Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Friday, April 27, 2018

Chapter 488 - Chapter Without a Title

Some days ago I began another A5 size 300 page notebook to record our daily happenings; this last noting daily medications and notable events between 11 November 2017 and 20 April 2018. Taking notes each day prevents me duplicating medications and various Duodopa pump adjustments, although I am finding it harder to remember to make notes immediately so sometimes I need to seriously puzzle whether both action and noting have not taken place. She tends not to remember either; such activities are an annoyance to her. Writing the dates and times is an advantage for me to keep track of time, advancing far too quickly these days. Also, without a few daily notes to guide me my waffling in this blog would be very difficult.

The evening of 16th April I experienced another "turn" as I did when we holidayed at Border City. At 1815 I lost my sense of balance without being dizzy and within 30 minutes I was kneeling at the porcelain, going through the motions without actually vomiting even though I had recently eaten a meal. Then I used her walker in order to have things ready when the Wild Dog carer arrived. The Wild Dog carer suggested I use, and then retrieved for me, the collapsible wheel chair from the car. Then between 1945 and 2115 with my feet up on my bed, seated in the wheel chair, I slept, waking feeling reasonable so into bed. Next day using the referral I had from the doctor following the previous experience I had a CT scan of my left ear area which turned out to be  clear when I saw the doctor several days later. He said if it happens again for me to try to get to the hospital for an ECG etc then I will be referred for MRI scans, especially for the back of my head. And so the problem arises of how she will be cared for when I need to make an unplanned visit to the hospital, especially late at night when Duodopa pump matters prevent a Wild Dog Carer from being available. Also doctor I. gave me Noxicid tablets for "heart burn" I was experiencing; now gone, except for those mornings when I forget to take the pill.

Her bowel motion problems seem to have eased; lately I recall fewer issues with encouraging her to get off the loo after being seated for a long time and only having dropped a few pellets. Since she last filled her pants attempting to get to the loo I have not given her Coloxyl. Unfortunately for the Wild Dog carer looking after her during my "respite" last Wednesday, the same mess occurred, so that day she had two showers.

The following day she began making a small pillow from something she had chopped up; then "to hold it all together" she said, she began to stitch large X's in rows around the pillow. The first few rows were barely reasonable  but as she progressed towards the other end the stitching of each row worsened until the two lines of each X did not cross. Once the rows were completed, she realised something was wrong so scissored away the worst and restitched, but not very well. And the sizes of the X 's varied greatly. Most definitely not the quality of the hand embroidery she did 60 years ago! Watching her stitching reminded me of a documentary I once watched of a spider spinning a circular orb that began well enough then became disordered as the spider continued spinning. I can't remember what was said to be wrong with the spider. Anyway, in this case some pics for Dr F.

She was interested for a short while to solve crossword puzzles on line but lost interest. Yesterday she bought another book of puzzles. Last time did I mention buying her a box of 1000 non-Leggo blocks? She said they did not fit together very well the only time she used them. So the other day I had her select two boxes of genuine Leggo ($100!) at Kmart but she has not attempted to build anything yet. She finds reading Mills & Boon novels too difficult so when she asked about audio books i retrieved her Samsung tablet, installed to Kobo application and downloaded my Kobo library to it then a couple of Maeve Binchy novels which she finds  too complicated so stooped to downloading some Mills & Boon, although there are not many available as audio books. Once out on our back patio she "digs" the raised garden bed with her fingers, pulling out weeds and anything she does not recognise so on Sunday we will buy at least one raised planter box in which she can plant things at her whim.

Sunday, April 15, 2018

Chapter 487 - Mundane Stuff

Evening meals have been difficult recently. Any firm, granular or tough food is rejected, often spat into tissues. Even the skins of seedless grapes. I peel tomatoes and slice them until she found the centres of the firm ones I bought too "tough", so now they are peeled then diced. For a long time, pasta (spaghetti etc) must be cut into short segments. Even slices of salmon grilled in a George Foreman often feel too "tough" for her. Acceptable frozen dinners are the answer. I keep her well stocked with chocolates (she needs some little pleasures) and any containing nuts or coconut are either spat out or rejected.

Breakfast consists of a small tub of yogurt or custard, a small tub of diced fruit, a slice of apple bun, a glass of pear juice with 4 teaspoons of Benefiber.

Lunch is often nothing more than a mug of Sustagen with strawberry flavouring.

Again to Dance for PD this past week. There will only be another two classes unless the group obtains more funding. Her usual exercise sessions by Wild Dog are cancelled on these Tuesdays and our house cleaner has to be delayed as well, so should the Dance for PD continue I will need to make permanent arrangements. Sometimes I feel like a secretary.

I have mentioned that Wild Dog carers look after her for 5 hours each Wednesday and Saturday; "respite" for me if, on those days, shopping and other routine tasks are ignored. Recently phone calls from Wild Dog ask whether the hours can be changed a little, say, 1100 to 1600 rather than 0930 to 1430 and I usually agree. Yesterday at 1100 was my monthly appointment to have my monthly chat with my clinical psychologist. When Wild Dog had not arrived by 1000, ie 30 minutes late by then, I rang the emergency mobile number on which I was asked to leave a message. Some minutes later I was called back to be told I had agreed to a start time of 1045, although I had no recollection of being asked for such an odd time and I had not marked such on our fridge calendar where I had noted my appointment at 1100. Fortunately, the carer, who had been attending to the woman next door to us, arrived by 1030, so I had plenty of time to get to my appointment.

During the week she spent a number of hours sorting coins so I bought a box of 1000 Leggo like blocks thinking these may interest her but so far the blocks were unpacked and placed in a plastic container. She is no longer attracted to crossword puzzles on her PC and has returned to doing a little sewing. One evening I played "Groundhog Day" from NetFlix for her while in bed. The daily time replay confused her, she was unable to follow the plot and about 10 minutes before the end she had violent dyskinesias  so I had to turn it off. Last weekend she spent re-organising the CD & DVD cases onto book shelves along with folders and books so now we have several CD/DVD towers spare. On Wednesday I attended the local Dementia Carer's group and although she has not been diagnosed with dementia, the comments of other carers about their loved ones sounded very familiar to me. Recently I bought a new coffee percolator; she retrieved the cardboard packing from within the box and when I asked why the cardboard was needed she replied that she wanted it for patchwork, templates I suppose.

Friday, April 06, 2018

Chapter 486 - A Day of Contentment

Yesterday, Thursday, I needed to stock up on meds from the chemist, a task I was unable to do the day before (Wednesday one of my respite days) when the Wild Dog Carer rang me because her legs were giving her a lot of bother perhaps due to "Dance for PD" class on Tuesday. I told the Carer to go ahead to give her a couple of Soluble Panadol which sometimes eases the discomfort; except this time she only wanted one. Anyway, I grocery shopped then was home by 1400.

Anyway, yesterday I connected to the Canadian "Dance for Parkinsons" archived classes and, seated in her wheel chair, she followed along with one of the recorded classes. Then immediately afterwards we went down the street where we shopped for a few items, including a quilting magazine, as well as the meds. A lunch of "Mediterranean Melt" was not very appealing to her when she found the sliced salami was too spicy for her. On the way home we both expressed our feelings that the shopping trip had been most enjoyable. During the 4 hours neither of us needed the toilet. There seemed to be no repercussions from the on-line "Dance" class. A rather amazing day!

Several nights recently around 0200 she has woken me with twisted legs, shortness of breath, the Duodopa pump tube wrapped around her arm (but not in reality). Sometimes I give her two soluble Panadol to help calm her. Perhaps her restlessness has been due to watching DVDs after going to bed. The DVDs were borrowed from our village hall, along with old magazines. In return she wishes to take her DVDs and magazines, including a collection of quilting magazines costing at least $10 each bough on Sunday shopping trips. I have prohibited this exchange even though she says she doesn't use them any more (she seems to have concluded that quilting is now beyond her abilities) except that yesterday she insisted on buying the latest quilting magazine at the newsagents. I want her to at least keep them to flip through. Also to sort them, as she was doing with other books and magazines this morning after she spent at least an hour sorting sugar tubes taken from coffee shops and tea bags which she prefers to see in plastic containers.

On Good Friday a cousin I had never met came for the afternoon. Then on Sunday our Blue Hills clan, the whole bunch of them, came for lunch at the Club. I forgot to take any photos of either gathering. Both visits were most enjoyable, except at the club she insisted on putting some dozen small pencils which she took from the Keno ticket holder on the table into her purse. Recently she bought several metal containers of coloured pencils and zipped bag into which all the pencils have now been placed so I was given the original containers to place in the garbage. She is yet to use the pencils on any of the adult colouring-in books she now has.

We now have a new fridge funded by her Level 4 Plan. One and a half shelves are filled with the boxes of Duodopa when we receive a new shipment. This will be more reliable than the 35 litre car fridge originally bought for the purpose. I had intended the new fridge to have door hinges on the left hand side but a right hand side hinged model was delivered and since this allows her more ready access from her wheel chair we kept it.

She is rejecting food that is too dry, lumpy, stringy, not swallowable, too thick. However, she really likes small containers of creme caramel for breakfast; I alternate them with various yogurts. She has pear juice with Benefiber morning and night and Sustagen for lunch regularly. I keep the cupboard stocked with chocolates for her but she is unable to eat any containing nuts or coconut. Along with frozen dinners many may say her diet is not balanced. She has no trouble eating mango or kiwi fruit so such are often added to evening meals.

She has been complaining about her poor vision while using her computer. Aided with a lot of duct tape, I have installed her MS Surface Pro, with a new 27" monitor and a new keyboard with 1" square keys on her over-the-bed table, although she has not yet used this rig in the bedroom yet.

I am sure she has difficulty learning new activities. For instance, she is unable to remember CNTRL-+ to make text larger on her screen so now that is written on a white label on the table. Her bedside lamp and several fans have been switched on and off by a remote control for several months now; the control having a row of buttons for turning ON individual devices and a parallel row to turn the same OFF, and there is a label attached indicating the switch functions, yet she continues to randomly push buttons and not learn which one is which. When in bed at night watching DVDs or NetFlix she usually wears sunglasses to not hurt her eyes.