Chapter 300 - Non-responsive Communications

We had hoped to attend the monthly meeting of the PD group in Hot Air City this past week but I never received a reply to my emails asking whether one of their members was using apomorphine (I believe there is at least one) and was prepared to talk to us about the experience. Having received no response, not even a "yes" or "no", I did not wish to organise her to leave our town at a time when we usually rise each day just to arrive mid-morning on the off-chance there was someone with whom to discuss the medication. For all its benefits, I am beginning to suspect that apomorphine is a closet medication. Surely there must be a PWP somewhere able to sing its praises?

Our Monday being a wet day so the effort of having to walk quite a distance to reach the physio centre while building alterations are in progress discouraged her from attending. Fortunately, recent comments from Dr Flower and others of the benefits of leg motion to improve circulation in the legs, joint lubrication has encouraged her to make more use of the pedal machine. She saw Dr Flower on Monday for her second B12 injection.

Tuesday was respite Day once again. She is becoming disillusioned with the place because fewer attendees are wishing to do crafts and activities other than playing bingo, for which the winners are awarded supermarket items that have expired their "use by" dates. And the items she has made for the "for sale" stall are being sold for rock-bottom prices, many of the raw materials supplied from her own stock. I still think her associating with somewhat demented older farts and the staff is beneficial for her. We seem to be socialising so little these days.

Her regular visit to her chiropodist was on Thursday. She went prepared to ask his opinion about her feet pains, tightness and numbness because the upper surface of her feet show just the slightest blue-ish colour. He was concerned enough to use some sort of audio monitor (I was not present) to listen to the blood flow in her legs and feet and also brushed her feet with a device while her eyes were closed to determine the touch sensitivity of her feet. He was unable to detect any problems with her feet. She must have mentioned apomorphine to him because on the way out her handed her a general knowledge  article from a site after he saw the drug described in a TV programme. A helpful considerate bloke.

On Friday she began the next change in her schedule increasing her dosage of Sifrol to 3x 1.5mg per day, the maximum dose. We have to be told what changes, if any, are to be made at the end of this coming week. Interestingly, by mid-afternoon on Friday she was wobbling all over the place. Weaving her upper body from side to side while sitting in her TV chair, almost dancing when she stood up. Suspecting that day's Sifrol change at 2pm may have induced the wobbling, I asked her when the dyskinesia (that is what I suppose it was) began; she was unsure, but thought before 2pm, the time she was to increase the Sifrol from 1.25 to 1.5mg. So perhaps it was not simply the Sifrol increase.

On that same Friday, a grey damp mildish winter day our house with no heating switched on was slightly chilly. I in my dungeon was sitting next to a heater. About 5pm she called me on the CB asking for a fan. Rather puzzled, I went to see her, finding her face flushed and her blouse damp from sweat; she needed her cardigan removed. I brought the small fan from her sewing room and placed it on the floor to blow air on her. I think she asked me to switch the fan off about 7pm and then she sat in her TV chair and maybe went to her sewing room a few times just in blouse and slacks.

Also on Friday, I was fortunately close at hand, at her 10am meds time, when she began to choke. Thinking the problem was only one of water going down the wrong way, I did not immediately respond, but when her coughing and spluttering continued I banged her on the back a few times without effect; then after more banging and coughing a grey-ish blob went bouncing across the floor - the Sinemet 200/25 she had attempted to swallow. Although that tablet lacks a scribe line, she is now cutting them in half. I noticed on-line that the 250/25 can be supplied in hockey puck form (that she now takes) or a lozenge shape with a scribe line. Next time I'm at the chemist I will request the latter, or failing that, ask whether cutting the former is permitted. Meanwhile, I try to remember to be close by at pill times.

Yesterday, Saturday, she became very hot about midday, the weather still cold and damp, no room heating on in the house. She called for help to remover her cardigan. Sometime later she described her feet as stiff and tingling and she removed her feet felt "tight". She described the sensation as banding around her feet, one more than the other. She remained without heating, in blouse and slacks all afternoon until 6.30pm when she she told me she was feeling cold so I switched the small oil heater on in the TV room.

Trying to motivate us to "get out" more beyond attending appointments and shopping, I suggested lunch at the club again today. Perhaps we can make this a Sunday ritual, and when it does some other outing will need to be found. She was quite agreeable. She had a hefty meal of a lamb shank (disgusting to me!) and vegetables, followed by a piece of cheesecake and a chai latte. About 1.40pm she thought she needed the loo, did not wish to use the club's disabled toilets, for she said she would be much more comfortable at home, that is, where she was able to use the bidet, for her bowels were causing her discomfort. Just another example of the hazards when away from the comforts of home. So today there was no opportunity to do some catch-up shopping for the items I forgot last week.

Her schedule for this week:

WEEK 11 Commencing Friday 28th June 2013
Friday 28th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Saturday 29th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Sunday 30th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Monday 1st July
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Tuesday 2nd
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Wednesday 3rd
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500
Thursday 4th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	Vit D 1x1000
10:00	Sin 250/25		Deralin 40
14:00	Sin 250/25		Deralin 40		Sifrol 1.5	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 1.5	Mag 500

Chapter 299 - An Average Week I Suppose

The week began with her opting not to attend physio at the hospital at 2:30pm on Monday. She lacked confidence in her stability and balance to go, so she rang the physio.

On Tuesday she was happy to go to respite.

Then Wednesday was her appointment for her second monthly B12 injection. In chatting to Dr Flower the matter of leg pains and tingling was discussed, Dr Flower emphasising the need for exercise to assist with circulation and joint lubrication (I think that was how she spoke) and I chipped in that we had a pedal machine which she does not use very much. Of course, she denied that. Then we lunched at the club before returning home. Later that day I found her using the pedals with some difficulty because the feet of the machine slip on the wooden floor. Thinking to myself that a strip of carpet beneath the pedals may keep them in position, I went for a tape measure. When I returned she said to me "Maybe it wouldn't slip so much if there was a piece of carpet underneath." Great minds! From the attic I retrieved a piece of carpet we had used in the caravan. Now with one end of the carpet piece beneath her TV chair and the pedals positioned at the other, the pedals no longer slip around. She seems to be using them more frequently and for longer periods.

Sometimes she says her feet are "numb", as last night in the middle of a DVD movie, when she needed wheeling to the loo in her "public" walker (with the seat) because she was not confident to walk with her trolley (One tire on the wheelchair was flat, sometime since we last used it.). And some nights she wakes me when her feet are numb for assistance to get onto the commode. I'm unsure whether "numbness" was mentioned to Dr Flower, in attempting to say everything, some matters are not given enough emphasis. I must monitor the frequency of the "numbness".

Twice this week we have walked around the village (half kilometre?) although yesterday she only managed the hall and back.

Our experiment with coconut oil was cancelled. Perhaps she took too much too quickly because she blamed the oil for loose bowels that persisted for several days, to the extent that she has not wanted Metamucil in her evening glass of fruit juice for some days now. That is a form of incontinence she wishes to avoid. So do I. Dr Flower suggested coconut water or milk, described as "yummy" but I doubt that would have the appropriate dietary effect.

She has finally experienced the cold weather, sometimes mentioning the chill and happy to have the oil heater on and the doors shut to the TV room. And she does not complain about the heat from the ceiling as we go to bed, although she is keen to have me switch it off before we go to sleep.

I overheard her telling someone that we can fly down to Pivot City for our grand daughter's wedding near the end of the year. Later she took some convincing that even if we flew down, we still need a vehicle at both ends, also the difficulties of taking a walker, maybe a wheel chair etc etc with us. She contacted the motel next door to the reception room but was disappointed to learn only a queen size bed was available and no rails in the bathroom, in other words, most disability unfriendly.

Her meds schedule for this current week:

WEEK 10 Commencing Friday 21st June 2013
Friday 21st
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	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 1.5	Mag 500
Saturday 22nd
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	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 1.5	Mag 500
Sunday 23rd
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	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 1.5	Mag 500
Monday 24th
06:00	Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1.5	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 1.5	Mag 500

Added Monday 24th June: I must add the following before I forget all about the event. Yesterday, Sunday, we went to lunch at the local club. On a grey cold damp day the club was quite pleasantly cosy. We didn't rush, the place crowded so service was slow, but we didn't mind. We discussed the trip for the wedding later in the year, coming to an agreeable plan. She may be content with the motel, next door to the reception place, even though the rooms lack disabled facilities; we find many motels have unsatisfactory disabled facilities anyway. I ordered sweets and coffee prior to her 2pm meds and we enjoyed them from about 2:30pm. On the way out 1/2 an hour later we detoured via the disabled toilets, then to the shopping centre to stock up with life's necessities. "You'll be quicker without me" so she remained in the vehicle while I went into the supermarket.

By 4:30pm we were home again, she to read a book in the TV room, me to pack away groceries before going to my dungeon to watch a series of TED Talks about the human brain. While in the middle of one talk the phone rang; I let it ring, hoping she would pick it up. Eventually I paused the talk, answered the phone to discover it was her ringing me from our "Bat phone" (our name for our VOIP connection) "Can you come and help me?" she asked. I found the rest of the house in darkness; rain was falling outside, no light through the windows, the time about 5:45pm. I switched lights on to go to her. "Why did you ring?" I queried. "You didn't take your radio with you, I can't get up from the chair to go to the loo, or to switch on the lights so I had to use my torch (she usually has a small LED torch on her trolley) to locate the Bat phone to ring you!" So I asked "Why didn't you switch on the room lights as it was getting dark, surely you couldn't see to read?" "I wasn't reading, I had fallen asleep."

In a small house, only separated by 2 rooms and a passage, I am concerned that we can find ourselves in a hazardous situation so easily. Yet I am pleased that her cognitive abilities gave her a solution to her difficulty. Says he checking his pocket for his CB radio.