Tuesday, August 16
Last night I woke at 02:30 and could not sleep again until 06:00 for lack of a comfortable position. When I woke in perfect comfort at 09:00 I was in a position I would have rejected a few hours before. Defeated by my own criteria. Makes me wonder if I undermine myself in other similar ways.
The morning walk was another semi-triumph. The evening walk was, by any measure, a disaster; heavy, uncontrolled, scraping, and laborious. Roman blamed the humidity. I blamed it on a nap that left me zombie-like and slow. The lugubriousness lasted for hours.
Wednesday, August 17
I didn’t get to bed until two, but slept seven hours without a break. Walking was better than I expected, today, but my expectations were very low. Other movement felt like I had tangled with a barrel of unrolled packing tape. The weather wants to rain, but as my friend Erika puts it, instead the air chooses to feel like an over-warm swimming pool. Storms have been predicted for several days, but none have given us rain.
As for my state, if I’m limp at all today, at least it’s not in the legs.
I’ve been singing off and on since last night. I’ve been trying to sing for more than a year, so that’s a great joy. And I can make very breathy whistle-like sounds. I stopped being able to whistle around twenty years ago. Now we shall see if the music will last.
Roman pointed out that two months ago I was walking like a troll. I now walk like an old man. That’s a welcome observation. I have no aspirations toward troll-dom.
Thursday, August 18
I slept until 03:30 then not again for three hours; same no-comfortable-position nonsense. My theory that I am undermining myself holds up, but I can’t seem to control it. I walked and chanted, tried lying down, judged it bad, and paced more. The morning walk was not bad (in spite of the lack of sleep, I didn’t feel at all tired) but after Roman massaged my legs I dozed for a half hour and woke to zombie-ness again (like on Tuesday). After a difficult lunch, I decided on a proper nap. Afterwards I could barely move. Only a half hour of pacing afforded any relief. All the movement inhibition was due to unresponsive muscles, or random response, none of it to rigidity or locking, so it can at least be attributed to recovery symptoms, but it is still agony to go through, especially given how long it may last and/or how often it returns.
Friday, August 19
For several weeks the feeling of general discomfort has been largely absent. Today, I am experiencing recovery symptom of limpness to a degree I didn’t know was possible and general discomfort has returned. So, I really cannot stand to sit, but pacing the hall takes a monumental effort. Walking out of doors was a wash; I tried but couldn’t.
(from Recovering from Parkinson’s by Janice Hadlock)
Once you get started on the recovery symptoms, you will be glad that they move along slowly. They can sometimes be overwhelming even at their moderate pace. Recovery symptoms are unstoppable (unless of course, you revert back to using pause mode). They are not always pleasant. At some point, you will be grateful that they do not happen all at once, but merely progress as quickly as you can tolerate.
Saturday, August 20
(from Recovering from Parkinson’s by Janice Hadlock)
“In some people who had been obviously recovering from Type I PD, the panic or worry about stalled recovery based on the list of recovery symptoms often resurrected the old Blocker and even some of the old Parkinson’s symptoms. After all, even after turning off pause for good, a person can always choose to re-activate it, especially if he hasn’t yet resumed using sympathetic mode – the correct mode for dealing with fear or rage.”
For the past week or so, manual dexterity has been largely bad, production of saliva worthy of Pavlov’s dogs, and an annoying tremor has shown up in my lips and tongue. Last night was a restless night. Between three and six I got in and out of bed numerous times, and paced the hall to the border of exhaustion. While I was pacing I noticed that when the feeling of heaviness waned, so did the mouth tremor and excess saliva. It wasn’t even subtle. It was like a toggle switch. That awareness has continued into my day.
Sunday, August 21
I slept well until 05:00, then was awake until 06:30. During that awake time I noticed that the mouth tremor would switch on an off; on when I allowed the thought that the limpness I was experiencing was PD-related, off when I viewed it as a recovery symptom. I spent that time doing arm swinging exercises as Friend cautioned against walking too much. Then I slept well (really well) until 09:15. When Irina finally roused me, I found myself in a very pleasant state of not wanting to move. At all. I thought I had experienced limpness already, but this was another order of magnitude. Irina managed to pour me out of bed for breakfast and our morning routine, but it was obvious that any attempt at a walk was a waste of time, so she gave me a massage instead. I didn’t object.
When she left for work at 11:45, I was in the recliner prepping for a short nap. One that lasted two hours!
Now there is a phenomenon that used to happen regularly, but has only occurred once since about April – I call it the plank. It would always happen just after I woke from having napped on my back in the recliner; my feet would rigidly point, arms straighten like wood poles, and muscles stretch into a… well, a plank. That would hold for ten or fifteen seconds then release, often leaving me with increased poverty of movement for a few minutes. Today the plank woke me, released, let me sleep, then woke me again. It did that three times.
When I finally sat up, I realized that there was no point in trying to stand so decided to watch a bit of news. From the earphone’s place on the table to my ears took at least two minutes. I regained some motion after about a half hour, and was able to claim the very Ukrainian lunch Irina had left me. The on/off switch on the mouth tremor kept up it’s warning system throughout, though with less precision than last night.
After having written this much (with pretty good typing skills) I slept for another hour. No plank, but rather severe poverty of movement afterwards. I sat and imagined specific movements for about twenty minutes, as I did last night between arm swinging.
This evening we took a wheelchair stroll (my legs being jelly) and Anna made an Italian friend named Giulia. The only language they had in common was Play, and that sufficed. I sat and watched until my body folded in on itself like an over used paper sack, but after supper things loosened up. In fact, the legs gained significant coordination. Stand by for more (crossed fingers).
(from Recovering from Parkinson’s by Janice Hadlock)
“I will just say that the path of recovery is somewhat predictable. But recovery symptoms do not necessarily follow a straight line. Also, the recovery symptoms are sometimes subtle, sometimes blatant. The intensity of recovery symptoms varies from person to person and, in any one person, might vary from day to day.”
Monday, August 22
Well, I paid for yesterday’s much-needed naps last night when, having had two hours sleep, I never slept beyond fifteen minutes at a time. So, I spent much time imagining movement, which was immediately followed by testing the images with actual effort. It worked amazingly well. While today’s quote overstates my particular case, I do think I’ve had a habit of pushing the walking in a very pause-like manner until my system collapses from exhaustion and resets my walk to zero. It feels different this time. Limpness is still present but less profound today, and what walking around the apartment I have done feels lighter, freer, and less over-controlled. I can also turn and change direction without freezing up from confusion or wariness.
(from Recovering from Parkinson’s by Janice Hadlock)
“I eventually came to see that those patients who could feel and imagine movement in their legs rapidly overcame this phase: mushy legs started to firm up in a few days or a few weeks. Those who were in partial recovery, who were still using self-induced pause and were therefore unable to imagine their legs moving sometimes found themselves stuck in this phase indefinitely – until they decided they could not recover, after which, they fearfully increased the use of pause mode, stiffened back up, and could use their legs again in a PD-like manner.”
I had to nap today, there was no avoiding it, but all the sleep took place before 14:00, so I am hoping that by midnight I will be sleepy enough to overcome an over-exacting attitude towards choosing a sustainable position. It is a kind of self-defeating judgement, this search for a perfectly balanced place for all my limbs, but I cannot turn it off.