Chapter 260 - A Postponed Appointment

Most mornings this past week she has risen around 7am, returning to bed after meds at 8am and she may remain asleep until 10am. She has continuous pains in her lower legs. I queried that she never mentions lower back & hip pain any more; she replied "It's still there but my legs are much worse." I watched her last night, sitting in one of her chairs, feet in pink slippers, both raised some inches from the floor, unsupported, both feet prancing up & down. She frequently calls on the CB for help to rise from a chair or the toilet.

She has been waiting for what seems ages to see the PD nurse down in Hot Air City. We made a relaxed trip down there, arriving at the hospital a little after 1pm, she having taken her meds at a rest stop not far from home. After verifying the exact location we were to see the nurse in the rabbit warren of a hospital (aren't they all alike?) we had a sandwich for lunch then waited for the appointment time of 2.30pm, then only to learn that the nurse had gone off sick. Other staff were most apologetic, most concerned we had traveled so far, I said "It's only 80k's" although later when I checked the odometer (I had zeroed it when I filled the fuel tanks on leaving home) the distance was closer to 100kms to that side of Hot Air City. So we headed home again, on the promise of a future call for another appointment.

I tried to talk her into some shopping on the way home; she wasn't interested. However she had shown interest in a "cheap" TV with inbuilt DVD that was to be on sale in our town on Saturday. This might be used in our bedroom for when she can't sleep. As we drove near the airport I mentioned that the new Big W outlet may have some cheap TV's that may save me going down the street early on Saturday. So in we went, then left with a small TV with DVD, some DVD's (for me, she found nothing to her taste) plus some new towels, bath mats & shower curtains.

Her current meds

Sifrol 1mg                      0600, 1200, 1800
Stalevo 250/200mg        0800, 1200, 1600, 1000
Deralin 10mg                  0800, 1200, 1600, 2000, 2400
Sinemet CR 200/50mg    2400
Astrix 100mg                  0800
Caltrate 600mg               1200
Vitamin D 1000iu           1600
Magnesium 325mg          2000
Crestor 10mg                  0800

I sometimes mention various utilities that she finds helpful.

Her bidet with remote control above the grab rail on the wall, shower chair (sometimes needed) beside the bidet. Note the small box with a blue button above the toilet cistern; that's a wireless "door bell" the  bell of which is mounted on my bed side table. The dark vertical bar (actually stainless steel) is what we refer to as her "Fireman's Pole", without which she has little chance of rising from the toilet and adjusting her clothes, even with my assistance. Low down on the wall to the left of the Fireman's Pole is the Alarm Button for our Smart Phone back-to-base alarm system (the actual phone is on our bedside table)

A full length view of the Fireman's Pole. This is a length of about 35mm diameter stainless steel with a flange fitted at the bottom which is bolted onto the floor. The upper end goes through the plaster ceiling then through a clearance hole in a piece of timber fitted across the rafters. This allows some movement and flexing of the pole without stressing the ceiling.

A view into the shower recess. Notice that there are no steps or water retaining barrier.

One of her two firm chairs she finds comfortable and from which she can usually rise without assistance. The other chair of this type is at the foot of her bed.

Some people are surprised she is able to do so much sewing and patchwork quilt making on our kitchen table.

A firm stable upright chair from which she watches TV. The small foot rocker is needed quite often these days to relieve the stress and pain in her legs.

Her laptop workstation with additional monitor. Note that she uses an additional keyboard and trackball mouse because the keyboard and pad on the laptop she finds very difficult to use. She now uses her collapsible wheelchair to help her move easily to and from the desk as well as to the other side of this room to where her embroidery machine is positioned. She locks the wheelchair's wheels for stability and confidence when she is in position.

Her hooped embroidery machine and her XP laptop to supply files to the machine. Janome do not supply drivers for Windows 7 used on the other laptop.

Her "trolley" on which she transports meds, water, and much else around the house. She does not usually walk more than a few steps without this device in front of her. Her second comfortable chair can be seen in the background at the foot of her bed.

The  Wheely-Walker (our name for it) she uses for outside. She prefers to push it in front of her rather than hold my aging arm. The device folds easily for fitting into the car and it can be used as a seat or wheelchair.

A half-length satin  sheet which she needs to assist her rollover and position herself in bed. It has plain cotton piece on each side for tucking beneath the mattress. A full length satin sheet is too slippery around the bottom end to allow feet to grip for turning and positioning. She has made a number of these herself after having bought several commercial versions. Until recently she had a bed pole on each side of the bed; these slipped beneath the mattress and gave her something to grasp when turning in bed or attempting to rise. We take one of these satin sheets and a bed pole whenever we stay overnight in a motel.

Our CB radios are set to CTCSS sub-channel 10 (any number will do) so that we do not hear the abuse and foul language usually heard on CB radios. Mine is blue, hers pink. We can rely on these for emergency contact from any room in the house and up to a few hundred meters away. For greater distances we rely on mobile phones, but the CB radio only needs a press of the transmit button for a few seconds to alert me. Her CB is usually hanging from a handle on her trolley.

The monkey bar (no not a gibbet) above her bed to aid her in positioning herself.

So it is readily apparent why she is never keen to be away from home, especially over night, and then we prefer a motel room with "disabled access" (we have noticed that there is a more politically correct term these days, although still a meaningless euphemism which I have forgotten) where the bathroom may be large and access is clear. Unfortunately, many motel owners think (or are permitted by local council regulations) that a small poorly positioned grab rail insecurely attached is sufficient to define a room as being suitable for persons with disabilities.

Chapter 259 - Severe Tremors

She has been halving her Deralin in weekly steps up to last Monday 6th August when she ceased taking it at all, from 10mg during the previous week. Quite soon extreme leg tremors appeared, so much so that her slippered feet beat a fast rhythm on the wooden floor of our living area. On the nights of the Monday & Tuesday her sleep was quite disturbed. I vaguely remember her saying that she rose for the loo 5 or 6 times, having great difficulty returning to sleep afterwards. She wanted to return to taking Deralin again, I wanted her to persevere for a few more days; in the past medication changes have seemed to require a week to stabilise. By 2030 on the Wednesday I had to relent; she took a 10mg Deralin & her relief was almost immediate.

Until last week she seemed impervious to the cold. Whenever I turned on any heating she quickly complained of being too hot. From about the time she stopped the Deralin her system switched to sensing cold, to the extent that she began requesting a small fan heater be switched on in the back room. On one occasion I found the temperature to be excessive, and far from complaining, she felt just comfortable. Now after several days back on the Deralin she again seems to be tolerating the cold.

Since reducing the Deralin she has not experienced any short intervals of dizziness or blurred vision and the only tendency to fall was when her tremors were bad and accompanied by a feeling of toppling backwards.

She also had a wog, caught from me, for almost two weeks and that may have interfered with her medications. Anyway, for the time being she will remain on the 10mg Deralin until we see a PD nurse in Hot Air City this coming Thursday.

She traveled well to meet friends at the club up the road, although the large lunch did not agree with her Saturday night medications. Family visited us on Sunday when we had another club lunch, this time locally.

Chapter 258 - Fear

Whenever I watch TV shows such as "Silent Witness" I need to do so on "my" TV in the lounge room, rather than "her" TV in the back room. Any programme displaying any tension or violence is intolerable for her, so "Silent Witness" which regularly displays dissected bodies on mortuary trolleys is most definitely not her type of show. So I was engrossed in the programme when I heard a scraping noise at her bathroom door (just behind where I was seated), as well as some faint vocal sounds of frustration. I jumped up to find her gripping her trolley, attempting unsuccessfully to push open the bathroom door, she was panting with effort. As I helped her stumble into the bathroom, helped her pull down her clothes, she told me her arms were "frozen", just like her feet often do. I had not heard her mention such a problem before. It seems she has experienced some freezing of her arms before but had not bothered to mention the problem.

I waited outside the bathroom, door ajar, until she was ready to rise again, when I helped adjust her clothes. She was hardly able to grasp the "fireman's pole" I had installed a short distance in front of the toilet bowl. We shuffled together to the doorway where she tried to grasp the handles of her trolley. By this time her breath through her nostrils was quite audible, her mouth closed. She was stiff all over, yet was tremoring badly, she asked to sit in the bedroom until the tremors subsided. I suspect she was on the verge of a panic attack. I asked her to poke out her tongue, move it side to side, no problems with that, so no sign of stroke. By the time the "Silent Witness" episode concluded she was ready to get into bed. The bed clothes shook from the shakes in her legs. She had some Panadol to ease the pains in her legs.

I vaguely remember her rising for the bathroom several times during the night. Around 6:30am she asked to sit in her chair in the bedroom, needed her little foot rocker (stored in the shower recess of the other bathroom) to support her trembling legs & feet. When I asked she said she had been awake since 1am. As I rose about 8am for a shower she returned to bed; she agreed to the radio playing; when I returned from my brief 20 minute shower she was being driven to distraction by the voices from the radio. I turned it off, leaving her to sleep, breakfast for me.

In my dungeon I completed my Lumosity "brain training" exercises; began this blog chapter, from time to time checking that she was still sleeping. On the last check a short time ago she surprised me; she was showered and dressing. I helped clip her bra. So begins another day.

I fully expect, quite soon, to help her clean up after a personal embarrassment. She often asks for help to get to the bathroom quickly before her bowels "explode".

The headaches she experienced after reducing her Deralin dosage from 40mg to 20mg (5 times each day) wore off after several days. Since she was taking 10x10mg tablets per day another script had to be filled as the dosage was reduced to 10mg 5 times a day. She intends to phone the PD nurse in Hot Air City on Monday, the day planned to stop taking Deralin all together, for advice. Her appointment to see the nurse, organised by the neuro, is not until the following week.

Since reducing the Deralin dosage she has not experienced any vision, brief "black out" episodes, which seems to be the reason the neuro asked her to stop the Deralin. However she says that when walking, on my arm or with her walker, she experiences a "tipping backward" sensation, which frightens her, whenever she stops moving forward. A symptom I have grown accustomed to and hardly ever notice, yet she must be conscious of it especially in public, that of her head rhythmically rolling side to side, forward & back, has largely gone.

Her ability to rise from sitting on the side of her bed may have deteriorated. I sometimes watch her rise in the early morning for the loo. Having lowered her feet to the floor, she leans forward slightly, hands resting on the bed, she concentrates, then pivots forward and up, body still bent in an "L" shape from the sitting position, one hand makes a grasp for her walker trolley positioned about 1/2 metre in front of her, the hand (her right) does not reach the handle of the walker, her body pivots back onto the bed. After some more concentration she rocks forward again, and again. At last, after maybe 4 or 5 attempts, her right hand grasps the handle of the walker, but if her left hand doesn't grab the other walker handle in time she sits down again. Probably on the next attempt both hands grasp the walker then she is away. Well, shuffles away, not pacing but shuffling, each step not much more than the heel of one foot aligning with the toe of the other. Rising from the toilet is perhaps a little easier because she is able to lean forward to grasp the "fireman's pole" to haul herself upwards but of course she needs to use one hand for pulling up her incontinence pants. There, in a half exposed, stooped position, she may call for help. At times when she has not had the CB, when I have not heard her calls, she may sit there for lengthy periods, suffering a very cold bottom.

Just now, as I went to make myself another mug of tea, I found that she was baking some muffins in the oven. Bad for me of course yet doing so must encourage her to struggle against becoming a vegetable. As with her sewing, quilting & embroidery. Our local sewing machine man was able to lubricate the seized main shaft bushes on the Brother machine she uses for sewing; so she was able to complete her last patch work quilt. I have promised to buy her a new machine should the main shaft seize again or as a birthday present, whichever comes first. She needs a sewing machine with only hand controls, rather than a foot control, because when attempting to use both hands & feet simultaneously, her legs tremor badly, causing loss of control of the machine. She has begun some embroidery to make into a pillow as a birthday present for her friend around the corner.