Chapter 529 - Just Sleeping

Her bouts of "sleep" have become quite a worry. Last Tuesday I coerced her to attend the local Dance for PD. Although she was not completely lucid she agreed to going so I went through the usual steps, wheel her into the bathroom to clean her teeth, then lift/slide her from the wheelchair onto the loo, place a water bottle, her phone, tissues, a $2 coin for morning tea, make sure a comb is already in the bag, then return to the bathroom to lift/slide her back to the wheelchair. Then to the car in the garage to use the slider board to slide her onto the front seat. I seat belted her in. I dropped the coin between the front seats. Grovelling about beneath the seats I failed to locate the coin but I did slice the back of my left hand. I went looking for a band-aid and another coin. By the time we arrived late at the church hall she was quite groggy; when asked she did not want to leave the car. Since she would probably be unable to leave the car if I drove straight home, I drove to the hardware store to buy a networked watering system then home at 1100. Back home again I left her in the car with the windows down and the seat reclined. At 1140 she was awake but sluggish and unable to remember having been driven to the church hall and the hardware store, although I spoke to her at both places.

On Wednesday I had an appointment to see our GP for some of my problems. I mentioned that I was considering driving her to the hospital the following day, waiting until she blanked out then telling the hospital staff that I was unable to remove her from the car. He agreed when I said this action was a little unethical. He agreed. He also agreed that I could bring her down to the surgery to be observed the next morning. I did so. We arrived at 0910 and shortly afterwards the doctor had a look at her, then had us wait in another room. At 0945 she was out to it. The doctor examined her and said "She is sleeping". Her blood pressure was OK, pulse OK, oxygen level OK, breathing regular. So home we went since she was disinterested in having lunch down the street. By 1105 she was asleep on her bed, waking at 1240.

The Exelon patches are being replaced each morning after breakfast. One fell off following a shower, another fell out of her night dress, so I applied a piece of tape over the patch then noticed that the patch still tended to lift off the skin. So I now now apply two pieces of tape in the form of an X over the patch and now the patch is kept in contact with the skin at all times, which must improve the absorption of the medication. So from yesterday on I expect to see consistent effects, if any, from the Exelon. One of the side effects Dr F warned me about was drowsiness but her rapid dropping off to sleep had been occurring prior to Exelon.

I bought two of Amazon's Echo Spots so I can monitor her condition. Except for being mounted in a fixed position it is effective. So I have ordered some hardware to mount one Echo Spot onto her wheel chair and a battery pack to provide power. I am becoming used to speaking commands to "Alexa". One benefit for her: I only need to say "Alexa play Elvis" to have the little device do just that. Since she finds gospel music pleasant I asked for gospel music to have it supply just that; those modern church songs singing about what amounts to "sexual passion" for a saviour. So I told Alexa to play George Beverly Shea; songs from our 1950's youth. Maybe later I'll ask for the Seekers and similar.

Recently we were having a meal at the Soldier's Club once each week, the last was on 15th August when she enjoyed a "Vego Pizza". She has rejected offers to go down the street for shopping or meals this week.

A week ago she began knitting a rectangle (I think with no goal in mind other than to be busy) until she had at least 200mm knitted of thick wool using large needles. Then I found her with a knotted tangle. "Something went wrong" she said as she attempted to retrieve small lengths of wool from the tangle, winding each into small balls. She has returned to pinning wadding on the rear of some fabric squares with the intention of making a quilt. I'm so sad to see her doing this as I remember what she was once able to do.

Chapter 528 - Exelon Changes

Shortly after 0930 each morning this week she became drowsy, resulting in going to sleep for up to an hour. Because I have not been putting the FitBit on her right ankle for quite some time now there is no record of her dyskinesias except for my notes. Tuesday was a particularly bad day and of course she did not attend the Dance for PD session. Several bolus doses (1 ml) during the day failed to reduce the dyskinesias. By 2200 her whole body was writhing so I gave her a Kalma which failed to send her to sleep, although she did become calmer. A little after midnight I gave her two soluble Panadol after which she began spitting a lot of phlegm into tissues. Then after rolling her partly onto her right side she calmed and was asleep at 0100 Wednesday. A night to remember.

She was drifting into sleep as I left on my respite hours at 0940 after the Wild Dog carer arrived. I attended the Dementia Carer's group meeting. I rang to check on her at lunch time. The carer said she woke about 1100. At 1530 I took her to her dentist for a check up and clean, returning home at 1630 when she was too "dopey" to help safely from the car, so I reclined her seat and wound down the windows. a pillow behind her head (the car was in the garage). She slept until 1800.

I had collected the Exelon script earlier in the week but did not apply the patches until after she was weighed at the Rehab section of the local hospital on Thursday. Seated on her wheel chair she weighed 71 kg then I transferred her to a chair and weighed the wheel chair at 15.9 kg. Later at home I weighed her clothing, shoes and duodopa pump at 0.7 kg, so her actual body weight is 55 kg. We left Rehab for lunch at the Soldier's Club. She did not sleep Thursday afternoon.

After she was showered and dressed on Friday morning I attached her first Exelon patch at 0845 and fitted the FitBit to her right ankle at 1035. Her day was bad. The FitBit recorded strong dyskinesias all day except when she slept for maybe 30 minutes at 1100. She sneezed a couple of times during the day and reported "feeling like sneezing". I took her with me to buy some items at Bunnings to brighten her but she was happy to return home. She tasted a little of her evening meal of grilled fish and pasta, had it warmed twice the rejected it. The Wild Dog Carer arrived before she  ate much sweets so the whole meal was thrown out.

Yesterday, Saturday, was a good day. I replaced the Exelon patch at 0820 onto her right shoulder, yesterday's was on the left. She slept from about 1015 for an hour. No sleep during the afternoon. Her only comment during the day was that her feet felt "tight" at 0630. The FitBit showed minimal dyskinesias throughout the day. From her point of view a good day but from mine I felt listless and down so I spent most of my time sitting in the sun reading a book.

Chapter 527 - Variations on a Theme

In the hope of taking her to her PD dancing group on Tuesday last I gave her a Bolus dose (2.0 ml) at 0830 but by 0930 the dyskinesias were vigorous, she needed her feet raised onto the recliner and 5 minutes later her head had dropped, she was asleep and of course the dyskinesias stopped. I did not bother to attempt to take her to the group. She woke at 1010 with vigorous dyskinesias. Shortly thereafter she began sorting her drawer of jumpers and put one on, unusual since it is unusual for her to feel cold. The sorting continued until lunch time. Mid afternoon I wheeled her around the village. Shortly after 1700 I had her piddle while on the commode where I collected a sample in a small plastic bowl and tested it with a urine testing stick just in case her recent fluctuations had a UTI cause. In the words of the professionals, I found nothing remarkable. The Duodopa flow rate had been 7.0 ml/hr all day.

Wednesday, my respite escape day, I gave her a Bolus at 0735 in an attempt to fend off sleepiness when the Wild Dog Carer was due at 0930. At 0900 her head drooped and she was asleep until 0925 just as the Carer arrived. I left to attend my Dementia Carer Group meeting, except once there I discovered I was a week early; stupid of me or is this an early sign? When I returned home at 1430 I learned that she had slept for about 15 minutes shortly after 1000. The dyskinesias were vigorous again at 1630, so another Bolus of 2.0 ml as well as rubbing her legs. She nodded off before the end of a movie at 1705.The Duodopa flow rate had been 7.0 ml/hr all day.

Thursday, without attempting any dose rate calculations, I set the Dupdopa flow rate to 7.5 ml/hr. Throughout the morning she looked dopey, saying she was sleepy and she thought she had nodded off  briefly before 1130, although I hadn't observed her asleep. Late morning she was plaiting and knotting decorative strings on a pillow bought months ago at the highlands town up the 4 lane. Much of the afternoon she spent "sweeping" the floor of the living and kitchen areas, all the time with vigorous dyskinesias of her legs (only ever of her legs; I may not have specified so over the years) and these were so strong that at 1800 I stopped the pump. Once in bed her legs became still by 1930 so I restarted the pump at the night time rate of 2.0 ml/hr.

Friday I set the flow rate to 7.2 ml/hr. In recent weeks we have enjoyed a quiet day at the Soldier's Club having lunch, reading ebooks so on a cold miserable day we went again. I gave her a Bolus of 2.0 at 1030 when she became sleepy. A large glass of lemonade for her before lunch, then a large  Fisherman's Basket ($30 worth although she did not eat the chips!!) with a Lemon Lime and Soda followed later by a large slice of Red Velvet cake and Cappuccino. We returned home about 1600, wild dyskinesias, needing her feet raised, difficulty breathing, room fan on, I rubbed her legs for awhile before stopping the pump at 1645, and not restarting it until 1740 at the night rate of 2.0 ml/hr. She needed the loo so I slid her onto it from the wheel chair. I changed her pants to the night time pull-ups, changed her into a nightie then with much effort helped her stand into the Sara Stedy and put her into bed about an hour before her usual bed time. She was very hot and sweaty, needing both the wall fan and the small personal one. I wiped her face with a flannel before she fell asleep and the dyskinesias stopped at 1820. She woke at 1840 saying she had filled her pants. In a quandary about how to handle this, I decided to wait until 1900 when a Wild Dog Carer was scheduled to help her to bed, hoping that the person to arrive was not one of their inexperienced new hires, and together we would shower her. Fortunately the new hire who arrived was experienced and had been here before. Together we slid her onto the commode then wheeled her into the bath room where I tore off her pull ups to find NOTHING. Luckily for me, the commode pan was beneath her when two enormous stool fell into it. So we re-dressed her with a fresh nightie (the other was damp from sweat) and pull-ups and pad and returned her to bed. At 2045 she was still reading as I went to sleep.

Yesterday, Saturday 10th August, was a bland non-eventful day, no bouts of sleep or dyskinesia. She spent most of the morning doing word puzzles and the afternoon sweeping the floor with the length of dowel with a magnet glued to one end looking for stray pins and needles. Later I found the dowel broken so I have glued it back together.

This morning she has not been sleepy or dyskinetic up to now, 1115. But I have noticed one thing; she has not been tunelessly humming as she normally does during her waking hours at home. I took a while to realise this change, great should it last. She is in her sewing room dressed in T shirt and thin slacks without any house heating even though yesterday at day break there was snow on the lawns of our village.

A script for Exelon patches, which Dr F has prescribed for her, arrived in the post on Friday in a government envelope. The script is stamped "approved". I submitted it to the chemist yesterday to be told the patches are not stocked but will arrive on Monday. Exelon is Rivastigmine, a drug for early stage Alzheimer symptoms which has been found to help with similar symptoms in PD. The skin patch form has less side effects that the capsule form.

I am proceeding through an online course on dementia given by UTAS. Some references to PD suggest there is greater recognition these days that there are elements of dementia involved in PD. Was it 2000 or 2001 when her diagnosing neuro of 1991 had her scanned for Lewy Bodies? I still feel rejected that when I made approaches to local Alzheimer care groups and was told that her PD was a different thing altogether. Fortunately, I was invited to join one group, but even so, at one meeting when I spoke of PD symptoms I was taken aside and asked not to mention Parkinsons because others may think there was a carer in their midst not entitled to be there. And since then the term "Alzheimer's" has been subsumed under the umbrella of "Dementia". A rose by any other name.

Chapter 526 - Some Fog is Clearing

In the dark hours of Monday morning 29th July the Duodopa cassette ran empty because I had forgotten to replace it during the previous evening. I have failed to do this  before, as well as forget or delay changing the pump from day time to night time flow rates. The resulting effects are either dyskinesia or profound "Off" states. Perhaps I am becoming forgetful, other matters distract me or I am too tired. Whatever the reasons, I have installed an alarm application on my phone that makes a cow bell like noise at 1700 and 2030 each day when those two critical jobs are to be completed. Recently I woke about 0630, half an hour later than usual, to replace the Duodopa cassette and pump settings for day time running, so perhaps I may need to programme that event as well; except that doing so may wake her as well. My lower back pains are gradually lessening, possible because of using Nasonex frequently as well as minimising the amount of lifting I do when transporting her. For instance, I use the small green slider board plus a piece of nylon to slide her from bed to commode each morning and then her first voiding of the day is done on the commode on which she remains seated to use the pedal machine until the Wild Dog Carer arrives to shower and dress her and only after that is the Sara used to transfer her into her wheel chair.

Some mornings after 0900 she becomes drowsy and muddled, although on some afternoons similar problems occur. Last Tuesday she was quite "sleepy" as I took her to the local equivalent of Dance for PD. Once there she was not in a condition to be taken inside the hall, so leaving her in the car I went and told the organisers; one of them said she was very drowsy on the previous Tuesday. I gave her a bolus dose. So after deviating to the chemist I took her home where I put her to bed at 1050. By 1140 she was awake and alert. On Wednesday she was much the same when a Wild Dog Carer minded her while I was on respite. The water to our village was cut off at 0900 so we spent most of the day at The Soldier's Club. At 0815 I gave her a precautionary bolus dose and again at 1140 when dyskinesias began and shortly after I placed her feet on my knees and rubbed her legs; she felt sleepy but recovered. About 1400 she wanted to go around the shopping centre as well as up and down the strip shopping, after which we were home by 1600. About 1730 she called out "I can't breathe", something she may say every other day or so. She quickly recovers.

Last Wednesday the Carer helped her machine stitch some fabric together to make a quilt. The Carer had not threaded the machine correctly thus the stitching was not very good. Later I saw her picking at the edges of the fabric to cause it to fray. Since the time was early evening I convinced her to leave it until the next day when I would help her to make repairs. When I next noticed on Friday, the whole had been picked apart. Now, the following Monday, she continues to place pieces, pinning them together without getting around to stitching. This may sound trivial to the reader but years ago she was able to complete such trivial work within an hour, rather than investing almost a week getting nowhere with the task. Some time ago she shredded the thick wool like threads of a pillow (or was it two) bought at KMart in order to make filling for another pillow she intended to make. Last week she pulled the pillow under construction apart, the filling went into a large plastic bag for the garbage. When I said we can keep it for later projects she replied that there was "too much rubbish in it", and when I looked, I saw chocolate wrappers, sewing threads and such which I removed. We still have the bag of filling.

Recently she comments about not having "feeling" in the tips of her fingers. Sometimes her left leg is bent at the knee as I help her up of a morning and I need to rub the leg to help it straighten. Once she often complained that her toes were painful unless protected by shoes but rarely mentions that lately. Were these observations on the list of issues I gave the neurologist on our lat visit? I don't remember. The script for the Alzheimer patches has not arrived yet.

Each evening in bed she reads Mills and Boon novels on her eBook reader now mounted on a flexible arm attached to the bed. This is much more convenient to the swing arm mounted on the wall that required me to raise the height of her bed for ease of viewing. The font size is large and she reads slowly, usually allowing the reader to go into "sleep mode" as she dozes off some time after I am asleep. There has been no need to attempt to find watchable shows for her from the numerous subscriptions we have or free to air.