Category: Recovery

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.

Wednesday, May 3

The wake of Covid hit me hard. Little things I could easily handle two weeks ago (though perhaps impossible a year ago) are impossible again. Computer time is among the impossible, so I am taking a break. Be back soon!

Saturday, April 1

Slept an hour, awake for one, slept four. Fine sleep all of it, but not enough. Movement is an odd mix of almost dancing and uncontrolled weaving and reeling. The latter wins the day. I may be super limp again. Typing is a disaster! 

Sunday, April 2

I slept hardly at all last night, trying and failing to find a comfortable balanced position, until about 05:00 when I suddenly succeeded. I slept for an hour, then my brain tricked me with a faux reason for having to get up. After that it was back to trial and error for a half hour when I decided against alll hope to transfer to the recliner. Typically when I do that I sleep for twenty minutes then Restless Leg Syndrome kicks in (pun acknowledged) and I go back to the bed, but am often relaxed enough that I can find a comfortable position for sleep. This morning I slept in the recliner for more than three hours! No RLS. But at every hint of waking my body would stiffen into a plank and that would often be accompanied by full-body trembling (not a tremor). But neither would last more than a few seconds, so sleep was not interrupted. 

Breakfast, washing, and changing were all late, and Iryna had to go to her restaurant job early, so there was no morning walk, and as soon as Iryna left, I went back to the recliner to try for another bit of sleep like I earlier enjoyed. Same thing, only I slept a little less than three hours.

I am curious as to what form sleep takes tonight.

In my earliest exchanges with Janice, and based on photos I had taken of me in 2015 along with my descriptions of what I was experiencing with my health, she suggested that I had Types I & II Parkinson’s – according to her system outlined in Recovering from Parkinson’s. Type I is self-imposed and 90% of her patients have experienced it, and of Type II she writes: “almost any significant blockage along the Stomach channel might eventually cause the Stomach channel to flow backwards. Although most of my Type II Parkinson’s patients have had backwards-flowing Stomach channel qi due to a foot or ankle injury, other damage along the Stomach channel can also set the pause-type channel patterns in motion. For example, some of my patients have had Stomach channel qi blocked and flowing backwards due to an appendectomy scar.”

I have had a massive spider bite and a hernia repair on the left Stomach channel and have a large calcification on the right channel (where there was a fracture) just below the big toe. She advises working on Type I causes first, so I have been, but I think it is now time to turn attention to Type II. 

Monday, April 3 & Tuesday, April 4

Good sleep. Good row. Good walk. Good day. 

Wednesday, April 5

Something has shifted. The symptoms go marching on (for the most part) but I suddenly feel more open, energetically, less cautious, more emotionally relaxed. 

I’ve been asking Friend for several weeks if and when to proceed to turning off biological pause, and always received the same response: “you could safely start now, but wait at least until May.”

Friday, April 7

To my question of last Sunday (how does one know when Type I (self-induced) PD is turned off?) Janice replied: “when your heart is always overflowing with gratitude instead of self-assessment, then type I has turned off.” I bristled at the answer, a sure sign that it hit home. Yesterday, I convinced myself that Wednesday’s “shift” was an illusion. Today, I was graced with the shift again, and that revealed exactly what Janice was talking about. The day was characterized by a lightness and freedom that allowed me to accept the symptoms as a necessary part of recovery; exactly as they lie and regardless of whether or not I understand their progression. There is joy everywhere. And pushing for speed in recovery is not only inutile, it is counter-productive. 

Saturday, April 8

I slept extremely well last night, yet when I reclined for what I thought would be a twenty minute nap after lunch, it lasted ninety!

Friend keeps knocking at the door of my heart, and although sometimes I am not listening, he is very forgiving.

The day turned lovely, and my Ukrainian friends are extraordinarily kind.

I crave communication! Typing is trending easier, so if that continues I hope to get back to writing. It feels so close!

Sunday, April 9

Last night I watched the 1971 film of Fiddler on the Roof. It’s a masterpiece, damn near perfect. In fact, Chaim Topol’s Tevye is perfect; grounded, human, spot on in every moment. I later looked him up. He died exactly one month ago last night. All honor to his memory.

My feet are bouncy today. I don’t know if this is a trend or an outlier, and I am so curious to know which that I’m not hearing Friend’s answer to the question. Either way, it feels like a good thing.

The day leaned far enough towards spring that this morning people were dressed in Easter colors. By evening, after a few hours of a chill wind, the palette reverted to blacks and browns, but the streets were still festive.

I slept well last night and dozed my way through the afternoon. Walking away from home improved throughout the day. Typing is possible. I am unable to motivate working on my book, submitting plays, or studying Italian. I’ll try harder.

Buona Pasqua!

גוט פּסח

Monday, April 10

My feet remained bouncy until this morning, then walking on the sagrato not so much. But times last night I felt really relaxed – bouncy feet, arms moving, turning and changing direction without agonizing every move.

I slept well until 06:30 when I suddenly could not drag my leaden body into a comfortable position. So, I gave up and got up. As a consequence, I dozed away most of the afternoon.

Looking back on my life I see an ongoing conflict between my head and my heart (pretty normal, I suspect, but it played out in an exaggerated way). I believe that Janice’s advice earlier this week is about an internal adjustment that gives the heart a greater advantage (overflowing with gratitude) over the head (self-assessments). I’m trying to allow that shift. It feels right. Friend approves.

Tuesday, April 11

This afternoon I realized that these last several months have been the longest period of sustained happiness I have ever spent. I cry easily for both sadness and joy, and laugh lightly without being giddy. Knowing this was to discover an inner and inexhaustible spring. We walked five laps on the sagrato and (even though I’m sure I didn’t look the part) I felt like I was flying. Frustration and disappointment come and go like ocean waves. Such freedom!

Wednesday, April 12

I am embarrassed to report that after five this morning (and after only four hours interrupted sleep) I could not find comfort anywhere; not sitting, walking, or lying down. This cast a pall over the day following and made yesterday’s buoyancy seem suspect. But both are real, and every appearance of light is brighter and more golden.

Thursday, April 13

I didn’t even try going to bed until 3 am. I slept four hours, was up for a half hour, then slept until Roman woke me… at 11:15! He felt ill last night, so this morning he and is wife went for a Covid test. They both tested positive. Roman got by with light case, Maria got hammered. He and I will test together tomorrow morning. So anyway, I felt great until I took a twenty minute nap at around 15:00, and have been weak and wobbly ever since. Maria, Roman’s wife can do nothing but sleep. Natalia has it, too. Time will tell.

As the evening went on the wobbliness abated.

Friday, April 14

Roman is still positive, but feels fine. I tested negative but have a terrible cough and gallons of nasal discharge. We’ll test again, tomorrow.

This morning, especially, I experienced very clearly the heart-brain dichotomy. I felt great, but PD symptoms continued on their merry way; two distinct realities existing simultaneously. Friend says that by and by the heart will come to dominate.

Saturday, April 15

I tested positive this morning, spent the day coughing, and the night in the recliner waking up every thirty minutes to renew a cough drop. Remarkably there was no RLS at all, very grateful for that. Movement is glacial. One good thing about that is that several months ago movement was always glacial, and now I look back on Wednesday’s quality of movement with nostalgia.

Sunday, April 16

Slept all afternoon in the recliner and in two hour chunks; no RLS. Cough is milder and less frequent. There was a fever this morning that seems to have abated. Voice is reduced to a whisper. All walking involves the walker (with the exception of the acupuncture aftereffects debacle, for the first time since last summer). RLS returned with a vengeance in the evening, and with the random exception of a two hour period at around 03:00, plagued me all night, until I gave up on the recliner at five, and slept surprisingly well on bed for three hours.

Monday, April 17

Was able to pace the hall and do some exercises for about a half hour. Tried to rest in the vibrating chair but RLS was too strong to allow comfort or sleep. I managed to get a few winks in after lunch. I have lost so much mobility in the last few days! Presumably it will return in the next week. I hope so!

Tuesday, April 18

It was 02:00 before I felt reliably tired enough to sleep, and I chose the bed (RLS was too active for the recliner). Slept wonderfully until 06:00 when suddenly all positions turned quickly to discomfort, this regardless of the fact that each position was heavenly until my mind poisoned it. I never really slept again until two blissful hours after lunch, which were remarkably free of RLS. 

Something significant was noted until the six o’clock hour, I stopped being angry. I didn’t realize I had been, until something relaxed. I’m not sure where I’ve been on that spectrum since then, but it was quite remarkable.

Today, we designed a walk and exercise pattern for the hall that mimics our walks on the sagrato and garage, only miniature. That helps a lot. Being always at home and without programmed movement is the worst of it, so I am happy we are able to work around.

Wednesday, April 19

I’m feeling the effects of not being outdoors in spring. I don’t like it!

Roman retested positive this morning, but is feeling fine.

We heard from a friend who had been in bed with a 40 degree fever for ten days; it drove home how fortunate we are with our merely annoying coughs and insomnias.

Janice sent me here: www.covidtreatment.info. She suggested the mid-brain treatment asap, so I tried, and even though I can’t really manage the pressure points on my own, there was an immediate benefit. I’m due for retesting on Friday, and Susan is lined up to put me through the protocol as soon as I test negative, in the meantime I will do it as I am able on my own. Just trying to imagine explaining it all to Roman so he can help makes me dizzy. 

Roman tells me that my hands and feet are at ambient temperature, shoulder knots are gone.

Thursday, April 20

Roman let me sleep this morning so I could get back on track. It was wonderful enjoying a good night’s sleep, but I napped anyway and was groggy most of the day. I spent the day wanting to take a good long hike to wake myself up, but gratefully walked the hall at home which helped a bit.

After three hours last night, I woke afraid of going back to sleep because I had dreamt about listening to a full performance of Rhapsody in Blue, and had convinced myself that I would listen to it again and again if I did. (I love Rhapsody in Blue, by the way.) That kept me awake for at least an hour before I relaxed that fear and let myself drift. Every night it is something like that.

Friday, April 21

Slept until 04:30. Awake until 06:00 convinced there was no position comfortable enough to invite sleep, then slept soundly four hours. Getting up after first sleep was so difficult that it was borderline traumatic.

We did our pacing of the hall routine, not as solid or easy as it was since Wednesday, but not bad. Took an hour nap after lunch, and right afterwards movement was stunningly smooth, so I thought it would be a good time to do the monthly change of contact lenses. Didn’t turn out that way. Felt over heated, the grace of a few minutes prior disappeared, tremors ruled the day. When Roman came in at five we tried the walking routine and it was almost impossible even to lift a leg; a total about face from this morning and since Wednesday. Maddening.

Saturday, April 22

Last three plus hours of sleep were spent in the recliner. I woke practically immobile, and went in an out of frozenness for hours more. Felt terrible most of the morning. Lost all of Wednesday’s fluidity. Life is tinged with panic.

Natalia took me to Piazza Gonzaga where we did two rounds (with her arm as support) for a total of 800 steps (as opposed to 25 steps per round at home). That helped a lot with everything. I still feel on the edge of panic but also feel more secure that I can avoid it. 

I avoided panic, but was wide awake and uncomfortable until four, when I took ibuprofen and slept in the recliner until nine. I woke confused and hardly able to move.

Sunday, April 23

Movement of all kinds remained difficult and massively uncomfortable for the rest of the morning. Natalia forbade use of the word uncomfortable (she says it means nothing) so I settled for feeling horrible. That works.

She was kind enough to do the pressure point treatment for Covid (the main exercise). Not sure what happened.

Took an evening walk towards San Giovenale. It was arduous. So is sitting to type this, My walking is on a par to what it was a year or more ago. Friend says the walking will improve.

Monday, April 24
This has been the hardest and most wonderful week of my life. Hard: watching mobility and comfort reduce daily. Wonderful: constantly telling my Friend how much I love him, and realizing it’s true and always fresh.

God bless us all, every one!

Tuesday, April 11

This afternoon I realized that these last several months have been the longest period of sustained happiness I have ever spent. I cry easily for both sadness and joy, and laugh lightly without being giddy. Knowing this was to discover an inner and inexhaustible spring. We walked five laps on the sagrato and (even though I’m sure I didn’t look the part) I felt like I was flying. Frustration and disappointment come and go like ocean waves. Such freedom!

Wednesday, April 12

I am embarrassed to report that after five this morning (and after only four hours interrupted sleep) I could not find comfort anywhere; not sitting, walking, or lying down. This cast a pall over the day following and made yesterday’s buoyancy seem suspect. But both are real, and every reappearance of light is brighter and more golden.

Thursday, April 13

I didn’t even try going to bed until 3 am. I slept four hours, was up for a half hour, then slept until Roman woke me… at 11:15! He felt ill last night, so this morning he and is wife went for a Covid test. They both tested positive. Roman got by with light case, Maria got hammered. He and I will test together tomorrow morning. So anyway, I felt great until I took a twenty minute nap at around 15:00, and have been weak and wobbly ever since. Maria, Roman’s wife can do nothing but sleep. Natalia has it, too. Time will tell.

As the evening went on the wobbliness abated.

Friday, April 14

Roman is still positive, but feels fine. I tested negative but have a terrible cough and gallons of nasal discharge. We’ll test again, tomorrow.

This morning, especially, I experienced very clearly the heart-brain dichotomy. I felt great, but PD symptoms continued on their merry way; two distinct realities existing simultaneously. Friend says that by and by the heart will come to dominate.

Saturday, April 15

I tested positive this morning, spent the day coughing, and the night in the recliner waking up every thirty minutes to renew a cough drop (this in addition to the prescribed cough medicine). Remarkably there was no RLS at all, very grateful for that. Movement is glacial. One good thing about that is that several months ago movement was always glacial, and now I look back on Wednesday’s quality of movement with nostalgia.

Sunday, April 16

Slept all afternoon in the recliner and in two hour chunks; no RLS. Cough is milder and less frequent. There was a fever this morning that seems to have abated. Voice is reduced to a whisper. All walking involves the walker (with the exception of the acupuncture aftereffects debacle, for the first time since last summer). RLS returned with a vengeance in the evening, and with the random exception of a two hour period at around 03:00, plagued me all night, until I gave up on the recliner at five, and slept surprisingly well on the bed for three hours.

Monday, April 17

Was able to pace the hall and do some exercises for about a half hour. Tried to rest in the vibrating chair but RLS was too strong to allow comfort or sleep. I managed to get a few winks in after lunch. I have lost so much mobility in the last few days! Presumably it will return in the next week. I hope so!

Wednesday, April 5

Something has shifted. The symptoms go marching on (for the most part) but I suddenly feel more open – energetically – less cautious, more emotionally relaxed. 

I’ve been asking Friend for several weeks if and when to proceed to turning off biological pause (which needs to happen after turning off Type I), and always received the same response: “you could safely start now, but wait at least until May.”

Friday, April 7

To my question of last Sunday (how does one know when Type I (self-induced) PD is turned off?) Janice replied: “when your heart is always overflowing with gratitude instead of self-assessment, then type I has turned off.” I bristled at the answer, a sure sign that it hit home. Yesterday, I convinced myself that Wednesday’s “shift” was an illusion. Today, I was graced with the shift again, and that revealed exactly what Janice was talking about. The day was characterized by a lightness and freedom that allowed me to accept the symptoms as a necessary part of recovery; exactly as they lie and regardless of whether or not I understand their progression. There is joy everywhere. And pushing for speed in recovery is not only inutile, it is counter-productive.

Saturday, April 8

I slept extremely well last night, yet when I reclined for what I thought would be a twenty minute nap after lunch, it lasted ninety!

Friend keeps knocking at the door of my heart, and although sometimes I am not listening, he is very patient and forgiving.

The day turned lovely, and my Ukrainian friends are extraordinarily kind.

I crave communication! Typing is trending easier, so if that continues I hope to get back to writing. It feels so close!

Sunday, April 9

Last night I watched the 1971 film of Fiddler on the Roof. It’s a masterpiece – damn near perfect. In fact, Chaim Topol’s Tevye is perfect; grounded, human, spot on in every moment. I later looked him up. He died exactly one month ago last night. All honor to his memory.

My feet are bouncy today. I don’t know if this is a trend or an outlier, and I am so curious to know which it might be that I’m not hearing Friend’s answer to the question. Either way, it feels like a good thing.

The weather today leaned far enough towards spring that this morning people were dressed in Easter colors. By evening, after several hours of a chill wind, the palette reverted to blacks and browns, but the streets were still festive.

I slept well last night and dozed my way through the afternoon. Walking around the house was more fluid than usual, and walking away from home improved throughout the day. Typing is possible, but I am unable to motivate working on my book, submitting plays, or studying Italian. I’ll try harder.

Buona Pasqua!

גוט פּסח

Monday, April 10

My feet remained bouncy until this morning, then while walking on the sagrato, not so much. But at times last night I felt really relaxed – bouncy feet, arms moving, turning and changing direction without agonizing every move.

I slept well from 01:00 until 06:30 when I suddenly could not drag my leaden body into a comfortable position. So, I gave up and got up. As a consequence, I dozed away most of the afternoon.

Looking back on my life I see an ongoing conflict between my head and my heart (pretty normal, I suspect, but it played out in an exaggerated way). I believe that Janice’s advice earlier this week is about an internal adjustment that gives the heart a greater advantage (overflowing with gratitude) over the head (self-assessments). I’m trying to allow that shift. Friend approves.

Tuesday, March 28

For the past several days, sleep has been off-kilter and out of whack. Last night was no exception. So walking in any venue was really hard, today. Should I close my eyes anywhere, I was asleep in under a minute. Anywhere except in bed, and at night, that is. I think it’s RLS. Suddenly, a position that has promoted sound sleep for several hours turns unacceptable, and once up I have to pace for a long time. And the day that follows is wasted.

Wednesday, March 29 & Thursday, March 30

Slept better, but still not quite enough. RLS was largely quiet, but there was still lots of pacing the hall to relax tense muscles. Normal walking feels a slight mental adjustment away, but I can’t actually find the adjustment. Drool is less, typing not good but better than it has been, tremor only shows up when I am stressed. There is no better entertainment than walking, and I miss being able to walk when I want to; movies and books are no substitute. Voice and verbal expression are both strong (Italian comes and goes).

Friday, March 31

Maria Rosaria gave me the bi-monthly pedicure today. She did all the usual things to the horribly painful callous on the bottom of my right big toe, then gave me a stretchy latex “brace” to protect it. The pain ceased. Being free of that pain afforded an immediate improvement in my walking.

Overheard conversation:

FRIEND: You need to relax.

ME tries to relax his arms and legs.

FRIEND: Not just muscles, internally as well. You’re always on the lookout. Those metal habits are a part of why you are experiencing the suite of syndromes known as Parkinson’s.

The arms are swinging a bit when I walk. Janice says; “…spontaneous arm movements. That’s your brain trying out some new, effortless (dopamine-based) moves. Dipping a toe in the water, as it were. Congrats!”

Saturday, April 1

Slept an hour, awake for one, slept four. Fine sleep all of it, but not enough. Movement is an odd mix of almost dancing and uncontrolled weaving and reeling. The latter dominates. I may be super limp again, I’m not quite sure. Typing is a disaster! 

Sunday, April 2

I slept hardly at all last night, trying and failing to find a comfortable balanced position until about 05:00 when I suddenly succeeded. I slept for an hour, then my brain tricked me with a faux reason for having to get up. After that it was back to trial and error for a half hour, when I decided against all hope to transfer to the recliner. Typically when I do that I sleep for twenty minutes then Restless Leg Syndrome kicks in (pun acknowledged) and I go back to the bed, but am often relaxed enough from the nap that I can find a comfortable position for sleep. This morning I slept in the recliner for more than three hours! No RLS. But at every hint of waking my body would stiffen into a plank and that would often be accompanied by full-body trembling (not a tremor). But neither would last more than a few seconds, so sleep was not seriously interrupted. 

Because Iryna let me sleep, breakfast, washing, and changing were all late, and Iryna had to go to her restaurant job early, so there was no morning walk. As soon as she left, I went back to the recliner to try for another bit of sleep like I earlier enjoyed. Same thing, only I slept a little less than three hours.

I am curious as to what form sleep takes tonight.

In my earliest exchanges with Janice, based on photos of me from 2015 and my descriptions of what I was experiencing with health, she suggested that I had Types I & II Parkinson’s – according to her system outlined in Recovering from Parkinson’s. Type I is self-imposed and 90% of her patients have experienced it, and of Type II she writes: “almost any significant blockage along the Stomach channel might eventually cause the Stomach channel to flow backwards. Although most of my Type II Parkinson’s patients have had backwards-flowing Stomach channel qi due to a foot or ankle injury, other damage along the Stomach channel can also set the pause-type channel patterns in motion. For example, some of my patients have had Stomach channel qi blocked and flowing backwards due to an appendectomy scar.”

I have had a massive spider bite and a hernia repair on the left Stomach channel and have a large calcification on the right channel (where there was a fracture) just below the big toe. She strongly advises working on Type I causes first, in fact warns: “Hopefully, this will help convince people with Parkinson’s who intend to recover that they must recover from self-induced pause before they work on any injuries along the Stomach or Du channels.” My question is how, if Type II displays symptoms, do I know that I am recovered from Type I. 

Monday, April 3 & Tuesday, April 4

Good sleep. Good rowing. Good walking. Good typing. Good days. (“Good” in all cases is a relative term.)

Tuesday, March 21

Not as flowing as yesterday, but there are little things that remain easy where that is not usually the case. And joy. Lots of it. And everyone is excited about spring.

Wednesday, March 22

Could walk hardly at all in the morning, a result, I think, of not sleeping except in one and two hour chunks. But Roman and one of the guys from Opera del Duomo spent a good deal of time discussing how I could get in to see the Zubin Mehta concert on Friday, which touched me so deeply that it was all I could do not to cry.

The evening walk was almost the usual.

Thursday, March 23

I slept what has become my standard pattern, but was (almost virtually) asleep on my feet all day until shiatsu at 16:30 when I was able to sleep lying down. Morning walk was wiped out by the callous on my big toe; the pain overrode all good intentions. The same happened on the evening walk.

Friday, March 24

Slept until almost 10:00 having fallen asleep for good at 03:15. Then I sat for more than four hours around and at the concert at the Duomo without a hint of RLS, which is close to miraculous. Walking before and after that was a bit weird, unhinged, and random.

Saturday, March 25

After shiatsu on Thursday, Michele said that my muscles were exceptionally relaxed. Yesterday and today walking was (technical term) weird. Especially at home where there was actual, spontaneous arm movement; not coordinated or rhythmic and totally random, but still. Today walking the sagrato was similar but difficult and the arms were tight, as usual, and symptoms are as annoying as ever; weak voice, stammering, drooling, typing a mess, all of which had retreated earlier in the week. But RLS is largely absent or at least mild. What is happening??? Don’t know.

Sunday, March 26

When I have to pace at night in order to sleep (which lately is all the time) I ask for, and follow, Friend’s instructions. 

This was overheard Saturday night:

ME: How many laps or for how long a time?

FRIEND: Walk until you are walking normally.

ME: You mean without symptoms?

FRIEND: Yes.

ME: That could take weeks.

FRIEND: Yep.

ME: You can’t mean that.

FRIEND: I do.

ME walks for a long, long time. Buried in all that pacing are a few steps that are perfectly normal.

FRIEND: There! Did you catch those?

ME: Yes. And?

FRIEND: Repetitive action is difficult for you at first. Work on those. You can stop now.

Monday, March 27

Yesterday I attended a concert at Teatro Mancinelli. There was frequent clapping. Being repetitive action, clapping was difficult, but gradually I learned (again) and was able to do it.

Symptoms, so strong on Saturday, are now quite mild. RLS is lurking in shadowed corners, ready to pounce.

Attention must be paid to the subtlest changes. I am beginning to notice how the physical responds to the mental. And how even a butterfly’s fluttering of love can have a monumental effect. Just beginnings, but real.

Tuesday, March 14

Sleep eluded me until 07:00 – I simply was not sleepy. At seven I sent Roman a text “If I am sleeping, let me be,” so I got four hours in. I napped an hour quite easily and am a bit anxious that my energy level threatens a repeat of last night. Other than the usual mobility and typing problems, I feel good.

Wednesday, March 15

I was in and out of bed until 04:00 then I slept a sound five and a half hours, but I was still half asleep until a brief chair nap just before lunch. For the rest of the day agility – therefore typing – was better than usual. Walking was a mess. Posture made me feel like a wadded scrap of paper with toothpicks for legs. So, while I could type fairly well, sitting at the desk left my neck and shoulders screaming with pain after about an hour. I took a couple of brief naps to rest the muscles, and woke only slightly zombified; so that was progress.

Thursday, March 16

An almost exact replica of yesterday.

Friday, March 17

Another day like Wednesday except walking a bit better and typing worse. 

This dialog happened with Friend.

FRIEND: You are minutes away from full recovery.

ME: How many?

FRIEND: How many what?

ME: Minutes. Three? Ten thousand?

FRIEND: All I’m saying is you are very close. 

ME experiences a warmth is the region of the heart, and is distracted by other things, but on the evening stroll there were lots of moments of joy.

Saturday, March 18

This dialog happened today.

ME: So, nothing yet, you must be talking thousands of minutes.

FRIEND: I mean minutes once you’ve let go of habitually retreating to pause-like mentality.

ME: How do I do that?

FRIEND: It’s a matter of love.

ME experiences love light again, only stronger and broader than yesterday, then it also fades.

ME: I can’t hold onto it!

FRIEND: No you can’t.

On the evening stroll, joy is rampant.

FRIEND: You can give up the bean counting, too.

ME: Was all that joy stuff me changing my mental habits?

FRIEND: You’ll see.

ME: It doesn’t last very long.

FRIEND: You don’t know that.

Sunday, March 19

Limp, all day and into the evening. Could barely move, let alone walk. Not rigid and not really unpleasant. Internal as well as external. Mental as well as physical.

As the evening unfolded, the limpness of water became the flowing of honey, and while I still walked like a duck, there was some strength in the waddle.

Monday, March 20

Two strong sessions with the rower, and two really good walks in the garage.

A series of five minute naps sitting in the recliner zombified me completely, but I was able to recover in just a few minutes, and that left me feeling like I’d been visited by a miracle.

Typing is a mess. Joy is frequent, simple, and loving.