Chapter 368 - Record keeping

I had assumed that I kept track of her medications quite well until this week when I verified with her that the schedule I last made was correct. A check before I sent an email. "No" she said "I changed that dose just before we last saw Dr M. and he said it was OK to do so." I have no memory of that decision being made. Therefore an incorrect schedule has been given to other medical pros. She had been working from the old schedule. making the appropriate change, until the sheet of paper became too tattered and dirty, so was thrown out. She now has a new schedule sheet as follows:

Someone asked about the effectiveness of Apomine to "fill in" the off times between conventional Sinemet doses. I really have no idea whether she is ON or OFF; she just tends to need help with mobility problems at anytime. She needs assistance to get to the loo and help to lower her pants about 50% of her trips there and probably 90% of the times to get off which mostly involves pulling up her pants and trousers or skirt, for she is able to raise herself into a stooped position by holding the "fireman's pole" with two hands but needs at least a third to cope with her clothing. It's times like these I drop my CB radio in her loo, as I did a few weeks ago; a quick rinse, disassembly and slow drying in the warmth beneath the back awning resuscitated the thing, when I was looking forward to having to buy a new model.

I digressed; she has difficulty describing her OFF times to me or anyone; so she describes her experience by her need for medications thus (in my words):

"How effective is Apomine? On her current 24/7 dose of Apomine, she begins her conventional medications at 6am, then is eager for Sinemet at 10am because of shaking in her body and legs , from 1pm she is "off" and tired and her 2pm Sinemet may not kick in till 4pm, then she is "hanging out" for Sinemet at 6pm and from 8.30pm she feels "useless" until her 10pm Sinemet in bed."

I can't make sense of this, I doubt professionals can. We are not in a position to make comparisons with other PWPs, even though we are acquainted with a few though our local support group. With this designer illness and the ability for a PWP to maintain a degree of secrecy about her/his symptoms in public we are unable to appreciate how "bad" she is. Maybe she is much better than many others when her 23 years experience is taken into account.

Outside the house she remains seated in her wheel chair, inside she sits on either of two rotary chairs at the places where she sews, sometimes eats, or sits/reclines on an adjustable chair in the TV room where she usually eats and these days uses her Tablet. She uses her walker to shuffle from bed to bathroom, or from one of her three seating positions to the bathroom, or from the bathroom (last port of call) to the car in our internal garage should I take her to Respite or medical appointments. Perhaps if she is up to it, I'll take her down town for a coffee, thus her wheel chair. At times when things are bad in the house I wheel her in the wheel chair or the commode.

I was shocked a few days ago when she was unable to recall, in the presence of a visitor, a conversation we had with a third party the day before. To illustrate how bad we are both becoming, I can't remember now what the conversation concerned, just that I was startled she had no recall. But who am I to talk? Someone told me that sleep deprivation may cause the irritating use of pronouns instead of nouns in conversation. She does that more and more.

Last night she began shouting in her sleep, thrashing her arms about, from midnight. On and off for an hour or so, although perhaps much less, torture seems to last a long time! After each shout I dozed again only to be woken with a start at the next. Then sometime before her 6AM meds she was uncomfortable in her adjustable bed, head and foot ends raised, pillows packed around her, needed help to get up. So off she shuffled to her sewing room where she did fabric things until Care came at 8AM to assist with her showering and dressing.

As I mentioned last post, I was faint with low blood pressure last Saturday, confused by differing readings from our two blood pressure monitors (I must be sick; I have ordered a more reliable instrument) so a few days later I took both down to our local doctors' where the clinical nurse checked my BP with the old tried and true stethoscope method and the results compared favourably with those of our two, one a cuff the other a wrist type. However, I must make an appointment to chat with the GP, my symptoms may be related to broken and short sleep, but maybe not.

Seeing the clinical nurse was beneficial for me in another way; while sitting in the waiting room I noticed a climbing rose in bloom hanging over a brick wall surrounding a small courtyard. The nurse allowed me into the courtyard to take some shot of of the roses, wall, garden furniture. Some few days later I have completed digitising, stitching and mounting my image of the courtyard, the first satisfying piece of embroidery I have completed in 18 months. The exhilaration of the experience was such that on Thursday I was the brightest and most alive than in a very long time. Sadly I've regressed again. Even my sagging Lumosity scores recovered a handsome amount!

But I ramble. She has mentioned, and I have noticed, her right foot is turning in in similar manner to her left. Also, as she attempts to stand from a chair, her feet tend to slide forward, rather than remaining in a fixed position on the floor while her knees should unbend, which they don't. As if I pull her forwards out of the chair. She never uses the physio method of pushing herself up-right using the chair arms.

For the last few days she has complained of black "floaters" in her field of vision; I'm unsure which eye or both.

Chapter 367 - Where Are We Heading?

Last Saturday, a little before 10AM, we were ready for me to drop her off at Wild Dog then continue down town for some shopping, lunch, hear a lecture, when I decided I should not drive, feeling faint, not quite with reality. A phone call and an email to opt out of things. I spent the rest of the day on the lounge recliner, reading, snoozing, being irritated  from slumber by phone calls, which she is under strict instructions not to answer, wishing to avoid those automated, numberless, foreign calls wishing to advise us about our computer problems or phone account problems. Genuine calls can leave a message for us to call back. I checked my blood pressure using my old arm band model at 99/56 79 at 9:30AM and 15 minutes later at 106/58 81 then with her wrist model as 144/79 77 and 130/74 86. In hindsight I probably should have seen a doctor. Today, Monday, the readings from both monitors were 132/79 80 (by mine) and 137/91 74 (by hers after replacing its batteries because of an error indication).

Wednesday last week I took her to see our GP Dr I. Yes the urine sample showed e. coli, so he prescribed  antibiotic Alprim which she began taking on Thursday. Alprim, along with the daily Macrogol, she blames for bloatedness, frequent and long visits to the loo, no comments about "pebbles" but still a feeling of incomplete voiding. After the antibiotic course is complete I intend to take another sample for testing, just to be sure this current bout is over. She says that she sat on the loo between 2AM and 4AM this morning; I was unaware of that.

Dr I. was not keen on using the commode pan to collect urine samples, even though I explained I had poured boiling water over it. So we ordered a plastic bed pan from the chemist; a metal one as Dr I. thought preferable was not available.

Neither of us are sleeping well. One night last week I set up a wireless video IR camera trained on her bed to record her at sleep. We both slept reasonably well that night, and, although I have not checked the recording in detail, I saw nothing unusual. Maybe I'll set up the camera on a few more nights.

I am reading a sequence of entertaining novels at the moment and am acquiring the bad habit of reading while on the recliner, feet raised, and dozing off. Yet to feel the benefit of it.

She is making a lot of use of the Surface Pro I bought her; she can sit in the TV room with it rather than using her laptop with two monitors in her sewing room. Frequent calls for assistance discourages me from recommending a touch screen device for a PWP, yet her need of help to rescue her from confusing displays is yet to discourage her. She has been using web mail, not ideal, so I must give her a more conventional and familiar email client.

This morning in an effort to motivate both of us for exercise I had her do some pedalling while I did Wii Fit Hula Hoops. I had made a crude DIY wooden base to retain the pedal device in position at the front of a chair. Quite quickly she mentioned that the outer side of her left calf had begun to "burn"; she persevered until I finished  Wii Fit some minutes later. Half an hour later on the way from the bedroom after the Wild Dog care person had showered and dressed her, the left leg collapsed. Somehow she remained upright holding the bathroom door frame until the carer grabbed a chair to sit her on. Perhaps better to pedal later in the day.

I think it was last Thursday that we attended our local Parky group, a bite to eat at the club, followed by some fabric shopping and a visit to the podiatrist. And yesterday Sunday plus another day forgotten, we had coffee at the new place at the shopping centre; it has been there almost 6 months, at least, yet she had not seen it before.  On that forgotten day, as we left the shopping centre, she noticed a shoe shop which we later left having bought an expensive pair of soft leather shoes, not the sort of thing others would buy but much more practical.

Chapter 366 - The Cost of It All

She has been taking one sachet of Macrogol each day for a week now. There have been fewer comments about "doing pebbles" and she may even be sitting on the loo for shorter periods now. Initially she complained of feeling bloated, a lump in her stomach but such seem to have gone.

Her nightly routine has settled to a pair of incontinence bloomers plus an additional pad from 10PM each night and somewhere between 5AM and 6AM she lets down the rail on her bed & goes to the loo, sometimes the commode. I am sleeping without interruption, except for my own piddle initiative around 4AM, but I still feel exhausted during the day and my Lumosity scores continue to sag as a result. Yesterday I opted out of attending the funeral, in Big Smoke, of our best friends' daughter, partly because a drive of 2 hours is beyond me at the moment and partly because of her toiletry needs.

A call from our GP's receptionist a few days asking her to attend for an appointment, no urgency, so I suppose the urine test she gave over a week ago does not show anything terribly nasty.

We have yet to contact Dr F. at West Beer to say that the scheduling of appointments to a spinal specialist and a consultation about Duodopa are not happening as he told us they would. Meanwhile the number of small nodules beneath the skin of her tummy area causes difficulty finding a suitable infusion point. I use the ultra-sonic vibrator on the area about once each week. Neither of us are eager to use other flabby parts on her body, parts likely to be bumped.

We were running slightly late this morning so I did not massage Tiger Balm cream into her hips, lower back and legs, sometimes across her shoulders. I am unsure whether there has been any beneficial effect. Tearful comments about tingling and burning in her legs reduced before I began massaging her with the vibrator, but I'm unsure.

Last Monday I collected scripts of 2 and 5 mL ampoules of Dopamine from the local hospital pharmacy. So I continue to prepare the nightly syringe with two 5mL and one 2 mL ampoules for the 12 mL required. Neither the Apomine nor Sinemet dosages have changed since last reporting in this blog.

Wild Dog care ladies continue to assist her shower and dress each morning. Not so much a luxury as a way to begin each day brightly and cheerfully without becoming bed potatoes. And she attends respite there on Tuesdays and Saturdays.

Having checked our bank transactions I decided to total our monthly expenses relating to her care.

Chemist, for Opsites (sealing to cover infusion sites), sticky tape, ointments, over-the-counter drugs (Vitamin D, Macrogol, Tiger Balm) approximately $150 per month.

Incontinence bloomers and pads approximately $150 per month.

Accessories for Apomine  (infusion needles, syringes, saline, alcohol swabs) approximately $230 per month.

Daily Care (subsidised) approximately $270 per month.

Respite 2 days per week approximately $160 per month.

Thus, without including pharmacy fees for meds (none till 2015 because we exceeded the safety net by mid-year) our expenses are approximately $960 per month.

As the warmer weather returns her temperature regulation is causing her discomfort. She frequently has the wall mounted fans in the TV room and bedroom running. Any effort causes her clothing to feel damp. Two nights ago I ran the air conditioner (wall mounted in the lounge room, not ducted) but she quickly felt chilled in the bedroom (quite pleasant to my senses) so I turned it off again.

At this moment, on a cool damp grey Sunday morning she is enjoying making a quilt on the kitchen table.

Chapter 365 - Forever Weary

In the gloom of early morning she said "Is today the 9th?" to which I replied "Probably". It is so, our 51st wedding anniversary. And the fall of the Berlin Wall.

Each night she alternates between putting the incontinence pants to good use and getting up to use the commode. But even when she piddles in the pants she usually wakes to take them off or remove the extra pad she inserts. I have become skilled at feeling the weight of the disposals as I tip them into a plastic bag for the garbage bin, a task I carry out prior to personal care help arriving from Wild Dog. Then after each night of sleep disturbances she tries another approach to not disturb my sleep. Of course, her sleep is just as important.

Thursday night/Friday morning was a classic example of an extreme night. She came to bed at 2200 stressed by  sewing problems with something she was making. At that time she had her usual meds and I fitted a full syringe of Apomine. Before 0210 had I helped her twice onto the commode; the first time she removed a soaked pad and placed it in the bin. However, during those 4 hours I woke several times to her yelling and guttural noises while asleep. By 0210 she began kicking the commode; turning the light on I found her left leg out of bed resting on a wheel of the commode, her body was diagonally across the bed. As I lifted her leg back onto the bed and straightened her body in bed her eyes flickered open yet she did not wake.  After that some vocalising from her until a little after 0500 when  I woke to find her sitting on the side of her bed, puzzling how she was to place her bum onto the commode, which was resting against her legs, she had forgotten how to lift and swivel her body into position. So I rose to help her stand in a stooped posture as I ripped the wet, reasonably heavy (thus "full") pants off her. She stayed there until 0543 during which time we discussed this immediate problem of moving between bed and commode; her assessment was "I don't know how to negotiate the gap", a non-existent gap from my viewpoint because her left leg was touching both commode and bed. Then I helped her back onto the bed. She had her 0600 meds some 15 minutes early and we realised she had not taken the one at 0200. Then at 0617 she again needed help onto the commode to piddle; then help off again at 0622 when she commented that she was unable to place her feet on the floor. At 0650  I was soaking beneath the shower when I heard her yelling (I had not taken the CB radio with me) so wet and hair filled with soap I helped her back onto the commode because this time her leg was "numb". Again she said she is unable to place her feet on the floor while ion the commode; I will alter this damn thing, even though it had been adjusted by the physio after delivery. At 0710 I applied Tiger Balm Cream (not anywhere near as hard as the red version and does not run and dribble like the oil)  bought on-line with our last grocery delivery, vibrating it into her hip joints, across her lower back and the calves of both legs. I vibrate the soles of her feet as well but without the cream. Then at 0730 she was on the loo attempting to poo before the Wild Dog personal care arrived about 8AM. After breakfast, seated at the table sewing she said her left leg began to burn from about 0850.

Recently Polly, the inimitable PD clinical nurse in Hot Air City queried whether another UTI or constipation may be the triggers for the above night of horror. So I made an appointment for 1445 for us to see our local GP, Dr I. I rejected an offer of an earlier appointment with another doctor; there are far too many actors with bit parts in this performance already. At 1020 I found her asleep, covered by a wrap, on her recliner. At 1035 she woke, taking her BP as 115/65 and 68, before taking herself to the loo for a poo; she needed help getting off at 1105.

Since last Monday I had been attempting to have an Apomine script filled at the local hospital; the staff were unable to find the physical script yet their data base showed 4 repeats available; I had left a message with DR I's receptionist to FAX the hospital another script but he had not written one . At 1120 the hospital pharmacist rang asking me to arrange for new scripts for both 5mL and 2mL ampoules and I suspect I know the reason for the original script being "lost". About 1115 the Wild Dog physio assistant N. arrived to put her through some exercise.

She took meds at 1355 then I had her sit on the commode to provide a urine sample for Dr I., although he was unaware of her symptoms as yet. I scalded the commode pot prior to collecting the sample. Later Dr I. seemed not to approve of my procedure but I explained the difficulties I have had collecting a sample any other way.

We saw Dr I. at 1445 and I raised the following points: -

1. Described the disturbed sleep last night. He wrote a pathology script to go with the urine sample I later left with the nurse on the way out. He also wrote a script for Movicol for which our chemist gave me Macrogol as a generic yesterday.

2. After describing the local hospital's need for Apomine 5mL and 2mL scripts he wrote same which I gave to his receptionist on the way out to FAX to the hospital. Back home I confirmed with the hospital pharmacist that he had received the scripts and said I will collect them lunch time on Monday.

3. Some time ago Dr I. had us take bone density tests. When I queried him, he was unable to find the results even though results for others of his patients were in his system.

4. He had a report from Dr F at West Beer about her assessment on that day she was taken off meds and reviewed by a room full of experts. Although Dr I. did not volunteer to provide us with a copy of the report (is it time to become paranoid?) he said there was mention that the congregation of experts were not all in agreement about her PD. I mentioned we had a letter asking her to report at Hot Air City hospital's neurology next March 25th (we needed to ring that hospital to find out the name of the doctor involved and who initiated the referral because the letter failed to say) and that we had not noted the spinal term used by Dr F. Dr I wrote it down for me, "lumbar canal stenosis". I forgot to ask Dr I whether stenosis  could be initiated by a broken cocyx. Anyway, we understood that Dr F wished her to see the spinal doctor prior to her next appointment to see him, Dr F, next 5th of March, rather than 20 days later.

5. A recent blood test, I think requested by Dr C at Dr F's rooms in West Beer, indicated that her B12 levels were high. Dr I. confirmed this and advised against further B12 injections. He will refer her to a visiting haematologist and I will need to call in to collect a covering letter.

6. I confirmed with him that her daily Vitamin D was to be reduced to 1000 IU.

7. In passing, I mentioned that my colonoscopy procedure had been completed last Wednesday and a follow up consultation with the doctor was in a fortnight.

Yesterday, Saturday, she asked to be brought home early from Wild dog Respite because she felt bilious. But then we ended the day in the best way possible; We had friends of 45 years ago, last seen some 7 years ago, emails & odd phone call since, call in on their way to Hot Air City. A lot to catch up on, nowhere enough time available, hardly interrupted by consumption of delivered pizzas and a bottle of red. Have we the years left for more gatherings I wonder?

Today, Sunday, at breakfast I gave her one satchet of Macrogol in 150mL of water. Then I made a quick trip to Woolworths to buy three containers of the Tiger Balm cream, each $10.95, the first one has lasted less than a week, I must use the stuff more sparingly.

Chapter 364 - Not Strange, Just Weird

Last Wednesday around 2:45AM she got out of bed to use the commode (nappy pants no longer the preferred option for the previous few nights) and to take 2AM meds. I was already awake. On completion she stood motionless beside her bed, when I asked what her problem was she said "I'm trying to work out how to get back into bed". So I got up and held her arm to help her into bed. Once laying down she explained that she had been confused by the grab handle hanging from the monkey bar over her bed.

The next night she reverted to relying on incontinence pants. The Apo pump was changed over and she took normal meds at approx 10PM, then neither of us woke until 5AM when I heard her rattling her pill bottles and taking the med she should have taken at 2AM (naughty). This is the FIRST time we had both slept through the night without interruptions in ages. Neither of us know why. She did about 150 ml in her incontinence pants during the night (calculated from the weight). She had used the commode before going to bed and about 5:30AM in the morning. She took her next meds at 6:30AM.

During the past week I have encouraged her to take 2 Panamax on going to bed so as to ease any pain in her legs, treating discomfort before it becomes pain. Then each morning I apply Tiger Balm oil to her hips and lower back before massaging the areas with a vibrator. Our house has taken on the odour of old ladies; our cleaner opened the bedroom windows on Friday "to let in some fresh air", obviously my leaving the front door ajar and the laundry door open is not sufficient. Is it our imagination that her leg/foot problems have reduced as a result? Who cares so long as we both think so. I have also vibrated the soles of her feet. Twice this week I needed to support her as she pushed her trolley from the bedroom to the kitchen table; her left leg failed, causing her to to hobble along as if she had a thorn in her foot.

Something weird with her eyesight last evening. I was watching a crime thriller on TV; unusually she was watching as well (she prefers not to watch anything stressful), when she mentioned she had scratched her right leg. I saw slight red scratches and spots to which I applied some anti-itch cream. Then later she made the comment that there were two groups of 3 yellow balls in front of her, disappearing when she removed her glasses, returning when replacing the glasses. Same effect with another pair of glasses. We cleaned both pairs of glasses to no effect. Then a short time later the spots disappeared.

Last night she wore incontinence bloomers to bed, the commode was left in the bathroom, and she slept through until 5:45AM, having missed the 2AM meds. The bloomers were dry. We both feel more alert this morning.

I would feel so relieved to learn that we were doing something positive, rather than simply stumbling about in the dark.