Chapter 232 - Discovery

She still has a UTI. I sampled the water in her toilet's bidet after not using the water in its tank for 12 hours (she used the other toilet instead) - it was clear. The UTI tab that changes colour now is the nitrite (changes to pink) so I asked her not to take any of the anti-oxidants (Vitamin C, CoQ10 etc etc) for two days last Tuesday & Wednesday; perhaps excess chemicals in her urine might affect the UTI stick readings. No, the UTI results were the same. Usually each morning our idle chatter includes comments about night time frequency (indicative of our age group) and on Thursday she mentioned that for the previous two nights she had "gone" a couple of times between bedtime & midnight but had lasted until around 6AM without another trip to the commode. This puzzled me so I searched the Big Library in the Sky for diuretic properties of the number of anti-oxidants she takes, only to learn that Vitamin C & Vitamin E are both diuretic. She has been taking Vitamin C 2x500mg every 3 hours from 6AM and Vitamin E 1x500IU at 9PM. So beginning on Friday, she has ceased taking all dietary supplements after 6PM. Friday night we vaguely remember her using the commode twice up to 1AM then she slept till 6AM. Last night, Saturday, she went 3 times between 1030PM & midnight, took her first meds at 6AM then rose to use the commode at 8AM. There are no changes without consequences - she reached the commode (only a few paces, more like a dozen shuffling hesitant steps for her) to find that she was unable to pull down her incontinence pants, sat on the commode without being able to rise again, even by grasping the shelving of the wardrobe in front of her (the sliding doors are left open for this purpose), so she yelled out my name. I awoke with a start, looked over at her bed, was unable to see her anywhere in the gloom (curtains closed and bedroom door only partially open) and jumped out of bed in fear. As I helped her stand & pull her pants down she said "I slept through, in one position all night, I'm stiff & can't move." She apologized for waking me.

I have wanted to see Mary duff perform at the local club in a few weeks. We won't go though; she hesitates, is fearful of, being in the midst of large crowds in congested places. We saw "Sunshine & Oranges" on Thursday (the sort of movie hardly ever seen amidst the usual noisy, sex, drug, yobbo, magic rubbish dished up to the non-discerning of this town) when we sat in the 2nd last row, which has a wide space in front probably for wheel chair access. She is comfortable there. And I can help her to her feet, rather than her having to stand, mostly by her own efforts before shuffling sideways to exit from other rows. When we lunch at the club, she chooses the less crowded, coffee area that has a few comfortable well spaced wrap around chairs.

She is completing a beautiful quilt that has been covering the lounge room floor used as a construction area. A few days ago she completed a Japanese themed wall hanging to be given as a present; I contributed the red work design of a geisha girl that she embroidered onto several panels - I get great satisfaction when I can help in this way, as usually I am only asked for comments about colours or construction.

Yesterday morning I read a North American PD newsletter which made me react by sending the following email to our State PD body, with CC's to a couple of our local parliamentary persons. Names have been expunged.

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In the Northwest Parkinson's Foundation News Update of 22 July (a North American news letter) I read about V. M., Parkinson's nurse in Victoria and also that Tasmania has FOUR PD nurses.

My wife P & I will soon celebrate the 20th anniversary of her PD diagnosis. Out of the blur of of neurologists, GP's and medical professionals P has consulted across 5 Australian states (for no other reason than that my job moved us around a lot) who, well intentioned though they may have been, either over or under medicated her and gave gratuitous advice, such as "stop shopping around for a neurologist" and "face the fact that you have PD and learn to live with it", there has been only one person that "stood by her", J. D., Parkinson nurse in Perth WA and gave her help when she most needed it.

All Persons With Parkinsons (PWPs) and their carers, I am sure, notice and tolerate the episodic nature of the management of PD by neurologists and GPs. Unfortunately, a PWP suffers an ongoing, never-ending chronic condition that requires more than a few minutes, even an hour, once every few months, to convey the enormity of the issues that impact their lives. Their torture is to live with their disease, rather than die of it.

So we were pleased to support G. & M. O., who manage our G. PD group, when the PD nurse training scheme was begun in NSW. P. even consulted one of the trainees from the G. area for pain management. We understand that that "trainee" failed to complete the coursework. I am unaware of the outcome for the other trainee who was supported by our G. group.

I believe there are several Parkinson nurses in NSW now, although none in our area. I can only wonder whether the selection criteria for supporting persons interested in Parkinson Disease nurse training was not strict enough to choose persons able & willing to contribute immediately to the existing population of PWPs. Perhaps professional bureaucracy gets in the way of empowering caring nurses to do the job for PWPs. I do not deny that any training & information given to medical professionals of all types will in the long term be beneficial to the community; it's just that PWPs need greater professional support right now in the Southern Tablelands of NSW.

Please let me know the current position with PD nursing in NSW. I just can't get over the fact that Tasmania has four PD nurses!

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Chapter 231 - Urgency

Five times till 1AM, then 4AM then 5:45AM she said. That's after we went to bed about 11:30PM and she had her meds at midnight. She had a bad night. A few nights ago she only rose once. This morning as I came to she was sitting on the side of her bed. In her dressing gown. She got back into bed but she became "tangled", unable to move into a comfortable position due to the dressing gown. She needs to have a slippery nightie on to move easily on the satin draw sheet. I helped her; she decided to go outside to the TV. I stayed up as well; had breakfast, she a slice of toast & a chai latte. I put the little fan heater on for her & a little later she was too hot so I turned it off. The day has begun again.

Yesterday I photographed another urine test strip dipped in her 6AM sample. At the 2 minute point the leukocyte tab had not changed colour; after an hour or so a pale mauve. So there remains a trace of infection. But since her night time frequency remains irregular yet mostly excessive irrespective of whether the leukocyte tab changed to purple within 30 secs (the suggested "reading" time is 2 minutes) or not it seems to me that UTI is not the major cause of her night time difficulties.

I'm tired. I should have stayed in bed for another hour or two of sleep this morning, even though she did not disturb me during the night. I don't mind staying awake to around midnight although last night I was keen for bed around 10PM to read for awhile but needed to stay up because she fears remaining up when I am in bed, "You will go to sleep & not hear me if I call". So I treadmilled for a 1/2 hour while watching a lecture on a DVD. So if I go to bed "early" she needs to come to bed as well & is then uncomfortable until her midnight meds. She says going to bed is the worst part of the day.

These days I attend a discussion group once a month. I had suggested that we go to lunch at the club after I returned at noon, bursting for a piss. Forgive an old man's concentration on bladder retention issues. After lunch I went again. Then after shopping & home about 4 PM I needed the loo again. Fair enough for an old bloke I suppose after a coffee with lunch & another after shopping, yet she did not need to go until we returned home. At night time, in bed, that is a different matter with her.

More about super market shopping on Thursday. We drove from the club around to Coles' car park. She collected her new glasses from the optometrist; we left meds prescriptions at the chemist, we checked KMart, unsuccessfully, for the royal wedding DVD (later I ordered it from the "Noise" shop over the street) before the supermarket, she pushing the trolley as a walker with me pulling the trolley at the side to relieve her of the weight. Bad timing; 3 parts of the way around she needed her 3PM meds and feeling to unstable to take them standing she staggered out of the supermarket to a bench seat near the chemist. I continued in a hurry to collect the remaining items on her list. Then she called me on the phone (or was it the CB? I don't remember) to say she was unable to rise from the bench seat. So leaving the trolley in the aisle I rushed through the bottle shop, helped her up & helped her back into the supermarket where she needed some hair spray & things to complete our shopping. Then as we queued at the checkout she had to leave the supermarket to find a seat outside, for while she moves she is OK but when she stops walking she begins to wobble & shake. As we walked by the little coffee shop that sells my favourite pear & walnut cakes I tempted her with another coffee. She readily agreed. Later she told me that she agreed simply because she did not feel up to going all the way out to the car park.

She has been stitching another calendar and fiddling with some pretty pieces of fabric. She wants me to digitise & stitch an image of a church for a friend's wedding anniversary; rather than copy a photo off the web, I suggested we drive to the place, an hour away, to take my own picture. I wonder whether the thought of driving today caused her a bad night; she puzzled this morning whether today was the last day of school holidays (suggestive of busy roads). Anyway, I decided not to drive, today's weather looks lousy so I will disregard copyright instead.

I see on my gauge that the wind is blustering up to 28km/hr, just enough to roar around the eaves & whistle occasionally. It's cold in my dungeon. She calls on the CB for another bottle of water. When I take it to her she says she feels like going back to sleep; I do too, I turned the heating on in the bedroom; I'm yawning. Should the phone ring before lunch time I may become abusive.

Chapter 230 - Testing Times

On Monday she began the new course of anti-biotics after I collected a sample for pathology and tested a separate sample myself, taking photographs at 30 second intervals. Both the leukocyte and nitrite tabs changed to dark mauve & medium pink respectively. I have done my own tests every second morning. Wednesday morning the colour changes were much diminished, Friday's hardly a noticeable change for the leukocyte tab, and now this morning there are no noticeable change in colour of any tab, even after two hours since the stick was immersed (the leukocyte tab is meant to be noted 2 minutes after dipping and I have seen that the color then deepens further with time) when both leukocyte & nitrite tabs as white as the driven snow. Having said that, I just compared today's used stick with an unused one and perhaps there is the slightest discolouration of the leukocyte tab, maybe it's still damp. By the way, the anti-biotic she has been on is Ibilex 500, 1x3 per day, this being a generic of Cephalexin Capsules BP.

Did I say last time that the GP suggested magnesium tablets for her leg cramps? She has been taking them since last weekend. When I ask about pain & aches her answers tend to relate to that point in time. I have noticed however that this week there have been fewer & fewer exclamations of pain "grabbing her" in the legs so I take that as a qualitative measurement that her cramps have lessened considerably. She continues to comment from time to time about aches and yesterday she said her right hip (I think) was painful. I repeatedly point out that she is sitting on an office swivel chair in her sewing room, usually crookedly at that, and that is not good for her hips. She brushes away my comments by saying she has to sit just where she flops. She has difficulty getting on & off a kitchen chair on the carpeted sewing room but not as much when at the kitchen table where she does much of her patchwork - of course that area of the house has a bare timber floor. Each evening when going to bed I rub cream into her feet before she places them onto the circulation booster. So exactly what has reduced her leg pains? Who knows, we will keep up more of the same so that the pain does not make her cry and make her fearful of falling.

Since last week our lounge room floor has been covered with the makings of another quilt. When sitting in her favourite chair in front of the TV she usually is completing the puzzles in her two weekly puzzle magazines or she is progressing through the 4 volumes of the puzzles from the TV show "Letters & Numbers". So she remains busy in mind & body. Some mornings she has asked for the treadmill.

Of a night time there is no hesitation in using the commode because she can hardly shuffle to the end of the bed where it has to be placed carefully the most convenient distance from the built-in wardrobe and her walker trolley near by with its brakes on because the wardrobe shelving and the handles of the trolley need to be used to assist her rise from the commode then turn back to the bed. Sometimes she needs assistance to get back into bed. She continues to use the side-sleeper pillow (sort of banana shaped) even though she finds it a curse on those rare times she wishes to lay on her other side. ; it may not last very long. She usually has me heat her larger seed bag to place around her neck to ease aches & get her to sleep. I am distressed to see her, during , bent over, touching our two beds for stability as she shuffles between them to the commode. During the day when she is "on" she walks stooped, the living caricature of an old lady. One night this week she only rose once; usually it's 3 - 4 times between 1AM & 3AM and most often she does not wake me unless she is fearful of falling. Some mornings I need to assist after her shower & with dressing. She continues to change her incontinence pants twice a day.

Last week I caught a snotty disease. She accused me in advance of giving it to her, so I did. So this week she suffered but now she is pretty well free of it.

Soon we must make the decision to attend an important family event; we feel we want to go, we feel we should go but I cringe at the thought of putting her through the stress of travelling & the discomfort of staying in motels; and probable panic attacks. I also hate the thought of us hardly ever leaving fortress home except for local shopping & doctor's surgeries.