Month: August 2022

Tuesday, August 23

For the record. I slept well with the usual one hour intermission. Walking the apartment was generally in good form, walking the sagrato was not. Experienced some general discomfort, but it wasn’t constant. Took a half hour zombie nap before lunch. Took awhile to get things working again. Fairly limp all day, occasionally very limp, mostly legs. Upper body was sometimes tight and rigid. Had a spontaneous opening of heart energy while out after the morning walk, Friend said “now, that’s what you want all the time.” I tried to hold on to it, then when that failed, to force it. I find myself trying to make things happen, but know that is not an effective approach.

Wednesday, August 24

My second sleep last night began at 04:00 after two hours of seeking a comfortable position. When I finally slept though, I changed positions (all of them cozy) without difficulty until Roman woke me at 08:00. It was like a miracle, and one that I hope to repeat.

Limpness, however, set a new record. We hit the sagrato after a dental cleaning, and I was so limp I couldn’t straighten my knees to walk. One lap.

A nap followed lunch and left me even limper, so after some safe moving of limbs to wake up the brain/body connection, I paced the hall from bedroom to kitchen. Between laps I would sit and imagine the rising and walking and turning I was about to do. Movement gradually became smoother. That’s similar to what Janice recommends to hasten recovery during limpness, and I vow to do that afternoon and evening.

The evening walk was awkward but not terrible. We ran into several people I know and love, before and after, and I was barely able to relate. That’s the worst of this, that and not being able to go to cultural events; it’s very isolating.

(From Stuck on Pause by Janice Hadlock)

“For [some people], accessing adrenaline does not automatically resume when pause is turned off. Instead, even after turning off pause for good, they might, from habit, automatically want to re-induce pause mode to deal with negativity or stress. In these people, it can feel as if pause mode is trying to reassert itself, with the help of the Blocker, any time stress appears. Until they increase the amount of energy that flows into the body and practice physical moves that use that power, thus increasing sympathetic mode behaviors, they might find themselves sliding back into pause mode from sheer habit: behaving and thinking in a manner similar to people in partial recovery.”

Thursday, August 25

Nothing unusual happened today, except that given movement in general it is a miracle that I am typing as well as I am. Oh, I slept very well and without an intermission; that also qualifies as miraculous.

Friday, August 26

Well, I slept three hours then never more. To start with I wasn’t sleepy, then around 06:30 that changed, but I was so intimidated trying to find a comfortable position that nothing would let go. Missed the morning walk in deference to a nap. Now, I realized yesterday that RLS has not bothered me for at least two days, and as usual I jumped to conclusions and expected that to last. No, today it was worse. My mind likes regularity and this process is the opposite from regular. Sometimes I despair, other times I take a deep breath and understand that aside from movement difficulties (and gallons of saliva) I feel well. So, I do the exercises and remember that hundreds of others have recovered in this way.

Saturday, August 27

I slept a straight eight last night, but only after doing more than an hour’s worth of exercises. Morning walk featured only one lap on the sagrato when it was defeated by plantar fasciitis on both my big toes. We’re on a program to remedy that, but have a way yet to go. Evening walk in the garage started difficult, but taking time to imagine vigorous form between laps paid off. Towards evening I was tempted to fall into a funk for my utter lack of independence, but was saved by my (re?) discovery of the PBS series, Shakespeare Uncovered.

Sunday, August 28

Slept well, walked very well at intermission, and not too badly in the garage this morning. I’m imagining walking as much as I can stay awake for. It helps. Limpness was, for the first time, a bit less pronounced today. (FORGET ABOUT THAT! By early evening, I was so limp that even with imagining elegant movement, I could barely walk.) Something about the way I move today reminds me that it is not weakness that plagues me – I am able lift things and myself with strength – it is non-responsive muscle and nerve. And yes, the limpness is still coupled by a restlessness that makes it impossible not to walk.

Also, I normally complain about being over fed. Today I was ravished by hunger every three hours. When I stopped eating, I slept. Reduced to my animal elements.

Otherwise, a day at drift. As usual, a good meeting with the PD support group on Zoom.

Monday, August 29

Two standouts today. 

First a remarkable reduction of struggle. That mouth tremor that I mentioned before works like a barometer; when I struggle (that is, rush ahead of myself, refuse to accept the condition of the present moment, try willfully to “get better”) the tongue and lips begin to tremble. When I cease struggling, the tremor stops with it. Today, I stopped the habit of struggling. The tendency is still there, but I am no longer drawn to it.

Second, the imaging exercise becomes easier and bears fruit. Its first fruit is the reduction of struggle. Another remarkable result is a huge increase of energy into the medulla oblongata. I sit on the edge of my bed, swing my arms up a few times while imaging a smooth rise from sitting, then imagine a vigorous walk to the kitchen (about 12 meters round trip). Then I get up and make the trip without expectation. The results are various, subtle, and very real. One of the most notable results is that after only a few days of this my self image has changed from one of a victim to that of an addict on the mend.

Here’s what I think my history is. I turned off pause shortly after withdrawing from the levodopa drugs I had been taking for nine weeks. With that came an awareness of depleted energy through the medulla and around the pericardium, so I made various attempts at increasing it. When mobility problems (and movement issues in general) didn’t disappear, I lost faith in my perceptions of energy and turned towards physical exercise as a remedy. But that was filled with struggle, was an effort of will which is pause mental behavior, so after improving over several weeks, it would always crash to zero. This was mystifying.

By simply imagining what it is like to be without symptoms, that effort of will is going away, and even though walking is often very difficult, it feels like I’m learning to use the para/sympathetic continuum after decades of being stuck on pause. With that comes a surety that PD is a habit that only I can overcome, and that nobody and no substance or technology can do it for me. With that new attitude comes the necessary energy and clarity.

To be continued.

Tuesday, August 9

It was a typical two-part night, the intermission lasting about two hours. When I finally returned to sleep, I held the same position for three hours. Trying to reach my phone to check the time was sack-of-gravel all the way. Everything was at a low ebb as of noon, dexterity, mobility, speech, but showed some signs of improvement during the afternoon.

FRIEND: Forget improvement, that doesn’t apply.

ME: Is this what you meant last Thursday by changes and not to be freaked?

FRIEND: Yes.

ME: It’s awful. What is it about, what’s the rationale?

FRIEND:You can invent dozens of reasons, the process is so much more nuanced there is no reason to struggle with rationales.

ME: But how could this be for the good?

FRIEND: You have to wait for it, you have to trust.

This was accompanied by a huge rush of energy up the spine and into the head.

ME: I have to trust.

FRIEND: And accept.

For several weeks now I’ve noticed a perverse pride in my symptoms. When someone makes light of them or offers help, something deep bristles, wants to protect the purity of my struggling. Next moment of joy that habit is on my list for destruction.

Wednesday, August 10

Several years ago, not long after I began to feel symptoms, I consulted what I called my inner companion about what I should do if indeed they indicated Parkinson’s. The answer was clear; you will get through this. I asked many more times after that and the response was always the same, with an emphasis on the word “through”. Who I now call Friend backs this up.

Today, I fell into wishing I could do life over as I experienced all the ways I’d been egotistic, especially regards my parents. I did what I always do; I dismissed it as impossible, regret must be lived with because what is done is done, no one can take back time. Friend took me by the hand and showed me that past reasons for regret can be resolved and must be faced, must be gotten through and dissolved.

So, I embark on a new leg of the journey, turning regret into granting and requesting forgiveness, then letting go. It’s an ongoing project, and will free the heart. Will get me through this.

OR

Limpness dominates (recovery symptom), legs of rubber. Really tired of this!

Thursday, August 11

Slept well in two parts, and was comfortable all night. Woke before Roman arrived, and walking around the house was hugely better; turning, standing, speed control – all of it easier. By the time we left the apartment two hours later, all was back to where it was last night. Very disappointing. Napped on and off after walking (and listened to music) until almost four. Movement was in between – better than earlier but not as fluid as early morning. What is going on!? I ask my Friend. Ask a simpler question he tells me back. Don’t freak out, it’s all for the good.

Friday, August 12

I noticed very clearly during the day that I was aware of a vast space in my heart region (where Friend recently transferred to new digs), and that I had a choice; live there with Friend, or return to the twisted, damp quarters of non-specific location that I am used to. I chose the heart and noticed an immediate difference. Then Maria came over in place of her husband, Roman, and told me that the puncture wound he got in Rome when he stepped on a nail was causing his entire leg to hurt, and within seconds I lost track of the penthouse apartment of my heart. Several hours later, awareness is almost what it was. Very instructive.

From Recovering from Parkinson’s by Janice Hadlock

“Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering from Parkinson’s disease. The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.”

Saturday, August 13

From Recovering from Parkinson’s by Janice Hadlock

“Again, during recovery, the ability to imagine certain movements might still be dormant for areas where the body has been rigid, as opposed to numb. The muscles for these areas, muscles that had been rigid while on pause, become limp and unresponsive when pause turns off. It seems as if, when pause turns off after decades of inhibiting the brain’s motor-imagining area, the use and coordination of some of these muscles cannot be accessed right away. If they can’t be accessed, the muscles behave as if they are asleep – still disconnected from the mind’s motor imagining area.”

And that was my day (and week, plus).

Sunday, August 14

I’ve been having periods of lighter, looser walking since yesterday sometime, brief periods that end as suddenly as they begin. Then, typically they leave me tired. So, I enjoyed a good night’s rest with an hour intermission followed by deep, comfortable sleep, and frequent naps. First movement this morning and yesterday was very encouraging (as it often is) but tightened and lost control after 90 minutes or so. After naps, nothing works for fifteen minutes, then once on my feet movement can be anything, though generally since last evening it has been controlled and easier than I’ve grown used to. 

Attitude is generally pretty good, but today I overdosed on news (on weekends, “speculation” is a better word) ignoring Friend’s warning, and that has muted my mood.

Monday, August 15 – Ferragosto

A walk this morning was suitable for the (Extra-Special) Olympics, with a general lightness of being that was delicious. That waned by 13:00, but an echo of the lightness remained. My Italian also improved.

Evening walk was record-breaking according to Roman; six laps on the sagrato without assistance, and without stopping. For part of that without shuffling. But more significantly, the pericardium was energized.

Last night I watched a documentary on the evolution of American urban parks and cried from the beauty and creativity of it all.

Tuesday, August 2

I slept from midnight to 02:30, then was awake until 06:15 for want of being able to find a comfortable position. Then I saw a thought form; what are you fretting about? Nothing really matters, in the end you’re dead. I let go of that thought, and instantly felt lighter and more fluid, and a single attempt at finding comfort resulted in three hours of sound sleep. Not all symptoms were affected, but the difference was clear. By holding onto the restrictive thinking, I am also choking off the energy needed to rebalance and heal.

In a nutshell Parkinson’s is this: a deficit of dopamine in the part of the brain associated with pleasurable automatic movement (among other things), and a surplus in those parts associated with fear and wariness. A clear example from this morning. Irina wanted me to replicate an exercise she dubbed swan lake, where I grab onto something solid and lift my legs behind me, one at a time. She offered her hands for me to hold, and I could not move my feet at all. She brought in the locked walker and my legs lifted without effort.

From Recovering from Parkinson’s by Janice Hadlock.

“While recovering from Parkinson’s, muscles that had been rigid lose their rigidity and instead became limp and unresponsive.

“Unresponsive is different from ‘weak.’ When you first begin to wake after a deep sleep, you become aware that you are conscious but your muscles might still be limp and unresponsive. Even if you are in perfect health […] your muscles will be limp as you feel the first stirrings of consciousness. After […] a few minutes, as the mid-brain resumes running awake-time electrical currents with steadily increasing amperage, the brain’s automatic motor function, which has been disconnected during sleep, reconnects. You begin to imagine moving a muscle or two, and suddenly, you can move.”

I am strongly experiencing limpness, and have to be able to hold that in context, not to slide into fear that symptoms have been worsening or expectations that they will improve on my timetable. I experience complete immobility for several minutes after sleep, so it stands to reason that after several decades of mock-death, there would be a similar period of gradual resumption of brain function.

Wednesday, August 3

I did the destroy habits routine recommended by Janice. I don’t know if there was a connection, but I also slept well on Wednesday night.

Thursday, August 4

In fact, I went from three to five hours a night plus a short nap or two, to seven hours and another three hours of sleep during the day. And I was able to roll over and easily find comfort in bed. At the same time, I have been Super Limp all day, but continue internally happy and calm. Typing is amusing. Friend says “hello”.

We stopped at Blue Bar for a morning spremuta. Antonny told us that his son (who is nine, and a fine lad) sold his old toys to raise a hundred euro for Ukrainian charities. Irina cried first, but I was soon to follow.

I was sleepy all day until after supper.

Friday, August 5

So, I did the exercise for eliminating the pause mode habit on Wednesday, and last night slept a straight eight in comfort. Today I realize what a bean-counter I have been; keeping tally on symptoms as if they caused themselves. This morning’s walk on the sagrato was no example of perfect form, but I felt lighter, I didn’t fall into pause mode because of the shambling and shuffling, and I felt the difference. I have to relearn to walk not using the pause mode override, instead of cycling through from shambling to striding, then crashing when I can no longer sustain the effort. So, today was major, even if a casual bystander would not have noticed a difference.

Saturday, August 6

I slept well and without waking during the night, turning over and changing position without difficulty. Walking around the apartment before going out had that same loose quality that I enjoyed yesterday, but by the time we were to leave I was overcome with fatigue (or limpness and sleepiness) and had to doze in a chair for ten minutes. Walking the garage was initially loose and fairly easy, but I quickly tired. Friend said on Thursday that the next few days I should be prepared for significant changes and not to let them freak me out; they will be for the good. On one hand it seems a vivid demonstration of choosing other than pause mode when faced with physical challenge, and I felt strongly that was happening before we headed out. On the other, both options remained open and I’m not yet familiar enough with how they are chosen to feel secure. At various times today I have experienced exactly what Janice describes for this phase of recovery, but I can’t find a quote and cannot put words to it myself.

Sunday, August 7

I slept well until six, then returned the sack of (potatoes instead of gravel – a slight improvement). Walking the sagrato was not easy but in fairly good form. Then I took an hour nap before lunch which left my muscles so unresponsive that I want to avoid naps for the rest of the day. Agility is up, and after pacing the hall for twenty minutes, so is mobility.

“Those who recovered did it in response to their own steady work and changes in understanding. Please know, for those of my patients who have recovered, I might have been the witness, but I was never the ‘curer.’” (from Stuck on Pause by Janice Hadlock)

Monday, August 8

For reasons unknown, I’ve always placed my Friend so he was sort of looking over my left shoulder. Well, last night he took up residence in my heart. That feels better.

Today, I feel terrific, just my body has to catch up. I’m waiting. In the meantime, I can do nothing with ease.

Tuesday, July 26

Wasted and weird followed as dominant themes from yesterday. Needed to pace the hall a lot. Typing is problematical, mobility comes and (really) goes. Sometimes movement is super slow. Patience.

Wednesday, July 27

Last night while watching a movie, I was feeling a lot of tension in my chest muscles, so intermittently began pounding my chest like a gorilla. That solved the issue and felt really good. I woke at 02:30 with a similar problem, so applied the same technique. I noticed two things. A few seconds of pounding is all I could do before I lost rhythm, but a pause would allow it again. And the exercise energized my whole chest cavity and heart region in a very pleasant way. Furthermore, the energy was associated with dopamine and adrenalin production, and seemed disassociated from use of pause mode.

After playing with this phenomenon for a half hour or so, I could easily distinguish between use of sympathetic/parasympathetic (normal) brain behavior and pause mode behavior. I came to theorize that walking was sometimes stabilized by my use of pause mode, and that the occasional “crashes” that I experience were due to the unsustainable nature of pause. I further realized that all symptoms are recovery related – a part of the healing process – which is why they can change so dramatically and so quickly. (The remainder of the week has made it difficult to remain quite so positive.)

Thursday, July 28

You know that gorilla pounding that felt so good? Well, early this morning I tried it again and could barely do it at all. Later (I don’t remember when) I could do it if it was done with a lot of force. During the day I could do it rather well sitting at my desk, but hardly at all sitting on the edge of the bed. That’s a snapshot of this journey that captures its craziness perfectly. Interspersed with all of that were moments of feeling energy moving in all the right places, of being so lumpish it felt like I would never walk again, of pacing the hall like a young man, of taking several long minutes to get out of a chair or to change direction on my feet, of bouncing up with hardly a thought. All of which leads nicely into this next quote from Stuck on Pause by Janice Hadlock.

“A person who is starting to recover might go through swings: going from safe and moving easily, to being on pause and being tight, tremoring, and with inhibited movement. A person might have these swings several times per day, or even per hour. Whether or not one is recovering is not a question of the Parkinson’s symptoms getting weaker – it’s a question of whether or not a person is increasing his use of a new, healthy, mental posture of being safe or oppositely, is continuing and/or even increasing the use of his pause habit. When he uses the fear-based mindset, all the linked symptoms of pause might re-appear, as strong as they ever were, even if he’s using them less often. The actual strength of the symptoms, at any given time, will vary in intensity, just like they did before the person started working on recovering. If the person on pause is somewhat relaxed, the symptoms might be minimal, if present at all. As tension or stress mounts, the intensity of the symptoms will increase. After all, this was the case prior to starting recovery, and it will be the case during recovery, whenever a person uses pause mode.”

Friday, July 29

I slept well, as usual, and also as often is the case, not enough. Initiating movement was very difficult and slow for the first half of the day. How I felt reminded me of what it was like during withdrawals of more than a year ago. It’s not new, this symptom, but that it appears now is strange to me. Friend says it will pass as quickly as it arrived, but I don’t really know what’s going on and am almost totally unable to explain or describe how I feel to anyone around me. The question “how do you feel” is asked with genuine concern, but I don’t know how to honestly respond in detail without overwhelming the listener, so I generally respond “I feel fine,” which is true as far as it goes but fails to touch on why I am moving so slowly or why I tire so easily. Then add to that the lack of nuance I can bring to the conversation because I am usually limited to Italian, I get frustrated which negatively informs how I behave and feel.

From Stuck on Pause by Janice Hadlock:

“If you understand how the brain works, how it retains its links and its habits and how symptoms don’t necessarily weaken or diminish, but might reappear full force every time that the pause mindset kicks in, you will understand what is happening if you take a ‘step backwards’: when a negative thought triggers all the usual, detested links. You won’t need to panic that you’re getting worse or that you have made no progress. You aren’t getting worse. That’s not the case at all. If you’ve had even a few interludes of safety and lightness, if you are improving your relationship with your Friend to the point that you sometimes feel safe, you are making progress. The sudden reversion back into your old mindset and the concomitant re-appearance of symptoms might have been jarring because you’re starting to be comfortable with the new way of thinking. You’re starting to enjoy some time when you are genuinely relaxed and maybe going through recovery symptoms now and then. So any return to the Bad Old Ways will be even more alarming than it used to be. Don’t let that alarm overtake your mind. You need to resume talking to your Friend and working on feeling safe. If you were starting to have moments of feeling non-paused, so that your temporary reversion felt worse than ever, then you are making progress. If and when you fall off a horse, you need to just get back on. Don’t choose to fear all horses.” 

Saturday, July 30

Roman and Maria leave tomorrow for a week’s vacation with their three grandchildren. They are going to the sea, I’m not sure which one. A Ukrainian lady and her seven year old daughter are tending me for the week; Irina and Anna. They are staying in town with an aunt. When Russian shells landed near their apartment building and the impact blew out the windows, she and her husband decided it was best to remove Anna from the terrors around her. Their home is in eastern Ukraine. The three months they’ve been here is the longest Irina and her husband have been apart. She is a teacher of English. This evening Roman dropped by so I could meet his grandkids. I am so blessed.

Last night, between first and second sleep, I discovered that sometimes swinging my arms released energy in the spine and into the head, so I swung my arms a lot. It felt wonderful. It also made me aware of how bunched up my body is. Between swings I adjusted posture to stack up comfortably. That felt good too, but I couldn’t actually do anything like walk – or even swing my arms – and still remain upright. Today terrible immobility accompanied every attempt to change direction. Me and my Friend have theories as to why, but are going to let them mature before sharing.

Sunday, July 31

tI didn’t display good sleep patterns last night, so when Irina tried to wake me at 09:45, I asked that we skip the morning walk so I could score another half hour of sleep. To make up for the abandoned stroll, she massaged my legs, back, and shoulders, and now I know why the Ukrainian nation was able to survive Hitler and Stalin, and will prevail over Putin. Strong people who don’t countenance self pity.

Limpness is a recovery symptom, and the word describes well my main characteristic of movement for the past week. The arm swinging that was so satisfying a few days ago is now extremely difficult to do. Gorilla pounding? Forget about it. I ask Friend for constant advice on how to navigate from point to point in the apartment because his advice is always spot on, and is a healthier alternative to living in fear from handhold to lean. Janice says that periods of limpness are the most likely times for her patients to give up the fight. This is my third or fourth experience of limp (and the most undeniable) and I can totally understand wanting to throw in the towel. The onset is rapid (over a week’s time or less) and it is more pronounced with each appearance. Until today. That’s not to say that I’m jogging about the apartment, but I do feel lighter and changing direction feels a tad less impossible. And typing is improved. For now.

Yesterday’s theory waiting to mature is well-articulated in Janice Hadlock’s Recovering from Parkinson’s:

“An hypothesis: when a person has been on pause and the channel qi has been flowing backwards for years, various sectors in the motor imagining area in the brain becomes dormant. People with Parkinson’s, for the most part, cannot imagine themselves moving. When people begin to recover from Parkinson’s, the motor-imagining area might not resume function right away. Or it might be able to imagine some movements, but not others, in the beginning. The dormancy in this imagining area might recover function fairly quickly. But until it does, people recovering from Parkinson’s might go through a period in which their muscles feel limp and unresponsive.”

The meeting of the recovery support group this evening was wonderful. Thank goodness for Zoom.

Monday, August 1

When earlier in the week, I discovered that swinging my arms would act as a kind of energy pump, sending waves of electrical charge up my spine and through my head, Friend warned that it would be days before I could do that again; that the brain’s capacity would need time to recharge. If I failed to report that it was because I didn’t want to believe it. The same with gorilla pounding and the pericardium. Well, during the night the pounding became possible again in short spurts, the swinging not so much. And I notice now that typing behaves in a similar fashion. What I don’t understand, and what Friend is silent on, is the larger cycle of the limpness recovery symptom, and why am I in the third or fourth repetition of that experience. Even the interrupted sleep of a couple of weeks ago looks like pillows of bliss next to the sack of gravel I’ve had to deal with this week – but none of it is new, I’ve been here before, it is only made to seem worse by the significantly improved state experienced during the interim.

I finally fell comfortably asleep around four – after short spurts that ended in sack of gravel standoffs between me and the bed – and woke feeling rested. Then Irina treated me to a very Ukrainian massage and exercise routine before breakfast that left me so exhausted I could barely brush my teeth. I napped instead of walking. 

Otherwise, I felt pretty good interiorly, a little less limp but not over it, and with extreme poverty of movement – so slow it took a full minute to get a hearing aide just to my ear, and another minute to put one in. The slowness and limpness continued through the day. And the fatigue. But internally I feel good! That is important.