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HIGHLIGHTS MARCH 15 – MAY 15

• Arm swing – April 7, my arms swung automatically for the first time in at least five years, a wonderful sensation; waiting for a repeat.
• Fluid movement around the house – March 29 for about a week, and occasionally for an hour or so at random. In fact, today increased movement has come and gone since rising at six.
• Heartfelt connection and joy on the street – March 30, regularly for about ten days afterwards, and occasionally since.
• Sometime in February – my left knee stopped hurting.
• Voice – strong for a few days, weak for a couple. Repeat.
• Restless Leg Syndrome – same as voice.
• Tremor – mild except under stress, will disappear for hours at a time.
• Sleep – typically one or two hours deep, two to four hours awake, three or four hours very deep; two-thirds in bed, one-third in chair. Sometimes I sleep 6-8 hours straight.
• April 26 – strong experience of Du channel and Ying Tang (third eye), repeating almost daily since.
• Walking is also various, changing from minute to minute. Janet writes of the importance of imagining how it feels to walk. Just yesterday I understood the “feels”part of that. It’s not just about mechanics, but needs to include the emotional and spiritual aspects of movement as well.
• My friend Joan passed away about three years ago. For the last year of her life I called her every Sunday to talk. “Just because I’m dead doesn’t mean we’ll stop talking”, she said towards the end. She’s been knocking at my door to be admitted as an invisible Friend ever since, and a few weeks ago I finally acknowledged that and let her in. It’s been good.
• Before mid-March my arms would lock up to the point of falling asleep after talking with someone for a half hour or more. That no longer happens.
• Every incident above should be qualified with “most of the time”.
• May 13, I fell in the salotto. Roman was there. I wasn’t hurt but struck my head on the floor so we called emergency services. Everyone was very kind. They did blood analysis, checked blood pressure, EKG, MRI, and an x-ray. All was well (and covered fully by insurance, not even a signature was required). I was pretty wobbly and slow until this morning. Since then movement has (mostly) been freer than usual. 

Thanks for checking, it means a lot to me!

BITS AND PIECES FROM (MOSTLY) FEBRUARY

As much as my mind would like to find them, there were no obvious trends or patterns to my experiences for the month. But a dozen tiny things (difficult to describe) have become easier. Overall, I feel like improvements are being made and that there is little advantage in trying to parse them down to statistical bytes. So that’s it for February! Thanks for checking in, and savor the coming spring.

JANUARY HIGHLIGHTS (and lowdowns)

• The first part of the month was marked by extreme poverty of movement around the house; the month ended with more fluidity.
• Voice was strong and clear 80% of the time.
• Sleep tended to follow this pattern: to bed at 02:00 for an hour, 90 minutes awake, back to sleep until 09:15, short nap at noon, hour to three hour nap at 13:00, repeat.
• In the main, clear headed and cheerful. 
• Post-nap zombidity wasn’t an issue much of the time, but when it hit, it hit hard.
• Nose, bladder, and drool were all relatively well-behaved, and got better as time progressed.
• Monday 13 – Morning walk impossible. Evening walk featured thirty seconds of energized pericardium and fluid walking that felt like where I should be all the time.
• Towards the end of the month the right arm tremor shrank to a pulse and the usual tightness relaxed somewhat.
• This has been my experience of late (from Recovering from Parkinson’s by Janice Hadlock) – “Again, of the four types of PD, people with Type I PD are the ones most likely to manifest the Parkinson’s personality. When they recover, they instantly drop much of that personality and become, in their own startled words, ‘back to my real self!’ This ‘real self’ turns out to be much less fearful, less inhibited, and less critical of others or self. It is more comfortable being around others and is, in turn, a lot easier to be around. For example, one recovered patient told me that she suddenly found herself talking un-self-consciously with her co-workers. She always walked every day with a group of them during the lunch break. She had always been careful to listen to each person in turn and then, when she deemed it her turn, she would say something that logically followed the previous speaker. After recovering, she suddenly found herself just saying whatever she felt like, and not worrying about whose turn it was. She was amazed at how much less work it was to be part of a conversation. Her contributions still made sense and were logical, but they were effortless. She wasn’t expending any energy ‘keeping track.’ She was able to laugh at how labored her previous socializing had been.”
• Towards month’s end I was able to drink a beverage down to the last drop without using a straw.
• State of mind definitely affects quality of movement.
• For the last few days I was able to do five or six laps on Via Costutuente which is slightly inclined and paved with stones (and moderately trafficked by pedestrians) where my usual was two or three. A few of those laps were basically automatic. 
• Getting out of bed, while still a challenge, continues to become easier.

DECEMBER QUICK DIARY

Monday 2 – Pretty good movement, all things considered.

Tuesday – Read a couple of my old scripts. Not bad. Gonna begin submitting again.

Wednesday – Slept a lot and well. Walking a mixed bag. The good right next to the bad in all movement.

Thursday – Slept hardly at all, therefore morning walk impossible. Nasal discharge, RLS, and saliva all revisited with a vengeance.

Friday – Shifting slowly from a frequently annoyed (however passive aggressive) personality, to a gentler more patient one.

Saturday – Movement is both more fluid and awkward. Up and down after 05:00 and finally slept in recliner for two hours after eight.

Sunday – Notwithstanding occasional phlegm, my voice has been clear all week.

Monday 9 – Walked seven laps in the garage picking up both feet and my head, most of the time. I’m so thrilled even my Italian improved.

Tuesday – A nearly as good repeat of yesterday, only on Via Costutuente which is paved with cobbles and on an incline.

Wednesday – Almost as good an evening walk as yesterday, except harder to keep my head up. Slept very little Tuesday night.

Thursday – Same as Wednesday for walking.

Friday – Slept eight hours in recliner almost without interruption. Severe poverty of movement the rest of the day. But oddly the evening garage walk was on a par with Monday. Voice continues strong.

Saturday – Walking was average for the week. Had a broad insight into how I have caused all this, but it’s too much to write down or explain. Some surprising moments of normal movement, brief but real.

Sunday – Morning walk was nigh impossible. Slept all afternoon. Evening walk better but with lots of shuffling. Extreme poverty of movement. Voice strong.

Monday 16 – Poverty of movement coupled with a strong walk on the sagrato; what gives?

Tuesday – Slept hardly at all, I was a wreck all morning. Evening sagrato was unremarkable either way. Fought discouragement all day; the fight has value.

Wednesday – Seek and you shall find. Ask and you shall receive.

Thursday – Am sleeping a lot, long recovery from nap, extreme poverty of movement. Walk not too bad.

Friday – Ditto Thursday

Saturday – Ditto Friday but with a weak voice and mild restless leg syndrome (RLS) from midnight to 7 am.

Sunday – Lots of sleep, otherwise as yesterday. Insights on automatic movement. Strong RLS.

Monday 23 – Lots of sleep. Very difficult to walk but other movement relatively fluid; feels like I’m turning a corner.

Tuesday – Lots of sleep. Very strong RLS lying in recliner

Wednesday – Lots of sleep. Was able to consciously relax RLS. Walking difficult.

Thursday – Ditto, except walking indoors was strangely easier. Strong voice.

Friday – Very little sleep last night, because there were no comfortable positions. No RLS!

Saturday – Marked reduction in anxiety; thank you Friend!

Sunday – Difficult walking, sleeping.

Monday – Walking improved through the day. RLS in the afternoon. All work on the computer is maddeningly difficult. Feeling frustrated.

Tuesday – Morning walk in garage barely possible, evening walk in garage a record eight laps in very good form. Around the house alone, extreme poverty of movement.

THURSDAY 5 SEPTEMBER

Gone symptoms still gone (restless leg, stabbing pains, snap jaw). There is great hope in that. If those symptoms can go away, so can others.

Around August 6, laps in the garage suddenly became fluid and consistently less difficult. With minor exceptions that continued for twelve days. I wasn’t able to test that properly in the street due to the extreme heat, and movement around the apartment was less fluid and unpredictable, but I actually looked forward to garage walks. My voice was strong and clear. Every day brought new surprises in ease of movement. It was great.

Then on August 18, it was suddenly difficult to walk again. Movement in general became a strain. In fact movement went back to what it was in late June, but I had become used to flow and going back was no fun. However, the “good” period was the longest I’ve had in years. 

On Wednesday 21^st my legs were suddenly very weak and poverty of movement was extreme. My voice was reduced to nearly a whisper. 

On Saturday my voice came back, strong and clear. Legs were made of jelly. Then the voice went away again. And so it stands, waiting for another cycle to begin.

MONDAY 22 JULY

The symptoms that were on the wane three weeks ago have effectively disappeared (save pee retention which is still in development). That makes me glad. 

On the other hand, on June 13 I was walking pretty well, then as often happens that fell to pieces on June 14. There were small rebounds over the next ten days, but the usual restoration hasn’t happened, and in fact movement in general has become much more difficult since then. 

The heart centeredness that happened last month has repeated itself since but at shorter durations. 

Then about a week ago I was shook awake from an afternoon snooze by a feeling similar to what I imagined a ten thousand watt circuit breaker would make that had been turned off. It left me breathless for several minutes, but there were no changes in symptoms. 

Poverty of movement is often severe but can change instantly. My friend has been repeating the phrase “freak thee not out!”

This afternoon I slid into a meditation on the pericardium. It was lovely then suddenly it shut off and I began trembling. This was coupled with a feeling of having entered a forbidden zone. That is the clearest indication I’ve had of a Blocker at play. Gotta work on that. 

SATURDAY 25 MAY

Celebrate the little things, thus has been the advice from my Friend for the last few weeks. Here are some little things:

• swallowing has become smooth, for at least three weeks now, and after several weeks of choking or almost choking daily.
• I was retaining my water for four and five hours at a time, after ten years of an urgent need to pee whenever I even thought about it. What freedom! Then it went away two days ago, but I have hope that it will return.
• limpness of muscles, especially the legs; I’ve experienced this before but never to such a degree. This is a recovery symptom so I try to view it gracefully.
• snap jaw gone; this is wonderful. 
• sharp pains in feet have gone from several times an hour to once or twice a day. This is also wonderful.
• on the other end, Sunday and I can hardly move – uncomfortable and annoying.

Typing is still difficult and my time at the computer has been taken up with other things, so these reports continue to be rare. Thanks for reading. Your support means a lot to me. Onward!

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