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?