Chapter 272 - A Usual Week

Her pain was unbearable at the beginning of the week; I convinced her that we make another appointment for cortisone injections. I rang the imaging place (cortisone was to be injected under CT scan control) and when I mentioned the patient had PD I was put on hold to speak to the technician; she said the patient needed to remain "still" for at least 15 minutes, I handed the phone over to the PWP; conclusion - the procedure was likely to fail in wasted time and effort. The appointment was not made. So I rang for an appointment with our GP who was unavailable until 5th December, so I opted for an appointment with Sub-continent GP we had seen before. He's a nice friendly doctor although his accent gives me some difficulty. After asking questions he had her lay on the bed then prodded around her left hip; she yelped when he touched the tender spot. He believes she has "bursitis", a word I have never heard. He printed a short description of bursitis; no exercise, apply heat or cold packs, maybe rub the area with Tiger Balm and the like. So off to the supermarket to replenish her stock of Ice Gel and buy some Tiger Balm. So I have been regularly rubbing her left hip, lower back, left knee and lower leg several times a day. Tiger Balm reminds me of the odour of old ladies; a childhood memory perhaps?

Last Monday she attended physio for the first time in weeks, perhaps she should not go again until the bursitis (if it is that) disappears. Then on Tuesday she went to Respite, leaving at 4pm saying that being seated in the chairs had increased her pain even though she had taken regular walks with her walker up and down the hallway.

We have heard nothing from Hot Air City about apomorphine trials. I decided to contact the neuro over in the West that had attempted a trial way back in 1999 when a minimal injection of the stuff knocked her out for 3 or 4 hours. I spent most of a morning searching through old records so that I could quote the dates of her stay in hospital for the apomorphine trial and other tests performed. I was surprised to find that she had been in hospital for 13 days, I was still working at that time so mustn't have noticed how long she was away. I composed a long email to the neuro in the West asking him to send any records available direct to the neuro in Hot Air City.

Every night she needs to urinate at least 3 times, quite often a lot more. She often needs to wake me; I find her sitting on the side of her bed, centimetres away from the commode positioned conveniently at the side of the bed. She only needs to stand and pivot 90 degrees, she can't. Her legs and feet are frozen; they simply do not function. She sits there for some time attempting to stand until she gives up and calls me until I wake. I link an arm around one of hers, lift and pivot her, both of us scrambling to pull her incontinence pants and nighty out of the way. Afterwards I help her stand up from the commode, help her raise her right leg so her knee rests on the bed, then push her foot so her knee moves toward the centre of the bed then a flipping action tumbles her onto her right side (never her left side!). We go back to sleep, until next time, an hour or two away.

Quite often during the day, when her legs and feet are so frozen, her pains so severe, her steps not even shuffles, when she breathes through her nose like a frightened animal, I seat her on the wheel chair to take her to the toilet. When she is "good", she is able to shuffle there pushing her walker.

As always, from the hips up she is great, making a patchwork wall hanging during the week for a friend, now beginning another from the scraps left over from the first.

I wanted her to come with me for 2 hours yesterday when I needed to be at our Computer Club; she refused, suggesting she didn't wish to be on display. Fortunately, there were no problems while I was away. Next Saturday we plan to meet with friends at the club up the 4 lane, maybe.

Chapter 271 - A Disappointment

Yesterday was the family gathering, ostensibly for Xmas except there was no Xmas noises or decorations evident. A good day for all the second cousins, the grandchildren of the three sisters. One was absent due to ill health and the majority of ours live too far away to come. The kids had a riotous time throwing water bombs at each other, water bombs of which I was unsure whether defective balloons or coloured condoms.

The females of the family were very interested in her "A Christmas Carol" table cloth spread upon the pool table in the village hall, and I suppose that was the closest to appropriate decorations. The birthday cake she made for her 70th, iced by her friend around the corner, topped by the flowered decoration placed by her mother on her cake when she turned 60, was a bit of a flop. Her birthday a month gone, me not being a party type willing to lead others in singing Happy Birthday, no one really noticed the cake after she cut it. This morning she is cutting it into pieces so we will have much to eat with a cuppa. I am depressed.

Late last Sunday afternoon she came shopping with me, I pushing the shopping trolley, she her walker which doubles as a wheelchair. She made it around the supermarket until we reached the checkout, then needed to exit to sit on a bench. We were so loaded with food stuffs that I made several trips to the truck then returned for her to wheel her out in the walker arranged as a wheel chair. Her meds had simply shut down leaving her a cripple.

On Monday we made her last visit for Bowen therapy. Again she was left with an over-all dull ache as if she had been pummeled, which she hadn't of course. In hindsight, the Bowen has done her good, her sharp pain, especially in her left leg, are alleviated but by no means gone.

Wednesday saw us at the neuro in Hot Air City. We talked to him more than we usually do and I gave him a summary of her meds intake over a period of several weeks. I told him of the several phones calls to the state PD support group, the nurse involved with the apomorphine distributor, my talking to the local district nurse, our concern that she speaks to someone using a diffusion pump, when he decided to force the issue, rang the PD nurse in Hot Air City to set up an appointment to have her assessed for apomorphine. Good in a way I suppose, we need to find out at least whether she is suitable for the treatment which she wasn't 12 years ago when we were in the West.

Chapter 270 - Night Fall

We left for the appointment with the neuro in Hot Air City on last Wednesday after lunch; while I filled the vehicle tanks as we were on the way out of town stomach gripes made her want to return home as quickly as possible. She was bothered for several days following, I hope this is not a new development  in her symptoms. I haven't been adding Metamucil to her evening fruit juice and come to think of it, she has not even had fruit juice but has asked for lemonade.

She has tuned her meds slightly to declare that her "toes are not pointing as badly as they had."

0600 Sin 100/25, Sifrol, Sin CR
0900 Sin 100/25, Deralin
1000 Sin CR
1200 Sin 100/25, Deralin
1400 Sifrol, Sin CR
1500 Sin 100/25, Deralin
1800 Sin 100/25, Deralin, Sin CR
2200 Sin 100/25, Deralin, Sin CR

These last few days we have both been sleeping better, she has not been needing to get up as often, and quite often she does not need help to sit on the commode. Her pains seem to have reduced a little, although can one become somewhat accustomed to pain? I have been attempting to position her and her numerous pillows (which support her back and legs) more into the centre of her bed so that there is no need for her feet to stick out from under the bed clothes and rest on the commode. And quite surprisingly, yesterday morning at 4:30AM I awoke to a loud crash. I assumed I had knocked the T-hub (phone/radio/etc) off my bed side table as I sometimes do when rolling over in bed when an ear phone button is plugged into my ear. In the gloom I noticed a bundle on the floor between her trolley, table and bed. She was curled up, quite stationary, on the floor. I was quite relieved as she untangled her arms and legs without expressing any painful noises. She assured me she was unhurt. I vaguely remember returning to sleep. Saturday, yesterday, was a reasonable day for her.

This morning she needed help dressing after a shower (standing, without help, even mopped the shower afterwards) and I noticed a bruise on her coxic area. She said her right hip area was tender. These the result of falling out of bed. Her sciatic pains down her left leg persist.

Tomorrow, another visit for Bowen therapy and then on Wednesday another attempt to see the neuro. For the last few weeks she has missed her physio sessions at the hospital due to her pain and inability to walk very well.

Chapter 269 - I'm Scared Shitless

She never speaks words like that, she was terrified, I can't remember exactly when, I was helping her off the loo & back to bed in the middle of one night, a night somewhere in the blur of many similar nights in the last few weeks. Some nights up 6 or 7 or 8 times, usually needing my help. Jet lagged the next day. At these times, several a day, when her feet freeze, sometimes standing on her toes, she breathes through her nose in snorts, like a frightened animal, talks through clenched teeth, cannot trust me to support her, says I'm a movable object as she grabs for fixtures to hold onto, often calls me to help her raise her pants at the loo while she holds onto the fireman's pole.

I have been sleeping on her special mattress, the one that molds to the shape of the body. Perhaps my imagination was at work, my lower back was feeling stiff & ached each morning when I rose, my left hip had begun to feel stressed, so a few days ago I took down the other firm mattress from our ceiling attic and replaced it with the expensive body molding one, which she says she never wishes to use again. That is good because I found the retrieval & replacement of king single mattresses into the roof space physically stressful, I'm getting too old for such exercise.

We have now driven to the small country town for Bowen therapy on the last three Mondays. Some of her pain has been relieved, I have no real measure obviously, yet after each visit she walks more easily but within a day or so she seems no better.

Almost 9:30 now, today, and she yelled for help from near the kitchen bench, halfway to the loo, frozen holding the handles of her trolley, right foot flat on the floor, left foot on her toes. I brought her wheelchair up for her to sit in & wheeled her the rest of the way.

Although some of her pain seems to have originated from the occasion when she was seated for a couple of hours at her desk while speaking to her MS friend down in Hot Air City about their similar but different problems, I believe most is the result of dystonia and lack of medication. Well, ineffective doses of medication.

When she saw the PD nurse in Hot Air City I noted that the nurse believed she was taking too much medication, according to an application into which the nurse entered her facts & figures. So I made a crude attempt to digitise her meds, 1 unit for Sinemet 100/25 and 2 units for Sinemet CR, ignoringany doses of Sifrol and Deralin. By this measure, she was taking 15 units per day when she saw the nurse but 22 units per day on 21st October.

Interrupted my typing to help her off the loo onto the wheel chair. "I'm now running late with my pills. My toes are beginning to point", she says as I pull up her pants and push the button. we are now using "toes pointing" (dystonia) as a measure of her "OFFness".

Last Saturday I attempted to have her take a mini-holiday from her meds (not in the extremes sense as would be done in a hospital) to get some idea of the impact of the meds. Most confusing results.

At 0600, 1x Sinemet CR, 1x Sifrol, 1x Deralin (to my mind a strange way to start the day) took 1.25 hours to kick in at 0715 and she said she was going OFF by 0830, so ON time was 1.25 hours.

At 0840, 1x Sinemet 100/25 took 0.5 hours to kick in at 0910 and OFF at 1040, so ON time was 1.25 hours.

At 1045, 1x Sinemet CR, kick-in began at 1200 but she said she was OFF by 1230, so ON time was only 0.5 hours! Perhaps the lack of medication, compared with previous days, and no food to this point was impacting her in other ways. After a loo visit she had a light lunch.

At 1500, 1x Madopar Rapid 100/25 kicked-in after 0.5 hour (no quicker than Sinemet 100/25??)  and she thinks ON may have lasted about 1.25 hours, but a friend visited which was a distraction from the "experiment", which was discontinued. She returned to the quantity of meds she had been taking when she saw the nurse in Hot Air City and since has been gradually increasing the dosages in an attempt to minimise the pain in her legs, the toe "pointing", our measure of dystonia.

On Sunday we tried to have a "normal" day, having visitors from mid-afternoon. Since then I have not kept much in the way of notes. On Thursday November 1st I rang the State PD Support Line in Big Smoke to ask questions about apomorphine as well as a way to clear my head. I was given the contact number of a PD nurse that is involved with apomorphine treatment and it was suggested to bring forward her next neuro appointment, which I then did to late next Wednesday. I had a call back from the contact number on Friday and had a very informative chat with the apomorhine knowledgeable nurse. She also spoke to my PWP.

Meanwhile, she has been keeping a daily tally of her meds intake. ( CR = Sinemet CR 200/50,
D = Deralin, S = Sifrol, 100/25 = Sinement 100/25)

Wed 31st Oct

0600 CR D S
0900 100/25
1000 CR D
1200 100/25
1400 CR D S
1500 100/25
1800 CR D 100/25
2200 CR D S 100/25

Thur 1st Nov

0430 100/25
0600 CR D S
0730 100/25
1000 CR D
1030 100/25
1330 100/25
1400 CR D S
1630 100/25
1800 CR D S
2030 100/25
1000 CR D 100/25

Fri 2nd Nov

0600 CR D S
0900 100/25
1000 CR D S
1300 100/25
1400 CR D S
1700 100/25
1800 CR D
2100 100/25
2200 CR D S

Sat 3rd Nov

0600 CR D 100/25
0900 1.5CR D
1000 1.5CR D
1200 100/25
1400 CR D S
1500 100/25
1800 1.5CR D 100/25
2100 100/25
2300 1.5CR D S 100/25

 Yesterday when I went super-market shopping at the Chemist for all our meds I was told that Deralin/Inderal was unavailable from the distributors until the end of the month. Fortunately, she has accumulated sufficient  to last till then. Her tremors, and I suspect, her visits to the loo, are largely controlled by Deralin.

We have been working together to finalise the stitching on her Christmas Carol (as in Charles Dickens) table cloth that she has been working on for the last few years, doing a little each time the season approaches. I believe she plans this work to be an heirloom. Are such things relevant these days?