Chapter 84 - In Hot Water

By 10:45 Wednesday morning she was feeling "agitated, don't know where to put myself." Most of her "get up from chair counts" (GUFCC, reminds me of a clinic she was once at, perhaps that is where I subconsciously remembered this type of procedure) were 5, except at 2:30pm for count of 12 & 4:30pm for count of 7, then up again at 8pm for a count of 9. A little after 10pm she had a "funny feeling down my back, need to go to bed." Asleep by 10:30pm she was up at 12:30am & 4am.

Thursday was a pretty good day. Her GUFCC counts (sounds a little like a clearing of the throat?) were 5 all day except at 8am (8), 8pm (7) & 8:30pm (7). We are wondering whether because I count out loud she is cuing herself to my voice; I am thinking of buying a stop watch for this purpose (I lost my $20 wrist watch which was able to do such things whenever I read the badly translated manual). Also she sits on her little red blow-up woopee cushion as an aid to rising; a couple of days ago she became red in the face trying to force herself to rise, only being able to get halfway into a stooped position, & that gave me the idea (memory?) to measure the time taken. Rising from her chair as well as hauling herself around the bed at night by pulling on her bed poles causes her pain in the arms, especially her right. I noticed she is wearing the support glove on her right wrist this morning (Friday). She spent most of Thursday afternoon machine embroidering monograms on some towels, but required my help to hoop them. About 9pm we did our grocery shopping, she careering around the supermarket flat out at low speed (she hesitates to increase the speed) while I pushed 2 tonnes of groceries in a wobbly trolley. The checkout girl actually laughed when I replied "OK until this thing filled up" in response to her monotonous & programmed question "How are you today?" Usually they look puzzled, maybe fearful, when I give an honest answer.

To bed around midnight for 3 or 4 risings. First thing this morning, Friday, the alarm rang out & I called before she woke for 6am Madopar Rapid, dissolved in water last evening in an old pill bottle as usual. (For non-PD'ers MR is a soluable Sinemet formulated to give the patient a quick kick-start & an equally quick finish.) Normally she requires the pill bottle to be refilled with water at least once for her to swallow all the granular residue left in the bottom of the pill bottle. This morning she muttered "That's funny, there are no grains left in the bottom." "Oh hell, did you forget to put the pill in?" "I'm not sure. I remember using the hot water from the kettle after you made a cuppa." We debated whether she should take another just in case. Decided to wait. Glad she did, because by 7:30 she was reasonably agile, relatively speaking. Otherwise there may have been a panic attack of sorts. She then showered and dressed, a little help with her blouse needed & of course the bra clip. "This morning I never had that horrible feeling that rushes through my head when the MR kicks in." She uses that as a signal that she will be capable of taking a shower. She has often mentioned that effect, I assumed it quite normal, but taken in conjunction with her comments that water near the boil was used to dissolve the MR, and no grains at the bottom of the pill bottle this morning, suggests to me that erratic side-effects may be caused by incompletely dissolved MR. Extra hot water again tonight!

Chapter 83 - More or Less

Saturday night - Sunday morning was torture for her. In bed by midnight, up 4 times then took 2 Panamax at 4am in an attempt to ease her shaking. She was uncomfortable in bed because her legs insisted on becoming rigid, pushing her feet "out of bed". This condition gives her the sensation that she is falling out of bed, although physically that is not the case. There was no pain. Between checking emails & the like she walked the floor. I was oblivious to all.

Sunday she slept from 6:30am to 9am after taking her first meds then after her 9am meds she tried for more sleep but gave up trying, rose, no shower. At 11:30 she returned to bed for an hour, perhaps to sleep. She dressed at 1pm, was very sweaty during the afternoon. The evening was "normal".

Early Monday morning was much better. Only needing to get up once (I only recorded once but my note-taking in the early hours tends to be unreliable) before 6am meds, she then rose easily at 7:15am then showered & dressed without assistance. I neither remember nor took notes of events during the day but by 8pm she was unable to rise without assistance from her chair. Later, after her 7pm meds had kicked in she found rising from the chair easier although she had to strain to do so. By bed-time at 23:45 quite easily accomplished. She was unable to cope with doing her KYB lesson.

Early Tuesday was different again. She called for help to get out of bed at 2:30, 4:30 & 6:30am. At 6am she took her usual Madopar Rapid. At 7:50 she rose easily, showered & dressed herself (except for the sodding bra clip as usual). She decided to wash because the clothes basket was over-flowing. I carried the basket out to the laundry where she divided the contents into two heaps then throughout the day she completed two loads of washing, drying in the dryer because for a pleasant change light rain was falling. Late in the afternoon two friends called to chat with her. Earlier in the day I devised a crude test to check her ability to rise from a sitting position. It is just this; comfortably seated on her rubber cushion in her Victoria chair she begins to rise on a count of "3" as I continue counting and I record the count when she is upright on her feet. The hardly scientific & boring results are:

8:30am count of 5
9:30am count of 5
10:50am count of 5
11:30am count of 5
1:30pm count of 5
2:30pm count of 7
4:30pm count of 6
5:30pm count of 6
6:30pm count of 5
7:30pm count of 6
8:30pm count of 11
9:45pm count of 5
10:30pm count of 5
She had taken her usual meds 7pm. At 8pm she had the back door open for fresh air because she was hot & sweaty. After the "count of 11" we took a walk around our village without difficulty.

Now this morning, Wednesday, another variation. Usual 6am meds, rose about 8:15am to shower. Then called me, unable to completely dry herself. Complained of a "thickening" at the base of her spine; becomes flustered when I ask questions "You don't understand, I can't explain it." But she does anyway, & I admit I have never absorbed her comments about this properly before. She senses this thickening feeling at the base of her spine, she is forced to stoop, in attempting to counteract the stoop in order to stand & walk normally causes pain which spreads across her rear & I presume then down her legs. I dried her quickly, on with some underclothes & applied the TENS machine on her lower back. Fifteen minutes later the "thickening" had eased enough to finish dressing her. She said the TENS pulsed harder on one side than the other, so we reversed the pads to discover that the same pad (the red?) produced the harder pulsing. Puzzling. At 10am she rose from her chair on a count of 7.

Lately I have mumbled that more medication may be needed. I will continue with our rising count test. At 10am the count was 7. She thinks she feels, at times, worse after taking meds. More or less?

Yesterday we learned that our approximate octogenarian neighbour has been diagnosed with PD. We had arrived at that conclusion last year when they moved in.

Chapter 82 - A Short Trip

I was about to type 'She sleeps' when her voice sounded in the passage way "I'm up". Almost 3 hours asleep after returning from a PD conference down on the coast. We had intended to play the tourist as we arrived on Thursday afternoon and stayed in a disability friendly cabin at a tourist trap some 10kms out of town. Unfortunately, after we had a chicken salad lunch at McDonald's she was not up to doing anything but settle into the cabin. In the evening we enjoyed some chatting over a pizza with PD group friends who had borrowed someone's waterside holiday house. We had some trouble finding the house because my GPS insisted we take a short cut along a dirt track through dense scrub over some hills. We both became stressed when the GPS wished to guide us down a recently bull-dozed track that had a street name. Something the matter with the maps in this area? We found our way back to bitumen.

She had to rise several times during the night. Friday morning she rose late for a shower after her 6am Madopar Rapid had worn off so she needed drying & dressing after her shower.
The conference began at 10am on Friday with an introduction by an eminent person that we conveniently missed because of more GPS difficulties; even though I began on bitumen, the machine still wished to take short cuts. I must read the manual. The trip there was tense for her because of our lateness. Two very interesting practical speakers, even though one had a PHD. The meeting concluded with lunch, after which I bought some micro-wave-able food plus other nibbles, then back to the cabin because she was dis-interested in looking in shops. And light rain was falling. Back at the cabin she slept for an hour & a half. The TV in the cabin is mounted on the wall in the bedroom so she had to endure the returns of two of my favourite BBC violent spy/thriller shows, because she decided to stay in the bedroom rather than sit in the lounge room. Fortunately, her old fold-up plastic chair with arms was in the truck so she was able to sit comfortably. About 9pm she had her feet up on the bed; I expressed surprise when I saw her feet moving in circular motions - "What's happening with your feet?" "I'm wriggling them to relieve some tension." I relaxed. Her feet had looked much as they had during the horror days of over-medication. Later I watched her reverse direction while standing between the two beds; she shuffled each foot in turn about 4 times before she was able to walk towards the bathroom. During the night her sleep was again disturbed by her need for 3 excursions to the bathroom.

This morning I woke at 6:30am to find that she had been sitting on the side of her bed for over an hour. She then took her Madopar Rapid half an hour late in an attempt to smooth things this morning.

Our intentions had been to visit the art & craft shops in the little village after we checked out of the cabin, but rain was bucketing down so she was not keen to do so. So the trip that was meant to be a bit of a holiday only resulted in attending the conference. The rain continued to fall heavily, interspersed with cloud patches, until we were up onto the tablelands. During most of the drive she held onto the grab rails so tightly that her knuckles were white.

A month ago, 18th March, was when she decided to cut out meds at 2pm & midnight. Although she still feels "better in herself", I am sure she is stiffer, more akynesia, greater difficulty getting out of bed & seated positions & needs more assistance. Perhaps she needs to consider increasing her meds. We will see.

Chapter 81 - A Clayton's Panic Attack

I can't see what triggered it. I peruse my notes of the last few days. We had a pleasant weekend with visiting friends. Then on Monday she showered & dressed herself without needing any help at all, then in the afternoon we bought a gazebo thing which I erected beneath our patio awning as protection from European wasps (no, not the ones of religious fervour) when we dine with Mr A. Fresco, not quite successfully it turns out. On Tuesday, help was needed with dressing, TENS on her lower back before she attended KYB. On the way home we popped into the local library to see the display of our photo group's masterpieces. She received an email from our friends around the bend (geographically) returned from their pilgrimage to the city of churches so I rang them to join us in house warming the gazebo thingy, in which we nibbled our way into the evening on cheeses, dips, some red, lemon-lime-&-bitters etc. And we caught one wasp that wished to join us in a jar which was then placed in the freezer. She was in bed by 10:30pm.

Wednesday began abruptly at 4:30am. Unable to lay in bed, legs insistant about sticking out, tremors laid on, she sat in her chair in the sun room until her 6am quick fix and returned to bed. Between then and 9:30 she rose for the toilet several times (1's & a 2), on the last occasion returning to bed saying she was "a danger to herself" but again she was unable to control her legs in bed, stiff & straight. By the way, each in-out of bed & rising from her chair required my assistance. On rising for her chair again she found that she "can't trust my legs to support me". She explained that she felt "weak" down her right side. By 10:10am her tremors were subsiding and by 10:30am her "legs had come back". I suppose her 9am meds had begun to kick in. For lunch we had a light fish salad. At 1pm she decided she needed to lay down to sleep. She was very shaky, her right hand side weak. As she dozed off the door bell rang. After my visitor had gone (I must make a notice "Ring the doorbell at your bloody peril" to hang outside for these occasions) she rose very unstably, toilet again, unable to raise her clothes, still weak on right hand side, returned to her chair. She has panic attack feelings yet no signs of dry mouth, breathlessness, no pains, no dystonia or dyskenesia. I released the clips on her bra because her chest felt restricted. She decided she should have a Kalma happy pill. I found it for her. Around 2pm she decided to try laying on a reclining lounge but needed to detour for a #2 then needed her clothes raised again, although she says she has trouble with those elastic topped jeans and should wear her slacks instead. Once on the recliner she needed her small hand held fan; she was hot & sweaty. By 2:15pm she was feeling the effects of the Kalma as she decided to lay on the bed again. Fifteen minutes later she can't lay any longer, needs her shoes on because her toes are curling so back to sitting in her chair. I set up the pedastal fan for her. Her shakes are calming down until by 4:15pm she is "feeling much better, tremors are fewer". A half hour later the loo again, pants pulled up again. Around this time her distant rellies arrive, having phoned earlier, they intend staying only briefly, we talk them into staying for a meal in the gazebo thingy where a wasp joins us. Usual 7pm & 10pm meds and to bed at 10:30pm (we are trying to begin sleep earlier). A calming evening after a sod of a day.

She needed help out of bed at 2:30am this morning and again at 6am when she took her MR. Rising at 7:15am, she showered, washed her hair & dressed herself, although I was CB'd to the bathroom to fasten the bra clip. Washed her hair damn it! That usually means problems with back aches and feeling bad, adds meaning to a "bad hair" day, yet she is walking about the house doing I don't know what while I type this note about yesterday.

What caused yesterday I wonder? There seemed to be no emotional stress. A relaxing weekend with friends. Reasonably average Monday & Tuesday. Something we nibbled on Tuesday evening perhaps? More likely just a perturbation in the progression of her PD. Do you think I should have taken her to a doctor, the hospital, a faith healer? How should I have described her problems to them assuming an appointment was available earlier than next week? Or waited hours in emergency while physical damage cases & heart problems were attended to?

Yesterday when I mentioned to a neighbour that we intended to drive to the coast today for a PD conference tomorrow he queried "Should you do that when she is ill?" to which I replied that she has been ill since 1991. They just don't understand.

Chapter 80 - Tango for Two

I hear my name. My dream fades; I'm already forgetting it. "Are you OK Dear?". "I need to get up." I remove my CPAP mask, lift her legs to the edge of her bed, tilt her into a sitting position with her left arm around my neck, help her stand my arms around her waist after positioning her shoes to slip onto her feet. We both go our own ways; she to hers, me to mine. I return in time to find her grasping the fireman's pole. Holding her hand, I lead her back to bed while the beam of her LED torch tremors from side to side in front of us. As usual, I help lift her right leg for her to kneel on her bed before toppling her forward & sideways. Mostly she lands in a comfortable position. I flash the torch on her alarm clock - 4:25am. Soon her soft snores can be heard over the rush of air from my CPAP. I lay wake unable to return to the glow of my broken dream; I wonder what it was about, my thoughts lead on to other trivia, I mentally itemise things to be done.

She calls again. "No my legs are sticking out." I stop my CPAP machine, take off the mask, roll over into the gap between our beds. "Your legs are OK - they are not off the edge of the bed." "They feel they are." I attempt to push them over. "How's that?" "No good." I go through the routine of sitting her upright. She is very stiff. I kneel on the floor, head on her breasts. "What time is it?" I shine the torch on her clock. An hour has passed since last time. "Almost time for your pill" I say. "What can we do?" "We could always cuddle" I suggest and she replies "It takes two to tango." So we repeat the routine of standing her to push her back into bed. In doing so, she has her back to her bed, so we waltze shuffle around to position her. Not much of a tango I think to myself.

The half hour to the 6 o'clock alarm is a long one while she snores a little once more. The alarm sounds without waking her. I call out. The alarm stops, by itself, too tired to ring any more. I help her to sit, hand her the old pill bottle in which she keeps her early morning dose of Modepar Rapid in water (she prepares the next day's meds before bed each night). As usual she needs a few squirts of water from her other Microsoft XP bottle (did I tell you the other Microsoft bottle developed a crack in its side for which no patch was available? I will probably never get a Vista bottle). We stand & tumble her back into bed. I collect my glasses and CB radio. "I'm keeping you awake" she murmers. "No you're not Dear" as I leave for the dungeon to type & listen to some classics on the BBC.

Time for a shower now & some breakfast. Perhaps I'll return to post a few notes about the last two weekends.

Chapter 79 - Coasting Along

I see it's a week since I last posted. Seven avid readers have visited. I had better provide you with something to read. There is little to report. She has continued with only 3 doses of PD meds, the MR at 6am then CR & Indorel at 9am & 7pm. She says she feels better in herself, although she has more tremor in her legs. I think she has a little more difficulty rising from bed, but perhaps I'm looking for problems. She has done a little more embroidery, actually finishing the stitching of that calendar requiring 3 hoopings, although I was needed for the hoopings & for mounting/reversing the Gigahoop on the machine. But it was an accomplishment for her. She uses her laptop daily.

Saturday we drove to the mountains for a few hours. That night I woke in sheer terror to a scream that the neighbours should have heard. I sat bolt upright in bed (no damp stains fortunately), turned on the light and asked her what was the matter - she softly murmured "What time is it?", to which I didn't bother to answer, switched off the light then waited over an hour for sleep to come. Next morning she doubted my word that she had screamed at all.

Then on Sunday after washing her hair she was incapable of church; was asleep in her chair at 10:30am. On Tuesday KYB even though her legs didn't quite belong to her & a slight headache, then we lunched at the club. Two hours sleep from 3pm after all that. She used the TENS only on Wednesday on her lower back because of a backache that caused her upper legs to tense & stiffen. Only this morning did she require assistance dressing with more than help with her chest harness. Her right thumb continues causing her trouble but she rarely uses the support glove and never the TENS lately. She has not been on her scooter.

Tomorrow we leave for the ex-steel city for me to attend the 45th reunion of those who were employed at the local commercial TV station when it opened so long ago. Just imagine, 45 years of spreading cultural pollution; well not me, I quit after only 4 years & as I think about things, maybe our son was conceived in celebration of leaving the place, yet I don't remember.