Chapter 435 - Just Tired

For both of us; we're always tired. And irritable. And going to bed earlier. I can no longer lay in bed reading good books; she nods off in bed while watching streamed light and humorous TV series or movies. She tends to be awake at about 0600 when I rise to begin the day changing her Duodopa flow rate from 2.0 to 5.0 and then a Morning Dose so that she has mobility by the time a Wild Dog Carer arrives at approximately 0750.

Each morning I place her feet on the Vibrating Platform but after several days of use for up to 1/2 an hour per session my early hopes of it being beneficial for her left foot have been dashed by the triggering of dyskinesias, especially in her right leg, even when it is not on the platform. That side effect means the Platform must be used as early as possible each morning. Yesterday the "Wheelchair Standing Frame" I requested to be made by the volunteer organisation TAD was delivered. She "road tested" it this morning and while reasonably mobile, she was able to do some sit-stands but negligible stepping before commenting that she had tired. The little exercise of this type she has had using the fore-arm walker has not been beneficial. That machine has now been retired as being too dangerous. The standing frame has been left on the rear patio, partly due to the space required for it but also for her to experience the fresh air and a closer view of our minuscule flower garden. The stand requires some foam pipe cladding to cover the lower front bar so that her lower legs are not hurt when contacting it. Something similar is needed on the Sara Stedy which already has a leg bumper pad at the front but it is too firm. I keep duct taping a small pillow over the bumper because she had broken the skin on her right shin somehow (on the Sara Stedy?) and the pressure by the Sara Stedy on the area by the bumper delayed healing. Unfortunately, her inquisitiveness of late, attracts her attention to small defects in objects; in this case the crinkled appearance of the duct tape (not being intended for such things as pillows) catches her attention; then she picks at, attempting to straighten or flatten the tape until she has useless little bundles of duct tape left over and the pillow is no longer held in place. I will try some pipe cladding there as well.

A short time ago she called me on the CB to help her to the loo. She sat there a short time, called me again to get off, then said she did not feel well, needed to lay down, so I trundled her to bed on the Sara Stedy so some 10 minutes later she is sound asleep, mouth agape, fully clothed on her bed, side rails up.

We had been talking together about having Wild Dog help her to bed at, say, 1900, an hour earlier. She decided against it. Yet this last week we have both felt so worn out and tired that the subject came up again. A few days ago she must have mentioned this to one of the Wild Dog Carers because last night one of them knocked on the door at 7PM wondering whether she could help her to bed now or, if not, she would return at the normal time. I was more than happy for an early bed time for her because I was very frazzled and she was uncomfortable and dyskinetic.  Once the carer had gone I played "Carousel" the movie for her and within some 15 minutes she was asleep. I left the movie playing while I sat in the lounge room reading the latest John Grisham on my eReader. The same offer was made for tonight; I accepted while she hesitated. I will ask Wild Dog on Monday to change the schedule.

During the week a free Government sponsored bowel cancer poop test kit arrived. The procedure and sampling hardware were much different to that which I have used. This reminded me of a DNA sample kit; except of course for the messy part. After some thought, she was able to leave an appropriate sample in the pan in the commode.

Areas on her arms, legs and lower back become very itchy at times, and child like, she refuse to stop scratching. Fortunately, a cream of one sort or another stops the itchiness.

A few days ago the Wild Dog person who helps her with mild exercises decided to take her outside for a "walk" in the wheelchair. She was willing, but I heard her say "But not out on the street while my legs are shaking"; the first time I have heard her express such feelings, although I realise she is uncomfortable in public while her legs are dyskinetic.

The FitBit is attached to her right leg each day. I Snagged screen shots of the daily graph and after marking relevant events on some will show the neuros at West Beer at her next clinic appointment this coming Wednesday.

Chapter 434 - Experiments

I came to realise that each afternoon or whenever dyskinesias begin, her mobility is very poor, suggesting she is under medicated. Mobility is difficult to determine for someone confined to a wheel chair so I take as a measure of her mobility and rigidity whether she is able to stand into the Sara Stedy without assistance and whether she is able to stand vertically enough to easily swing the Sara Stedy seat paddles into or out of position. When she is "Off" then she bends forward at the hips rather than lifting her bum.

I am fed up with West Beer for not contacting us between Clinic appointments to offer advice or answer questions. So after coming to the conclusions above, on Sunday 16th November I decided to give her bolus doses of 6ml (rather than 2.0 ml set in the pump at West Beer) at 0850 and 1400. The results suggested such a large bolus was too much, dyskinesias were vigorous, she was stiff, feet very tight and tingling throughout the day. The FitBit graph showed distinct "quiet" periods between 1500 and 1700 and again between 1900 and 2030, after which strong dyskinesias began again,  and she became very hot. A couple of Panamax at 2220 then within 10 minutes she was calm and went to slept.

The next day I only gave her bolus doses of 2ml at 1200,1420, 1610, 1815 and 1915.

The following day she had 2ml bolus doses at 1000, 1200, 1400, 1600, 1800, and 2000. This was the calmest day, the most mobile day she has experienced in a very long time. There was only a brief spate of mild dyskinesia at 12 noon just after the physio person from Wild Dog had left after running her through the usual range of simple exercises. A "good" day not to be repeated. Yet looking at the FitBit graphs some days have less dyskinesias than others yet by day's end we both feel we have experienced a bad day. I suspect though that was dyskinesias begin the taking of a bolus dose has negligible effect and I am somewhat irregular with my timing so I must set an alarm to remind me every two hours.

During our last visit to West Beer I made comments suggesting she has sleeping problems. In this case there was follow up in the form of a letter to our GP. Last Thursday I took her to Hot Air City for a consultation with a speech therapist. That night I wired her up to a sleep monitor so we both had an uncomfortable night.

Someone told me of the benefits of a vibration platform. So I bought one on e-Bay. I tested the device on her feet while she remained seated in her wheel chair late Thursday but the result was dyskinesias in both legs, perhaps too late in the day. This morning I placed only her left foot (the one with dropped foot) upon it at a vibration of 700hz and the only effect was tingling up and down her left leg when she touched her left calf. Then she discovered that her right leg reacted the same way.

Her eyes have been stinging, not relieved by spraying "TearsAgain" so yesterday I spoke to the chemist and he suggested Zaditen drops. Although both of her eyes were stinging, I only applied a drop to her right eye. Stinging has now gone from both.

This morning we went shopping for clothes for her, some new towels and some coffees, and a lot of walking for me. I am feeling my age.

The time is too late to write about depressing matters so I'm off to bed.

Chapter 433 - Heading Where?

She has difficulties getting ready on time; when I attempt to have her have her clean her teeth, pack her craft bag for respite she simply says "I will" then continues her current activity. I have decided not to "push" but let her do her thing, as this morning, she was ready over half an hour late to get into the car, and that may take 10 minutes or more; so today she was over 3/4 of an hour late at Respite, enough for them to call me on my mobile to ask whether she was coming as I pushed her wheel chair in the door. I have seen children in an activity say "I will" when asked to do something, then do nothing about the request. Drives me to distraction; whereas repeated toilet needs, pain, discomfort, needing items out of reach, buying tasty morsels at the supermarket, none of these bother me, instead giving me feelings of encouragement and being needed.

Last Wednesday. her other respite day, I left her to her own devices to get ready. When I checked at 10AM, the time to be there, I found her re-potting a plant in the kitchen sink, a plant given her last year by her sister. She had the plant in a pot of water, the soil in another, no larger pot to place it into and no soil to go with it. Also a flower arrangement given for her birthday had some greenery removed from it with the intention of growing the leaves and sticks in a pot. She had the wheel chair parked at the end of the kitchen at the sink from where she has difficulty backing out. So I grabbed the handles of the wheel chair and shook it vigorously. As I did so, the thought went through my mind that this must be similar to "shaken baby syndrome" when sleepless parents are unable to tolerate any more. My actions frightened her; and worried me.  I tried to make an appointment to see the lady I regularly spoke to about matters last year; she is on leave  at the moment, returning in about a week. Feeling guilty I went to the local hardware shop and bought two suitable pots to replant the the plant in one, the leaves and green stuff in the other.

I continue placing the FitBit on her right leg. The start and stop times of her dyskinesias are not synchronised to anything as far as I can tell.

Enough of this. I need to go to bed.

Chapter 432 - Tired and Depressed

Her? I don't know, but I am. And I postpone typing this blog; it causes me to mull over the ongoing, repetitive cycle of days and that is depressing.

Her daily behaviour includes a burst of dyskinesia beginning at approximately 1730 continuing to 2000, sometimes to 2200. Sometimes there is a burst around lunch time. How can I tell? Recently I read about an exercise toy, the FitBit Alto. Down I went to our local Hardly Normal store to ask whether the Alto could be mounted around an ankle of a PD sufferer rather than a wrist and whether data export was possible. A cautious response was forthcoming and I was recommended to contact FitBit Support. I did so. Miraculously within a few hours there was a response pointing out that the device was not a medical tool, must not be used for diagnosis, was inaccurate; ignoring my query about data export. Somewhat irate I responded that I was not diagnosing anything but only wished to monitor leg dyskinesias etc etc and was it possible to export the data. Again, another quick response directing me to a page on their site describing data export, which, had I looked a little harder I may have found myself. So on Saturday of the previous weekend down to Hardly Normal's again to buy a FitBit Alto with a large wrist strap, charging the device overnight and fitting it on Sunday. The only difficulty experienced is closing the studs on the band, virtually impossible, so I use a small piece of duct tape to hold the Alto to hold the band closed before covering it with the top of a sock (she always wears socks). It works!! I am not impressed with seeing the data in spreadsheet form; it is not as meaningful as Snagging the graphical display which is shown in bar chart format; bars coloured yellow, orange and green representing an increasing number of steps. I don't believe the colours can be seen as representing intensity of movement, a shame perhaps but the graph gets the message across. Although the time scale is course at about 2 hours/cm, in her case he afternoon dyskinesia always begins about 1730 in the week I have been monitoring. There may be small bursts of leg activity at about 0700 and 1200. At long last I have a crude objective tool to show the neuro experts; much easier to record and display. I know there are wrist mounted tremor devices; she has used such, I think twice, probably expensive and only on loan for brief periods. With the Alto I will be able to see the impact of a reduction in her 5.0 ml/hr daily flow rate which I assume will be approved of at her next clinic in a month's time. No more subjective waffle from my notes!! Below are two days' plots from last week.

She had her last Periactin appetite booster this morning at breakfast.Meal times are becoming an annoyance to me; after I place food on her small table, asking her to come and eat she says "I will" or "I'm coming" without doing so, instead continuing whatever activity she is involved with. The more I ask her to come the longer she seems to delay until the food is cold. I resolved this morning to not to become irritated, just to leave the meals be. Strangely, as I roam the supermarket looking for foodstuffs (prepared items usually) which may interest her taste and be edible by her, I feel emotional and protective, tending to buy too much, forgetting what is already in the 'fridge. Are these a hunter-gatherer behaviours in gathering food and reaction to it being ignored by those back in the "cave"? She persists in "cleaning" or re-arranging cupboards and drawer contents.

Neuro H. at the last clinic said a report was to be sent to our GP concerning comments I made re bowel motions etc. A few days ago a phone call from the GP's surgery arranged an appointment for later this week.

Yesterday our son and partial family visited (her birthday in a week's time) so we had a meal at the Club. Disappointed with the food and the ordering we have decided to apply for membership at the other club in town. She has been suggesting doing this for some time.

As I was extracting her from the car on the slider board onto the wheelchair, an old bloke at least as old as I am called out across the car park "Do you need some help mate?" I am finding these offers of help most annoying; one day I'll be rude. When I  am unable to move her in and out of the car on my own then I'll stop doing so and rely on wheel chair friendly cabs and cab vouchers.

All last week hay fever caused mt to sneeze so much that my ribs hurt just for a slight cough. Another grey windy day today has started me sneezing again, damn it!

Some months ago I raised a matter about visibility of contingency funds showing on the monthly statements from Wild Dog care. These funds are government paid as part of her Level 4 support. Their accounting pen pushers or keyboard pounders were working on it. After several months without any changes in the statements I raised the issue with the appropriate complaints commissioner from whom a recent phone call said the matter will be fixed. We will see.

Once again this year I was invited to set up a budget with a government agency to assist with caring needs, such as respite. So I've asked Wild Dog to cost In Home care I have a break for a few days. The costs will include an over night carer plus a nurse 3 times each day (at 0600, 0830 and 2200) to change Duodopa pump settings and cassettes. This will be costly and probably not affordable. I am attempting to have her become proficient with these changes herself by practicing with the spare pump. Unfortunately, at 0600 or thereabouts, she is not very mobile or awake to change the pump from its night time to day rate so could easily overdose or under dose.