Chapter 278 - End of a Year Heading Downhill

This year just going, 2012, has been the least pleasant year we have experienced. Yesterday, I had to collect Deralin for her from the chemist, she was interested in the opportunity to visit one of the rag shops for supplies yet when I was ready to go a little later she decided to stay home. I don't like leaving her on her own so after checking that she recently went to the loo I drove down the street and rushed through the chemist and the supermarket, I think I was gone about an hour, she had not experienced any difficulties while I was away. I remember a year ago and earlier when we used to walk arm in arm around the shops, occasionally she telling me to slow down. Not anymore, always she needs her walker for stability and sometimes to sit on.

This morning I encouraged her to use the Wii for 10 minutes of stepping. She places most of her weight on her hands holding the walking frame positioned over the Wii board, otherwise she cannot maintain balance, so the Wii does not detect many of her steps, but that does not matter as I keep an eye on the minutes down counting on the screen. As she neared 10 minutes I saw that she was tiring so had her stop, she did not object. She has not complained about leg aches today after the Wii stepping, although before rising from bed this morning she had me apply Ice Gel to her lower back; I think she did her legs. In the shower she needed the shower chair.

This past week she has been making satin toiletry bags, the type of frilly thing little old ladies use. From time to time she has mentioned difficulty pinning then sewing the pieces together. This evening she observed that the bag she was working on was giving her a lot of difficulty, she was unable to finish it tonight, saying "My meds are due in half an hour." During the afternoon she had completed one without problems. I reminded her that she must keep up such activities as well as attempt to complete the Lumosity brain exercises more often since both will assist her maintain her cognitive skills. She continues to complete the weekly puzzle magazines without trouble, occasionally asking me for solutions, sometimes I can help; I hope I never hear her say that they are becoming too difficult.

As always on New Year's Ever, we watched "Dinner for One" on SBS, she was not inclined to do so, until I mentioned the chocolate coated nuts I bought to share. She continued to watch TV until after the Edinburgh Tattoo began, then decided she needed to go to bed to finish watching it there. I needed to assist her up from her chair, then off the loo, then onto the side of the  bed  to undress, all her clothes were damp with sweat, I wonder whether by the end of the day she has body odour, my sense of smell is very poor. As always, in attempting to get into her satin nightie, it clung in a roll across her shoulders from where she is unable to untangle it; her damp skin does not help. Then she lay on her back on the bed, decided that was uncomfortable, asked me to help her roll onto her right side. That was difficult until I tugged her nightie well down below her bum so that I was able to slide her more easily on her satin sheet section across the centre of the bed.

Where will we be in our progression at the end of 2013 I wonder?

Chapter 277 - Walking and Not So Well

I am shopping more by myself lately. Although she has not said so, she fears her feet freezing in public and being  pushed around in her walker cum wheelchair. For instance, on Boxing Day she had the excellent idea that she may be assisted to walk through the house if I placed more strips of masking tape on the floors. Some time ago I placed masking tape strips between the bedroom and her toilet which have been helpful for her. So we drove to the Big Hardware on the other side of town where a helpful shop attendant advised me not to buy a type of masking tape requiring removal with a sander at some future time and recommended plain old silver grey duct tape. So now we have a silver grey "zebra crossing" extending from the hallway into the bedroom across the timber floor all the way out to her usual seating position in front of "her" TV, as well as from the doorway of her bathroom to the toilet. I can see that more zebra crossings will be needed across other carpeted areas using ordinary paper based masking tape which seems to adhere better to carpet. She says the tape helps her step out behind her walker in getting from the bedroom to the bathroom and TV in the back room.

She needs rescuing at least 4 times a day (although I haven't been counting) from seated positions from the kitchen table (which she uses for cutting sewing), from her TV chair, from her laptop and sewing/embroidery machines in her sewing room and of course, the loo. At these times when her meds are off and she has left moving too late she calls me, most often on the CB, for help. She needs to grasp immovable solid objects of which I am not one. She breaths like a terrified animal through her nostrils and sweats excessively (although her body and clothing are usually damp anyway). Once upright (well, hardly, she stoops badly) her feet fail to move, especially the left, she fears falling and most often sits down again. Should she perform her standing action several times without being able to step forward with her walker, I simply fetch the full-sized wheel chair into which her bottom can be swivelled without much difficulty. That minimises the stress although I suspect she fears becoming wheel chair dependent. Frequently she needs to be moved sideways from off the toilet onto her shower chair for comfort until she is able to stand or I fetch the wheel chair.

Today I needed to collect some meds for her from the chemist; she was tempted to come with me to buy some fabric. By the time I was ready to go she had changed her mind about coming with me, preferring to stay home. I prefer she comes with me, even just to sit in the vehicle. While alone I fear she will become stuck in an awkward situation, attempt to stand and then fall, should I be delayed. So shopping tends to be in a rush.

She needs to wear slip-on shoes whenever she walks anywhere, even at night when going to the loo. Slipping her left foot into a shoe is becoming more difficult for her. Often in the middle of the night I need to help with the left shoe. While sitting on the bed, she is unable to lower her left heel to the floor, her left foot is arched downwards, toes firmly on the floor. Even when I push down on her left knee we have difficulty forcing the foot into the shoe. So the commode, kept ready beside her bed, is often used.

She told me she has been losing weight. Probably due to the perspiration that drips off her at times although she always feels damp through her clothes. Fans are positioned near her regular seating positions and in the bedroom is a pedestal fan, with a remote control, blowing most of the night. An expensive shame we lack ducted air conditioning, having decided a wall unit would be sufficient when the house was built.

I theorise that she needs more leg/foot activities to help her standing and walking, but such is becoming more difficult. I dare not have her on the tread mill; walking around the village can be difficult; I had her doing steps on the Wii yesterday morning causing her lower legs to ache badly last night. Tiger Balm oil and  the vibrator are frequently applied to both legs. Fortunately the intense pain in her left hip has gone.

Chapter 276 - Xmas 2012

My Techo Friend invited us to join him & his at the Thai restaurant yesterday. She, remembering previous experiences with MSG in oriental food, declined but was willing to have lunch at the club. We arrived early so I went to KMart in search of a watch for her, found one for $9 sporting a plastic band, including the clasp, although the stainless steel back of the watch is exposed. Should her skin react to the metal we will paint it with clear nail polish. She has none, not being one to use such decoration, otherwise I would have painted it already.

She only wanted a lunch of roast vegetables for lunch yesterday but when I saw lamb shanks on the menu I surprised her with that. She enjoyed the meal and her meds were conveniently spaced around the time she ate about 12:45. When we decided to leave a bit after 3PM she was unable to stand without grasping a railing and was unable to walk, even holding her walker which she had used to walk into the club, so she had to sit on its seat for me to wheel her to the car. Some stress involved, she fears being tipped out.

After watching the so-called "Carols by Candlelight" (even if I wasn't a Scrooge such "music" is rubbish) from Batman City she went to bed tired. About 1AM I woke to her calling my name from the passage outside the bathroom, a position she had got to pushing her trolley on the way to the toilet. I had great difficulty helping her enter the bathroom & onto the toilet. Then came the problem of returning her to bed. I remember thinking that her legs & feet were as rigid as stilts yet I am unsure whether I helped her push her trolley back or whether I used the wheelchair. This morning neither of us have a clear memory of that part of the saga. Scary though. Unbeknown to me, she rose for the toilet again around 3AM without needing my help.

After storms last night Xmas day is cool & cloudy, much better for her, although she is already sweating. We go for a salad & chicken lunch for we oldies lacking family contact today at our village hall.

Chapter 275 - Not Very Motivated

My motivation for recording information wanes. I procrastinate. I forget events, details.

Over a week ago we drove to Big Smoke for an early Xmas get-together with the Ugly Sisters and also to visit her aunt further north. Then on the Sunday we visited our grandchildren then stayed overnight in a motel, recommended by a friend, at which we will stay again because of a disabled parking space right at the door of the room, large double bed (its only defect, will ask for singles next time), large bathroom with all the correct grab rails in the correct places. She was even able to take her walker into the bathroom!! Such a relief after being in conventional homes for a couple of days, people have no idea how congested their bathrooms/toilet rooms are.

At long last the reason for her horror of travelling has been exposed. She fears being in an accident and trapped in the vehicle, unable to extricate herself due to her PD. She felt the same way seated in the rear seat as her brother-in-law drove us to see her aunt. She told me this while on the return trip home.

All in all, the trip was OK, the weather not too hot or humid for her, although she did a lot of tabbing of her face with tissues. Very happy with the motel room we decided to stay an extra day to wander the shops, but on Monday morning the thought of filling in the remainder of the day & evening after shopping changed our minds. After completing an hour's worth of shopping we headed home. I bought her two monitors to attach to her main laptop so she can see text better; and the original extra monitor on that laptop has been moved to her laptop attached to her embroidery machine.

Her feet & legs are freezing more often. As yesterday, she was unable to rise from doing patchwork even though her walker was within her reach. I attempted to assist her but even my help was unsatisfactory because she feared falling as she turned to move away from the chair. Difficult to describe, impossible to imagine that standing from a hard chair, twisting the body slightly, stepping one foot to move forward can be so difficult and dangerous - until one notices that her feet do not move even so slightly to assist with balance, heel does not rise, toes do not bend, knees remain in place in space.

Earlier in the week she sat on the shower chair for 40 minutes after she was able to move herself sideways off the toilet. She had not taken a CB with her, did not think to press the door bell mounted near the toilet, I suspect she yelled out a few times because something woke me.

As the bursitis in her left hip faded we did less massaging with Tiger Balm and a vibrator, until a few nights ago when she lay on her left side in bed too long, so her hip pain returned. Last night the left hip was massaged. She has not mentioned pain this morning.

The warm weather, her constant sweating ( she is usually sitting in front of a fan) has encouraged skin rash and itchiness on her left wrist whenever she wears the watch we bought a year or two ago. The old one that once belonged to her mother seems not to affect her, although its battery is flat, I can't open it ; the last time I did the battery was difficult to buy. So yesterday I browsed for information about the problem and was surprised to learn that it is usually caused by small percentages of nickel (even in "gold" and "stainless steel" bands) and I suppose aggravated by the corrosiveness  of sweat. Today we will look for an all plastic banded watch, although I learned that even some plastics can cause the problem. What's so important about a watch? Just that it helps her take her meds on time, and other forms of time keeping such as a pinned on nurse's watch (she has one), mobile phone (she has one), tablet (she has one) are not nearly as convenient as a wrist watch. We were supposed to receive a meds alarm box from our PD group.

Two events may have an impact on her; her friend around the corner moved away north last week and the old bloke in PD denial who lives next door froze on the toilet for an hour or so, could not be moved by his wife and our village warden so was taken to hospital by ambulance and remains there. Not good for her to learn this.

Chapter 274 - Quiet Path Upwards

Things are better. She has much less pain. Her left hip is so much better that our routine of Tiger Balm oil & vibrator tend to be forgotten. A spot on her hip remains tender, pains & aches occur down her left leg. I can't remember the last time she needed to be rescued with the wheelchair. That's not to say she doesn't have awkward moments. A day or so ago my CB radio clicked; I thought I had bumped it in my pocket, I decided to ask "Was that you?" and the reply was an anguished yell sounding hollow so I found her in the bathroom seated on the shower chair, slacks half down, unable to arrange her clothing, unable to rise. Last night she stayed too long at her embroidery machine, too close to meds time, stuck unable to rise from her chair. And yet at times she is quite mobile, as yesterday afternoon when she went around the corner to her friend's place pushing her walker.

Several mornings ago she told me there was a frog in the bedroom during the night. I hid my concern about this comment. Last night when my CPAP was running & I was almost asleep she said "There it is again - there's a frog in here." I stopped my CPAP and damn it all - there was a frog croaking somewhere outside the bedroom window I decided after I rose to determine the direction the croaks, at maybe 5 second intervals, came from. I returned to bed and sleep.

On Saturday we shopped for some clothes, she in her favourite shop, although most of the clothes to my eye suited the populace on the south side of town. She also wanted to check the availability of firm, solid chairs at a store in the main street having a "moving to new premises" sale. I said "That shop is just opposite the mall, isn't it?" She assured me that the shop was too far up the street to park at the mall. To humour her I drove several blocks along a side street before doubling back down the main street, not finding the store in question until we were almost abreast the mall. Her sense of street layout is decidedly whacky. Yet she is able to complete patchwork quilting quite easily, she is able to arrange small geometrical shapes better than I could but is very confused by street layouts. When driving aided by the GPS I like her to indicate whether the next turn right or left is the one to take when the dismembered voice says "Turn right/left in 300 metres" but that seems difficult, maybe because she concentrates more on the traffic around us.

Chapter 273 - Living Returns Toward our Version of Normal

Several applications of Tiger Balm to her left hip, knee & lower leg vibrated in with the small battery powered, LED flashing $2 ball vibrator has had a beneficial impact. For the last three nights she has only risen once; this morning we both rose at 9AM, although I was up at $AM, returning to sleep sometime after she rose around 5AM; she wanted to use the loo rather than the commode, "Why stress yourself" I said, then relented and I think her self confidence benefited by her walking the distance into the bathroom. She showered and dressed without any help. Some of her pain relief has been due to her taking some painkillers containing codeine she found in her cache of pill boxes. Not many left so she will soon run out of them.

Following the GP's advice she skipped physio on Monday, attended the sheltered workshop on Tuesday which she regretted, complaining about the chairs she has to sit on causing her extra pain. On Wednesday we attended a demo at our hall for mobility aids, she coped well doing so. I think it was Thursday she had her toe nails done. Her friend around the corner announced that they are moving in a fortnight, so she will lose that human contact that had a need to unburden to her.

Yesterday we met with the Big Smoke friends at the club up the 4 lane. Although seated all day she coped well with the outing. Our washing machine has grown a form of scunge life in its internals so at the moment she is flushing it & putting small loads of washing through, for me to hang on the line.

Last evening she was failing to knit a pattern for a mobile phone bag, wasted several hours unsuccessfully. This morning she wonders whether the pattern is wrong. I hope so. There have been no further phone number confusions as led the neuro to have her have a blood test, the results for which she rang the neuro's rooms the other day, and although the neuro was unavailable, the receptionist said the only deficiency was Vitamin D (for which she is taking supplements as per the GP).