Chapter 591 - Do I Need to Write This?

 I wrote the chapter title yesterday morning then despaired of writing any more. Once I came out here each (well most) Sunday mornings to jot down what had happened on our PD journey. But these days I am in a fog, depressed I suppose, with no desire to relive our problems. Yet I need to record our progression; doing so gives me a sense of control, I'm in charge of our shit existence, not knowing how to extricate us from the mire.

Well meaning intentions suggest a) I am isolated needing an external activity to what purpose I don't know; b) I need to find myself "me time" so does 3 hours count on a Friday afternoon attending appointments for myself, visiting chemists for scripts etc, buying odd items, a take away coffee consumed down by the river; c) planning what will happen when I am "not around" which is much the same as formal End of Life Planning if that is the correct title which can be accomplished on government and carer websites to which I often respond with "Have you done yours?" since the odds of having a lethal road accident are greater than me dropping dead even though I'm at my Use By Date in this country of ours.

I don't want external interests; I have sufficient to keep me occupied at home only I need the time to do them. 

Me Time comes at the expense of Her Time which I would accept if there were affordable care options for someone in her condition even when she has the maximum benefits of a Level 4 Package and she could be provided with a full time personal carer, "trained" in the use of the Duodopa pump and permitted by OHS regulations to lift and position her for trips to the toilet (sorry that requires two persons). Such blows the budget. People advise me to seek respite; I gave up trying both formally and informally; it's not as easy and simple as you think. Although I am sure respite can be found easily if one's partner is frail aged with reasonable mobility but not cognitively challenged, wheel chair bound, unable to stand alone let alone walk, has a pump feeding medication into her intestines 24x7, has a stoma infection currently, is incontinent both bladder and bowel, and has anal prolapse.

Formal planning efforts have been made although I need to revisit the efforts and if I remember correctly one version needs a doctor's signature after a discussion. And she needs such planning efforts as well. I wonder whether any of the three individuals who died suddenly in the past few months that I knew  had prepared their plans.

It is now 1155. The above was typed earlier this morning, in between other activities that began at 0600. I am somewhat weary and out of sync after that yuppie directive called Daylight Saving ceased yesterday. One is tempted to relocate to Cane Toad Country to avoid the stress of Daylight Saving. So this morning I have changed her pump settings, replaced the cassette, emptied her commode pan twice, put her on her pedal machine, gave her a laxative in water, gave her Hydralyte tablets in water to compensate for her sweating, prepared her breakfast (of Nutrigrain since she choked on crumpets last week), diced fruit, fruit juice with Benefiber (the spelling indicates a Yank product), cleaned her stoma before her shower by the Wild Dog Carer who arrived as scheduled at 0930 after which a bout of dyskinesia caused her to want to return to bed ( a spot of cleaning was needed as we returned her to bed), cleaned and dressed her stoma after getting her up at 1100, dressed her in street clothes, hung two loads of washing done during the above, ordered her next shipment of Duodopa. And now it's lunch time.

I was sent this link a few days ago

https://charconeurotech.com/waiting-list/

After reading the material I replied with the following

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I just got around to having a good read about this CUE device. Most interesting. I registered my interest on the site, even though there is no mention of the device being of benefit for dyskinesia.

In our case there is something "strange" about the dyskinesia [she] suffers. Of course being a "researcher" for one patient I have no idea how relevant her symptoms are to other PD sufferers, other than the neurologist having heard of point 3.

1. It tends to regularly occur during early afternoon (siesta time)

2. It can be initiated by emotion and stress

3. It can be minimised/stopped by laying down

4. Laying position, left or right side or back may stop it

5. it can be reduced/stopped by gentle slow regular rubbing of either leg

6. Tends to only occur in the legs.

7. Book readings may have a beneficial impact (see below).

8. Hydralyte seemed to minimise dyskinesia when I first began giving it to her regularly.

Yesterday morning I downloaded an audio book for her entertainment because sometimes she is unable to focus her eyes, paper books tend to be heavy and hard to hold, and ebooks have buttons etc which tend to be bumped and watching TV becomes monotonous for her. All of yesterday she suffered NO dyskinesia, except just prior to going to bed when she became stressed as she began sorting boxes again in her sewing room. Once in bed she continued listening to the book reading and dyskinesia did not occur. Audio books may only alleviate dyskinesia while remaining a novelty, similar to hydralyte. I subscribed her to Kobo on her own phone and the first audio book is "free" and $12.99 after that. The audio book I selected was about $38 bought as a standalone item; there are some much cheaper or free which I expect to be short and rubbish.

Of course the more I ensure she does not stress then the less dyskinesia she may suffer. And some mushroom hugging people would associate the benefit of leg rubbing to "energy flows". 

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Now's time for lunch.