Chapter 225 - Travelling Nightmares

She just poked her head in the door, waving sheets of paper from a Parky book she bought on line yesterday, "Taking anti-biotics upsets PD meds. Especially Sinemet!" She remembers hearing or reading about this once before. That may explain the muddles of the last few weeks. I suppose I mentioned that she had two courses of anti-biotics to rid her of the UTI that the doctor believes was causing her an excessive number of trips to the loo each night. The first gave her a bad case of the trots, the second of a different type didn't.

Anyway, when she expressed doubt to the doctor that perhaps she shouldn't travel to Pivot City to see two of our grand children perform in "Seussical the Musical" he was voluble that she should go. We left on a Thursday, hoping to get away at, say, nine maybe ten. We left at noon. She was in pain. Her meds failed to kick in. She felt terrible. She was stressed. We stopped for biscuits & cheese at the Booking rest stop and again at Tar Cutter for an ice cream. She arrived at the Old Home Town in reasonable condition and after a good room service meal had one of the most comfortable nights in a motel bed she can remember. We checked the mattress for a brand name, only finding some trade information. The Friday travelling to Pivot City was uneventful. That is until we entered the motel room to find a double bed covered in a monstrous doona affair that seemed to have two parallel hollows in it which she immediately feared would trap her and prevent her getting out. She phoned reception to be told no single beds were available & all other rooms were taken. In investigating the bed I found that it was two narrow singles (most certainly not the size we are used two) zippered together. I un-zipped them & from the double bed linen & stuff in the cupboard we made two messy beds. Next day we told the room staff not to bother attempting to make the beds; we were content with what we had. Next time, if ever, we must book two beds as well as a disabled (sorry, it is now PC to ask for an "accessible room" - either term sounds ridiculous when thought about; would anyone want a room that was disabled or ask for a room that was inaccessible? Tell me!)

We arrived early at the theatre on Saturday morning. A most ideal venue, multi-levelled with wide ramping halls (as well as steps) and our seats (obtained by our grand daughter) were ideal; at the end of an aisle at an entrance with space in the "air lock" of the double doors to leave her walker. A fantastic, very professional performance, so much so that I forgot the performers were all school kids. Our grandson played a leading role as "Jo Jo". We had hoped to see the kids after the performance but we wished to avoid the crush of the crowds so we were among the first to exit, an usher even wheeled the walker up to her. Later, after I turned my mobile phone back on, I found a message from our daughter, sent in the middle of the performance, saying where to meet the kids. A shame, but we visited next day after the other performances were over.

We left for home on the Monday morning, happy & satisfied with our visit. Some kms north of Southern City, at the new service centre where once was a mobile diner that sold jam filled donuts, she wanted McDonald's. She didn't eat all her chicken wrap, had a so called apple pie & their white chalk filled coffee. Somewhere north of the Army Town (roughly where a major saga began years ago on our return from the PD clinic) she began to have breathing problems, began to look very pale, skin cool & dry although she thought she was hot & clammy. I pulled into a rest stop & walked her a little without any real benefit. So instead of chugging up the 4 lane cruise controlling at about 90 I sat on the speed limit until Old Home Town. As we approached the exits I gave her the option of the motel or the Base Hospital Emergency. She chose the latter.

Quoting from my emails to our daughter; firstly at the motel

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From about midday she began to feel breathless then by about 2PM she began to feel stressed, looked pale & although I felt her skin to be cool & dry, she thought she was clammy. A short walk at a rest stop did not help. Given the option of motel bed or Old Home Town Base hospital she opted for the latter. The usual delays & confusion at Emergency. I was rude to the young female doctor who turned out to be very helpful and caring. Blood tests, chest Xray, finger prick sugar test. Blood pressure 165/80. Of course, apart from a lot of tremor, her condition had normalised by the time she was examined. They failed to take a urine sample because of physical problems & the need for a bowel action at the same time. We were given a sample container which has now been filled from that collected in her commode chair pan (sterilised with boiled water) back here at the motel. We will leave it at the hospital in the morning on our way home . The doctor will ring the results through & copy our GP. Every thing else was "normal". The doctor has described it as a "Vasovagal pesyncepal (sp? - doctor's writing poor) episode" on the script for the urine test.

I just wonder whether this was another manifestation of her PD, as is her autonomic issues with excessive perspiration and body temperature and fluctuating poor vision.

Our visit later this month to the new Indian neurologist may shed some light on this.

Tomorrow we will go straight home without visiting RJ, as that will simply be more stress for her.

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Secondly on the day after we arrived home

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I have been rolling the whole business over in my mind.

A few years ago (can't remember exactly, but since we have been here, so less than ten) her incontinence, mostly urgency I think, was, in terms of comfort & public embarrassment, eased by receiving the government subsidy for the supply of the appropriate bloomers. I suspect that incontinence pads/pants contribute to UTI problems. I wonder whether women with incontinence would fare better UTI wise by not wearing any nickers at all (sounds exciting!), thereby avoiding a warm moist breeding ground for bacteria. In her case there is also the difficulty of pulling them down & the worse difficulty of pulling them up again one handed because she is usually in a meds state that requires her to grip a wall fixture with one hand as she does so.

She is only right handed. Wiping a soiled bum hole with a tremoring hand is fraught with difficulty as well as some problems in getting her hand in the right area anyway. She is aware of the golden rule to wipe towards the rear, not forwards. So a few years ago we installed a bidet on her toilet. Fantastic. The brown soiled areas on the incontinence bloomers I noticed when I disposed of same had largely gone. The caring Physician warned her that bidets tend to encourage UTI's because the washing tends to spread e. coli all around the place. Perhaps so but is that better or worse than soiled moist pants anyway. During this last session of UTI she has stopped using the bidet, although I haven't noticed staining on the nickers I have disposed of. Perhaps I may encourage her to change the nickers several times a day as good hygiene practice. The additional costs would be worth it.

I have pondered about how she sits on the loo. She is unable to lower herself sedately, rather simply flops onto the seat. Then voiding happens without further ado. Personally, I wriggle a bit or pull my buttocks apart to ensure a clear way for rumbling tumbling matter. She doesn't. I have never mentioned this to her. Also, I have never volunteered to wipe her bum; she may not appreciate that final of all indignities and I am not keen to offer the service.

I was surprised the other morning when used the the Vagi-fem pessaries for the first time. Apart from being unable to stand on one leg as the instruction sheet suggested (a friend a few doors away suggested laying on the bed with a leg raised/bent) she muttered that she hoped she could find the right place to poke it. She found it but was then unable to operate the release trigger; I had to do that. Since that first time she has been able to do it herself. I thought her comment strange; I thought any person at all would be able to find any bump or orifice on their own body without giving the task any thought on a moonless night with the lights out. I wonder whether this relates to her inability to perform pelvic floor exercises as recommended by various physios over the years?

In regards to eating McDonald's, she has since said that her unsettled feelings began prior to that lunch, which for her consisted of a chicken wrap (she gave me some of the chicken from it) and "apple pie" and coffee made white with their special brand of chalk (she usually doesn't drink coffee ever). For the remainder of the 5 days we were away we had two motel room service meals, a lunch and dinner at your place and for other meals we snacked on dried fruit plus occasionally dry biscuits & "healthy" processed cheese slices. She only drank water.

Speaking of food, her swallowing problems require her to use gravy and/or sauce quite liberally. She had difficulty swallowing that very moist roast beef on Sunday; I'm sure no one else did. Since I am chief cook & bottle washer here, I intend to take other steps to make her food moist enough without needing to rely on such salty. fatty condiments. I think we need to attempt losing weight as that will help her body functions as well as lower back & hip stresses and pains. Losing weight has not been one of the blessings she has received from PD unfortunately.

She has admitted to minimising her water intake while travelling because 1- finding clean disabled toilets where I can assist her and without needing to queue which causes her to tremor, 2 - toilets in private homes having limited space (making it difficult for me to assist), patterned tiles on the floor 3 - toilet rooms that have items to grip, if not rails (which are often positioned incorrectly by trainee plumbers/carpenters/odd-job men), then door knobs, cupboard drawer handles, toilet roll holders - anything that she can use to stabilise herself when attempting to extricate herself when I am unable to be present.

I may post the above on my Progression Two blog. People tend not to talk about such things, PD is nothing more than trembling hands. Shit happens.

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And thirdly

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On a freezing cold day, to the doctors; he rang Old Home Town emergency & had them FAX what results they had ready, more tomorrow. He prescribed two 6 day courses Canesten for thrush. not on the PBS! We went prepared with another sample but he said it was not needed at this time. He will contact us if the final report requires additional action at this time. The chemist took her into an office to instruct her how to load & use the applicator. She now has a cold & my throat is becoming a little rough in sympathy. We also stocked up on Activia yoghurt, Yakult and Vaalia Innergy. He gave a referral for the Indian neurologist in Hot Air City. She has been taking the cranberry pills & drinking plenty of water - I hate cold water!!

Time to grill some fish.

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So back to real time entry. Due to the cooler weather, she has been wearing pajamas & a jacket to bed. Many of her pains have returned. Yesterday I asked what had changed (since I was once a KT trainer) & some time later she "The pajamas! They have seams!" I think I mentioned her recent discovery that a seam on her satin drawer sheet initiated pain in her leg, and that discovery had her make larger drawer sheets so the were no seams on the top of the mattress. So last night I turned up the wick on the bedroom thermostat, to the extent that I was slightly cooked around 0330 and had to wind it down. At 800 I interrogated her about the effectiveness in wearing a summer nightie and raising the room temperature. She became upset with me for asking; I really don't think there was any impact on her pain; she dodged the obvious conclusion and said it helped. So the room will be heated at night. I know she has low tolerance to weighty bed clothes which are not an option.

She was due to see but cancelled a visit to the Caring Physician this week.

We had intended on our way home on Tuesday to visit our friend in a town south of here but her condition suggested we avoid that. We have learned that his oncologist has told him that she can "control his condition but is unable to cure it". I had thought of briefly visiting an old school mate in Old Home Town on our way through and have learned by email since that he spent 18 days in hospital while a decision was made whether to chop off half a foot (diabetic). A friend up in Cane Toad Country is to have another mastectomy in June as well as separating from her husband last week. Our brother-in-law is recovering from open heart surgery. Some other friends & rellies last week left for Canadian Rockies holidays. We must fit somewhere in between these extremes.

I made comment to her yesterday that our doctor did not call about the FAX'ed results from Old Home Town hospital emergency as he said he would if the results from the urine tests they performed indicated UTI. Yet preliminary results Fax'ed when we were in his room the other day suggested there was. So what do we do? Last night she went to the loo 3 times between about 10PM & midnight, twice to 5AM & 3 times then till we rose about 8AM. As our daughter suggests, keep up the cranberry pills and the yukky yoghurts.