Tuesday, Wednesday, Thursday, May 17 – 19
Walking was difficult all three days, improved a little on Thursday. Likewise with typing. Wednesday, by the way, we stopped at Bar Sant’Andrea with Erika and Michelle and joined an expat group that included several favorite friends. But the conversation was laced with how important health was, and each reference caused me to decline. No fault of theirs, but my reaction was recognizably self-conscious and the result predictably symptomatic.
Friday, May 20
Walking continues difficult, but it is increasingly necessary. I paced the hall for an hour yesterday afternoon until it was pretty fluid, but put on shoes and take them outdoors onto a cobbled street, and it turns into an exercise in terror. Then I paced again for an hour yesterday before bed, hoping to secure a full night’s sleep – no dice. I slept four hours, then was up for three before I finished it off with 90 minutes in the recliner. Then, shoes on and onto the sagrato, it was shuffling and jerks for two rounds, but finished with a surprise third that was “much, much better” according to Roman.
My Friends keep telling me to get out of the way of recovery, and mixed in with that I see an almost lifetime habit of feeling unworthy. So, a mantra arose; I am worthy of complete recovery. It, and variations, repeated during pacing last night and today, gave me a thrill and made me feel grounded.
Saturday, May 21
I woke at 04:30 and once up for water, could not rediscover the comfortable spot in bed that had satisfied me for four hours of delicious sleep. So, I paced. For an hour. And after a few minutes was walking well; not perfectly but easily and enjoyably. But every attempt to return to bed in comfort failed. At 06:30 I gave up and used the recliner. An hour later RLS set in, and shortly after that general shaking, but I somehow slept through it all until 09:15.
Having paced the hall so happily, I expected a good walk on the sagrato. Nope. A horrible walk; hunched and shuffling and difficult. By the time I met Ida for coffee, I was a trembling, inarticulate mess. I returned home to the recliner with results similar to this morning’s.
For the first time I can remember we gave up on the evening walk almost immediately. For one, the corn on my little toe was very painful, but we also experimented with a site and time of day that didn’t work out. My mood was improved by watching two dogs fall in love, but as soon as we returned home, I collapsed into the recliner for a late, long nap. There might be hell to pay tonight… and maybe not.
Sunday, May 22
I didn’t really sleep until four, but once I did, it was a solid five and a half hours. Walking outside has been a challenge all day, while I spent at least two hours, cumulative, pacing the hall in fairly good form. Part of the difference is due to painful corns and callouses, made more so by shoes or sandals.
I seem to have regained the Recovery symptom of sleeping a lot. Also the limp period between 11 and 13 is back, and was so profound today that I wondered if I wasn’t actually paralyzed. Nope – 13:30 arrived and I was no longer averse to movement, just slow as a drunken turtle.
Monday, May 23
The brain, says Janice of The Parkinson’s Recovery Project, is by nature conservative. When there are significant changes in neural circuitry, the brain’s job is to return the system to the status quo, to stabilize. Okay, I get it. Do your job, brain, and let me move.
A key element of Recovery is to replace the ever-present inner monolog (which can often be negative and grounded in destructive habit) with a dialog with an “invisible friend”. It is suggested that the Friend be someone who is physically departed, but still close to the heart and fun to be with. My Friends have come and gone over the past year and a quarter, and I had settled on one full time Friend bolstered by guest appearances from a couple of others. Then two weeks ago a chum more recently passed came knocking at my door, and it wasn’t long before I let her in. My two Friends never met in life, but (however it works) they have now, and they are having a wonderfully theatrical time of it! Whenever I check, I’m greeted by a burst of color and laughter and song. “What’s up?” I ask. “We’re celebrating your recovery,” they reply. I hope they know of what they speak.
Free Bonus!
From one of Janice’s recent letters, quoted here with her permission:
“Recovery is crazy, it is not a straight line, but at some point, as we start to have good movement instead of bad, we have to admit the ‘degenerative’ nature of PD seems to have turned around.
Your report, esp on [last] Saturday, really tells the story: you’re having various good behaviors that you haven’t had in years.
It’s all very interesting. It isn’t as if bad symptoms slowly, steadily change into good ones. When they are bad, they are still bad, and when they are good, they are glorious.
This has to do with the brain behaviors. When the mind goes into negative past thinking patterns all the brain links for pause-mode movements might be activated. When the brain is in the new, ‘I’m safe’ way of thinking, movement might be great, even though there are recovery symptoms due to weak muscles and dormant nerves.
What really changes, really, is the amount of time one is spending with the positive mindset. That determines how much time is spent with ‘good’ movement and with recovery symptoms, which are actually good, a form of healing.”