Category: Recovery

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.

Wednesday, May 30, 2023

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

…In the hours after I was diagnosed with Parkinson’s, I tried telling myself not to worry: I had seen people recover from this syndrome. I knew what to do. But louder than any voice of reason was an inner voice that took me by surprise. It kept saying, “I won’t be one of the lucky ones. I won’t recover. I’m different…”

…I actually stopped my pacing and stood stock still. “What if this weird, self-defeating voice is part of the Parkinson’s disease syndrome?” I asked myself… “This attitude is utterly not like my normal personality. What if this new, negative voice has something to do with Parkinson’s disease?”… I just had to wonder, “What if my having Parkinson’s disease is going to help me figure out what’s at the root of the backwards flowing channels and the bizarre mental attitudes of my patients with PD? What a fantastic opportunity for learning about the mental state of people with Parkinson’s!”

I was simultaneously grateful … for the opportunity to further my research by having Parkinson’s myself, and dismayed by what I knew would be the end of my life as I knew it. Because I knew I was not going to recover. I would not be one of the lucky ones. I was wrong, of course, but I couldn’t know that at the time.

…I had always been displeased when patients wallowed in self-pity and negativity. It was obvious that their own attitudes could prevent them from healing. But that’s what I was doing now! Deeply concerned by my new, negative attitude, I decided that I must immediately go into my meditation room … until I was absolutely grateful for the life-cards I was being dealt… A few hours later, I no longer had Parkinson’s disease. I also no longer had any interest in being strong, stoic, and independent to the point that I was apart from humanity.… Those things suddenly felt like distant history.

I quote this because it is in many ways similar to my experience. I have periods of being almost proud of my PD symptoms, so attached am I to my own suffering. But lately, the daily periods of joy leave me indifferent to the symptoms. I realize that I am actually quite healthy and that the symptoms are a part of the process of balancing a system that has been distorted for decades, and my heart stands clear and pure and ready. 

PS – I’m back to working on my novel. Slowly, slowly, but daily.

Monday, May 22, 2023

This past week was characterized by daily bouts of joy. Clean, expansive, wide open and self-born joy. Symptoms persisted, but they felt increasingly trivial and superficial.

Thursday and Friday of last week were noteworthy for good quality of movement. In walking it was easy to pivot and turn, and I could go through doors and make small adjustments to my stance without freezing. In typing, I could write a line or two accurately and smoothly. At night I was able to turn in bed and easily find comfortable positions. Saliva and nasal discharge were at normal levels. I could hold my pee.

And much, much more. It felt like PD was thinking of jumping ship!

Over the weekend most of that went away.  Friend advises patience.

[all of the following is from Recovering from Parkinson’s by Janice Hadlock]

When I say a person “recovered from Parkinson’s instantly,” which is not unusual, I mean that the driver behind the symptoms of Parkinson’s completely ceased and didn’t ever return. The use of pause mode and the accompanying neurological inhibitions such as inhibition of dopaminerelease for motor function, an oppressive sense of joylessness, or even a sense of impending doom were instantly gone. When I say a person recovered instantly, I mean that the circuitry of pause turned off instantly. And it didn’t come back.

…

People whose underlying cause of Parkinson’s had ended could not suddenly move as easily as they had twenty years earlier. There were repercussions from their years, maybe decades, of having been on pause mode.

Being on pause is like being in a war. People with Parkinson’s are in a relentless, long-term war. Their muscles, brain behaviors, joints and skeletal structure are under constant attack in the sense that they are no longer receiving their normal support and supplies of energy. Some of their body and brain parts are essentially being starved and being allowed to fall apart. Muscles have atrophied; nerves have gone dormant. The brain’s motor imagining area – a crucial area for automatic movement, has become dormant due to non-use.

When a war ends, life does not instantly return to normal. Rebuilding after a war might take some time. How much time it takes depends on how much damage was incurred. Still, the post-war peace is glorious. You can celebrate and declare “The war is over!” even if much rebuilding isnecessary.

…

[I think I may be here.]

Also, although many people turn off pause in a flash, many others turn off pause gradually. Some people turn off self-induced pause gradually, some even going two steps forward, one step back, for months or years. They might find at first that they have odd moments, now and then, during which they feel different – not on pause. In these moments, the mind is more relaxed and movement in some parts of the body feels more fluid. If a person keeps up or intensifies his mental self-therapy, these moments gradually increase in frequency and duration. Eventually, these people find that they are using self- induced pause mode only once in a while, usually when they are concerned about something. The people who recover  gradually, who turn off pause in fits and starts instead of instantly, might have a harder time believing, at first, that something is changing for the better. Even when their use of self-induced pause mode occurs very infrequently, maybe once a week for a few hours, they tend to be terrified, each time, that their Parkinson’s has returned as strong as ever. Even so, they can eventually recover fully and have no more relapses.