Chapter 131 - Where Are We Headed?

I held out my hand to grasp hers across the dim space between our beds. It helps her to rise. She had been in a deep sleep; her 6am alarm beeped for quite awhile before she silenced it. As she returned to bed from the loo she said "I should have stayed in bed yesterday morning rather than getting up. Then I wouldn't have nodded off repeatedly during the day." I hadn't noticed - perhaps that suggests nodding-off has become expected behaviour. Concerned, I said "That will become insidious, you'll end up staying in bed all day & that can't be good." I waited awhile until I heard her slow deep breathing, then detached my CPAP fittings, turned on our CB radios and left for the treadmill in the garage where I intermittently daily attempt 9 minutes of walking.

She has had two appointments with the physio who spoke to our local PD Group many months ago. I was motivated to make the initial appointment after listening to the Counsellor who spoke at our recent seminar. The Physio has assured her that she will be able to overcome the frequent, but mild fortunately, panic attacks that occur daily since she fell some weeks ago. The initial meeting was to make an assessment of her condition and last Monday she worked through some stretch exercises. So on Tuesday I helped her work through them; almost trivial stretch movements that when I attempt them in parallel with her, I find some difficulty. Not so simple! She didn't complete the suggested number of repeats; the effort was too much for her. The Physio has encouraged her to use the treadmill, in contradiction to what the Caring Physician said. When I raised this, The Physio said "Does he look as if he is in favour of exercise?" I had to laugh & say "No." The Physio also checked with the local hospital to discover that the Falls Group is about to re-commence so she has an assessment to attend there as well. We also saw our GP to complete an Extended Care Plan so that we can claim a refund for 5 physio visits from MediCare. Of course, the first account was rejected by an eagle-eyed harridan who stated that an "item number" was missing from the 3 sheets of paperwork.

Her first attempt at the treadmill lasted all of 10 seconds, on the level & at 0.8km/hour. After I showed how easy it was to walk slowly on the machine she made another attempt, asking me to stop it after 20 metres. I stand beside her with my finger on the Stop button. A second attempt yesterday for 5 minutes just short of 70 metres, the whole time staring at her feet, white-knuckle grasping the bars. The tension in her arms was too much to continue further. Maybe with practice. Although walking inside is another tendency toward reducing social contact, at least it will save her from well-meaning people who tell her she "is looking well today" when most often she is taking physical activity to calm mild panic attack symptoms. And stopping to talk for more than 20 seconds causes her to "rev like an old car" as I call the bobbing motion that begins when she stands stationary.

I have fitted two additional grab rails vertically on each side of the shower for her to hold and these are useful when I need to dry her, which is most mornings lately. On Tuesday she found her wet hands tended to slip down the rail when attempting to straighten her stooped posture and that scared her. Yesterday using this same rail was no bother to her. I have also fitted a horizontal rail across the shower on which the shower head can be fitted down low so that she can more easily wash her hair while seated on the shower chair. A detachable shower head is great while one is able to use both hands for different activities at the same time. She seems not keen to be seated to shower; partly because she can't "wash her bottom easily", partly I suspect because that is another sign of debility. Similarly for the wheel chair which hasn't been used yet, although it bounces around in the back of the truck. I have ordered a collapsible shower chair from our disability gear supplier down in Hot Air City and that can be another item that travels with us.

From time to time I raise the issue of attempting a little embroidery; usually the response is that I'm bullying her. Then yesterday afternoon, after asking for some help on her laptop, she transferred a lace bookmark file to her embroidery machine then stitched it! I am hoping she will continue with a little more. I fear her motivation can be charted similarly to the stock market these days.

Chapter 130 - Why Don't I Listen?

In looking at my notes I just realised something important we should have told the Caring Physician on Tuesday. After all, the bloke gives her his full attention for at least half an hour, sometimes more. What I should have mentioned were the head pains she had last Sunday as I wrote in my last post. We did mention her difficulty standing upright and maintaining balance after washing her hair in the shower. He surprised us by saying that is a known problem, many people become dizzy & fall, or suffer TIA's (mini-strokes in my language) while washing hair under the shower due to low blood pressure to the brain when raising the arms high. I can see the headlines now: "Old farts suicide by self-crucifixion while standing under the shower". Anyway, after I rang for an appointment first thing on Monday morning we had a small domestic about the matter, she felt I was bullying by forcing her to go to the doctor. And I was able to get an appointment for 12:30 the following day! As usual, I'm ahead of myself.

From Monday she decided to drop the 2am Sinemet CR, instead having a CR at 6am, 10am, 2pm, 6pm & 10pm. I think we are sleeping better for not waking at 2am, although for at least a couple of mornings this week she has risen before 6am for the loo, found bed impossible then sat in her chair for an hour or two then returned to bed till about 10am. As a consequence, her showers have been much later once she is "on" after the 10am meds. Each morning she has needed help with drying or dressing after showering. This morning, Saturday, she wanted her collapsible director's chair placed in the bedroom at 5am but after finding it uncomfortable, needed help to go to her favourite chair outside in front of the TV where she stayed until about 7:30. I just had to wake her now for 10am meds and she has returned to sleep.

Her autonomic system continues to be a bother to her; the remote controlled pedestal fan that stands next to the TV often switches on for a minute or two to cool her down while watching TV; even on cool nights. Several times she has checked her blood pressure above 150/80 after being seated in her chair for a long period whereas she has always had readings less than 130/70 or thereabouts. Her core temperature always seems to be 36.5 by the digital IR ear thermometer.

Thursday was our local PD Group seminar hosting guest speakers from Big Smoke and Hot Air. She said afterwards she was able to "control things" during the entire 10am-4pm meeting. We had heard a couple of the speakers before. We approached the first speaker, a PD Clinical Nurse, to mention the step-change in her symptoms from the time of her fall 2 weeks ago and was advised to see our neurologist whenever sudden changes occur. We didn't say that a neurologist has not been seen for several years (anyway, he has now retired). I feel content that the Caring Physician gave her a good physical check. That neurologist she had seen was influential in over-medicating her and her memories are vivid & horrid of that. Yet from the PD Clinical Nurse's presentation I realise now that it is a given that PD patients are expected to accept a degree of dyskinesia to gain better movement. In our case, she is unable to tolerate it because the associated breathing & swallowing problems associated with such a state are not tolerable.

The presentation that caught my attention (as it progressed, at first I thought it was too warm & fuzzy) and seemed addressed to me in particular was given by the Counsellor of the state PD organisation. All about stress, anxiety & depression. I saw that we are gradually sliding down that gentle slope and I hope the alert may help us come out of it. The gradual avoidance of social gatherings, postponing activities, being content to remain at home with Internet or TV makes for an easier life in the short term but I feel the SAD (I just noticed that!! it wasn't part of the presentation) symptoms for both of us are growing. At the end of that presentation some poor old soul needed an answer to why she is unable to speak to people about her problems without having to listen to those of other people; the answer she received was possibly inadequate to help her. Yet the question made me realise that we need to be prepared to listen to the others before we can expect like in return. Earlier in the week I visited my friend on the other side of the village; he asked how she was & when I mentioned her fall the conversation immediately turned to the fall he had had the day before - he lives on his own, has insufficient social contact and needed to tell his story. I would have liked to expand on her problems. Which is better for me, to listen or to speak?

Our neighbour at the rear languishes in palliative care waiting for his end quite soon, now 10 days since he stopped dialysis. This preys on her mind, the thought of being helpless at the end of her own time, swimming in her own urine absorbed by extra large incontinence bloomers. She has discovered, when re-ordering her own supply, that these things are available in sizes capable of absorbing 4 litres of urine. Our ex-neighbour now in a nursing home in Big Smoke must be wearing something like that because the staff are not available to assist patients to the loo during the night and quite often neither during the day.

Then she is concerned about her own evacuation difficulties. We installed a bidet because a year or so ago she was having great difficulty wiping herself; when you think about it, a reasonable degree of manual dexterity is required to manipulate a handful of toilet paper even if one has the ability to lift one's posterior from the toilet seat. In her case she needs to grasp the fireman's pole I installed in front of the toilet within easy grasping distance. And then should her clothing fall around her ankles she needs to call me to rescue her. So the bidet is a great help in maintaining her personal hygiene, even though the Caring Physician says that women often suffer infection in other places by using same.

Now if all that is TOO MUCH INFORMATION, consider her situation when faced with having to using public toilets (should they be not marked by blood, urine or faeces and floors not littered with toilet paper, used & unused), caravan park toilets or even motel toilets. Even the toilet in our caravan is far from ideal due the cramped space limiting movement. And most "disabled" (I am often tempted to ask why the plumber is not called to fix them) toilets are designed (by healthy young individuals) with bars in the wrong positions, too great a space in front for a person with one with agrophobia tendencies and doors that even if they latch properly are beyond reach from a seated position. Let's face it, a hunter-gatherer lifestyle does have some things in its favour.

Anyway, early this morning in the deep dark we decided to contact our friends (eager to book caravan slots in a town up the road a bit) to delay the booking for a fortnight and also my Canadian 2nd cousin to say we cannot visit her in the Old Home Town before she returns home. So I made the phone calls. This means we have reduced our social contact once again; we must find our way out of the impending hole toward the light. A few mornings ago I drove up a country road for photos of gum trees for embroidery back grounds; a sense of release.

Just before noon I was called on my pocket CB; she had showered, washed her hair while seated on the shower chair then lost the ability to dry herself & to stand up right.

Chapter 129 - Boiling a Frog Alive

Sudden changes are easier to cope with. The gradual nature of the problem is very deceiving; I wonder whether she is better or worse than she was this day one year ago, three years ........ I could look back through my little notebooks in which I scribble hardly readable notes of my inaccurately recorded impressions of her condition. Or browse back through this blog that is an interpretation of what I have scribbled. Why bother; I know she is worse, the incremental changes are mostly downhill. Yet without my little notebooks I am unable to remember the short term variations, my memory becomes fog.

So I see on Thursday last that she missed the 2am CR and was in & out of bed between 3:30am and 5:30am while she was having trouble breathing; well, her chest feels tight. Congestion at the back of her nose then she spat out a large glob of phlegm. Meds at 6am so by 7:30am she needed to return to bed. She complained of pain in her left shoulder, her first comment about such pain since she fell last Saturday, so I interrogated her for the "exact" after-effects of the fall - Pain in left shoulder extends up into her neck, bruise on her right hip, sore spot on her left leg now seems to be a small lump. The shoulder makes laying on her left side more difficult than usual. Anyway, to sleep to wake at 10am for meds. She completed her puzzle magazines and wrote several letters by hand (most unexpected, I did not see how clear her writing was, I was tempted to check but that would have been too intrusive). By mid-afternoon she complained of being very stiff.

But she slept well Thursday night to Friday morning, having woken for 2am CR, alarm for 6am and rose at 8:30 when she showered, dried & dressed herself then after breakfast, stripped the beds and completed 2 loads of washing. My assistance was needed of course and I hung things on the line. Things were going so well that when I saw our next door neighbour I invited him & his wife in for afternoon tea. I have been feeling guilty about this because they moved in weeks, maybe 6, ago. Of course, inconsiderate of me, I told her after I had offered the invitation. She was not really looking forward to the social contact. Anyway, I had to vacuum & mop the floors, "do" my bathroom, sweep up leaves on the patio and the like as a penance. Our new neighbours are pleasant people, stayed 2 hours. However, she was stressed with visible tremors by the end of the visit.

So yesterday she rose at 9am, saying that her legs had been "twirling" (a new expression not heard before) all night, her left leg tingles and her hips ache and it seems these symptoms began yesterday afternoon. Around lunchtime I encouraged her to come with me to see a wood work exhibition at the Art Gallery for some 10 minutes (a friend has some work on show). Mid-afternoon her back was "tight", she was tired, so slept for an hour and a half. Then in the evening we enjoyed dinner with our friends around the corner, although later she said flatulence & tremor had bothered her. Late in the night I should have realised she had problems for as I turned off my bedside lamp a quiet "Goodnight" came from her bed. Usually, I read a few pages before falling asleep each night (in bed, not in front of the TV) by which time her gentle breathing indicates she is asleep. Soon after I was asleep she had to sit on the side of her bed; her left shoulder was sore, there was pain in her left arm, excessive flatulence, her feet tingled, the pressure points (sore to touch) at the back of her head ached, then each side of her forehead began to ache. Around midnight she took two Panamax and at 12:45am she brought forward her 2am CR (and this is daylight-saving changeover as well). Still awake, feeling no better, she sat outside in her favourite chair reading until 3am. Her head had been congested but after a good nose blow her condition improved, her head was "freed", her temperature was 36.5 and around 4am she returned to bed until the 6am alarm woke us both. After her meds, her feet would not stay in bed. She said her chest had felt tight all night. Unable to achieve comfort she again returned to her chair. At 7am more Panamax. I gave her breakfast at 7:45 after which she returned to bed and sleep.

Tomorrow, Monday, I will ring for an appointment for her to see the Caring Physician. We are thinking she has been on the verge of panic attacks again, maybe not. When, how soon does one "cry wolf" as a complication creeps up on us?

Chapter 128 - Bruises

Over a couple of days a large violet bruise gradually appeared on her left hip (I think the left; I will not ask because she will say you don't need to know). No comment about the sore spot on her right leg. In discussing her fall on Saturday, we believe the following to be the sequence of events: the neighbour came to the back door with a pamphlet, seated in her favourite chair she reached up to unlatch the door & push it open, she took the pamphlet, raised herself out of the chair without difficulty, said "Wait a moment, I have the magazines for you", disappeared into her sewing room some dozen paces away, returned, handed the magazines to the neighbour then fell in a heap. After getting her seated again, she said that her vision faded, although I had the impression at the time that she had suggested a brightening. Later she just said everything became fuzzy.

The mornings of Saturday, Sunday & Monday she missed her 2am Sinimet CR. The alarm is no longer set for 2am, instead she relies on her tremors to wake her, so missing the dose suggests her tremors were not disturbing her unduly through those nights. Last night was different, awaking at 3am with severe leg tremors, she took the Sinimet CR. Tremors kept her awake until 5:30am when she woke me to help her sort out her legs. Her body was all a tremble. In a lather of sweat, although the morning was cool, she took a couple of Panamax then sat on the side of her bed until 6am when she took her 6am CR & Inderal. After awhile her body calmed down, she got into bed and slept until 8:15. She has been showering, drying & dressing herself each morning with only some difficulty for quite a few days now. Today she has been subdued & quiet.

Two things come to mind that may have stressed her & induced last night's problems. Yesterday she attended KYB after an absence of a few weeks. Although the meeting dragged on for almost 2 hours, she did not seem stressed on leaving, although I was from having to wait so long. Then we attended our usual "First of the Month" BYO lunch at our hall. Then late in the afternoon she called me on the CB. Our neighbours from the rear were there seated talking to her. The husband has made the decision not to continue with his thrice weekly dialysis sessions at the hospital. It's not that he has given up; he has come to the decision before other complications overtake him. His wife took him down to palliative care this afternoon. He won't be returning. I told him that I didn't really know what to say and we shook hands, I squeezed too tightly, hurting his arthritic hand. He is a brave man. I think that we have been taken into a confidence that no other neighbour knows about. Anyway, today I asked her whether that knowledge was bothering her; it was.