Chapter 226 - Pain

Some mornings she needs to use the chair in the shower. That causes her difficulty washing her bottom, especially since recently she decided not to use the bidet to clean herself after a bowel motion. The Caring Physician once told her that the use of a bidet tends to encourage UTI's because water is splashed everywhere. So she relies on washing herself with her hand. She has found that she is unable to take the shower head and effectively spray upwards through the holes in the seat of the shower chair, which in my mind, is nothing more than a crude bidet. One morning a brown stain was left on the shower chair seat so I insisted she sit on the toilet & use the bidet. As mentioned previously, she has difficulty using her right hand to wipe herself. We discussed all this. She asked me what I did. "My bum hole is the last place on earth I wish to touch without several layers of toilet paper between my hand & it!" Do all women wash their bum holes with their hands either in shower or bath tub? We all assume that the rest of the world behave as we individuals ourselves do. She described a nurse at Old Town Emergency donning a glove and wiping her; "I never want you to have to do that" she said to me. The last step in having a sense of self management I suppose.

Our local GP has not called so can we presume she has no UTI? Some nights she goes to the loo 5 or 6 times, at other times only 2.

I have positioned her commode in the bedroom; in a position so that she is able to claw herself erect by grabbing the shelving of the built-in wardrobe. This is simply to minimise the pain in her lower back & legs when she gets out of bed & is hardly able to walk. At times she sobs, tears roll down her face. I have no idea how many Panodol she takes. She does not wish to have any Bowen treatment, saying just that it's not sciatic problems. So what I say.

Last Thursday we saw a neurologist recently moved from Big Smoke to Hot Air City. From the sub-continent. Quite a nice bloke; interested in her problems. The chart of on-off times I asked her to fill in she left at home as she thought it was only for my interest. Damn! Even from her muddled description of the meds & frequency she was taking he determined that she was taking too much Sinemet CR. I don't remember him saying anything about the pain or her urinary frequency; what can one expect when she wanted to compress 20 years of history into 30 minutes, placing a lot of emphasis on that disastrous time in the clinic in Batman City about 5 years ago. He wants to see her again in 3 months; he will write to the GP with his recommendations.

On the way home we called in to see our friends; she has MS. he Alzheimer's (diminishing volume of the frontal lobes he once showed us on a scan he was given). He seems unable to speak multi-syllabled words & nouns. A lot of hand waving to express himself.

After a muddled up start with dosage on Friday last she has settled on the following regimen, although she has added 1/2 Sinemet with the Sinemet CR to provide quicker response. I have made a new chart to track the effects these changes. I have no clear idea of what the neurologist suggested.

She was taking

0600 Sifrol, Sinemet CR, Sinemet, Deralin

1000 Sinemet CR, Sinemet, Deralin

1400 Sinemet CR, Sinemet, Deralin

1800 Sinemet CR, Sinemet, Deralin

2200 Sinemet

2400 1/2 sinemet, Sinemet CR

and is now taking

0600 Sifrol, Sinemet CR

0900 Sinemet, Deralin

1200 Sinemet, Deralin

1500 1/2 Sinemet, Sinemet CR

1800 Sinemet, Deralin

2100 Sinemet

2400 Sinemet CR, Deralin

Today I decided that she will spend 5 minutes each hour on the treadmill, setting the wind up alarm she keeps in the kitchen. She has not been doing any Wii for months, hardly walks anywhere or any stitching for awhile.

I just checked at 11:25 that she was drying herself after a shower & was happy to dress herself. She has been on the treadmill twice already, at 9:30 & 10:30. Time for another. Physio session this afternoon.

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.

Chapter 224 - I Need You

"I need you" she just called on the CB radio. I had just sat down in my dungeon to begin typing this. She needed the loo; was unable to rise from her chair. I pushed her walker-trolley in front of her & reached for her hands. She stood, stooped , grasping the handles. Her feet would not move. She has to talk to them. Sometimes I tap them with my foot. She began to shuffle, me in revers guiding the trolley towards the bathroom. "I need the pole" she said; I was standing between the pole & the toilet. I grasped her hands, pushing the trolley out of the way. She grabbed the stainless steel "fireman's pole" a metre or so in front of the toilet and shuffled & turned rear to the toilet; I helped pull down her slacks, then up again when she had finished. On leaving she was more mobile, pushing her trolley. She is unable to rely on me for support; "You move" she says.

The intense pain in her lower legs has mostly gone now since stopping the statin meds last Friday, although she is now conscious of some hip pains. And she continues to plaster Ice Gel or arthritis relief cream on her legs & buttocks, indicating that there is still sufficient pain to be a bother.

Another insidious problem is developing though; her feet are freezing to the floor, worse than ever, worse with the right foot, and this scares the hell out of her because her balance mechanism detects slight leanings but her legs are unable to compensate. Mid-afternoon I had to wheel her collapsible walker into the bathroom (after removing her walker-trolley she normally uses in the house) and after much consternation was able to have her shuffle & turn enough to sit in it before wheeling her out to her normal chair in the back room. On this occasion she was able to grasp the fireman's pole to raise herself but was unable to pull up her clothing and couldn't move slightly sideways to sit on the shower chair left next to the toilet. I thought to myself as I was wheeling her that this is the first time she needed to be wheeled somewhere - maybe the folding wheelchair we have parked away may come into use soon. She detests being wheeled anywhere because she does not trust me not to tip her out; we last used the wheelchair years ago after she fell in the bathroom and tore the tendon in her leg. I have left her walker (it has a seat & foot rests so that it can act as a form of wheelchair) parked next to the toilet so that the next time she gets stuck in there I can more readily get her seated then wheeled out.

She only needed the loo twice last night, ignoring a trip on going to bed & also getting up. I think it was about 0100 she was out of bed, standing stooped, unable to shuffle forwards. She called my name, I held her hands attempting to lead her, she had to talk to her feet to have them move, then without lifting either foot off the floor, half a step forward counting 1-2-3-4 with me walking backwards.

Since she has stopped the cranberry pills for the time being she is no longer "trotting" to the loo and last night she only got up twice to piddle. A great improvement. She will re-commence taking the cranberry pills again once she can trust her stomach but that may not be until after we return from Pivot City after our visit next weekend. At the moment we still plan to go and it will be a great opportunity to celebrate Mother's Day with that part of the family.

After speaking to a friend about inserting the pessaries prescribed by the doctor she learned that it was possible to lay on her back on her bed & insert the device where it needed to be inserted. A call on the CB radio summoned my help. Her hand tremors prevented her from pressing the trigger mechanism to release the capsule. I located the device, pressed the trigger and disposed of the applicator. She will probably require assistance for the next couple of weeks at least until the prescription runs out; I don't know whether this will be needed for ever.

A few mornings ago I was ashamed of myself. Both of us were attempting to pull up her incontinence bloomers (disposable things) when she began to laugh, yet not in a humoured way. I said "Don't laugh, this isn't funny." She replied "If I don't laugh then I'll cry" whereupon she began sobbing. Sometimes I feel a real shit.

This afternoon a friend popped in to have a chat; I took the opportunity to walk to the hall to collect the mail. There wasn't any so I returned with some junk mail for her to read; she likes that. Although only 10 minutes at the most are required to walk there and back I don't like to leave her on her own at present. Whether she would be willing to be assisted by someone else I don't know; I suspect she would probably grin & bear the discomfort for a time.

She continues to make satin nighties. She says it's not possible to buy practical satin nighties. "I am making them for when I go into the nursing home." "Don't be silly, you're not going there" I reply.

Chapter 223 - Musical Pills

I am forever surprised at how much I forget, how events & activities simply disappear into the fog. Last Sunday I wrote that she had only got up once during the previous night. On Monday I began taking notes in my little book again, mainly to be able to quote "facts" to our doctor. I find that others believe me more when I quote from a piece of paper than from memory. Because from 2250 Monday night through to 0830 on Tuesday she had to go to the loo 8 times and her painful legs were crippling her. Same for the next night. I measured a couple of her voidings at 100mL and 150mL so it was obvious that she had an urgency problem and was not passing what I presume should be normally 300 - 500 mL. Since the nation was celebrating an extended memorial weekend when Friday, Monday & Tuesday were public holidays, we were unable to make an appointment to see the doctor until Wednesday. And then our doctor was booked until the following Wednesday, so we opted to see a new doctor to the clinic. He was from the Sub-continent. I was impressed by him; he asked questions, made comments, kept up a dialogue with us. He came to the conclusion that she had an "irritated bladder", and unbeknown to him, she had had a minor operation for that when we were over West 12 years ago. He was about to prescribe Ditropan for her but when I queried about possible issues with her Parky meds, he decided to involve our normal doctor. He left his room, returned because the other was with a patient, then left again to return with our usual. They chattered away in medico techno-speak coming to the conclusion that another urine test was needed. She had brought one so we walked around to the pathologists, 200 meters or so, up a slight gradient. I tend to walk quickly, I had to slow down because she was out of breath by halfway there. She is now encouraged to use the ping pong ball breathing exerciser she was given the time she was in hospital with her kidney problem. "The results will be back tomorrow afternoon" the girl said.

That was Wednesday. Thursday afternoon I bullied her to ting the medical centre; no results. Again Friday morning at 0830. Nothing, so she made an appointment anyway to see the new doctor at noon. She showered, needing help with drying & dressing. At 0900 the phone rang. I picked up the bedroom phone. The friendly & helpful doctor's receptionist (her mum also has PD) said our normal doctor had a cancellation for 0930, could we make it? "Well" I replied "I am in the middle of helping to put on her bra." "That should be fun." "It was when I was much younger" I replied. When we entered the medical centre I quipped "Well we made it but her bra is on back to front." The doctor had to ring for the results which showed that she still had e. coli in her piddle. Another anti-biotic was prescribed. I queried whether the Crestor he had prescribed for her high cholesterol levels may be causing her extreme pain in her legs (I had researched the stuff to learn it was another statin) as had Lipitor except in her hands a year or two ago. He agreed to her stopping the Crestor for a week to see if the pain is relieved. He then decided she should try cranberry juice or tablets as a preventive of UTI. Then he prescribed Vagifem pessiaries as well. Off to the chemist.

Yesterday, that was Saturday, she seemed better. Perhaps less leg pain. Last night she only went to the loo at about 0100 and 0600 which is great except she now has the trots so whether that is due to the different anti-biotic or the cranberry pills (expensive little things they are) we have no idea. She will discontinue the cranberry pills for the time being. She is yet to insert the Vagifem where they will do most good.

During the week her brother-in-law had successful open heart surgery, a friend rang to say he has a "mass" at the bottom of his esophagus and shadows on his liver, another friend in Cane Toad Country has been given a date in June for breast surgery.

This past week she has spent her functional time making herself some satin slinking night dresses as well as some embroidery on another calendar. I removed the MDF ramp constructed last weekend to raise the head end of her mattress - it was not helping very much raise her head so that she could lay on her back more easily; she has found extra pillows are enough.

At the moment, we think we may head south next weekend.