Month: July 2022

Tuesday, July 19

From Stuck on Pause (2022) by Janice Hadlock: 

“Being on pause does give a person many benefits: heightened focus, intensity of purpose, and a feeling of being stronger, smarter, and faster than others. Of course, over the years, as the ability to sustain an effective level of mental emergency wanes, these ‘benefits’ diminish. By the time a person is bedeviled by the negative side effects of being on pause, he is not actually stronger, smarter, and faster. But his brain might very likely tell him that staying on pause is nevertheless keeping him ‘better than other people’ or keeping him ‘safe.’ Therefore, another thing a person might do to stop using pause is to stop desiring the ‘benefits’ of using pause: those benefits might have included feeling in charge; feeling compelled to be right in matters of judgment or morality; feeling powerful; feeling untouched by physical and emotional pain. So long as a person wants to have the benefits of being on pause, his brain will continue to opt for and further fortify the electrical brain circuits that support the habit of using pause.”

I wish typing were better today, I have a lot to sort out. The body is back to feeling like a sack of pea gravel, something I’ve not experienced for two months or more. But I’m understanding the process more, and my gems of thought will have to wait for a more agile day – or week.

Wednesday, July 20

If there is a cycle in how my body recovers, this week would vote in favor of a seven day turnaround. Finding comfortable positions that would last the night was nearly impossible. I slept the last three hours on my side (to discourage RLS) in the recliner; not an easy trick. The morning walk was better than anything I did yesterday, but it was still a sack of gravel being pushed along, not proper ambulation. Today, all is a bit better. We shall see what the weekend holds.

Thursday, July 21

Same sleep pattern as Wednesday. Walking also the same.

From Stuck on Pause (2022) by Janice Hadlock

“Many people who are making a mild effort to recover from being stuck on self-induced pause don’t believe or don’t want to fully accept that their own minds actually have been creating their problems. This disturbing concept can be in direct conflict with the person’s idea that his mind is extremely smart and clever and his powerful will has been the only thing making him successful in life or even keeping him alive. But when his brain has been modified enough that he has two viable thought tracks in his brain – the pause track and the ‘safe’ track – and he vacillates between them, he can start to see the relationship between his thoughts and his symptoms or lack of symptoms.

“This proof that his own mind was creating his horrible symptoms of immobility, rigidity, and tremor is often a moment of great dismay. This let down is sometimes followed by the gleeful realization that, if his health problems are only coming from his thoughts, he will be able to heal himself. This person continues, or even increases the intensity, of his steadily deepening relationship with his Friend.

“I refer to people taking this path as ‘recovering.’”

Bingo!

Friday, July 22

Sleep pattern normal and enjoyable. Lots of internal clarity. Fairly symptomatic – walking grew better through the day, typing worse. Very little general discomfort.

From Stuck on Pause (2022) by Janice Hadlock:

“Two steps forward refers to getting stronger at using a brain habit of ‘safe’ thoughts, which in turn activates a healthier motor system. A ‘step backwards’ refers not to symptoms, but to using, yet again, from sheer habit, the thoughts that activate pause mode. And those thoughts might activate all the symptoms of pause mode that you’ve ever had.”

Saturday, July 23

Slept until nine regardless of Roman’s efforts at waking me. Morning walk, very difficult, evening less so. Slept the afternoon listening to music.

Struggling with internal work. Typing very awkward, so must keep this short.

Quote of the day from Stuck on Pause (2022) by Janice Hadlock:

“When a person is slowly recovering from Parkinson’s or the habit of using self-induced pause, he might be feeling much lighter and relaxed for longer and longer periods of time when he is talking with his Friend and feeling safe…and then he might experience one hundred percent of his old symptoms when pause mode kicks back in. 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.”

To be read repeatedly.

Sunday, July 24

From Stuck on Pause (2022) by Janice Hadlock:

“…in spite of the apparent lack of change, the new thoughts were laying down tracks of new brain pathways that can eventually support new, improved mental, emotional, and physical behaviors. Eventually, when those new routes become wider and deeper, they will become the paths of least resistance. The brain will start using the new pathways in preference to the old ones.”

Slept really well. Morning walk, mildly successful, likewise midday pacing. Typing has been worse, but fine movement (like inserting hearing aids and moving a cursor with a mouse) are sheer agony. 

An aspect of my PD personality is wanting to be in charge, hence I was more a director than actor, more often a boss than an employee, more easily a teacher than a student. For this evening’s walk Natalia taught me some simple exercises, the sort of thing I was teaching my students seven or eight years ago. Whether it was the exercises that helped me walk more freely than I have in awhile, or that I gave in to being a student, I do not know. Probably both.

The adventure continues.

Monday, July 25

From Stuck on Pause (2022) by Janice Hadlock: 

“After having a few moments, or an hour or two, or a few days, of physical lightness, relative ease of movement, and softening of rigid muscles, but then reverting back to the previous status quo of rigidity and/or tremor, a person might continue working on cultivating a constant relationship with his Friend. Eventually, in a subsequent moment of once again feeling safer than usual, he will have another episode of relatively healthy mental thinking. He will again immediately experience the physical lightness and relaxation that comes with using a healthy blend of parasympathetic and sympathetic mode.

“As the person continues to work with his Friend, eventually learning to trust the Friend more than he trusts his own mind, he might find himself having predictable periods of good movement. He will notice that these good periods correspond to positive thoughts. He will also notice that his periods of ‘bad movement’ or ‘symptoms are worse’ are always immediately preceded by some sort of negative or isolationist thinking. He might be shocked by this realization.”

So, this morning about 02:30 I woke up feeling stiff which always recommends pacing the hall for fifteen or twenty minutes. Halfway through the first, shuffling lap, I watched a thought form; how courageous is self-loathing, how heroic to be able to face the abyss of my own unworthiness. It startled me, and I immediately chose not to tread that path of old, old habits. In real time my walking instantly improved, my whole body felt lighter, and it stayed that way for about forty minutes when I became physically tired and went back to sleep. Today, I’ve been wasted and weird. But I’m so encouraged by the living example of how this pause/PD thing works.

Tuesday, July 5

From Recovering from Parkinson’s by Janice Hadlock, “When attempting to come out of this [pause] mode, the body often exhibits tremor behaviors, also known as ‘shaking.’”

Whenever I wake on my own accord, I shake all over. If someone or something wakes me, I don’t. The shaking can last ten to thirty seconds, or it can come in waves for a longer period. I can successfully resist it if I try. It is not necessarily uncomfortable, but it can be tiresome when I am trying to catnap and every slight lean towards wakefulness provokes shaking.  Around 13:15 I sat in the recliner to nap while listening to forty minutes of chakra-tuning music on YouTube. That auto-followed into videos of various pieces by 2Cellos, and I let them play for another hour. There was no shaking, though at several points it seemed there might be.

Walking this morning was awkward and wore me out. But internally, I feel great. The evening walk surrounding Grand Albergo Real was hard to control at first but got better. Then I joined Erika for soft drink and conversation, and managed to avoid a symptomatic crash despite the heat, my extreme slowness of movement, and moderate discomfort.

Wednesday, July 6

I remembered as I was going to bed last night why I went on about the music in yesterday’s post. When 2Cellos started, instead of “waking” I played the edge of consciousness, still in the lovely part of sleep, but completely aware of the music… in fact, hyper aware, noticing its beauty and structure like never before. I tried again today, and occasionally could get there, but it’s almost an hour after 2Cellos started and I’m still shaking.

Thursday, July 7

I wanted to quote Janice on this, but I can’t find the passage. So, to grasp at its essence: Once off pause, the brain can go through a process of relearning how much dopamine to produce and distribute and to where. So, after a few minutes of fluid movement, the supply may deplete, and will take an hour or two to restore to effective levels. I’m just guessing, here, but if you change those units of time to hours and days, that might explain the cyclic phenomenon I experience with walking.

Today, walking was close to the bottom of its cycle, but interestingly enough, typing is fluid (though my muscles aren’t used to this so my fingers are quickly fatigued). Also, I have been dreading putting my hearing aides in, the precise movement required was sheer agony. Today they went in easily. Also my Italian became more spontaneous; I was cracking jokes all day and better understood what was being said. And all things requiring dexterity became suddenly easier.

Friday, July 8

Dexterity, language skills, and spontaneity continues improved. The morning walk was easier, smoother sooner, enjoyable enough that I wanted to keep walking when it was time to quit. Slept well last night but with a three-hour hole in the middle, but cannot nap this afternoon, nor am I especially tired. My attempts at napping, because they are attempts and shallow, end in shaking.

Janice dropped a hint in her last email suggesting that “in my experience, the majority of people with Type I PD from self-induced pause have demonstrated traits of sulkiness and petulance.” Historically, and in relation to the inconveniences of the disease, I can see that is exactly right and that the sudden openings of the past couple of days have to do with relaxing away from those habits.

The evening walk was not as smooth as the morning, but there were positive aspects. For one, I saw clearly how important it is not to feed the fearful, wary part of the brain, because I enter a downward spiral if I do. In this case courage is not just a noble sounding noun, it is an integral part of the recovery. Courage is to accept that this time walking is rough, and be cheerful. For the other, there was a rehearsal going on for a concert tonight on the front steps of the Duomo; classically-inspired rock. The concert features a small orchestra, several solo vocalists, and a choir. The music was beautiful.

Saturday, July 9

From Stuck on Pause (2022 edition) by Janice Hadlock

“Many readers have been baffled by the way that they keep slipping back into self-induced pause mode, and wonder why it returns after they have first turned it off. […] Using self-induced pause is a mental habit. So long as this habit is retained in the brain cells, self-induced pause – and all the old motor malfunctions that the body has developed to accompany it, such as rigidity, tremor, soft voice, etc, – might resume any time a person employs the mental habit of inducing pause mode. No matter how many times self-induced pause is temporarily turned off, it might be re-employed as soon as a person stops feeling safe.”

So far the newest edition of Stuck on Pause reads a little like a well-crafted crime novel, and corresponds exactly to my recent (and not-so-recent) experiences with recovery – at least those parts that describe the slow version. Today my legs are not so useful. But agility is better (therefore typing), language skills are more available (therefore Italian), and my arms and hands are freer.

There is another concert tonight in Piazza della Repubblica. For me, that is the hardest part of this adventure – not being able to attend live musical events.

Continuing on.

Sunday, July 10

Walking the sagrato this morning was pleasurable again, not perfect but in relatively good form. Likewise typing, and other small things like putting on my glasses, getting up from a chair, moving around the house. On Natalia’s encouragement I discovered that I can lift my hands above my head without feeling like I’m going to fall over backwards. Again, a little thing that is a major event in my day.

Monday, July 11

Walked well this morning, and as is often the case, was dead tired afterwards – by the fifth lap, actually. That means extreme slowness and difficulty speaking with Italian friends on the way home; even with English-speaking friends, to be honest. I slept like a stone post lunch, and was happy to note that after a dopey half hour the agility returned and I was moving at closer to normal speed. I slept really well last night, but have been taking little, almost involuntary, naps all day. Possible good news, the wake and shake phenomenon was much reduced today. I hope that holds.

Wednesday, June 29

Celebrate your life! All of it. Every corner and curve. Let your past inform your present to make you a fuller, kinder, more honest and spontaneous person in your future. That’s today’s recovery insight.

Walked okay, typing acceptable for brief stretches, slept like an angel.

Thursday, June 30

There was a black and white cat named Tito who lived next to where I am now. My first residence in Orvieto was also on Via Pecorelli, so I would pass Tito in front of his palazzo several times a day. We quickly became friends. He had a very loud and continuous meow, and would begin calling as soon as he smelled me on the wind. Those days he spent most of his time outdoors, scrupulous about his territorial boundaries. By the time I moved here, a year ago last October, he was spending most of his time indoors, but if he was out he would begin to call as soon as the main door to my building was open. Last December I saw him for the last time, and the finality of that visit was verified about a month ago by the lady who lived with him and his sister, Gigia.

From Stuck on Pause by Janice Hadlock:

“In the field of psychology, silent or spoken communication with an intangible, not physically present, loving and trusted friend, real or imaginary, is referred to as a parasocial relationship. The parasocial relationship, what I call ‘the invisible friend,’ can be one of the most helpful tools in making an accurate diagnosis, as well as a crucial tool for turning off pause.” (Because like prayer or meditation, it stimulates the striatum.) Janice later suggests you choose a deceased Friend who you knew well and loved; a best friend, favorite aunt, beloved pet. I had chosen most recently a best friend from college, and the relationship has been sweet, and honest, and sassy. Then day before yesterday I realized that every time I leave the building I check for Tito, even though I know I won’t find him there. So my college friend now has feline company. I hope he’s not allergic.

(The photo for this post is of Tito and Gigia, he is on the right.)

Friday, July 1

This morning’s insight from Friend (human). “Worry is a waste of energy and intension. Worry about the past is worse than worry about the future, and worry about the present doesn’t exist. Free yourself.”

Leaving the building for the evening walk, I checked to see of Tito was in front of his house. He wasn’t, but I could hear his meow in my head. Then I asked Friend to alert me when I slipped into or out of pause mode. He said he would. I asked again that the distinction be as clear as could be expected at this stage of my recovery. He said fine. The instant I began walking on the sagrato, he noted that I was in pause mode. I stopped, opened my heart, and began again to walk. He explained that walking in less than perfect form frightens me, and I go into pause, which of course worsens my walk and I enter a self-feeding downward spiral. “Don’t hide in your hole every time you feel a bit dizzy!” he told me. I could feel a physical difference in my brain after the adjustment, and the walking was more fluid (and more courageous) than it has been for quite awhile, and for all of the six unassisted laps. I was so happy (and tired) I could barely speak for the next half hour.

Saturday, July 2
“Don’t overthink it,” Friend said when I asked for a similar awareness of pause for this morning’s walk as last evening’s. “This morning will be different, and you’ll see how when you get there.”

It was still a very good walk, just as courageous and positive, just maybe a bit more tired, though not for lack of sleep. Friend’s warning was repeated when after a recliner nap I could not stop shaking; I eventually paced the hall for a few minutes which worked to quiet my nerves. Regardless, movement around the house has been relatively smooth all day, and for that I am grateful. The evening on the sagrato was about equal to the morning.

I’ve been here before three or four times in the past year, walking and movement in general steadily growing freer. Then each time it all crashed in a single day and I was back, more or less, to where I’d started. That hasn’t happened yet, but I asked Friend about it. “You would have a slightly off day, panic, and crawl back into your pause hole. And a little bit you were afraid of recovery, so you’d set yourself up to undermine it.” I’m determined to change that.

Sunday, July 3

Walking continued in good form. Friend continued to exhort me not to overthink. On Friend’s advice (more like orders, really) I also paced the hall several times. Both walking and pacing included deliberate stimulation of the striatum by various means, and I have avoided crawling into my pause hole for imagined protection. 

Monday, July 4

Way before I discovered the Parkinson’s Recovery Project and formalized my parasocial relationship with Friend, I conducted inner duologues with some higher entity, and five years ago when I first noticed signs of PD, I asked for advice. Over the next three years or so, every time I expressed internal concern I received the same reply – you will get through this, but understand; “through”, not “over” and not “around” but “through” and for good. Today Friend picked up on that theme. I have viewed getting through as a teeth clenching, shoulder to the wheel kind of effort, but Friend said, “it is a difficult process but one of permitting and allowing and progressively opening stuck places, it is joyful not grim.”

Walking and pacing today has not been as fluid as it has been since Friday, but I haven’t crawled back into my pause hole, so I have hope that I can navigate my way through to calm waters.