Chapter 363 - Working It Out

That's what she says, "I'm working it out", often, not always, as I try to move her from recliner to wheel chair, wheel chair to bidet, bed to commode and the reverse directions as well. Many times she needs very little help. But on those occasions when she does, and I try to hurry her, she needs to "work it out", she will extend her hand to delicately touch the object she intends to move to, fingers gently touching its surface, as if she is unsure whether it is there in front of her, gauging the distance from her body, as if in a daze or in dim light. And before exiting the car to the wheelchair she will often ask for the detachable foot rests to be swung out of the way, sometimes folding them forwards, sometimes backwards, to gain a few millimetres less gap between the wheel chair and car body. I see little difference; I humour her so as not to stress her.

Although she continues to utilise her cluttered trolley for moving about the house, quite often she needs the new wheel chair. She prefers the new wheel chair whenever she is away from the house and is prepared to sit in it all day at Wild Dog respite on Tuesdays and Saturdays. Similarly a few days ago when we had afternoon tea at friends around the bend in our street. Since our short driveway, maybe 3 metres, has a slope she wished to be pushed across the piece of rough "lawn" at the side of the house to gain access to the paved driveway to the houses behind; the irregular surface not to her liking as well as a gradient crossing the slope of the gutter. She is terrified of gradients and gaps in her path. A back order on anti-tip wheels for the wheel chair were delivered and fitted a couple of days ago.

I procrastinated (I hate chasing people about appointments, arrangements etc by phone; just one of my hang-ups) checking about Dr F's referral to a spinal expert until last Thursday (2 weeks after we saw him), ringing our local GP first in case a report had been sent there; one hadn't. So I rang Dr F's receptionist who seemed surprised that I was chasing such information since it takes 2 weeks for letters to be sent out, but she confirmed that a letter/referral had been sent, either the afternoon before or that morning, to a doctor  at the hospital we have so often visited in Hot Air City (his name I couldn't find so I probably mis-heard it). We have not received any advice by mail yet from West Beer or Hot Air. There has been no reply to an email I sent to the PD nurse at West Beer from whom Dr F said he would request a "tutorial" about Duodopa for her.

While she was at the kitchen table sewing (she has migrated back there from her sewing room) one afternoon last week, our new neighbour at the rear popped in for a brief chat. The neighbour is a retired nurse, very experienced in old people's homes, so she expressed surprise that my PWP, happily hand sewing, without a tremor evident in any limb, was diagnosed with PD 23 years ago.

She continues to get out of bed each night to use the commode; sometimes needing assistance, usually not. The midnight bloomers have been dry by morning. However, she often goes through the "I'm working it out" procedure for me to position the commode before lights out, or in the darkness of early morning. No position of the commode beside the bed is ever convenient for more than 2 nights in a row. One morning I woke to find her on the commode around the foot of the bed, where she was able to hang onto the bed end. She had moved the commode while its wheels were locked.

Last Thursday Wild Dog failed to send a sitter while I attended a counselling appointment with R at Community Nursing. After I phoned physio N came and stayed with her until I returned. Quite possibly she may have been OK on her own; but I can't chance it. While at the appointment, I mentioned the changes at home with commode and midnight bloomers and R thought it an improvement. Yes an improvement perhaps for a few nights, before dissatisfaction and difficulties arise and we attempt something else. What comes after catheters, various styles of midnight bloomers, commode, going to the bidet. One thing I noticed, although she only uses the commode usually twice each night, the bloomers remain dry, so in a way, use of the commode is training her out of incontinence.

Yet we both suffer disturbed sleep. My cheap MP3 players are failing, a shame since repeated hearings of pieces of "Walden" have been the most effective in helping me go to sleep. A device containing some 16 nature sounds, rain, wind, storm etc arrived a few days ago and although it helps me to initially go to  sleep, it fails in the dark hours to help me return to sleep, mainly because I can't help trying to identify where the loop begins and ends, and once detected I lay awake listening for the slight interruption; perhaps I should count them. Also, some of the panel lights on the box are far too bright. So last night I returned to listening to Radio National, and that causes me to dream about items being reported or discussed.

She has been suffering severe hip and lower back pain which also moves down her legs; the burning, tingling, twisting, cramping in her feet and legs continues unabated. Thinking on these things in the dark this morning I remembered the diagnosis by the temporary GP who diagnosed bursitis in her left hip several years ago. So before the Wild Dog personal care lady arrived this morning I used Tiger Balm oil and a vibrator to massage her left hip; then mid-morning across her lower back. Her pains reduced somewhat.

For ages she has had problems voiding her bowels; sitting on the bidet for half an hour or more patiently waiting for something other than "pebbles" to fall into the bowl. She was diagnosed with diverticulitis many years ago; yesterday I decided I will ensure she eats nothing containing small seeds, which includes some of her favourites things like tomatoes, strawberries, kiwi fruit, sliced pickled gherkins and nuts. Together with her swallowing difficulties with peas, beans, leafy vegetables and carrots her meals will be bland. Perhaps we soon take up the smoothie fad.

I must be under some stress at the moment; those tiny itchy water filled blisters have appeared on a couple of my fingers, as in days long gone by.

Chapter 362 - Between the Moon and West Beer City

Her fellow inmates at Wild Dog respite disappoint her. They participate in playing Bingo and similar games in anticipation of winning small prizes of lollies or chips. Some will play scrabble with her, well sort of, because they depend on her help to make words larger than two letters. She continues with some sewing tasks for their stall, yet is disappointed that her fellows won't participate much in hand craft tasks.

Almost daily she uses her new Surface Pro 3 for emails; yet stumbles off into other applications, unable to tap her way back. Yesterday she found some "free" embroidery designs, requiring my assistance to download them. Unfortunately, I am becoming more irritable when trying to explain how to carry out such mind numbing tasks, and a touch screen does not help, even though she has a keyboard, touch pad and/or a mouse. Both the input devices and the functions of the windows, overlaid 4 or 5 deep in a muddle on the screen are more than she can cope with; I bought several tutorial books plus DVD to help her, but such are chores to her, and tend to emphasise social media and sharing photos. And as I said, I become irritable very easily.

To Hot Air City on Thursday to buy a more comfortable wheel chair for her. Her walker which doubles as a small wheel chair is not ideal now that she walks much less, really not at all. The new wheel chair is comfortable, arm rests can be raised, hand brakes for the "driver", padded seating, the front wheels do not bump her feet and is surprisingly easy to push. On the way home we tried out the new wheel chair in Big W where she tried on heaps of shoes but none were soft enough for her feet.

Then on Friday to the club at Highlands Town to meet the Ugly Sisters for lunch, partly for birthdays. She remained in the new wheel chair the whole time, so she seems pleased with it.

She has been wearing another type of midnight bloomers yet even so, there have been some "accidents". One night she got out of bed to use the commode. Yesterday I repositioned her bed and last night left the rails down on one side so that she can readily use the commode; twice, and this morning the bloomers were dry. However, I think her sleep was disturbed because she feared rolling out of bed. The place where we bought the wheel chair  may be able to supply a spring loaded/latched small bed rail to suit her bed, although the manufacturer's catalogue does not list one.

A few days ago her left big toe was painful/burning/tingling/whatever and while I rubbed some pain relief gel on it she told me she was unable to feel my fingers rubbing the toe, although the pain continued. This morning whenever she hung her legs over the side of her bed they shook uncontrollably and the sensations from her feet caused her to cry; on bringing her feet back into bed the shaking ceased and some of the pain.

We have heard nothing from West Beer City since our visit to Dr F on Thursday previous. Tomorrow I must make some phone calls to find out about the proposed referral to a spine specialist and the proposed sales pitch about Duodopa. No directions from the experts encourage her feelings of being a lost cause.

Chapter 361 - Briefly

To West Beer last Thursday for the noon appointment with Dr F who told us that a number of those present at the Monday conference we attended some weeks ago believe she does not have PD but "neuro-psychosis" (I think that is what he said, and Dr G does not provide a good explanation that I am able to understand). He laughed when he saw the expressions on our faces, saying he didn't believe that. He thinks she has a narrowing of the tunnel in her vertebrae, and that squeezes her spinal column to cause her leg problems. I did not catch the word he used. He inspected the recent MRI scans of her lumbar region as well as a CT scan taken some time ago. He will arrange for her to visit the West Beer PD nurse for a sales pitch about Duodopa which he thinks will stabilise her PD better in time for possible surgery on her spine, about which he will arrange a referral to a suitable expert in Hot Air City.  At the mention of surgery, she asked "Aren't I too old for that?". He didn't agree. Dr F was running over an hour late with his appointments so we were ushered out of his room before being able to collect our thoughts to ask questions. She came away feeling very disappointed, having hoped for an "answer"; perhaps she has been given one even so. On the way home we had our Wild Dog driver stop at McD for a birthday lunch, for the next day, Friday was her 72nd Birthday.

While researching Dr G for the term that Dr F may have used  for her possible spinal problem I came across a Latin term meaning "horse's tail" which reminded me that she had damaged her coccyx in a fall some years ago. A search of this blog found that she had fallen off her ergonomic stool (she stopped using it and gave it away; it was only $300 when bought in 2000) in October 2009. The local GP at that time said nothing could be done about it, telling her to take Panamax to ease the pain; which took 6-8 weeks to go away. We must tell this to whatever spinal expert she sees.

I had intended to order pizzas for her birthday but since she was reasonably mobile, we went down to the Club instead for an evening meal on Friday. I wheeled her in her walker in which she remained for the meal.

Her leg symptoms are worsening, This morning she was standing for some 5 minutes at the kitchen bench top, sorting odd items, when she said "My leg is going" so while I supported her she hobbled the few paces to her rotary chair. A close call for a fall.

Chapter 360 - Just Routine

I have not been religious about keeping notes these last two weeks; just a few about the unusual. I can't recall how much tingling, burning she has experienced; perhaps she does not comment, perhaps I don't listen about such ordinary matters. I notice that her left foot continues to "turn in", her feet often feel large and heavy, she often has back ache especially when getting out of bed.

Anyway, from notes I did make. Monday morning 22nd September she had taken herself to the loo, pushing her trolley, and on leaving became light headed, some difficulty navigating her way through the living area so she sat on the large shoe box we keep near the front door. She was unable to figure out how she could find her way to her sewing room. She said she felt as if she had been hit on the back of the head. After she called me I helped her back to her recliner. If I had been rational about this perhaps I should have taken her to the hospital. That night at 2100, on her way to bed after machine sewing, she became stressed in the middle of the bedroom, sweating, breathing quickly and noisily.

On Tuesday 23rd she delayed her 0600 meds by an hour hoping to make the stress of another MRI more bearable at 1245, again at West Beer, to which we were driven again by our helpful Wild Dog driver. I removed the Apo infusion and pump in the car park at the hospital and did not refit it until home again around 1730. This MRI was on her lumbar region and was not as difficult for her as the previous MRI. She makes comments that she has been surprised that her mobility, especially getting in and out of cars, improves when her medications are disturbed, stopped or delayed for these MRI's and the "Monday 9am" assessment at West Beer. Strange indeed.

The next day she felt strange at 1430 and on attempting to stand from her recliner was dizzy, then wished to sleep, felt sick and her eyes became cross-eyed (she said).

Then a little after 0300 on Thursday she decided she needed to sit on the commode rather than rely on the pads she had on in another type of pants given to her by physio N. The wet pad was replaced. I decided to turn the face of our T-hub (tablet phone system) which displayed the time in large glowing numerals, towards the wall so that she was unable to watch the minutes in the early hours tick away. I think this simple manoeuvre has helped her sleep better, then a few days later I remembered experts' instructions not to have glowing screens in the bedroom at all for better sleeping so I removed the screen to the kitchen. Now to find the time of night she needs to press the button on her bed-side clock; I think we both sleep better without the glowing. That evening she was unable to eat much of her evening meal; unable to swallow much of a pork chop and vegetables. Then on going to bed she decided not to take any more of the half sleeping pill; I objected but she has not had wakeful nights since, or at least not sufficiently so to wake me. I am beginning to feel the benefit of less broken sleep. Thinking about it makes me feel tired, and I yawn, as I think about the matter as I type, made worse by daylight saving having kicked in this morning.

The next day, Friday 27th, her left leg failed, almost fell, while physio N was here (she continues to visit on Wednesdays and Fridays). That evening a strange event. I did not have my CB radio with me while I  made an on-line supermarket order when the phone in my dungeon rang. I ignored it, assuming she picked up the call on another extension. Half an hour later I went to check on her; she was marooned in her sewing room, too much sewing bits and pieces around for her to get out of there; she had been unable to raise me by CB so called the land line by the VOIP phone (and I didn't answer) and for some reason her calls on the CB echoed from our second bathroom (adjoins her sewing room) where she assumed I had collapsed and was laying on the tiles. I had left the CB on the kitchen bench top. She was stuck in her chair for over half an hour, thinking the worst, until I ambled in. An example of how simple, every day ordinary matters become disasters for someone with disabilities.

We bought a new underlay for her bed; her bed is now a little more comfortable since fitting it this last Monday. A leak, first in ages, on Thursday required it washed sooner than hoped.

A very interesting vision problem last Wednesday. She was "cleaning up" her email when she called me, complaining that her monitors were bad. Letter combinations of "ll", "il" and "ill" in any words on her screens displayed, to her, as fuzzy red whereas all other letter combinations were normal. All text looked OK to me, as did printed text, monochrome text on an ebook reader and text on her Surface Pro (new device for her to read emails etc while she is out on her recliner) looked OK to her.

Last Sunday we went shopping for some clothes and shoes for her; she seated in the walker the whole time. A pleasant outing for her.

This coming Thursday she has an appointment to see neuro Dr F at West Beer; she hopes he will give her an explanation of why her legs are so bad.

I am reading more about neuropathy.

She is concerned about how we will cope in a month's time when I am scheduled for a colonoscopy; just a day event at the local hospital.