Author: dallanz

THURSDAY 7 DECEMBER

T ypding stills usckss. But forging on…

I use walking as a sort of benchmark for state of symptoms. These are tallies of walking events between November 5 and December 6:

• Exceptionally good 21
• Moderately good 24
• Moderately bad 12
• Exceptionally bad 6

The evening walk on the sagrato, December 3, was spectacular; fluid, relaxed, largely automatic, and for more than a kilometer. The next few days the walks were good, but I was unable to match the walk on Sunday evening. However, a persistent PD symptom is limited ability to turn the head from side to side. That same evening, head turns gained 20 degrees each side, and that new flexibility has sustained since then without exception. 

Pause was off Monday morning when I awoke, and I made a conscious decision not to crawl back into that spider hole. Pause has stayed off.

I am working on replacing a mental habit of regret with one of gratitude.

Friend says as I’ve stayed off pause for several days, now muscles and nerves have to catch up.

I’m taking my metaphorical arms down and running in towards life.

MERRY EVERYTHING!

Rather than repetitive daily logs, I’m gonna just cut to the chase in my report for October… 

Wednesday 1 November

Morning on sacrato, four laps pretty good, full program on rower, also pretty good. Evening in the garage, the best walking I’ve done in years; no dragging or shuffling, good strides, good posture about half the time, arms relaxed if not swinging. Seven laps without degrading at the ends. Otherwise, periods at home of full body tremoring, full body calm. Slept well last night, 7 hours in bed and without pause. Typing awkward. No RLS.

Thursday 2 November

Using yesterday evening’s walk as the Gold Standard (at 90%) this morning’s was 75% and this evening at 80%. I’m thrilled. The pattern until about a month ago has been — increasingly good movement, a crash for a week or two, then a crawl back up, and repeat. The past month has set a new pattern where the “good” periods have been longer and stronger, and the “bad” periods have been milder and shorter. Sleep last night was interrupted once but I was able to get out of bed without real difficulty. Typing awkward. No RLS. 

October 5, 2023

This exactly describes my experiences – there is nothing to add at the moment… [from Stuck on Pause by Janice Hadlock]

The progression of recovery from self-induced pause 

After some period – it might be hours, it might be years – of talking to one’s invisible, loving Friend, one starts to feel as if the Friend is actually listening. The person who is using pause mode but talking constantly to his Friend will eventually experience the awareness that “I am not alone!” This is a somatic feeling – a physical sense of being connected to someone else. This feeling further stimulates the thalamus and striatum and creates a sense of being safe.

Immediately following this sense of being safe, a person might also feel physically lighter, due to the release of dopamine in the midbrain. His movements might be smoother. If he is tremoring, the tremor might decrease significantly. For a moment or two, or a day or two, or for some period of time – until the next wave of negative thoughts arrive – this person will be using a Friend-activated, “I am safe” set of brain grooves: grooves that drive parasympathetic mode. These are very different grooves, or pathways, than the ones that direct self-induced pause. But when the next wave of negative thoughts occurs, the brain can easily slide back into the old familiar habit groove that drives all the physiological symptoms of pause.

During the first stunning moments of feeling physically lighter and relaxed, a person might think he has switched off pause for good. After all, when a person uses biological pause, a genuine neurological response to the possibility of imminent death, when pause turns off, it turns off for good…or at least until the next time the person is at genuine risk of dying. But self-induced pause is a condition sustained by a brain habit not by an actual, biological near-death situation. The habit might have started with a command to not feel pain. But there was never any actual physiological condition of imminent death. Neurologically, it’s as if the person told his brain to pretend to be dying, to feel as if he were dying. And the brain obeyed and gradually became very, very good at it.

And here’s the main point of this chapter: even if a person experiences some moments, or whole weekends, of lightness and joy, and it feels as if he is no longer using pause mode…those habit-grooves in the brain that inhibit the release of dopamine, cause tremor, and generate risk-based thoughts associated with pause mode are still there.

The brain loves habit. The brain especially loves habits that feed the ego and the sense of self-importance and power. The ego-associated part of the brain likes using those pause-mode grooves. Also, the brain resists change. A person might begin to establish a new, non-pause route for the currents in the brain in response to feeling safe. But at first, the pause grooves are deeper and smoother than the new, narrow groove of healthy neurological behavior. This is how the brain “resists” change. At the first sign of familiar, negative, pause-sustaining thoughts, the brain will happily revert back to its comfort zone. It will use the wide, well-developed electrical pathways of the old habit: the paths of least resistance.

When this happens, the person who thought he had switched off pause for good is baffled: “Darn! I thought I was recovering!”

He is recovering, sort of. He’s made the first, shy foray into using thoughts that don’t support pause mode. However…the old, well-established brain grooves for self-induced pause still exist and they are easier to use than the new ones.

The preceding sentence might be the most important one for understanding why recovery can appear to be “two steps forward and one, or maybe two or three, steps back.”

read more, download book and go to page 150

Monday, September 11

The big realization of the past three weeks was that tracking symptoms, while fascinating in its way, misses the point. The objective is to spend as much time as possible off pause. Then, having treated the root, the symptoms will gradually (or, for some lucky some, suddenly) disappear.

[from Recovering from Parkinson’s by Janice Hadlock]

“Only if you understand what it is you are truly trying to change will you be able to rest easy in the knowledge that you are, in fact, healing from Parkinson’s disease after pause turns off. Your doctors and loved ones might assume you still have Parkinson’s disease until their snappy and highly inadequate visual assessment shows that you no longer have any residual trace of impaired motor function.

Doubt can cause people to re-invoke self-induced pause. Don’t.

You know the changes and healing you are going through even if no one else perceives them or acknowledges them. Savor them.”

Understanding that, I’m still drawn to list a few of the symptomatic adjustments that have taken place recently.

• Drool – flooded with the stuff three weeks ago, now gradually going dry – in fits and starts. Huzzah!
• Sleep – I’ve been getting a lot of it, alternating between bed and recliner depending on bedtime assessments too complex to describe here, and it is always so sweet. When I choose to sleep in bed it is because my body feels light and responsive, that I will be able to turn at will and with relative ease. When the body is heavy, I hope for no RLS and try the recliner. When neither works, I get a quick lesson in avoiding panic, and pace the hallway until the choice becomes clear.
• Walking – is still difficult but there are periods of grace in movement that I cherish. The past few days, I’ve been imaging myself dancing to the music of Hauser and Luka (also known as 2Cellos) and have often found improvement, even if briefly.
• Typing – not easy, but when I go very slowly, not impossible either.
• Poverty of movement – extreme most days (especially right after a nap) but only for selected actions. Some moves remain quick, others are glacial. And which is which will vary.

But I am learning to keep the pericardium energized, and when that is active symptoms seem distant and remote. Bouts of joy, daily appear. Senses are often so lively that I feel that I was wearing a bag over my head for decades.

See you in October! 

The photo is of me and Roman next to Mario’s uniquely decorated APE (three-wheel vehicle).

Sunday, August 20

Highlights (and lows) from the past three weeks…

The phenomena most visited has been a largely spontaneous stimulation of energy in the pericardium which results in periods of intense joy and rich sensation, most notably on August 2, 3 & 4, when smells, taste, and vision suddenly brightened. As well as a frequent and profound sense of safety. All of that continued for another week or more at a less intense level, possibly less intense because it became so familiar. 

During the night of August 5 I woke suddenly, and spontaneously experienced the five steps of turning off biological pause, clear and distinct, and lovely as quicksilver. For the next four days I could not resist sleep if I stopped moving for even a few seconds. On the afternoon of Wednesday 9, for fifteen minutes I was able to whistle (for the first time since 2002). 

Then for the next week, poverty of movement dominated, which makes eating with a fork equal in difficulty to typing. Sleeping varied from seemingly impossible to straight through in comfort, with an emphasis on the latter. My voice would go from strong to barely a whisper in seconds, without apparent cause. For a week since Thursday 10, walking was very bad. 

On Sunday 13, I started a regular practice of consciously energizing the pericardium and my gait has steadily improved. But after a few weeks relief, drooling returned in diluvian proportions. I felt in many ways that I was starting again from scratch, but didn’t exactly know what it was I’d been building. 

But every day this past week has been filled with social activity, and I generally held up well. On Sunday, I added to my walks a routine of climbing 18 steps at least once a day, and yesterday did so rather competently. Also yesterday, for the final lap of hallway walking, I suddenly straightened my back and took the lap with arms swinging; a small thing that inspires huge confidence (and something I was able to replicate during my hallway laps this morning; most of them). Also this morning, rowing was in very good form. Another confidence builder happened on Thursday when my guest Richard and I were invited to ex-neighbors Renzo and Patrizia’s new home for dinner, and was able to smell fish frying and fresh herbs, distantly but distinct.

I continue to sleep well and comfortably as I have for about ten days. There are still periods of mental fatigue which cause me to be grumpy. Restless leg syndrome is far more annoying than anything PD has thrown at me.

Richard has been here since August 11 and was thus able to afford Roman and his wife time at the beach with their daughter and grandkids. Another one of my caregivers, Iryna, returned with her daughter, Anna, to her husband in eastern Ukraine after 18 months here as refugees. I worry.

I have air conditioning, so find the weather delightful. See you again in two or three weeks.

Thursday, July 27

Today at the top of my walk in the garage, I experienced thirty seconds of good form, and it felt like it would continue to improve. Then Simbo — Orvieto’s cutest dog –trotted in, form collapsed, and I was unable to get it back. But the feeling of contentment those thirty seconds gave persisted through the evening.

Symptoms improvement that has lasted a week or longer:

• Urge to pee matches reality, no random leakage
• Ability to don earphones in one smooth gesture
• Daytime drool greatly reduced
• Freezing in place increasingly rare
• Tremors in arms and jaw significantly reduced

I feel hopeful.

Tuesday, July 18

I wish the bad typing symptom were not so active these days, I have a lot to say. To cut to the chase; tracking symptoms can be like becoming fascinated with what should be thrown out while cleaning the attic. But ever-changing symptoms of the past week aside, I have often had a familiar sense of deep security, and a recognition that recovery is real and ongoing. The symptoms are part of a healing process that accelerates in opposition to how deftly I can set them free. That being said, as of today symptoms have returned to default levels, and while I am certain that self-induced pause has been turned off (with periodic revisits out of habit) I’m not certain about biological pause, and if it isn’t off yet, what to do next. In the meantime, I wait for symptoms improvement to cycle around for a bit longer than five days, which seems to be the pattern.

[the following is from Stuck on Pause by Janice Hadlock]

“Biological pause from trauma sometimes fails to turn off automatically after the body stabilizes. In these cases, the Five Steps can be used as a prod to turn off pause. Sometimes, biological pause fails to turn off because the injury remains unhealed due to the severity of the injury or mental dissociation from the injury: the body cannot heal that which it doesn’t know exists. In these cases, treatment of the injury and/or re-association with the injury will often lead to spontaneous completion of the Five Steps.”

On his own Roman recited a list of improvements in my condition that he has observed in the past year or so; it was impressive.

Wednesday, July 5

My dear friend Cynthia is a certified acupuncturist, Chinese herbalist, and healer. When I asked her if I could fly her here from her home in New York, I had few expectations that she would have the time, but Janice had sent me instructions for how to treat restless leg syndrome that needed someone well-versed in Chinese medicine, and who speaks English. Cynthia said sure. She and her husband would be vacationing in Cornwall at the beginning of July, so she would arrange to come to Europe ten days early and spend them in Orvieto. I was thrilled.

Cynthia can feel a person’s qi, or vital energy – how it flows, where it is blocked, when it is running backwards – and was able to teach me to identify some of that phenomena myself. She gave me several hours of yin tui na each day. My sleep improved, I had hours of strong (if far from perfect) walking, my mood lifted, and gratitude soared to new levels. The RLS still bothers me but I am left with tools to deal with that myself.

What follows is from Recovery from Parkinson’s by Janice Hadlock and is profoundly true.

“Recovery symptoms are not a straight line. But to the extent that there is some degree of predictability, one can assume that return of fully normal motor function might be one of the very last things that occur during recovery. What might occur prior to a return of healthy motor function is resumption of nerve sensitivity, spastic, infantile motor function, back pain, heightened sensitivity in nerves that go to the bladder, exhaustion, and very often, an overwhelming, new sensitivity to heart feelings, and so much more.”

Cynthia also took this week’s photo.

Tuesday, June 27

Not a lot to report. Walking continued difficult except for brief and randomly occurring episodes, some of them in the middle of the night when a sudden lightness informed my gait. Sleep got better as the week moved on. Typing did not. 

A street exchange with my friend Massimo captured it for me the best.

“How are you?”

“I feel fine. Walking is difficult, but I’m good”

“I understand.”