Chapter 438 - This Road is Very Tiring

I wake each morning, woken by the news on RN, for I sleep all night with a bud in one ear, bad practice I know for some programmes tend to keep me awake in interest, some seem to wake me up in interest.At times I wake realising I have missed the conclusion to something deep and meaningful. Yet if I have nothing to listen to as I drift off to sleep between 2200 & 2300  or after I wake at 0300 then sifting and sorting plans to cope with daily issues, never ending in a circular manner is guaranteed to prevent me sleeping. At times my technique of making notes in the middle of the night sometimes works, but that means stopping my CPAP machine, removing the mask, finding my glasses, pen and notepad tends to disturb her. So for these reason I begin the day tired, continue the day tired, go to bed tired and one of those simple pleasures in life, reading a good book in bed, is denied me.

And I realise I am tending to post more about myself these days.

Evenings are somewhat easier now that Wild Dog carers arrive about 1900 to help her to bed. Daylight saving  is not such a bother as I expected, although the warming weather is. So each evening the air conditioner (wall mounted in the lounge room) is on to cool the bedroom and I also retrieved the evaporative cooler to place in the bedroom. Even so, so places a gel cooler beneath her head and a damp hand towel is often across her forehead.

During the week we attended a "Meet & Greet" session for the carers' respite gathering I will attend for one day plus two half days in the middle of the week after next at Blow Hole. I was the only male in some two dozen attendees who looked as if they cared for disabled kids. I hope there will be others in a like position to mine. Total attendance is expected to be 90.

Her left ankle is stiffening and I suspect that means the Botox is wearing off. Each morning I try to have her do sit-stands in the frame on the back patio, 5-15 minutes of her left foot on the vibrating platform, and 5-10 minutes on the pedal machine. She sees the possible benefits of such exercise, yet lacks the motivation to begin each session by herself. And my weariness removes much of my enthusiasm as.

Early in the week she began assembling patch work squares; I became excited with her progress. Then on Wednesday she took the fabric pieces and her sewing machine to respite to continue the job, for such is much more interesting to her than bingo and scrabble, she detected something wrong with her work, began disassembly, coming home with less constructed than she began the day. There have been several attempts since to progress with the job. Perhaps there has been none, because yesterday Saturday she "did not feel up to going" so I rang to say she had had a bad night. I always encourage her when she begins a new task but I have learnt that once she strikes problems nothing is achieved with advice or encouragement for a little of such goes a long way and when such is ignored tends to point the way to minor domestics. So she gradually drops one project to begin another.

She enjoys checking the Tatts results each Sunday, even though winnings are notified overnight by email. Once she did her checking late on Saturday nights once the results were available but now with tiredness and sore eyes she is happy to go through the numbers even tough she knows whether we have had a winning combination or not. We have had minor prizes for the past four Saturdays.

Her appetite is lessening again or maybe her swallowing problems are increasing. She frequently leaves what once were interesting frozen dinners for her. Breakfast is becoming difficult; musn't be gluey, hard or sloppy so I'm offering a number of cereals and porridge and if these fail, a glass of Ensure, the dietary drink. Lunch tends to small spring or sausage rolls. A daily Movicol sachet has become too much dietary fibre for her so she only has it every second day.

She continues to be fascinated by strange phone numbers from missed calls on her mobile phone; every so often I block the unrecognised number, apologies to any genuine callers. Much the same on her email account, periodically I junk most of her incoming emails, for she clicks on tantalising buttons on web pages offering surprises and winnings; she cannot comprehend that all such are dangerous and at the very least these blood sucking marketeers are just out to con people and collect personal data and interests in order to send more tantalising offers.

As directed by the neuro we last saw at West Beer her daily Duodopa flow rate was increased from 5.2 to 5.4ml last Wednesday. I must go and dump the data from the FitBit on her right leg to see if there has been any noticeable effect yet. Not that anyone could care. Along with my tiredness comes more negativity. And not improved by the Trumps of this world.

I read an abstract which indicates Parkies are very sensitive to heat stress. Morbidity increases rapidly for every degree centigrade above 30. I'm sure this applies in her case when even in the middle of winter she needs a fan blowing on her at night to reduce her head sweating so much. She may think it only her head but her body often needs sponging with a damp cloth. In the non-airconditioned hallway in our house at the moment the temperature is 24.6C.

The daily prints of her FitBit activity since last Wednesday don't show any interesting change as far as I can tell for an increase in flow of 0.2ml/hr.

Took her down the street this afternoon for a milkshake, a craft magazine and a "walk" around Kmart, legs vigorously dyskinetic the whole time. I just put her to bed for some relief, and if she dozes then she should be much better by the time a Wild Dog carer comes about 1900 to change her for bed.

Chapter 437 - Bad Signs

Bad signs from me, not her. I can't remember whether I wrote about an event that happened about a month or so ago, an event that frightened me. One Wednesday morning , a respite day for her at Wild Dog, I left her to collect knitting and such to take with her that day while I did whatever I do out here in my dungeon. When I checked if she she was ready I found her at the kitchen sink, seated in her wheel chair, having un-potted the Peace Lily her younger sister had given her over a year ago when she was in West Beer hospital having the Duodopa plumbing installed. Imagine the lily, root ball exposed, sitting in the sink, soil and pebbles on a plastic bag, with the small plastic pot beside. She was probably correct that the lily need re-potting; yet she had no soil or larger pot to hand. I just went wild, grabbing the handles of the wheel chair to withdraw her from the small kitchen space, then began to shake the wheel chair back and forth. She yelled loudly. I thought "This is like shaking a baby to death" before I realised what I was doing. I stopped, wheeled her out of the way then cleaned up the mess. I felt foolish. After taking her to respite I bought a larger pot then re-potted the plant. Then I rang the local Community Health Centre to make an appointment to speak to the psych person I used to regularly visit, just to speak to a non-judgemental person, only to find she was away for a period. Another name was offered, I accepted, then later was called by a coordinator who had to ask a range of questions again because I had not been there in the last 3 months or so, all most annoying to me, but having set up another appointment for some weeks later, I was most relieved and felt "safe".

The appointment was for last Wednesday while she was at respite, on our wedding anniversary.Whether reports from previous meetings or due to the approach of this new person, I was able to relate the instance of my loss of control quite easily to a sympathetic ear. We agreed to meet again following a brief respite organised by a carer organisation in Hot Air City which the lady approved of, suggesting I needed more respite because the incident as I described it was a tipping point.

The respite in question involves two nights, a whole day with a half day either side. Since neither of us want her to go into the Wild Dog home even for such a short period., "in home" care is being planned which involves a carer in attendance for three nights plus a nurse, contracted from another agency, visiting at 0600 and 2200 to administer the Duodopa pump. During each day she will be taken to Wild Dog's respite activity centre for about 6 hours by a wheel chair friendly taxi. We have a meeting with Wild Dog staff tomorrow to discuss the details. I hate ti imagine what this will cost, but seemingly will be funded by the care organisation in Hot Air City.

For the first time in ages we attended our local Parkie support group meeting last Thursday. Of interest was a comment by someone who has had DBS. In speaking about an hour's sleep giving her an hour of relief from dyskinesias, he said he does not need to sleep, but simply to lay down for a short while whenever he has problems in order to recover. I am still unable to locate any practical tips for using sleep to dispel her dyskinesias. The FitBit remains attached to her right leg, recording her excessive leg movements.

Her recent bowel cancer test gave negative results. She is very relieved; had to force herself to open the letter. Her sleep test results are available but I forget to follow up for a report.

Chapter 436 - Even After 25 Years

She was diagnosed with PD 25 years ago. You would have thought in that period of time we may have read something about the effects of sleep or maybe some enlightened person may have told us. Perhaps we haven't listened. Perhaps experts believe that too much information confuses we old farts. I have used the Sara Stedy to transfer her from her bed onto the loo each morning since the beginning of this year. I have noticed the ease with which she is able to stand upright onto and position herself on the Sara Stedy so that I am quite easily able to flip the seating flaps into position for her to sit on before trundling her out of the bedroom into the bathroom. Later in the day, especially once her legs become dyskinetic, when she needs the loo she is unable to stand upright on the Sara Stedy, instead she simply bends at the waist, with knees slightly bent. This posture makes flipping the seating flaps into position very difficult indeed.

During my last post I recorded that she felt unwell and asked to lay down. Her legs were dyskinetic. So I trundled her to bed on the Sara Stedy and as usual at that time of day she was unable to stand upright as I described above. She slept an hour. On waking I had her stand on the Sara Stedy and noticed she was able to stand upright. Her legs were NOT dyskinetic and remained quiet for about an hour. I had discovered something! When this was mentioned to Wild Dog Carers this effect was obvious to them because everyone knows that a siesta is good for one. I think my point was missed. So the next day after lunch, both legs dyskinetic, I placed her on the bed, room darkened, quiet soothing music from AccuRadio, leaving her to enjoy a short sleep. Not so. She remained awake, her legs kicking away. So I put her back on her wheelchair an hour later.

Yesterday, Saturday, her legs were dyskinetic from about 0930 and when time came to leave for Saturday respite while I shopped, she did not wish to go. Then at 1040 after being on the loo she asked to lay down, both legs dyskinetic. Again the bedroom was darkened, AccuRadio played soft music. This time she slept. An hour later she called me on the CB, awake, wishing to get up. She stood upright on the Sara Stedy, no dyskinesia as I took her to her wheel chair. She was able to transfer herself from wheel chair to loo. At noon I bundled her into the car, bought some handcraft magazines for her to read while enjoying a milkshake  before I did my supermarket shopping at the chemist and Coles, I took the shopping to the car then returned for her to find both legs dyskinetic. At home she needed assistance to get onto the loo. As before, she had decided to lay down, was able to fall asleep and then experienced a little over an hour free from leg dyskinesias.

In between the two sleep events described above, we attended the West Beer PD Clinic last Wednesday, seeing neuro Dr C this time; the neuro who initially interviewed her before she was placed on Duodopa. I gave Dr C some annotated prints of the FitBit results as well as a couple of photos of two postures when she stands in the Sara Stedy. Dr C said similar beneficial effects following sleep have been noticed in other patients. At home I searched for on-line references about the benefits of sleep to Parkies but only found material about sleep disturbances. The PD Clinic nurse said she would ask Dr C for me. My mother-in-law used to live in a retirement village where she knew a Parkie who went to bed and lunch each day, staying there till next morning.