Wednesday, July 7
After a very spotty night trying to sleep in bed, I moved to the vibrating chair at dawn, and despite some interruptions for additional magnesium (to counter RLS) and for comfort adjustments, I slept a solid three hours. An early foot massage gave me an hour or so more. Darina fixed a lovely breakfast (even brought a fresh cornetto from Palace Cafe) that included coffee, and the day showed promise. But when lunch was had, the proffered new desk chair rejected, a shave and shower was accomplished, and another hour’s nap was taken, and there were still six hours to fill until sunset, and the summer ahead seemed impossibly long. That blandness would be relieved by a comfortable seat at the computer and some air conditioning. Both are on order, and a part of me is still surprised they are of such importance. Comfort didn’t used to be so sought or so difficult to find. Now finding it seems accidental. As the day wore on, comfort grew more elusive. By midnight, an accidental crossing of paths would have been most welcome.
Thursday, July 8
After very little sleep in bed, I transferred to the vibe chair shortly after four and slept well for a couple of hours. When sustaining that became impossible, I went back to bed and instantly discovered a way of sleep on my side which gave me another couple of hours. Movement to and from those various locales was as slow and tentative as can be imagined, limp had clearly won this morning, no question of confusing it with weak. Foot rub followed breakfast, then another good nap in any position I wanted to; it was liberating and refreshing. Alternating waves of feeling like I’d been hit by a bus and waves of anticipated full recovery. Sometimes together. I napped well and often all day. By sunset I was feeling more solid than slammed, but discomfort was fairly acute and fluidity level was low. It also became apparent that the overriding discomfort was limpness in legs; it was not Parkinsonian weakness. The limpness varied in intensity, but the later half of the day it was dominant.
Friday, July 9
Sleep was random and fragmented, but for the first time in a long time, without extra pillows. I was able to find comfortable positions quickly, they were simple and easy. It makes the months’ old difficulty in finding comfort in bed nothing more than a mental error, a construct based on a false premise. I wonder how many other of the symptoms will follow down that path. Still squashed in reaction, I now think, to shot #2. Many attempts at naps. My lovely sleep was cut short too early by gusts of cool air blowing on my back. By the time I’d remedied that, I was committedly awake, so spent the rest of the day searching for the perfect nap. I never found it. Meetings about badantes commenced at four and went on for three hours. The result is Roman, a very kind fellow who will become a friend. By the time Katrin left, I was dizzy. I lay down on bed for twenty minutes but was repeatedly jolted awake by what I would call RLS, except that it was not limited to the legs. Recovery dyskinesia?
Saturday, July 10
Simple new positions for sleep notwithstanding, after a few hours, my mind made them complicated and tedious unless I took a break, in this case, a stretch in the vibe chair just before dawn. That attempt at recapturing a delicious sleep was successful only insofar as I was able to tolerate dyskinesias as elaborate as a foot lifting into a long imitation if a bird startled from its nest. That happened several times, while filler entertainment was provided by more mundane versions of twitches and spasms of the legs, though as before occasional full body or arm movements were featured. After dawn, I returned to bed for a couple of hours, and was able to find and enjoy what has come to call itself, the lawyer’s side (that is lying on the right). I rose shortly before Lucky arrived to take another chance on the black chair, fortified with an extra dose of magnesium citrate, all vibe zones off except for the neck and shoulders, and slept for two hours. Since then it’s been all about fighting boredom and discomfort, not in that order. My mood is improved by knowing that a new desk chair will arrive on Monday, and that with luck an air conditioning unit will be installed sometime next week. Also, that my new badante, Roman, comes today with his wife to fix weekend meals, and (I hope) to give his first foot massage. The next big event after that is sunset. After that, the day is pure pleasure.
Sunday, July 11
Roman’s usual line of work is as a handyman, and he attacked massaging my feet just as one would expect; like they were old wood in need of oil. Little by little I coached him for what felt good, and he adjusted, but not before he left a protective coating of mustard seed oil on my parched lower extremities that was as much a preservative as it was therapeutic. His wife, Maria checked out the fridge and put together a lovely plate for last night’s dinner, perfectly suited to the heat. Still stunned by my reaction to shot number two, I wandered from uncomfortable chair to uncomfortable chair, grateful for any and all distractions from the clock. Today began with solid sleep from about four this morning to about eight when my quota of comfort ran out. I showered and shaved, then sat in the vibrating chair and fell into a coma of a nap until minutes before Roman was due at eleven. He put the place in order and gave me a foot massage so improved it was as if he’d taken classes overnight. I’d mentioned in passing to him yesterday that I am a fan of Slav cuisine, and lunch was a fabulous potato and tarragon soup, with a plate of perozhski and sweet peppers. After years of Italian (which I also love) the change of cuisine almost made me cry. Then he went off to the lake to picnic with friends and I weighed my options between hot rooms with flawed chairs. The recovery symptom of 18 hours a day asleep may be reaserting itself, or if not 18 at least a lot more than is usual. I hope so. I prefer too much to not enough when talking about sleep. I napped in the vibe chair after a short visit from David, then resisted napping again to no avail, falling deep asleep for a few minutes at a time for more than an hour. I finally gave in and slept first on my back, then on my side, and finally in the psoas stretch for a total of about ninety minutes, and had to force myself awake to get back on my feet.
Monday, July 12
First of all, let it be known that umbrichelli is anarchistic form of spaghetti; difficult to eat for the most skilled of us, almost impossible for those of us recovering from Parkinson’s. Green salad is close behind. Roman provided both for lunch. Delicious to be sure, but challenging. Sleep was a bit better last night with the usual quirks. Roman gave his third foot massage at nine, and as yesterday, it was exponentially better than before. I fell asleep a few minutes in. He told me later that he didn’t wake me because I was sleeping like a baby. But I was fully aware of his finishing, moving his chair, and leaving, but lacked the ability to move or speak. I’ve felt decidedly more limp ever since then, after feeling solider during the night. The heat continues to eat at my spirit. I’ve been facing blank days for almost a year now, but they are no more welcome now than they were then. Nor has my typing much improved. The new desk chair arrived, but there was no time for Roman to put it together. I do wish I felt stronger today, but on the bright side I’m beset with numerous recovery symptoms all at once. Towards evening I encountered an isolation panic. Too much heat, discomfort, and pain. Too little I can do, entertainment, and company. Bruce talked me down. I’m still frothing at the pain and increased awkwardness, but feel I’ll make it through to morning. A lovely friend characterized me as stoic. I am not stoic, or at least am not trying to be.
Tuesday, July 13
Same patterns for sleep last night, perhaps I snuck in a few minutes more than usual. The usual massage was followed by the usual coma during which Roman put together the new office chair. It is an improvement, how much of one depending on having someone here to help make adjustments. We threw open all windows around 13:00 because indoor and outdoor temperatures were equal and were served by a gentle breeze. Lunch was preceded and proceeded by naps. Walked the hall, if you can call it walking. Walking relieves soreness in feet, but a few minutes sitting is to start again almost from zero. I seem to have an anti-social time from about six to eight, frequently nap, and am unable to talk or remain pleasant. Or it may be that my recent lack of meaningful sleep is catching up with me.
