strong on Saturday, are now quite mild. RLS is lurking in shadowed corners, ready to pounce.

Attention must be paid to the subtlest changes. I am beginning to notice how the physical responds to the mental. And how even a butterfly’s fluttering of love can have a monumental effect. Just beginnings, but real.

Repair – March III

Tuesday, March 14

Sleep eluded me until 07:00 – I simply was not sleepy. At seven I sent Roman a text “If I am sleeping, let me be,” so I got four hours in. I napped an hour quite easily and am a bit anxious that my energy level threatens a repeat of last night. Other than the usual mobility and typing problems, I feel good.

Wednesday, March 15

I was in and out of bed until 04:00 then I slept a sound five and a half hours, but I was still half asleep until a brief chair nap just before lunch. For the rest of the day agility – therefore typing – was better than usual. Walking was a mess. Posture made me feel like a wadded scrap of paper with toothpicks for legs. So, while I could type fairly well, sitting at the desk left my neck and shoulders screaming with pain after about an hour. I took a couple of brief naps to rest the muscles, and woke only slightly zombified; so that was progress.

Thursday, March 16

An almost exact replica of yesterday.

Friday, March 17

Another day like Wednesday except walking a bit better and typing worse. 

This dialog happened with Friend.

FRIEND: You are minutes away from full recovery.

ME: How many?

FRIEND: How many what?

ME: Minutes. Three? Ten thousand?

FRIEND: All I’m saying is you are very close. 

ME experiences a warmth is the region of the heart, and is distracted by other things, but on the evening stroll there were lots of moments of joy.

Saturday, March 18

This dialog happened today.

ME: So, nothing yet, you must be talking thousands of minutes.

FRIEND: I mean minutes once you’ve let go of habitually retreating to pause-like mentality.

ME: How do I do that?

FRIEND: It’s a matter of love.

ME experiences love light again, only stronger and broader than yesterday, then it also fades.

ME: I can’t hold onto it!

FRIEND: No you can’t.

On the evening stroll, joy is rampant.

FRIEND: You can give up the bean counting, too.

ME: Was all that joy stuff me changing my mental habits?

FRIEND: You’ll see.

ME: It doesn’t last very long.

FRIEND: You don’t know that.

Sunday, March 19

Limp, all day and into the evening. Could barely move, let alone walk. Not rigid and not really unpleasant. Internal as well as external. Mental as well as physical.

As the evening unfolded, the limpness of water became the flowing of honey, and while I still walked like a duck, there was some strength in the waddle.

Monday, March 20

Two strong sessions with the rower, and two really good walks in the garage.

A series of five minute naps sitting in the recliner zombified me completely, but I was able to recover in just a few minutes, and that left me feeling like I’d been visited by a miracle.

Typing is a mess. Joy is frequent, simple, and loving.

Repair – March II

Tuesday, March 7

A week ago I experienced walking well as I’d not done in years. Today, I could barely walk at all. I’m sure there are brain reasons for this kind of random progress, but I find it difficult to adjust. Movement in general today was reluctant to an extreme. I may have been limp all day, I’m not sure. I know it wasn’t rigidity I suffered, nor frozen action, but it was close enough to PD to seem threatening. The evening walk was smoother than the morning. Connections with people on the street were marvelous beyond description.

Wednesday, March 8

My father was diagnosed with Parkinson’s in 1983, and the drugs stopped working in June of 1986. I was in Williamsburg at Virginia Shakespeare Festival that summer, so was not able to make it back to California until September. But I shouldn’t have worried, my parents discovered a better remedy; Certs breath mints, preferably the wintergreen, as I recall. They worked, too – for a time.

“…some people with PD who are convinced that some vitamin or supplement will cure Parkinson’s might see their problematic symptoms completely go away in response to the vitamins or supplements – until they have some new life crisis or indulge in a negative thought.” (from Stuck on Pause by Janice Hadlock)

Thursday, March 9

After five good hours of sound sleep, I suddenly woke with fifteen legs, each wanting to go its own way. After several attempts at rearrangement, I removed myself from bed to try the usual tricks, but none worked. Roman arrived in the midst of these efforts, and distracted me with the morning rituals, including breakfast – which today featured for the first time a sugar-covered donut. Given that I was too wasted to walk or row, and neither bed nor recliner offered any comfort, we opted for the vibrating chair, usually a safe bet so long as I have help in and out of it. Today, after only a few minutes my repose was ruined by a particularly strong form of RLS, which I tolerated for awhile. When it crossed the line into super annoying, I called for Roman. No answer. He’d gone shopping. I learned a lot about sucking it up and dealing.

When Roman returned, we decided to try the recliner. Miraculously, there was no RLS and I slept for two hours. Roman claims that my snoring caused Roberto’s dogs one floor down to bark.

I try to apply the principles described in the Recovery literature, as to why stuff happens, but usually feel that I come up short. Friend tells me that if there is something I really need to do or pay attention to, that he will tell me. Otherwise, observe, relax, enjoy the journey. Even when the waters are rough.

Friday, March 10

In Scranton, my favorite forms of exercise were walking and swimming, but for those mornings I could not make it to the pool, I purchased a rower. When I moved to Orvieto, I left almost everything behind. A few months ago, I was suddenly possessed of the idea that rowing would be good for me, so I ordered the same model that I had in Scranton. The first day I used it, I was able to do fifteen minutes of full-bore rowing without pauses or slowdowns. Since that first time, I can barely do six minutes with structured light periods. This particular health adventure of recovery from PD defies logic, and as crazy as I am, I still rather foolishly expect logic to prevail. Of course there is a logic to it all, just not one my brain can wrap itself easily around.

Saturday, March 11

A local hotel that is upgrading under new ownership donated eighty beds, with bedding, to Ukrainian relief efforts, and Roman took on its planning and organization. Then the huge delivery truck showed up a day ahead of schedule. The beds had to be shuttled from the old town to the truck parked in a lower suburb, so yesterday Roman left suddenly after Iryna arrived to untangle all the now chaotic remnants of formerly perfect order. It all worked out fine – and this morning he was jubilant – but the day began late so I wasn’t able to walk.

The rest of the day, whatever walking I did at home was subtly improved. Taking that out to the sagrato, this evening, was a challenge but not a failure.

Sunday, March 12

Was up and down all night. Finally, at 06:00 I took a tiny dose of Medinait and slept until Natalie woke me at 09:30. The result has been a day of extreme poverty of movement. Add to that a painful callous on the bottom of my right big toe, and walking was practically impossible. That is all.

Monday, March 13

Another spotty night. Consequently, I napped a couple of times today, but naps have lost their zombie sting. For now. And I didn’t have one serious incident of RLS. For today. I’m going to try to resist reporting incidents as trends. At least try.

I feel good! Walking, typing, and sleeping are unpredictable, but I have been able to read in comfort. Of late.

Repair – March I

Tuesday, February 28

Last night during the awake between first and second sleep, my Friend offered to energize my pericardium. I said “sure”. He said, “But let me do it, nothing for you to do except observe and enjoy.” There immediately began an energy bath that started in the region of the heart and spread to parts of my upper body. It was glorious and lasted for about two minutes. When it was done, I wanted more, so tried mightily to repeat the experience. “Let me do it!” he said. I tried to let him, but nothing. It was only just now I realized that allowing needs to be completely receptive, and that even issuing an invitation is doing something. (Friend also warned me at the time that there would be a rebound, but not being sure what that meant, I didn’t write this until the week had proven his point.)

This evening’s walk featured seven garage laps of feet picked up and heel to toe steps. People have been telling me to walk that way for years and I simply could not sustain it. This evening, I could.

Wednesday, March 1

Shiatsu yesterday, so everything is a notch askew. The tremors shut off occasionally, but I don’t know why. Walking today was not bad, but I had to struggle to achieve last evening’s form for even half a lap, never mind sustaining it for several. But I was able to advance on my tax numbers, so that’s something!

Thursday, March 2

Today it became clear that for all of my adult life, if not longer, I have metaphorically had one foot on the brake and the other on the throttle, simultaneously. The PD is the result of having to work so hard to get nowhere, and finally letting go.

A twenty minute nap after lunch destroyed my energy, focus, and typing for the afternoon and evening.

Friday, March 3

Except for a few periods of spontaneous energized pericardium, it was a perfectly mediocre day. But the pericardium energized is such a glorious experience, I want to live there always. I submitted an application and am hoping to be given keys before long! Friend says to chill, and take it as it comes.

Saturday, March 4

It was a very choppy night. After repeated, and oddly benign dreams about Kristallnacht, I woke at 06:00, tired and uncomfortable, and spent a half hour throwing myself at the pillows hoping that I would find an agreeable position that would invite, or at least allow, the sleep I craved. I finally gave up and moved to the recliner where I fell instantly asleep. Around 07:00 I was awakened by creeping RLS, and still tired, threw myself onto the bed, was immediately comfortable, and was asleep in seconds. That is all so weird.

But I never did get the sleep I lacked (and I was limp as well), so despite the sun and well-wishers, I could barely walk when Iryna took me to the sagrato. After lunch I feel asleep in the recliner for two hours without a whisper of RLS, but each time I even approached waking, my body stiffened into an imitation of a wood plank, and shook violently for about a minute. Once awake, it was an hour before I felt I could risk trying my feet. 

By the way, this morning there was no tremor. At all.

Sunday, March 5

Slept well enough that I was disappointed when Natalia woke me. Walked the streets around Grand Albergo Reale for the first time in weeks. It was a bit of a challenge. After lunch I spent two hours at the computer drafting and sending a letter to sixty people. It was also a bit of a challenge. Worn out, I sat down at 16:45 to wait for Iryna’s arrival at 17:00, figuring that if I dozed she would wake me. She ran late, I did fall asleep, so by the time she woke me I’d slept 35 minutes, hence the evening walk was much more than a bit of a challenge.

Monday, March 6

Another choppy, uneven night; slept well when I slept, but in between I wrestled to find acceptable positions. Between 04:00 and 07:00 I slept for an hour, paced the hall endlessly, stretched my back, and tried to get comfortably onto the bed maybe twenty times, then suddenly after a string of aborted attempts, it fell right and I was soon asleep. So weird. The rest of the day logically followed. I succumbed to a thirty minute nap around 14:30 and spent two hours trying to recover. The evening walk was awkward and shuffling, unlike the form during early morning hall pacing which was pretty damn good.

I’ve been begging Friend for more pericardial energy, and it does happen in life, only subtler. He says not to waste time and energy on being discouraged.