Tuesday, August 10
Today was air conditioner day, so we were up at six so that Roman could make me and the apartment presentable by the time the crew arrived at 08:30. There had been quite a bit of confusion as to where the unit could be installed, and it was finally back to the first conclusion; the bedroom in the corner to the right of my bed. I was not happy with this. It meant having cold air blow on me while sleeping, and given the bedroom is at the extreme western end of the apartment, nothing else would ever be cool. Roman and I discussed this last night, and came up with what seemed like a reasonable alternative, which he proposed to the crew as soon as they arrived. There ensued a lot of shouting. Roman popped into the salotto where I was waiting to update me; it would mean a longer run of tubing.
“I’ll pay for it!”
“And instead of one side of the hall, they’ll install it over the bathroom door at the end of the all, so they can run the condensate tube into the shower.”
“At least it’s not in my bedroom.”
The shouting calmed, and we went for our morning walk.
Later, when I checked my phone, Janice at Parkinson’s Recovery had answered my weekly report, one I thought was rather banal.
“This is profound,” she said, and went on to describe recovery not as something I was still going through but as something I’d done. I was feeling strong and in balance, and ready to believe it; we had walked 1.4 kilometers today. I became aware that each step has its origins in the thigh and buttocks, and that awareness helped to made the gait smoother. Recovery made sense.
But my feet still have a tendency to swell. When I mentioned this to my doctor, Leonardo, this afternoon, he suggested compression socks. The calves had become weak in the hospital and their activity is essential in drawing blood back up from the feet. He also suggested trying a medication mornings to increase urine production.
Roman understood about the socks but expressed his disappointment that he would have to suspend leg massages.
Wednesday, August 11
While putting my hearing aids in this morning, I seem to have pushed a plug of earwax deep into the left ear canal, and am now temporarily deaf. I wrote Leonardo. He told us what ear drops to buy, and promised an appointment on Friday for wax removal. I had already developed a cough that bothers when I try to speak, so now I am cut off from speech on both ends. Enforced silence. Appointments and phone calls were canceled, friends who plan to visit have been notified.
I was able to walk almost as well as yesterday, but more effort was involved. I took a urinary production pill with breakfast, as instructed. The new air conditioner works well.
Thursday, August 12
When Leonardo suggested the pee pill be taken in the morning, it was so that it would have lost its potency by evening, so as not to add to how many times I have to… well, this deserves some explanation. I keep telling Roman that he doesn’t need to stay overnight anymore, but he insists that he does.
“Call me every time you need to pee. I don’t want to find you on the floor because you overreached for the papagallo. Each time.” That was yesterday evening, and I swore I would. But the pill didn’t lose its potency, as hoped. I called him a dozen times during the night, or at least that’s what it seemed like. This morning we were both of us ragged.
“No more pill,” Roman said this morning. I agreed.
My morning walk was not nearly as fluid or strong, and we stepped back in distance as well. I slept all afternoon. My hearing had not improved. The PD shuffle was strong. I reported to Janice.
“Things like fluidity when walking will be affected by things like sleep and emotional state for some time to come. You don’t have a lot of reserves. You have the ability to be healthy now, but it will take time before you can smoothly get past rough spots such as no sleep.” Or like not being able to hear or speak, I may conjecture to add.
Friday, August 13
Walking this morning was extremely disappointing. Every attempt at keeping stride was met with left ankle pain. The pain itself is not unusual, but that it showed up on the first lap, was. Then we wheeled over to Leonardo where he flushed out my ears. No difference.
“It’s not wax,” he said, half sighing.
“Eustachian tubes?”
“Yes, it’s probably related to your cough and runny nose. There are sprays to help with this.”
An hour later, Jana my physiotherapist of the hour came on a house call. She worked on freeing my muscles.
“You have your entire body protecting your ankle pain by turning in. We’ve got to open it up again.”
My friend Richard arrived from New York via Nice at almost midnight. He has worked as a caregiver so will be able to give Roman the weekend off. That makes us both very happy. I’m not sure how happy it makes Rich.
Walking was hard, due mostly to pain in the left ankle. Movement is generally slow, and the gradually increasing isolation from now not being able to hear or speak is depressing. Typing remains okay, but slow. But I am sleeping like a baby!
Saturday, August 14
Ears continue to be blocked, hearing is nil, the cough welcomes every word I even attempt to speak. Walking around the apartment is a joke, movement is slow. The right arm tremor is back after several months’ absence. Morning walk at the Duomo was difficult; any regularity of stride was soon met with left ankle pain.
I slept a lot in the recliner which provided relief from the cough, and the usual products of oversleep never made themselves evident. Rich and I lunched at a pizzeria on Via Signorelli. The food was good, but (for me) a challenge to eat. I spent the day having to pee every fifteen minutes. Typing is middling. All in all, this is the most discouraging and uncomfortable day I have had in a long time. I feel bad being a burden on Richard’s Orvieto sojourn. He says he does’t mind.
Then, the evening walk, which because of extreme heat was delayed until 10 pm, encountered mobs of people on the Duomo steps who were all out for the same reason, and was moved to Piazza Febe in front of San Francesco. It’s a dark, circular, freshly paved little piazza, perfect for walking at night. We did five laps without stopping and no ankle pain until the very end. Again, I slept like a baby.
Sunday, August 15 – Ferragosto
For the first time, I wasn’t looking forward to my morning walk. The pleasantness of last night’s walk was overshadowed by yesterday’s overall coloring of defeat.
We beat the really bad heat, but it was still hot. I was able to put in four laps before my ankle gave out, but the reason for the ankle was a sudden influx of people swarming the porch, my concentration went nuts and I stepped wrong. Nothing injurious, just uncomfortable.
The cough is looser today, the hearing a wee bit better, and except for this morning, I feel like moving (ill-advised in this weather, but a positive sign).
I hit bottom again during the afternoon. The cough would only be still if I were flat out on the recliner. It reminded me too much of hospital.
Rich and I went to Bottega Vera for a dinner platter, then we walked the Duomo, but my left ankle kept giving away to pain, especially, it seems when I get in “stride” all movements connected, no shuffling. “Hey, I can do this! Ouch!!!” Pretty much like that. I expect to sleep well. (I did.)
Monday, August 16
Roman was back for the morning session. Rich has been a great help, but it was also good to be in familiar hands. We did the morning walk only with the support of Roman’s arm, resting briefly after each lap. The stride is much easier to maintain without pushing a wheelchair, but also more tiring as different muscles are being used.
From there, the day was an emotional roller coaster.
Roman fixed Rich and I a wonderful Ukrainian meal that I could barely eat, due in part to a compromised appetite (heat, blahs) and in part to not wanting to have to blow my nose through the eating of it, as I do with every meal I have at home. Eating out with a drip free nose has already spoiled me. I kind of thought the air conditioning would help, but it hasn’t.
I took an unneeded nap after lunch, and woke soon to wait for Rich to come back and wheel me to the nearby playground which is a perfect spot for an afternoon walk. Waiting is not something that I can tolerate much of lately, though I have plenty of opportunity to practice. I am quickly approaching the sick of the sickroom stage.
The other oddity… well for four days after hospital I could not produce a bowel movement to save my life – typical of when I change residence, even just a short distance like that one was. Then once started, it has been five to seven robust deposits a day. That caused quite an excitement among my badante. However, the trend has turned into a new normal. Almost every urge to pee is accompanied by an equal urge to sh*t. That’s a good thing, I suppose, but it is also isolating, and when left alone it can be a bit scary.
Evening walk at Duomo was also only with arm support, and in total I did nearly two kilometers today. Parkinson’s symptoms have gone back into hiding except for whatever effect they may have on walking and periodic slowness. Went to bed a tad too early, and peed my way through the night, though I could recall drinking very little and sweating quite a lot. I gave in at six and got up on my own to wait – for Roman.