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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