chapter 282 - Can't Get By Without It

Blogger has been giving me errors that it can't complete my last command (or words & code to that effect) and I can find no explanation for the errors so rather than running the risk of losing this record I ordered a hard back printed version of the blog as well as a pdf version. Other than typo corrections at the point of posting, no editing or corrections have been made anywhere in this blog. Perhaps I should buy a hard copy of its predecessor as well.

Last week she noticed small bumps on one leg; as if she had been bitten by a small insect. At the time the bumps were not itchy, but now the bumps are on both legs and are itchy. I suspect the bumps may be caused by excessive application of Ice Gel with its strong minty (to me who can't tolerate the small) odour, so I have discouraged her from using it when her legs ache and  cramp. She is applying an anti-itch cream to both legs. Since last week I have encouraged her to take two magnesium tablets each day, well spaced from her PD meds and she thinks the leg cramps have diminished. I certainly have not been woken as frequently each night. When asked, she thought her tremors may have worsened.

She has avoided taking any more Panadeine Forte with its 30mg of codeine following her feelings of "not being with it" last week and being unable to manipulate the pieces in her latest quilt, to the point of disassembling the whole thing. She was simply unable to figure out the mechanics of positioning the pieces and being unable to make corrections. This quilt has most of the basic assembly completed now.

The passive/powered peddler I bought is used most mornings. I suspect she uses it more in the passive mode where she needs to pedal against the internal magnetic friction. Physio at the hospital on Monday and all day at Respite on Tuesday. She coped quite well pushing her walker around the supermarket late yesterday afternoon.

One of her constant bothers is her feet and toes curling, making it difficult to put on or keep shoes on her feet. And she has always been afraid of walking barefoot.

She showered after some toast for breakfast, some pedalling and some Circulation Booster (TENS machine with foot pads), needing the shower chair after using the toilet. She showered herself and i noticed her drying herself as I walked pass the bathroom door ( there is no privacy in our house these days, she may call for help - sometimes her CB radio is mislaid - and closed doors are an obstacle to her, even though they have handles rather than knobs, when she pushes her walker in front of herself, as is always the case these days. Anyway, as I said, I saw her sitting on the shower chair and I continued out to my dungeon, returning maybe 10 minutes later. I asked whether she needed help and she replied "I'm trying to figure the best way to get out of here." Her walker was out of line with the bathroom doorway. I helped her rise, wiped her back area dry and as I pulled the bath mat aside (a good tripping object) she asked for it returned so that her feet would dry and not slip. So pushing her walker, she shuffled into the bedroom, asked to sit on the big chair with arms rather than the side of the bed, so while she was seated  I got her clothes and helped dress her. On a day like today she pushes up on the chair arms, I lift her with one arm while pulling her pants up. She needs a machine like Wallace uses.

Her current meds are -

0600  Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
1000  Sinemet 100/25, Sinemet CR 200/50, Deralin 40
1400  Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
1800  Sinemet 100/25, Sinemet CR 200/50, Deralin 40
2200  Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1
0200-0300 Sinemet 100/25 if needed

"That's a lot" I say, and she replies "I can't get by without it."

Chapter 281 - Pain

Her leg pains are unbearable, cramps in the outside of her calves of both legs, even in her buttocks. Seems OK while she is in bed but becomes excruciating as soon as she begins to rise. Monday last week I had her ring for an appointment with our normal GP; booked out for days, asked for our sub-continent replacement to learn that he had left the practice, yet there was a replacement, a woman, from a country up north. She was wonderful! Communicative, listened well, showed concern, was very careful seeking approval for some of the PD meds, gave a script for Panadeine Forte to take 2 only on going to bed, not a miracle cure perhaps.A test for racist bias in our society would be to determine preferences of patients for Australian or foreign born medical practitioners. On the whole, I have personally found foreign born (or of foreign descent) to have better skills than the local variety. After the appointment we shopped, returned home and forgot her physio at the hospital.

An active/passive pedal exercise machine I ordered arrived. This to overcome the complete lack of exercise, except for the once-a-week physio session. She likes it. She can either run it in powered mode where the machine moves her legs or she can push the pedals against the static force of the machine while seated in her chair, although perhaps she should sit more upright on a kitchen chair. So each morning she does a session on it. Too soon to say whether it is a help, but anything is better than nothing. She needed the wheelchair to get to the loo this morning (first time in a week), her steps were so small and painful that an accident may have occurred with delay. Although she sat there while I did some Wii exercises and had my breakfast. Then later she pushed herself out to the back room in the wheelchair to begin peddling. Then when she needed to shower, the shower chair was needed, as every morning this last week.

On Thursday we attended our local PD Group after which we had lunch at the Club. She had coffee after the meal, a fact she latched onto after we returned home and she began needing urinate every 15 minutes for about two hours; I didn't count. Our friends, in town from Big Smoke, were embarrassed for her, not seeing that these things happen, although I must admit this was a little extreme. She said later that she was "present yet not involved" for the remainder of the evening. She blamed the coffee (she never drinks coffee these days) the Panadeine Forte, not taken since, and I wondered about a UTI, but the phase stopped as quickly as it started. The loo visits, her sweating, worried our friends, who suggested checking temperature and blood pressure. Temperature was normal, and although within her usual fluctuations, so was her blood pressure. She failed to finish eating parts of her evening meal. Maybe I'm too blase about her changes in condition; to me it's part and parcel of her PD. All the same, the sooner she sees the PD nurse again the better.

On Friday afternoon our friends returned again when matters were "normal". I suspect they do not associate her changed condition with PD and the medications. That evening she ate normally and maybe went to the loo once. Our friends suggested that the statins, as Crestore, she takes for cholesterol may cause her cramps. I had forgotten that Lipitor had had that immediate effect a couple of years ago, so now she has ceased taking the Crestore, yet so far I doubt there has been any change in the cramping.

Yesterday I took her to Respite for the day while I attended our computer club (I am one of the conveners)  in the afternoon. I heard her telling someone later that I take her to Respite when I need to do anything. This was the first time I have done so; on Tuesdays, her regular day, is more for her benefit to have social contact, even though some of the other participants have slight dementia, and it maintains her interest in hand crafts. After last Tuesday she brought home a quilt the group had constructed; requiring our Town's emblem, so I was volunteered to create a design and then stitch it eight times on the quilt. I hear they liked the result. At home she has been making a quilt that was well on the way to completion when she decided to add extra complexity and since then she has pulled the whole apart several time; I just home she does not discourage herself in her attempts.

Chapter 280 - Sweaty Times

A hot month since I last wrote. Frequently have I made mental notes worth recording yet they are now forgotten, encouraged by my hesitation to write, not wishing to pick at soreness.

For most days and nights she has sat in the draft of a fan. Everywhere she may sit or work a fan can be directed at her to cool her upper body. Especially when her tremors are bad. Her hair becomes stringy and dark as if she has been under a shower. She repeatedly mops her face with tissues before one day asking for a damp face washer, items we tend not to use in our house. Her clothes are damp all day; when she takes them off at night I dislike touching, holding them as I take them to the clothes basket in the bathroom. Whether she has odour I am unable to tell; my smelling ability is very poor, unlike hers which for a Parky is excellent.

She has continual leg ache and pains; much due to cramping, although we are both confused about how to describe it. She repeatedly applies Ice Gel but when I massage her legs I prefer Tiger Balm oil and the small hand held vibrator. The round feet of the vibrator required glueing back on because the plastic attachments had broken off; I was unable to by another. A few days ago after seeing her in tears and hobbling ..............

Interrupted by a call on the CD "Help! I'm in trouble!!" She was stooped at right angles, holding one of the vertical rails at the side of the shower, still in her nightie, standing on the bath mat "I need the shower chair" which I positioned for her, helped her out of the nighties onto the chair then handed her the shower head on its flexible hose. When she finished washing herself I helped her dry, then to her trolley, then into the bedroom and before she sat down, into her incontinence pants, her bottom wobbling all the while, then quickly before she had to sit down, into her slacks. She put on her bra and blouse. Before I left her she needed two firm pillows placed under her feet to reduce the tremors, needed her trolley with all her stuff, meds & water close by, as she said "I may need to sit here for half an hour."

.......................... and mentioning cramps I wondered whether her excessive sweating and almost constant leg tremors, her head and shoulders are usually rhythmically wobbling as well, may reduce her salt levels excessively, since we eat no added salt with meals. So when we last went shopping I asked at the chemist and bought some pills to be added to water. She began taking it several days ago but I'm unsure whether she is getting any relief. Last night she used the commode a number of times and between 6AM & 7AM  she went 3 (or was it 4?) while I massaged her legs - she thought the vibrations encouraged the urge.

Yesterday was a cool day, and friends asked us to join them at lunch at the club, and she went in a blouse, whereas I wore a jacket, not that I felt cold, yet it was cool. Her sweating was reduced as well. While we were seated at the table I could not help but notice that three of us were quite still, slight facial movement as we spoke but her head and shoulders were in continual slow motion, no one else noticed.

She is now involved in dressing baskets for sale at her "sheltered workshop". I enquired of the manager last Tuesday whether she may attend on other days should I need to be involved with our Curmudgeons Computer Club and was told "That's not a problem, anytime" yet I am yet to speak to her.

Several times (not today) a shower chair with wheels would have helped her shower and return to the bedroom, rather than transfer her onto and  from the shower chair to her walker or wheel chair.

Lately she has called me maybe 4 or 5 times during the day to assist her get out of an awkward position to go to the loo, get to a more comfortable chair. Just now she again called me for help. She was seated at the kitchen table "I had to make it to here (from the bedroom) to call you because we had left the CB radio looped (on its lanyard) on a shower rail.". She needed a full bottle of water and the security of the CB to be able to call  me easily.

I had mentioned placing duct tape zebra crossing wise on the floor to help her movement forward. She sometimes had difficulty seeing the grey tape. In Coles one day I saw rolls of bright yellow tape, bought a few and extended her zebra crossings which she saw much more clearly. So I bought more rolls and replaced all the grey duct tape on both carpet and timber floors. I had wondered how effective the tape was for her until the other day I was leading her around the kitchen table by walking backwards guiding her trolley, when she said "Can you move out of the way, I'm unable to see the yellow lines." I now know the lines are useful to her.