Chapter 349 - In a Bog

Early last Monday in the dark hours her nappy pants leaked. So at 0345 her sheets were changed just in time for her 4am meds. At week's beginning she was still on the low dose regime dreamed up by somebody as she was discharged from Hot Air City hospital. The additional Sinemet 100/25 suggested by Dr M, neuro, last week at 1000, 1400 and 1800 were to be ignored by us because of the worse  burning and tingling in her legs and feelings of awfulness.

Polly the PD nurse rang before 8am to hear what must have been a tale of woe from me; I can't remember. I then rang the Personal Care Coordinator at Wild Dog Care and she said they are able to provide transport on Thursday next week for the initial consultation with a neurologist at West Beer in Big Smoke City, leaving our place at 7am.

Had I mentioned that her last B12 injection had been overlooked back last April? An appointment had been made with Dr I, local GP, for 12 noon on Monday, but by mid-morning Monday she said she would never be able to get in and out of the car, so I rescheduled the appointment to 1415 on Wednesday.

Tuesday began well; she felt up to attending respite at Wild Dog, she pushed her trolley from bedroom to breakfast then into her sewing room to send a sympathy card to a friend from her PC. Unfortunately I received an SMS then a call from her to collect her from Wild Dog, so by 3:15pm I had her at home where the wheelchair was needed to take her to the loo, but she was unable to stand sufficiently to raise her pants so it was easier to remove them, wheel her into the bedroom, where she was able to use the bed end to pull herself up sufficiently to adjust her clothes. She said she was unable to sense the floor beneath her feet. She was cold, so I switched on the small oil heater. Her toes were tingling as she too her meds early at 3:45pm. Shortly after 4pm both legs had small rapid tremors and her left leg had a strong burning on outside from knee to foot. By 4:30pm I had transferred her to her recliner and she watched a movie. At 6:30pm she needed the loo but was unable to stand from the recliner. I waited patiently while she explored grasping things, arm tests, table edge, wheel chair handles for a minute or two before I lifted her with my left arm beneath her right and swivelled her onto the wheel chair. Then the opposite arms to lift, or rather slide her onto the loo, doing so was almost impossible and I had to rip her incontinence pants off. Then 15 minutes later with equal difficulty I had her back on the wheel chair. Then thinking like nursing home staff, I decided the best place for her was in bed. And that required more linked arms to pull then push her from the wheel chair onto her bed. Her lower body was not "frozen", just immobile, unresponsive and she was unable to push down with her arms to raise her bum off the wheelchair seat. A toasted cheese sandwich then she slept for awhile. By 11pm her left leg was bent and very painful, foot bent inwards; I rubbed an ointment on it.

On Wednesday we were asked to make an appointment with Dr M, neuro, for the nerve conduction tests; Thursday 3:30pm was decided. He does not want her weaned off the Apomorphine, although that was the plan on leaving hospital and the suggestion was for her to go back to Stalevo. The usual tingling and burning, most in her left leg. It was hell getting her into and out of the car to make the appointment at Dr I, the GP. On the way in I discovered that a resident nurse takes blood samples, so on the way out, the samples for blood tests Dr M neuro had requested last week were taken, which pleased me no end, since that saved transfers in and out of the car down at the pathology place. Dr I gave her the B12 injection, some scripts and wrote a referral for the neuro at West Beer. At home later the usual transfers on and off the loo. By 7pm we decided bed was the best place; unfortunately I was unable to transfer her from wheel chair to bed so she remained in the wheel chair until 8:30pm I was able to pull and push her into bed, then fitted her nappy pants. She was settled by 9pm. This is just the greatest in quality-of-life scenarios folks!! To cap things off, I realised about then that the front tip of my collar bone was tender to the touch, there was slight pain when I hung my right arm down but no pain as I moved my right arm about or manipulated objects in my right hand. Of course, an OT would not approve of my handling techniques even though no one ever described how to handle a person who is non-responsive below the waist. I like to tell myself that my shoulder is improving now at week's end.

So on Thursday after a much-the-same sort of morning, around 1pm she easily, well for us anyway, was able to get into the car and after I called at the chemist for some meds we drove to see Dr M neuro at Hot Air City. I nearly forgot, last time we saw him he said something like he had not given her the level of meds she had been on when she was in hospital to which I replied Dr D neuro had also changed her meds prior to the Apomorphine trial. So in preparation I had collected all the schedules I had drawn up for her use going back to when she first saw Dr I neuro in 2011; doing so took me a couple of hours then I left the damned stuff at home! We told him her reactions to taking another Sinemet 100/25 at each two hour point during the day, she suggested spreading the dosage times out to 3 hourly, to which he replied "Yes, why don't you try that?" to which I objected, wishing to return her to the known conditions prior to her being in hospital for assessment. Anyway, he connected her right leg (OK I said to myself, the better leg to be used as a reference and I saw what appeared to be a text book action potential waveform, (not having seen one on a screen before) but then I was distracted in an attempt to find the meds schedules in our bag I had prepared but forgotten. So I did not see the waveforms from her left leg. He pronounced the test was successful, showing nothing was wrong with her legs. We accepted his word for that. Strangely though, as we drove away, she said the pulsing on her right leg was sharper and more intense than that on her left and he did not seem to do as much attaching of leads to her left leg as to the right. I must research nerve testing. Out the other side of Hot Air City she needed the loo badly and it was not too difficult to use her walker to wheel her into the Disabled at McDonald's before we indulged in junk food.

Friday morning ushered in my resolve to return her to the meds she was on prior to entering hospital this last time. Miraculous! at 8:45 she declared it "good to be able to move again" even though there was tingling in her feet.Yet by 9am she felt sick and did not eat all of the banana she has on toast for breakfast. By 10am she was sorting clothes in the laundry, although feeling a little slow but not "hungry" for meds which she took at 10:10am. A little later she mentioned a headache around her eyes since getting up this morning. Even though the sick feeling lingered, she next attacked bathroom cupboards, throwing out much stuff before attacking the kitchen cupboards until at 3:15pm she asked for a bowl, retiring to her recliner saying she felt quite "whoozy". Her feet tingled, her head tingled, stomach was churned up, tremors in chest until bed at 9pm. Although concerned about her "awful" feelings, I was greatly relieved she was able to stand and sit on chairs and the loo without assistance, although once she needed to be wheeled to the loo. At 9:40pm a symptom she has never described before; "pins and needles" in the tip of her nose. She declined to take 10pm meds although at midnight she took a Sinemet 100/25 and a Deralin 40. Around 1am while dreaming she said "I'm going away" followed by "I've come to say goodbye", the very first time she has spoken so clearly in sleep. Later when she woke there was no memory of the dream. 

At 1am Saturday only her feet tingled and her voice was quite flat. Then she woke quite shaky at 2am and took a Sinemet 250/25. By 6am meds her feet were tingling (never seems to stop), the left foot had "bands around it", felt cold but then her top was out of the bedclothes. After breakfast she attacked her sewing room, intent on getting rid of stuff. The young Personal Care person was offered a pair of very light shoes, never worn, but the offer was not accepted since the size was too large. Later I asked where the shoes came from since I had never seen them, to which she replied "I bought them for the wedding" after which tears quietly rolled down both sides of her face; the wedding we had hoped Apomorphine may have provided enough mobility for her to attend, the wedding last November of our eldest grand daughter. From mid-morning she began to feel sick, unstable, left leg weak, stumbled but had mobility, albeit unsafe. I rang Wild Dog Respite to say she was not attending today. She had a "lump" in her stomach most of the day, urging her to the loo. These feelings persisted all day; I won't detail them since they fill 3 pages in my note book. Although she never said it, she felt like shit.

In the early hours of today, Sunday, I woke realising I had given her a heaped teaspoon of Metamusil because on Friday she had problems with bowel movements. I wondered whether the stuff bulked too much causing her the bilious feelings? So this morning there was no Metamucil in her fruit juice; she only ate half a slice of toast and half a banana this morning. Today she has a small headache over her left eye, appears slightly lethargic, cleared some more of her sewing room and has been sorting buttons and similar stuff.

For unknown reasons Apomorphine is now available only in 5ml ampoules; while I had some 2ml ampoules left I was drawing up two 5ml and one 2ml ampoule for her 12ml Apomorphine plus 8ml saline daily infusion. Today I had no 2ml ampoules left and was sorely tempted to only fill the syringe with 10ml, i.e. two 5ml ampoules, as an introduction to weaning her off the stuff, and I may have had the introduction back to her "high" level of L-dopa was going smoothly, but my trouble shooting background suggests one change at a time.

All the same we are in a bog; the mud becomes deeper which ever way we move, I'm hoping there are no crocs lurking.

Chapter 348 - Reversing

On Thursday Dr M. suggested adding an extra Sinemet 100/25 halfway between her  0800, 1200, 1600 and 2000 doses in the schedule directed by  Hot Air City Hospital. Since it seemed proper to begin this change on a full day, an additional Sinemet 100/25 was taken at 1000 on Friday.

Later on Friday I sent the following email to an interested person

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Today she has only taken one additional dose of Sinemet 100/25 at 1000. Since approx 1100 she has had bursts of burning in her left leg, feet have been tingling badly, has been nodding off, needed assistance to the loo but at 1305 returned from the loo unaided (unusual since returning from hospital), her head has been tingling, left eye blurred and painful, headache. At 1210 her BP was 136/89 78, at 1305 her BP was 155/98 115, at 1350 her BP was 146/99 130, right foot trembling, right leg aching, feels tight in the chest, has had a headache for about 10 minutes, chin is wobbling. I told her NOT to take a Sinemet 100/25 at 1400, now at 1410 she feels a little ill, has burped, chest still feels tight, says she feels "pressure" on her ears.

I suspect she is on the verge of a panic attack. I will have her take a Sinemet 100/25 as per 6th June schedule at 1600 and from here on she will continue on that schedule until she sees [West Hospital]     clinic.

There is obviously a very delicate balance in her metabolism of meds which switches her between too little and too much. Better sluggish than over the edge.

*****************************

I had an appointment at 1530 to discuss matters with a local "Social Worker"; I was in two minds about going, but since she was much calmer by 1515 when a Carer organised from the place which provides personal care arrived I decided to keep the appointment. I think the Carer, a bright and cheerful woman was good for her because when I returned a little before 1700 they were both chatting and laughing.

However at 1710 as I assisted her to the loo (she had held "off" while I was away) she needed a kitchen chair to sit on at the halfway point, then I had to assist her onto the commode chair (after making room by pushing the kitchen table out of the way) before wheeling her to the loo then back to her recliner. This loo visit took over 20 minutes just for a piddle.

By 1840 both her legs were twisted, the right shaking, severe pains in the calves of both legs, right hand shaking. She took two Panamax. I had her in bed and in her nappy pants by 2100.

She slept through the midnight meds but woke at 0400, feeling immobile, otherwise OK. By 0430 both legs and feet were tingling up to her knees. The side of her left leg "burnt" intermittently.

At 0700 Saturday when I rose the bursts of burning continued in the side of her left leg continued as did the tingling. The Personal Care lady arrived to shower and dress her at 0800. Her showering takes place on the commode/shower chair in which she is wheeled to and from the shower. I had to help her to stand from the commode, hanging onto the bed end for support while Care dressed her in incontinence pants and slacks. Then she had to be assisted into the wheel chair to be wheeled out for breakfast.

She was not too bad around 1000 when I drove her to Saturday Respite, although she needed pushing inside on her walker. She probably had a reasonable day. The same on returning home at 1600, when helping her out of the car was difficult. We carry a collapsible aluminium chair in the car for such a situation; to slide her from the car seat onto the chair which is dragged sideways to allow the car door to be closed before positioning the wheel chair to take her inside.

Today Sunday has been a repeat of the previous days.

0715 Wanted to piddle, transferred her onto the commode.
0730 Needed to poo, so wheeled commode to loo. Did very little.
0743 Swapped Apo pumps, 1 minute left on old, 24:05 on new.
0754 Meds.
0800 Personal Care to shower her. I was needed to assist her stand while dressing. Attempted to use a Pelican belt.
0845 Left leg burning in bursts about 2 minutes long.
0900 Leg burning wearing off.
1145 Meds.
1150 Feels as if she is falling off the Revolutionary chair, but is solidly seated, back against rear of chair, tremors in legs which ache, no burning but toes tingle.
1200 Yawning, tingles in both feet, some burning. Can't get off the chair.
1205 Feet up on a kitchen chair to stop the sliding-off feeling from the Rev chair onto floor, doesn't want to risk a transfer to the recliner.
1215 Needed feet off chair into foot stool and pillow.
1216 Tingling from feet to knees, also in buttocks, feet onto floor.
1220 Needs Rev chair pushed into table to support head in arms on table top., feet on square pillow.
1225 Microwaved spud, cheese, sliced gherkins and sour cream for lunch.
1235 Able to stand from Rev chair, pushed trolley the few paces to her recliner.
1330 Took herself to the loo pushing the trolley, then tidied our bedroom, placed elastic belt for the Apo pump on the towel warmer in the bathroom.
1345 Pushed her trolley back to her recliner.
1350 She dozed off.
1405 I convinced her to take at extra Sinemet 100/25 (as per Dr M's suggestion on Thursday) to test whether tinglings/burnings are induced.
1410 Took herself to the loo pushing trolley. Head tingling.
1415-1425 Because she was unable to get off loo or stand long enough grasping the fireman's pole to raise clothes, I transferred her onto wheelchair with pants down into the bedroom where grasping the bed end she was able to lift her bum far enough to pull up her incontinence pants and slacks, then wheeled to recliner in back room. She thinks the Apo pump elastic belt is still around her middle (it was removed after showering hours ago and just recently she placed it on the towel rail to dry) and because her bra was tight I undid the hooks and she removed it. She was hot and needed her cardigan removed.
1430 She wanted her soft boots and socks removed. She says the Apo pump sits heavily on her chest.
1440 She says her left foot has tight bands around it and her neck is stiff.
1515 Feels cold, both feet are "tied up", right foot is tingling but not the left. Feels very tired. No burning. Her mouth is tingling. Yawning. Socks and boots back on.
1530 Set up a Doris Day movie for her.
1600 Time for her scheduled meds. She refuses to take another Sinemet 100/25, is distressed, her head is tingling. Both legs are dystonic, feet pointing inwards, feels as if there are bands around them. I didn't try to convince her to take the Sinemet.
1700. Movie finished. She needed the loo, unable to stand from her recliner, I transferred her into the wheelchair, only slight difficulty pulling up her pants when she finished, when wheeled back to her recliner.

The above is a layman's assessment of an average shitty day. As I have said often, a 10 to 20 minute inspection in a neuro's office where a few steps are taken, a wrist or two are wobbled, a facial expression is observed, fingers are tapped together are absolutely meaningless measurements of a PWP's quality of life. A neuro needs to see a PWP in a real world environment, not in an office, nor in a busy crowded noisy non-private hospital ward.

I note how well she was while the Carer was with her on Friday afternoon and presumably during the 6 hours of respite on Saturday. I suspect she, and other PWP's like her, control themselves, bottling up their needs and emotions while in public or with strangers or even with friends and relatives.

Is such behaviour a good Quality of Life?

I must be careful, otherwise an average reader may think I am on a short fuse.

I don't think I mentioned the call from the neuro rooms in Big Smoke City on Friday making an appointment with her for 10am on Thursday next week. Seemingly to discuss Duodopa or DBS. Not much parking available but the railway station is close by she was told. That's quite OK until one realises she fears accessing trains (did you notice the gap between train and platform?), at least one change of train is needed to get there, the earliest train from our country bumpkin town gets to the City about 1030 if it's running on time. So we drive (self or community service), allowing for peak hour traffic conditions I estimate 2 1/2 to 3 hours to drive there not taking into account parking, and a nervous distressed PWP who is intolerant of heavy traffic conditions. Or perhaps we stay in a nearby motel on the previous night? But just note our early morning hassles described above. Tomorrow I need to re-schedule the appointment to suit us.

Chapter 347 - A Lost Cause

"I'm just a lost cause" she said as we drove away from Dr M's rooms in Hot Air City today.

Both of us had a bad night last night, were running behind when the Personal Care lady arrived at 8am to shower and dress her; gracefully gave us some assistance moving her from the bed onto the commode/shower chair; overnight nappy still in place, so she had to attempt to partially stand while I tugged at the nappy, pulling it forwards and after several attempts, dumped it in the waste basket. After the shower, the Personal Carer called me to help move her from the commode to a seated position on the bed for dressing. Then again onto the wheel chair to be able to wheel her out to her breakfast of toast, banana, a glass of grape juice (which she didn't touch) and one of those small drinks full of good bacteria.

She needed the wheel chair to take her into the garage to the car. We left home about 0930, arrived in Hot Air City half an hour early for the 1115 appointment, half the trip in fog, stressful for her. I took her into the waiting room immediately because she had enough mobility to slip from car seat to her walker with little trouble.

Once in his consulting room Dr M thought she looked better than when he last saw her. Perhaps that was a couple of weeks ago when I think she said he poked his head into the ward when the hospital residents were talking to her; otherwise, he has a photographic memory. He spoke of the benefit of her reduced Sinemet intake while I attempted to point out that her mobility was worse. However, the tingling and burning in her feet and legs had reduced. Being a smart arse, I asked her to stand from her walker and after 3 or 4 attempts she managed to do so without assistance, before shuffling to the door and returned to sit again in the walker; he was impressed that she moved so well; I was disappointed she walked so well. He asked how she got to take so much Sinemet because it was not at his direction. I told him Dr D. (at the hospital) who I believed worked up her medication level to prove it ineffective before putting her on Apomorphine, and that gradually her Comtan and Sifrol intake was then reduced to zero. I can only wonder why his records of her meds intake do not reflect this. I handed him her current schedule which he may have transcribed into his system. He was typing a lot. He asked how much Apomorphine she was taking, "12 mls" I replied, "how many units is that?" he asked, I replied "I only deal in mls". What in hell's name do people think I am, some sort of expert because I administer Apomorphine at home as well as in two hospitals when the staff were too "busy" to take care of her???? I just draw the solution out of ampoules into a calibrated syringe!! He repeated that the Sinemet reductions had benefited her; I pointed out that for some time, maybe 2 hours, before each 4 hour dose of Sinemet 100/25 she was looking forward to the next dose. She affirmed this. So he said take another Sinemet 100/25 at the 2 hour point, making it 9x Sinemet 100/25 daily. Then both she and I mentioned the necessity of taking doses at 2am and 4am (prescribed by the last hospital visit) when other professionals suggest we both need uninterrupted sleep, the reason for the incontinence pants at night. I think he agreed but now I'm unsure whether he was suggesting those two doses be eliminated. The consultation was on the point of winding up when we mentioned her feet and legs were insensitive to gentle touching with my fingers but she was able to detect pressure from my finger nails. Also, a few days ago she asked me whether the floor tiles in the bathroom were cold because she could not feel the tiles on her bare feet. Dr M. grabbed a very large tuning fork ( must be only a few Hz, no tone was audible), tested it on her arm where she was able to feel the vibrations yet not on her lower leg. He commented that the dystonia in her left foot was just "a symptom of Parkinsons" and could be treated with Botox for $500 a time, perhaps lasting for 3 months but could not be guaranteed of success. He was non-committal when asked about the referral to the Parky crowd in the west of Big Smoke City. Mention of nerve conduction testing returned the comment "If necessary, we can do this next time, only takes 10 minutes. I'll see you in 3 months" and we were out the door and he was welcoming a Big Pharma rep that had been waiting patiently. We were not offered his usual sub-continental handshake.

We ate some McDonald's in the car on the outskirts of Hot Air City. She was not capable of leaving the car. Same on arrival home; wheel chair straight to the toilet for poop, then wheel chaired to the back room where she could not be transferred onto her recliner. About half an hour after taking 4pm meds she was able to do so with my help, of course. Out in my dungeon typing these notes I heard her yell out; rushed into her, but she said she only yawned. Back to typing, phone rang, just her ringing on the VOIP phone to ask for a cardigan, she was cold, and her trolley with the CB radio on it was too far away for her to reach it. Some time later she said she was still cold, and yawning, so I took a small oil heater into her and shut the sliding doors.

Shortly after arriving home a call from the office of the neuro in the west of Big Smoke City to say she could see Dr F. in September or earlier to see someone else. She queried me; "Someone else" I said, thinking let's get this over and done with.  She now has an appointment for 10am Thursday July 3rd. Now to figure out how to get there; drive up the day before to stay in a motel nearby for one or two nights; she is not keen on this idea, not knowing what so-called disabled facilities the motel may have. I will see whether the Care place can offer a round day trip under the Level 2 package we are now signed up members of.

Back to nerve conduction testing. On her last visit to Dr M. she was to have a test, but he said on that day "Perhaps next time." Then on leaving the public hospital a couple of weeks ago after her "assessment" she was given a card advising that an appointment had been made for her for an outpatient  nerve conduction test on June 23rd at 9:30am. A letter dated 5th June, the day after leaving the hospital, then advised her that the appointment had been cancelled because Dr M intended to do the test in his rooms. Yet today he was not interested in the test. That totals 3 proposed but not performed nerve conduction tests. Is there something painful or ominous about these tests? In the referral letter from Hot Air City hospital to the one at Big Smoke, mention is made of the proposed tests. Also that the apomorphine "dose will be weaned following this admission". So far no one has mentioned the rate of said "weaning", and I forgot to raise the issue at today's appointment. Perhaps a FAX tomorrow for Dr M. to clarify the weaning.

So now we are to embark on another round of enlightening more neuros and associates of the 23 year long experiences of an atypical Parky patient. Perhaps that arrogant neuro over in Black Swan City that told her to "stop shopping around for a neurologist to fix your problems and just learn to live with it" was correct. Maybe he was right, none of them have been of much help, seeming to ignore the whole person, intent upon treating the obvious issues that fall within their narrow view of their job. Years ago, in the computer business, I can remember the catch phrase "Think beyond the fix"; I wonder whether medicos think likewise? I am sure most don't - "take another pill and see you in 3 months".

In the middle of the last paragraph (about 1745) she called me on the CB; needed help to the loo. I helped her stand from her recliner, she shuffled pushing her trolley, I pulled her pants down while she hung on the fireman's pole before she sat. A short one this time; she held the pole while I pulled her pants up again, then she had to sit on the toilet again before attempting to stand again (sometimes it takes 3 or 4 stands/sits before I put up her clothes and adjust the elastic tops not to apply pressure to the infusion site).

She couldn't stand this time, she sobbed, she didn't want the wheel chair (she sees that as failure) yet after several minutes of attempting to stand she admitted defeat and I brought in the wheel chair. Why can't the professionals assess a PD patient at such times, why can't they pull down pants, why can't they pull up pants then wash their hands to remove touches of wetness, and on and on it goes. Short bursts of observation up to 3 months apart are irrelevant and misleading. And the recent assessment of her behaviour in the Hot Air City hospital was a waste of time  because the nursing staff were too busy to observe one patient out of many when they were tasked with important matters such as wound dressing, dishing out medications, taking vital sign readings, toilet assistance, bed making, completing mountains of paper work etc etc for many other patients to be concerned with noting down at regular intervals, even hourly, observations about one patient.

So says the frustrated carer of another lost cause. We know there is no "fix", even years ago when prophets said in 5 or 10 years time there would be. In many ways for unknown reasons her quality of life (and mine) is much better than others I read about (on certain forums) or see in real life. May it remain so.

Chapter 346 - Mobility Matters

She has maintained her low intake of Sinemet, almost always needing help to rise from a chair, bed or loo. At times she becomes stressed when I say I must move her in the wheel chair; even so the arms of both of us have become sore from lifting/pulling.

Perhaps professionals say that the patient must press down on chair arms, head over toes, to rise from a seated position mostly she lacks the strength to do that. Very rarely since the last hospital visit does she walk alone to the loo; she calls me on the CB then we debate whether she is able to shuffle behind her trolley or needs to be seated on the wheel chair. If the latter, then it is a matter of positioning it as close as possible, angled so that she is able to slide from chair or loo to wheel chair, although the fixed arms tend to get in the way.

Getting her off her loo (the bidet) is usually easier, although a little more complicated. On taking her into the toilet I ask "Will this be a quick one or long?". If long I usually go away until she calls again on the CB. Once I return, she stands in a stooped position, fiercely gripping the "fireman's pole". I must stand on her left side (the loo is in the corner) and reach my left arm around her back to grab the right side of her incontinence panties, while my right grabs for the right hand side, so I stare down into the toilet bowl. Time is short before she must sit down again, so sometimes we cycle through these positions before I am able to roll the panties back up. I need to be careful that the damned things don't tear. She must then sit again before I have the chance to pull up her slacks, after which she sits again. Then we decide whether she is able to shuffle away, me guiding her, or we use the wheel chair. She hates the wheel chair, prefers her walker which doubles as a light duty wheel chair, but sometimes it is in the back of the car or, for several days this week, at a bike shop having a brake cable repaired. Either while she holds the fireman's pole or later at a chair, I need to unroll or pull up the front band of the panties, as well as that of her slacks, above the Apo pump infusion needle position.

Unintentionally peering into the toilet bowl suggests whether she needs more or less Metamusil in her morning fruit juice. When she is in need of Metamusil I could be excused for thinking that a rabbit had pooped in the loo; there are lots of little "pebbles", as she calls them, perhaps due to diverticulitis.

She continues to wear those enormous nappy/bloomer pants to bed each night. I seem to have got the hang of fitting them each night without having a leak by the morning.Our morning routine is for me to rise about 0700, complete 10 minutes of Wii Fit Hula Hoops (for my lower back and hips) before a showering and dressing. Then I remove the nappy/bloomers if she hasn't already done so, fill a syringe with Apomine and saline, swap over the pumps after attaching a new infusion needle, clean and ointment on the old site then a little vibrator on the site, place the new pump into its small almost water tight case sealed with sticky tape, attach the case to the elastic belt placed around her waist, help her onto the commode/shower chair, and hopefully Personal Care then rings the doorbell. Unfortunately, they often arrive 5-10 minutes after we are ready, she sitting starkers on the commode/shower chair, warm towel over her shoulders, all ready to be wheeled into the shower, so sometimes she becomes a little excitable. While Personal Care helps her shower and dress I prepare our sparse breakfast. All complete by approximately 0840.

On Thursday we saw urologist Dr H., in Hot Air City, about a suprapubic catheter. He is quite happy to do the job in two weeks, saying he does not "do" incontinence and believes Botex injections in to the bladder cause lack of any flow. He stated that there is much less chance of infection from this type of catheter. But after returning home we discussed the issues involved and since the neuro has plans to send her to the PD experts in the west of Big Smoke, we decided to postpone a catheter job until after that.

During the week we learned that the nerve conduction tests scheduled for 23rd June at the Hot Air City Public Hospital have been cancelled, to be done at the neuro's rooms next Thursday when she was scheduled to see him anyway; last time she saw him he cancelled the tests. Several days ago I found that, with her eyes closed, she was unable to detect where I touched her lower legs or feet, until I applied pressure with a finger nail. I fax'd the neuro for advice about the wisdom of doing the catheter job prior to further PD investigations but have yet to receive a reply. No bother, She can get by without catheters after the conventional approach became such a problem and we will not be straying far from home, close to our garbage bin for nappy disposal.

Her quality of life? Crappy.

Chapter 345 - A Weekend That Wasn't

Wasn't quiet, last weekend that is. Last Friday afternoon Polly the PD Nurse in Hot Air City wanted my PWP in hospital for assessment that evening, or Saturday or Sunday. We opted for Sunday and a private hospital. The private hospital was not possible because the neurologist lacked bed access to it so the public had to be tolerated.

Saturday morning 0257 she woke me. She said "I feel at the bottom of a cliff, my back is broken". Some minutes later she said she had woken to a piercing pain in her back. At 0308 she looked at the bottom of the bed and said it looked "all twisted". I then helped her lay on her left side; "It's tingling all the way up to here" she said indicating her waist. Then she noticed the low buzzing sound from the control box on her bed.. Then she remembered she hadn't taken her 2am meds. Then a little later "All this tingling going up the backs of my legs to my waist". She wanted me to go back to sleep. Then she wanted the bed straightened with respect to the bedroom wall (the bed is wheeled). I lowered the bed's head end  packed with pillows but she wanted it raised a little. Then she wanted the bed clothes back on saying "These things didn't happen in the other bed" (the one I'm now using). She woke me again at 5am due to back pain; again she had laid on her back for too long without moving.While she spent the remainder of Saturday at the "Sheltered Workshop" I entertained myself seeing "X-men" (a typical junkish attempt at science fiction) and reading New Scientist at the Club.

So on a rainy Sunday afternoon down we drove then difficulty parking close to the front door; she needed wheeling in her walker; stuck in a two bed ward; noise and people everywhere; an environment more than suitable for raising stress levels above normal if such is required for an assessment of an individual's performance. In an effort to minimise her stress (as well as mine) I cunningly changed her Apo pump and syringe at 1300 prior to leaving home, otherwise the infusion would have timed out around 2200 that night and who in the sodding place would have been available to complete the job? After all, this is a busy neurological department she was in, full of patients and short staffed (according to nurses we spoke to later). At least during daylight hours on Monday Polly the PD Nurse and associates were on duty. I suggested to the person who booked her in to make sure this hospital claimed against that tight arsed fund Medibank Private as public hospitals are intended to do (why should the tax paying public cover her costs when we are insured privately) but he returned later saying it was impossible to do so in her case (I did not understand the reasons). I left her at the hospital to have an excellent steak at the usual motel we stay at. Early Monday she rang me asking to be taken home because she had been moved to a smaller shared room, she was stressed, wanted out of the place. I rang Polly.

When I returned to see her late on Monday morning Polly the PD Nurse had replaced the Apo pump syringe. She was taken to physio but returned because she was too unstable. I left to drive home for the night.

Tuesday morning I returned to the hospital during her brief absence at physio, from where she was returned because her Apo pump had bleeped before running out of juice. There seemed no one was available to replace the syringe of juice so I did it. We had brought sufficient Apomine, saline, 20ml syringes and infusion needles to last a week because we had been told these may not be readily available. Hospital staff agreed to her self medicating with pills so Apomine was not much different.

Sometime later on Tuesday or early on Wednesday neurology staff examined her (I was not present since I had returned home) and Wednesday morning they decided to reduce her pill medications by about half immediately, then to "wean" her off Apomine in preparation for her to be examined by DBS and/or Duodopa specialists in Big Smoke City. A referral, we were given a copy, has been forwarded there. In the mean time, a nerve conduction test is scheduled for her at 0930 on the 23rd of this month. Then she was welcome to stay another night or leave for home, we opted for home, even though I had returned to stay several nights in the motel.

I replaced the Apo syringe again on Wednesday and we left for home mid-afternoon. Not quite the possible week long stay she expected thank goodness; although the hospital staff are excellent, no complaints at all, but cramped and short staffed conditions when we pay to avoid that are intolerable.

The given new schedule is a bit of a joke when other medical people keep telling us the importance of un-interrupted sleep; either catheters or incontinence bloomers being solutions to the problem of nocturia. The neurologists suggest taking Sinemet 100/25 at 2400 and 0400. Who gives a piddle?

Also, our own arrangements with a urologist in Hot Air City occur this week. Since her brief hospital stay she has opted not to wear the large fill-your-pants bloomers; preferring instead to use the commode. A shame I bought another couple of packs plus additional pads of the things. And we have a small stock of catheter bags as well in the cupboard.

I don't think I mentioned that the lifter/hoist ordered for her by TACP was rejected by Enable (a State body) because her Level 2 Home Care package, began when TACP "discharged" her after 8 weeks, is a Commonwealth responsibility therefore equipment and such are no longer funded by the State. I suppose the little sod who picked up so quickly on that small point win her/himself some browny points. In one way it doesn't matter because professionals say such equipment requires two persons to operate it, one not being the patient. I will remember this when I do my back or arms a disservice.

In attempting to understand the fine detail of these "packages" I stumbled upon a government web site (perhaps helpful people have referred me to it but I fail to remember) which has been helpful, yet vaguely incomplete. Much as I detest doing so, I rang the accompanying 1800 number, spoke to a helpful well informed woman who was able to answer my questions (only once verifying one point with a superior); when I made some off-hand facetious comment about public servants, she protested that she worked for an answering service contracted by the Commonwealth to answer questions. One can only wonder whether real persons work at all those government desks; but of course, they must, because a lot are about to be retrenched to be replaced by contractors I presume.

Returning home at 1700 on Wednesday a quick trip to the loo before sitting on her recliner. By 1845 she felt cold, tired and had a weepy left eye. I switched the heating on. !940 asleep, dreaming, chuckling and violent kicking. 1945 laughing, speaking loudly and clearly although still asleep then on waking still felt cold. 2000 meds then at 2050 pushed her trolley to the loo before bed, wearing a pad but not the bloomers. The commode was placed in a convenient position at her bedside.

Thursday 0120 she woke having slept through 2400 meds, which she then took and I assisted her onto the commode. Again on the commode at 0337 when she took 0400 meds. She got herself onto the commode at 0645, her legs kicking wildly, mostly the right one going sideways. At 0700 I  helped her shower seated on the commode and dressed by 0728. We had decided for a couple of mornings not to have Personal Care until we sorted ourselves out; I had come to the conclusion that doing her pump on going to bed was too much work when I was so very tired each night and perhaps mornings were more appropriate albeit more congested. The following continues to list events on her first full day back home:
0730 Sit to stand from bed, pushed trolley out to kitchen table.
0804 Meds, feet tapping briskly on the floor.
0900 Unable to sit to stand to get to recliner, needed assistance, chopping pumpkins to prepare pumpkin pies on small table at recliner.
0915 Phone call from her sister.
0930 Still cutting pumpkin.
1005 Sit to stand, pushed trolley to loo, piddle and poo.
1015 By alternating her hands on the fireman's pole, was able to pull up her incontinence pants and her slacks, then wash hands, push trolley to lounge room (all without assistance.
1050 Pushing trolley, ache down her left thigh.
1120 Can't sit to stand, assisted her with trolley to bed to change the Apo pump (timing has remained at late morning). She said her "feet were expanding from inside themselves, inside their skin", much pressure and tingling but not "burning".
1133 Pump off with 31 minutes left, new pump with 24 hours and 5 minutes.
1145 Wanted to stay on bed until 1200 meds.
1150 Both lower legs aching while seated on side of bed, raised bed to assist her off it. Needed to sit on a chair after leaving bedroom, severe pain in both legs, feet flat and shuffling.
1155 Head tingling, suddenly felt chilled, feet tapping.
1200 Attempted to assist sit to stand but failed.Transferred to back room in wheel chair where she remained for meds.
1230 Still in wheel chair, trimming pieces of pumpkin.
1330 Unable to sit to stand from wheel chair to go to loo, wheel chaired to loo for piddle, with much difficulty transferred her onto loo, when finished transfer onto walker
1340 wheeled into back room.
1350 Wheeled her to kitchen bench top and small wheeled table where she continued with the pumpkin pieces.
1400 Mashed pumpkin and making pies (I had cooked pumpkin in the microwave and provided her with other ingredients from the cupboard).
1550 While seated her feet were tap dancing and needed the thick square cushion beneath them for relief.
1630 Finished pies, needed loo, tingling on top of head. Wheeled her to loo.
1645 Walked out of loo after poo pushing walker and took one pie out of the oven (I had set up the oven and placed three pies into it earlier) then pushed walker to her recliner.
1715 Knitting
1830 Felt cold, needed a jumper
1900 Ate frozen dinner that I "prepared" plus some pumpkin pie and ice cream.
2000 Meds, watched TV.
2130 Pushed trolley to loo for piddle. Assisted her from loo to bedroom.
2145 Into bed.
2400 Meds

And so it goes on, and on .......

I arranged for Personal care to begin from Saturday morning 0800 and I replace the Apo pump and syringe around 0745.

Friday afternoon I had an appointment with a Social Worker (Shrink?) at Community Nursing. My PWP intended to go with me but she was unable to leave the car where she remained for an hour and a half. Next time I will arrange respite.

On Saturday she attended the Sheltered Workshop while I shopped for groceries and stuff then repaired our coat hanger which fell off the wall and rewired some flaky cabling to a couple of our TV points.

Some phone calls from friends interested in her state of affairs and a short time ago a friend from around the corner visited.

When I look outside the clear blue skied chilly weather makes me yearn for a drive into the bush, but all that happens is that I remember I must take washing off the line, probably damp by now.