Tuesday, September 20
The pain in my right wrist that for months has made it difficult to put food into my mouth is suddenly gone. For now.
For several weeks I’ve been taking Beta Glucans for excessive respiratory mucus (mostly after meals, and only ever at home, strange as that may be) and it seems to be helping. A little.
In response to last week’s report of new legs Janice wrote: “after a transcendent switch to a new way of being, such as speech or being upright or whatever, the toddler will be cranky, might need days of extra sleep and will be unable to do the new activity. and won’t even try. and then a few days or a few weeks later, suddenly that new skill presents itself as completely mastered. the brain was working right along processing, absorbing, making the new skill its own. and when it is ready, BOOM. that’s what’s going on. so don’t worry. that “new” skill (walking) was real. and now your brain needs a bit of time to incorporate it into ‘you'”.
I’m grateful that she wrote that because today I feel immobile and hunched, and her broader perspective helps me to see what I am experiencing as interesting rather than dire. Which is vital to the process.
The evening walk was better than I expected it to be.
Wednesday, September 21
Susan, who was last here three months ago, says that my posture is more bent than before. It feels that way, too, sometimes.
Somewhere in her book, Recovering from Parkinson’s, Janice mentions that as a patient is regaining mobility that those symptoms that appeared earliest will often disappear last. Today and yesterday (maybe Sunday, too) I noticed my left foot dragging. My left foot was the first to drag two years ago. Until recently both feet were dragging, so it seems that my right foot is improving. I like when my progression matches the literature.
All things dexterous are awkward. I have been slow all day, resisting naps so I have a better chance of good sleep tonight.
Thursday, September 22
Shiatsu and a mad and crazy social life, all of it grand.
Past struggling with a pizza while eating out with friends, nothing was terribly difficult and everything was buoyed up by good company.
Friday, September 23
I’ve been happy to downright jolly all day. Typing is a disaster. Walking is probably better on the average than it was two weeks ago, but holds not a candle to last weekend. I could write in depth about that were my fingers more predictable.
Saturday, September 24
The morning walk itself was quite ordinary, though it felt either slightly improved or the opposite, I couldn’t quite tell. But the passeggiata was outstanding. We crossed paths with dozens of friends, connecting joyously with all of them. There were also drums and trumpets in Piazza San Giuseppe. Why I don’t know, Roman didn’t slow down enough for me to read the sign. Manual dexterity (and therefore typing) is a bit better. I slept straight through last night, successfully resisting an urge to get up when I woke in an uncomfortable position, still dreaming. Instead, I adjusted and slept on. More of that, please.
Sunday, September 25
For the second day in a row I slept through for about eight hours, walked to the garage (instead of using the wheelchair) and couldn’t honestly say if I felt better or worse (but assuredly different). Manual dexterity is definitely better, some movement on my feet is worse. Movement in general feels unhinged. And inwardly I still feel positive and good.
I hugged my invisible Friend this morning, something I wish I had done more than thirty years ago when he told me he was diagnosed with AIDS. Instead, I tried to remain hopeful. Being hopeful was not in and of itself the problem, but ignoring his pain was to deny the reality of his experience. I’ve done that a lot.
The following is from Recovering from Parkinson’s by Janice Hadlock: “A majority of my patients didn’t want to recover from the underlying cause of Parkinson’s disease. They did want to get rid of the symptoms. But they didn’t want to, didn’t think they could, or didn’t think they deserved to get rid of the underlying cause: a decision to stop feeling the physical and/or emotional pain of this world.” My Friend forgave me, now I have to follow his example and forgive myself for all the comfort I failed to give because I couldn’t allow that pain is a part of life.
Monday, September 26
Today is pretty ordinary, so here is a catch up for those days I couldn’t type.
Susan read aloud to me two times last week. Each time left me in a soaring mood. Today, I read this from Janice in Recovering from Parkinson’s:
“…research done in 2019 using brain scans to show which brain areas are activated in children when being read to, as opposed to when children use computers or other screen devices for self-amusement. While books are read out loud to children, the children’s brains’ striatums become highly activated.” Presumably it can also work for adults.
David and Birgitta ended a visit with a guided meditation on the Du Channel, and that also left a positive effect on mood. Even more significantly, it was the first guided meditation I’ve done without a running commentary from a critical mind.
And this to share, also from RFP: “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.
“Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering from Parkinson’s disease. The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.”
For those of you who are following this practice, or who have an interest that goes beyond my particular case, the heart of it is explained in chapter 12 of Recovering from Parkinson’s. It is well worth reading. Or re-reading. Several times.
Have a wonderful week, everyone!