Chapter 297 - Changes Have Reasons

An adventure getting to Physio on Monday afternoon. For months now access into the building at the hospital rear has been hazardous, but this time the new parking area was roped off so we had to park down around the corner then walk in the back way. She must have doubled her usual amount of exercise pushing her walker to get in and out of the place. It seems the building contractors  ignore the needs of patients and omit to tell hospital staff of such changes. At least, since tomorrow is a public holiday, her next visit may be easier. Tuesday she said nothing memorable about her day at the "sheltered workshop".

She has been sleeping very poorly this past week. She spent 2am-4am Tuesday awake so on her return from Respite she fell asleep in her TV chair; awake 2am-6am Thursday and needed to return to bed between 2pm and 4.30pm. I didn't note the hours she was awake on the other nights. Quite often now she heads toward bed a little after 9pm, sometimes sleeping, sometimes reading. Friday night I played a couple of episodes of "Heart Beat" in an attempt to have her sleep during the early hours.

Wednesday was her 2nd visit to see the Helpful Neurologist at Hot Air City. Polly the PD Nurse had changed appointment times so that she could see her first at 1300 on the same day to save an extra trip for us to that lovely city. Most considerate except that we were rushed, not finishing some interesting sharing of facts with another PD nurse (two neurological nurses in Hot Air City seems almost an excessive luxury when our State of Origin has to progress through "trials" to bureaucratically justify such a need) before it was time to speak to the Helpful Neurologist; actually, he came looking for us in a small room close by. I learnt from the PD Nurse, let's call her Barb, that insufficient fluid intake leads to concentrated urine which initiates more frequent urination, whereas correct hydration causes the bladder to hold a greater quantity of urine and seemingly less frequent voiding. Somewhat counter-intuitive but believable. On the drive home I pondered the matter, coming to the conclusion that if she were drinking 2 litres of fluid each day, mostly from 750ml bottles filled from a 10 litre supermarket-bought container (she believes our local town water is disagreeable to her) then I needed to buy more than one 10 litre container of water each week. And I'm not! So since Wednesday we are counting the number of 750ml bottles she drinks each day; I had to add some lemon juice to the water to make it palatable for her. When she has a 375ml can of lemonade as well as a regular evening glass of fruit juice spiced with Metamucil they can be considered a bonus. During warmer weather when she was sweating so much I think she was drinking much more, but whether enough I do not know. Also on the way home I realised she always answers "No" to questions about constipation yet that is simply because of the heaped teaspoon of Metamusil in her glass of fruit juice each evening. One night since drinking more water she had a commode-free sleep, the other nights maybe 4 commode stops and just greater quantity. The colour is more normal, not dark, which I thought was due to the meds.

I suspect there was something amiss with her 7 week change schedule. for when the Helpful Neurologist looked at the copy in her file he seemed concerned at the amount of Sifrol, or the timing of it, that she had been taking. Anyway, he rattled off changes to be made, and I made rough notes on an envelope. I told him that her ability to move had changed from a positive ramp through the day to a negative one where she became less mobile through the afternoon. He explained that was due to the normal release meds she was taking whereas before the new schedule when she was taking predominantly slow release meds she had been accumulating more and more levadopa in her system as the day progressed. Makes sense. He wishes to see her again in August.

On Thursday I prepared a new schedule, sending it to Polly for confirmation. Seems my notes scribbled on an envelope as the Helpful Neuro spoke was a balls up. Next time I hope I have time to draft what is needed before we leave.

She began the following schedule on Friday 7th June

WEEK 8 Commencing Friday 7th June 2013
							Time 750ml Bottle Water	Time P'max 500 or P'deine 500/8
Friday 7th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Saturday 8th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Sunday 9th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Monday 10th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Tuesday 11th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Wednesday 12th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500
Thursday 13th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.25	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.25	Vit C 2x500
18:00	Sin 250/25		Deralin 40	Comtan 200		Vit D 1x1000
22:00	Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1.25	Mag 500

Her left hip where she had bursitis a few months ago is beginning to give her pain again and Tiger Balm oil and a vibrator has been applied several times. Her leg pains continue to be a great bother to her, lack of movement in the late afternoons is of increasing concern and in general her quality of life is deteriorating. When I asked yesterday, she was agreeable to having lunch at the club today, so as we were about to leave the house this morning I queried whether buying up big at her favourite clothing shop was of interest; it was, so we went there first. We were only $5 out of pocket due to sale prices and several gift vouchers accumulated in her purse! During lunch she said she wished to buy some knitting wool at another shop but as we left the club at 1.30pm she decided she was incapable and needed to go home as her meds were due at 2pm. We will buy wool and also her puzzle magazines tomorrow hopefully. 

For some time our washing machine has deposited bits of sludge on our clothes. On Friday she read the manual, figuring out how to disassemble the agitator and finding acceptable cleaning practises, which I then did. Yesterday she thought our washing was much cleaner. Since attending the the lecture by the neuroscientist the other week and reading some of his comments in the papers she began Lumosity again, although she doesn't want me to subscribe her; she is happy just to do the basic free exercises.