Chapter 414 - Wearing On

"How have you been?" she was asked by the Wild Dog care lady this morning, just arrived to assist her with showering and dressing. "I had an operation on my back" she replied, to which I responded too quickly "That was last October; you've just had Botox injections in your leg." Was that a sign of cognitive decline? Do others notice and say nothing?

We drove to West Beer last Sunday afternoon, partly to avoid traffic (it was worse) and to ensure a parking spot close to the hospital accommodation block. Claimed one of the two disabled slots which was fortunate because next morning I was told the adjacent car park was to be barricaded while a multi-story car park is built. I left the car there until we left for home on Tuesday. Accommodation in the lodge is cramped, especially with the wheel chair. The disabled shower/toilet room is at the far end of the building; fortunately we had no competition for its use at 0630, 2200 and once at 0230 when we met a bloke with a towel over his arm, saying he had locked himself out of his room. After switching on lights in the corridor I showed him the notice about phoning security and found a wall phone in the communal lounge for him to use; then I hurriedly pushed her wheel chair into our room.

We dawdled around the hospital cafeteria until her appointment at 1430 for Botox injections into the calf muscles of her left leg. Six injections with a very long needle. The only sensation she experienced was tingling toes on one injection. Dr F. was there to observe. He was very interested that her legs were shaking like mad. He asked for her to have a bolus then after some 20 minutes he imagined her shakes had diminished slightly so asked for another bolus while he attended to other matters. On returning he thought there had been another reduction in shaking. I mentioned that the stress of having the injections had made her shakes worse and that she routinely began shaking by mid afternoon. Anyway, she suffered no ill effects from the injections.

Next day we dawdled in the Hospital again, meeting an Ugly Sister for a coffee before going to Dr F's rooms, firstly for her right leg to have a nerve conduction study before seeing DR F in his room. He seemed on the verge of agreeing for us to run her pump 24x7 once again when he left the room (to consult with others?) before returning to suggest a plane of increasing the pump flow rate from 4.4 ml/hour to 4.8 immediately, then a month later to 5.0 then another month later to 5.2 until her next PD clinic sometime in June. I told him that her legs don't shake each morning from the time the pump is attached at 0600 until about 1130, as observed on that morning while having coffee with her sister. When I said I will video her at hourly intervals after she stabilises with each dose change he seemed disinterested, as did one of the PD nurses last year when I suggested doing so. This time they are going to see the recordings! As a reference, I videoed her on Thursday before increasing the flow rate to 4.8 on Friday. I have noticed no changes in her behaviour since then.

On Wednesday I called at the local hospital to see the physio about the cast for her left leg; an appointment was made for April 4th. Perhaps I have imagined that her left foot has shown signs of being flatter on the floor since the injections.

A month or so ago she decided she needed to plant some snow peas in our raised garden bed. Now she finds she is unable to chew and swallow the peas either raw or cooked. She has been hand sewing many decorated hand towels, giving the to Wild Dog respite for sale

This current weekend being Easter there was no respite for her. On the previous Saturday she had tummy problems, requiring a change of incontinence pants during the day. Once home again at 1600 she was in a mess and needed to shower. I had her skip several Movicol doses and since she has mostly one a day. No further problems.

Chapter 413 - Some Changes

Now that she is on a Level 4 Plan Wild Dog periodically sends a nurse to check on her, the first visit was last Monday. She suggested a spray product, rather than a squeeze bottle of lubricating eye drops. When I checked with the chemist he advised another product that is on the PBS but recommended checking with the eye specialist first.

On Thursday her "shakes" were very vigorous, they have been increasing in duration and magnitude for some time now. Such changes creep up almost without us noticing. She has complained of her legs being very tired. I increased the pump flow rate from 4.8 to 5.0 mL/hour and gave her a bolus dose as well at lunch time. By late afternoon the shakes seemed worse.

The next morning we slept in because I had not set the alarm, her pump was started at 0735 then turned off while Wild Dog assisted her to shower, and that interrupted the Morning Dose so after she was showered and dressed and the pump started again I gave her a bolus dose. At 0920 I reduced the flow rate from 5.0 to 4.6 mL/hour. Her legs were stable until noon around the time the Wild Dog physio had put her through her exercises. By 1700 I rated her leg shakes as "light" but at 1930 when the evening Wild Dog person came to help her to bed the leg shakes were "vigorous". The pump was turned off at 2130.

Saturday I further reduced the flow rate from 4.6 to 4.4 mL/Hour. Too many changes too quickly I know. I took her to respite about 1000 but she called me at 1500 to come home, her legs were shaking too much. Yet at 1530 at home I noted her legs were not shaking.

Yesterday morning, Sunday, she became fascinated by the T-Hub (our phone system), began pressing icons to find out what they did. I heard the thing ringing out, went out to investigate what was happening because our phones were not ringing. She had initiated a call to what I think was a diet company (has a female title) although no one answered. Then a few minutes later one of the Wild Dog people rang to say she had received a call on her mobile from our number; I explained what had been happening. I then took her down the street to buy stuff at her favourite clothing shop, did some grocery shopping and ran out of time to have a coffee. She continues to resist someone from Wild Dog pushing her around the shops on a Sunday morning, while I have a coffee and read a good book, but I'm working on it.

This morning her legs are quiet.

Chapter 412 - A Medical Appointment-Free Week

A week without a medical appointment of any type for either of us is respite of a pure kind. Not that I mind visiting the medical professionals, it's just the issue of wasting most of a morning or an afternoon for a visit locally, or a whole day for a visit out of town. This coming week is also free!

Her Level 4 support came into effect last Monday, 29th of February, with a Wild Dog person arriving shortly after 1930 to help her to bed. We originally thought this somewhat too early, yet after a few evenings we have decided it is not wholly a bad thing. Except for those few occasional TV shows worth watching from that time of an evening. Anyway, the routine is settling into the following; she will be on the loo when someone arrives (I have asked they ring some minutes earlier), I help her off the loo onto the commode from where she cleans her teeth, then the person helps her fully undress before sponging her over with a damp cloth, then the Sara Stedy is used to transport her into the bedroom and positioned over the Tena pants laid on her opened bed in readiness, she is helped onto the Tena pants which are then wrapped around her waist (in belt fashion and secured with the Velcro-like tab) and the front bib portion drawn up between her legs and fastened to the belt with two tabs. Later when I settle down for the night around 2200 when the Duodopa pump is removed, and if she wishes to void, I help her onto the commode (or into the loo) after which I wrap sticky tape around the tab areas to prevent any abrasion from the sand paper like surface of the tabs. The person from Wild Dog may apply under arm deodorant, moisturiser creams to her legs if considered necessary; before leaving again. Not much to do in a half hour you may suggest, yet their presence locks us into a routine to gain more sleep. She watches a DVD each evening before I take down the pump, syringe the stoma tubes, give her pills around 2200. Until now we dawdled, procrastinated each evening so that often lights out were at 2300 or later. Last night we were both asleep shortly after 2200, neither woke during the night until I rose about 0530, prepared her pump, attached it without waking her, then we both got up a little after 0700, me to shower and she to sit on the loo.

Last night we almost had a disaster. She always has an additional pad inside her incontinence pants, an additional pad that has a sticky backing to remain in place while away from home, as yesterday while she was at Respite. We ran out of that type so she had to use some found in our cupboard without a sticky backing. Once or twice during this past week an additional pad (without sticky backing) fell into the toilet bowl as I helped pull her pants down. Against her protests I simply flushed the pad down rather than poke around in the bowl. Last night, just before the Wild Dog person arrived, a pad became stuck, did not flush down, so I had to rescue it with a stick and rubber glove, depositing the pad in a couple of supermarket plastic bags. This morning I bought some pads with sticky backing at the chemists', although they are smaller that what she has been using.

Yesterday while she attended Respite I did the supermarket shopping, stocking up on cartons of milk (we drink that conditioned stuff lacking fats which some people can detect when they pollute tea or coffee with it), boxes of tissues, fruit juice etc etc; all the things I attempted to buy last Sunday while pushing her in her wheelchair around the aisles, nearly giving myself a seizure of some sort. Today was simply an outing for her to visit the shops; yet I still felt weak in the knees and frazzled by the time we returned to the car. I'm suggesting, encouraging her to accept an hour's trial having a Wild Dog person push her around the shops for an hour next Sunday whilst I read a good book, imbibing coffee, while she is gone. I will take her down the street, meet a Wild Dog person, who will return her in an hour, after she spends a few $'s on stuff if she wishes. I suspect I will feel better for it and she may be with someone who has greater appreciation for the junk that the shops have for sale.