Tuesday, July 26
Wasted and weird followed as dominant themes from yesterday. Needed to pace the hall a lot. Typing is problematical, mobility comes and (really) goes. Sometimes movement is super slow. Patience.
Wednesday, July 27
Last night while watching a movie, I was feeling a lot of tension in my chest muscles, so intermittently began pounding my chest like a gorilla. That solved the issue and felt really good. I woke at 02:30 with a similar problem, so applied the same technique. I noticed two things. A few seconds of pounding is all I could do before I lost rhythm, but a pause would allow it again. And the exercise energized my whole chest cavity and heart region in a very pleasant way. Furthermore, the energy was associated with dopamine and adrenalin production, and seemed disassociated from use of pause mode.
After playing with this phenomenon for a half hour or so, I could easily distinguish between use of sympathetic/parasympathetic (normal) brain behavior and pause mode behavior. I came to theorize that walking was sometimes stabilized by my use of pause mode, and that the occasional “crashes” that I experience were due to the unsustainable nature of pause. I further realized that all symptoms are recovery related – a part of the healing process – which is why they can change so dramatically and so quickly. (The remainder of the week has made it difficult to remain quite so positive.)
Thursday, July 28
You know that gorilla pounding that felt so good? Well, early this morning I tried it again and could barely do it at all. Later (I don’t remember when) I could do it if it was done with a lot of force. During the day I could do it rather well sitting at my desk, but hardly at all sitting on the edge of the bed. That’s a snapshot of this journey that captures its craziness perfectly. Interspersed with all of that were moments of feeling energy moving in all the right places, of being so lumpish it felt like I would never walk again, of pacing the hall like a young man, of taking several long minutes to get out of a chair or to change direction on my feet, of bouncing up with hardly a thought. All of which leads nicely into this next quote from Stuck on Pause by Janice Hadlock.
“A person who is starting to recover might go through swings: going from safe and moving easily, to being on pause and being tight, tremoring, and with inhibited movement. A person might have these swings several times per day, or even per hour. Whether or not one is recovering is not a question of the Parkinson’s symptoms getting weaker – it’s a question of whether or not a person is increasing his use of a new, healthy, mental posture of being safe or oppositely, is continuing and/or even increasing the use of his pause habit. When he uses the fear-based mindset, all the linked symptoms of pause might re-appear, as strong as they ever were, even if he’s using them less often. The actual strength of the symptoms, at any given time, will vary in intensity, just like they did before the person started working on recovering. If the person on pause is somewhat relaxed, the symptoms might be minimal, if present at all. As tension or stress mounts, the intensity of the symptoms will increase. After all, this was the case prior to starting recovery, and it will be the case during recovery, whenever a person uses pause mode.”
Friday, July 29
I slept well, as usual, and also as often is the case, not enough. Initiating movement was very difficult and slow for the first half of the day. How I felt reminded me of what it was like during withdrawals of more than a year ago. It’s not new, this symptom, but that it appears now is strange to me. Friend says it will pass as quickly as it arrived, but I don’t really know what’s going on and am almost totally unable to explain or describe how I feel to anyone around me. The question “how do you feel” is asked with genuine concern, but I don’t know how to honestly respond in detail without overwhelming the listener, so I generally respond “I feel fine,” which is true as far as it goes but fails to touch on why I am moving so slowly or why I tire so easily. Then add to that the lack of nuance I can bring to the conversation because I am usually limited to Italian, I get frustrated which negatively informs how I behave and feel.
From Stuck on Pause by Janice Hadlock:
“If you understand how the brain works, how it retains its links and its habits and how symptoms don’t necessarily weaken or diminish, but might reappear full force every time that the pause mindset kicks in, you will understand what is happening if you take a ‘step backwards’: when a negative thought triggers all the usual, detested links. You won’t need to panic that you’re getting worse or that you have made no progress. You aren’t getting worse. That’s not the case at all. If you’ve had even a few interludes of safety and lightness, if you are improving your relationship with your Friend to the point that you sometimes feel safe, you are making progress. The sudden reversion back into your old mindset and the concomitant re-appearance of symptoms might have been jarring because you’re starting to be comfortable with the new way of thinking. You’re starting to enjoy some time when you are genuinely relaxed and maybe going through recovery symptoms now and then. So any return to the Bad Old Ways will be even more alarming than it used to be. Don’t let that alarm overtake your mind. You need to resume talking to your Friend and working on feeling safe. If you were starting to have moments of feeling non-paused, so that your temporary reversion felt worse than ever, then you are making progress. If and when you fall off a horse, you need to just get back on. Don’t choose to fear all horses.”
Saturday, July 30
Roman and Maria leave tomorrow for a week’s vacation with their three grandchildren. They are going to the sea, I’m not sure which one. A Ukrainian lady and her seven year old daughter are tending me for the week; Irina and Anna. They are staying in town with an aunt. When Russian shells landed near their apartment building and the impact blew out the windows, she and her husband decided it was best to remove Anna from the terrors around her. Their home is in eastern Ukraine. The three months they’ve been here is the longest Irina and her husband have been apart. She is a teacher of English. This evening Roman dropped by so I could meet his grandkids. I am so blessed.
Last night, between first and second sleep, I discovered that sometimes swinging my arms released energy in the spine and into the head, so I swung my arms a lot. It felt wonderful. It also made me aware of how bunched up my body is. Between swings I adjusted posture to stack up comfortably. That felt good too, but I couldn’t actually do anything like walk – or even swing my arms – and still remain upright. Today terrible immobility accompanied every attempt to change direction. Me and my Friend have theories as to why, but are going to let them mature before sharing.
Sunday, July 31
tI didn’t display good sleep patterns last night, so when Irina tried to wake me at 09:45, I asked that we skip the morning walk so I could score another half hour of sleep. To make up for the abandoned stroll, she massaged my legs, back, and shoulders, and now I know why the Ukrainian nation was able to survive Hitler and Stalin, and will prevail over Putin. Strong people who don’t countenance self pity.
Limpness is a recovery symptom, and the word describes well my main characteristic of movement for the past week. The arm swinging that was so satisfying a few days ago is now extremely difficult to do. Gorilla pounding? Forget about it. I ask Friend for constant advice on how to navigate from point to point in the apartment because his advice is always spot on, and is a healthier alternative to living in fear from handhold to lean. Janice says that periods of limpness are the most likely times for her patients to give up the fight. This is my third or fourth experience of limp (and the most undeniable) and I can totally understand wanting to throw in the towel. The onset is rapid (over a week’s time or less) and it is more pronounced with each appearance. Until today. That’s not to say that I’m jogging about the apartment, but I do feel lighter and changing direction feels a tad less impossible. And typing is improved. For now.
Yesterday’s theory waiting to mature is well-articulated in Janice Hadlock’s Recovering from Parkinson’s:
“An hypothesis: when a person has been on pause and the channel qi has been flowing backwards for years, various sectors in the motor imagining area in the brain becomes dormant. People with Parkinson’s, for the most part, cannot imagine themselves moving. When people begin to recover from Parkinson’s, the motor-imagining area might not resume function right away. Or it might be able to imagine some movements, but not others, in the beginning. The dormancy in this imagining area might recover function fairly quickly. But until it does, people recovering from Parkinson’s might go through a period in which their muscles feel limp and unresponsive.”
The meeting of the recovery support group this evening was wonderful. Thank goodness for Zoom.
Monday, August 1
When earlier in the week, I discovered that swinging my arms would act as a kind of energy pump, sending waves of electrical charge up my spine and through my head, Friend warned that it would be days before I could do that again; that the brain’s capacity would need time to recharge. If I failed to report that it was because I didn’t want to believe it. The same with gorilla pounding and the pericardium. Well, during the night the pounding became possible again in short spurts, the swinging not so much. And I notice now that typing behaves in a similar fashion. What I don’t understand, and what Friend is silent on, is the larger cycle of the limpness recovery symptom, and why am I in the third or fourth repetition of that experience. Even the interrupted sleep of a couple of weeks ago looks like pillows of bliss next to the sack of gravel I’ve had to deal with this week – but none of it is new, I’ve been here before, it is only made to seem worse by the significantly improved state experienced during the interim.
I finally fell comfortably asleep around four – after short spurts that ended in sack of gravel standoffs between me and the bed – and woke feeling rested. Then Irina treated me to a very Ukrainian massage and exercise routine before breakfast that left me so exhausted I could barely brush my teeth. I napped instead of walking.
Otherwise, I felt pretty good interiorly, a little less limp but not over it, and with extreme poverty of movement – so slow it took a full minute to get a hearing aide just to my ear, and another minute to put one in. The slowness and limpness continued through the day. And the fatigue. But internally I feel good! That is important.