Category: Recovery

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.”

Tuesday, June 20

A shift in self image occurred last Thursday from old guy fighting to walk to a forever youthful man facing a surmountable challenge; that lasted a couple of days, then returned for brief periods. Mousing became easier for the day, a really welcome change. 

More or less simultaneously the energy surges reported last week have become routine, repeating themselves dozens of times daily, most often deliberate, sometimes on their own. 

On Saturday’s morning walk everyone we passed looked odd and misshapen. That evening, they all looked like movie stars. Attitude is everything.

Also randomly, a fluidity found its way into movement from time to time, nothing dramatic to look at, but wonderful to feel. On the other hand yesterday and today movement of any kind has been extremely difficult. On the other hand, I’ve been giggling at my body’s foolishness. Attitude.

For my fellow travelers and for friends who are feeling super nerdy, attached is a comparative taking stock of symptoms. Disclaimer: no sooner do I “finish” the list than the particulars change, so this is a snapshot of an ongoing parade, generally reflective, but not a scientifically accurate report. Click here to be overwhelmed.

“Doctors see Parkinson’s as a problem of motor function and a problem of tremor, only. Because of this, doctors and patients alike usually only look for a return to motor perfection or cessation of tremor when they look for evidence of recovery. But normal motor function and cessation of tremor might be the last changes to be realized.” [from Recovering from Parkinson’s by Janice Hadlock]

Tuesday, June 13

Sunday evening while standing up from the recliner, I spontaneously felt a surge of energy go up my spine, join light flowing into the medulla oblongata, spread over the thalamus and striatum to the yin tang, and down onto my upper lip. The next five or six steps from chair into hall were smoother and more fluid than I have felt in years; alternate distribution of weight, better posture and balance, looseness in the arms. I said, out loud “is it really that simple?” and Friend answered, “yes, that simple!”

I’ve tried replicating the sequence since then with mixed results, but am nevertheless encouraged. Oddly, I can’t come close to reproducing those strides on formal walks in garage or at the Duomo, but can, from time to time, while pacing the hall. Part of that may be due to antibiotics I’ve started to clear up an ear infection; they always make me groggy and vague. But even though today has been especially dopey, last evening I picked three things up from the floor without leaning on anything to do it! That would not have been possible last Saturday.

Tuesday, June 6, 2023

Somewhere in the www.pdrecovery.org literature is discussed the necessity of regularly visualizing what it feels like to walk normally and automatically in order to hasten restoration of movement during recovery. I’ve tried this while seated (I fall asleep) and while walking (I get distracted or self-conscious with other people around) or while pacing the hall (I forget or mentally wander). This week I realized that my pacing sessions are regular, solitary, and numerous, so it would make sense to somehow attach the visualizations to them. 

I begin each lap sitting in the bedroom, so I decided to take a minute before standing to imagine what it feels like to walk vigorously and freely, then on the way to the kitchen to pause at doorways to refresh the imagery. And it worked! The improvement is often immediate (though probably would not be to an outside observer) and sometimes carries over into the next session. And it is easy to remember and to sustain, already connected, as it is, to a well-established habit. 

I’d recommend this format to other PD’ers (if they can visualize and walk on their own), regardless of what path of treatment they are on. It’s not a steady improvement, but over time it will benefit.