Chapter 590 - In the Dark of Morning

 In those hours around 0400 when I fail to distract my mind from rehearsing what I will say should I ring the state PD Help Line, ring the neurologist, her GP and others, bold plans are made to just fade away with the greyness of dawn as the magpies begin to sing to one another. A sense of the benefit of actioning such plans linger with me yet the morning's tasks and complications causing me to wonder why I was so stressed that I needed to listen to Radio National, read a few chapters in a murder mystery or listen to mindfulness music or talks on Insight Timer to switch off enough to rescue a little sleep.

Much to my surprise, late morning Thursday this week (with Wild Dog Care services beginning at 0930 each day since I requested late starts) I tapped an email to her neurologist then rang his rooms near West Beer Hospital (he seems to service appointments on Thursdays) in a bout of enthusiasm. The answering service told me calls were not being answered and if this was an emergency etc etc. I hung up. Sometime later a caring person emailed me to say my email will be passed to the neurologist. Late Thursday or Friday evening our land line received 3 or 4 calls from a blocked number (the phone sounds one burst of ringing when a blocked number calls, which is annoying but gives me satisfaction that another bogus call has been denied access) and I guiltily wondered whether the caller may have been the neurologist. I have since read the manual to delete all stored blocked numbers. As yet there have been no nuisance calls, well, no calls of any sort. Below is the email I sent, suitably redacted.

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Dr [XXX],

We are having increasing problems with [YYY's] dyskinesia; both during day and night. Since we last spoke I increased the night rate by 0.1 to 2.7 but the day rate has been kept at 7.0. Transfers between bed, commode, wheel chair and turning [YYY] in bed are becoming more difficult for both of us  and in consequence we experience pain in our arms, even though we have slider boards, slide sheets, an adjustable bed and a SARA transporter.

Episodes of dyskinesia are stopped by laying her down on her bed, on either side or on her back; usually one position works but not another. A bolus dose or switching off the pump for up to 1/2 an hour has not been found effective. Dyskinesia causes [YYY] to sweat excessively and she is given Hydralyte tablets in 500ml of water to compensate. Stress and emotions trigger bouts of dyskinesia. For instance, last Monday we were visited for lunch by relatives and between 1100 and 1500 I had to lay [YYY] on one side or the other on her bed three times. Comments were made that sweat was dripping down Pam's face.

[YYY] has been using Exelon Patch 10 since 17th March. I have not noticed any changes in her condition.

[YYY's] stoma has an infection currently being treated with two Clindamycin 150mg capsules at 0800, 1200, 1600 and 2000 each day.

[YYY] is given Molaxole each morning and midday for her ongoing constipation problems. She experienced pains in the left hand side of her tummy last week.

[YYY's] GP Dr [ZZZ] has referred [YYY] to a local specialist after I expressed concern about [YYY's] rectal prolapse.

[YYY] was given a 'flu injection on 23rd March.

I need advice how to cope with a deteriorating situation. Should you think it advisable, I will transport [YYY] to West Beer for observation.

Thanks & regards,

Kilpike

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Now a blow-by-blow description of today's events up until 1400:

0330I woke to violent dyskinesia and light on. "All tied in knots" she said, bed in a mess." I want to go to the toilet." Onto the commode. To bathroom. Only did piddle.  Dyskinesia continued, wet flannel on face. Replaced her nighty, soaked with sweat. Hair stringy with sweat. Back to bedroom, feet up on my bed.

0355  Dyskinesia stopped while her feet on my bed, then began again.

0401  Dyskinesia continued, right leg hotter than left as usual

0405 Pull ups on legs while still on commode. Onto her bed rolled to raise pullups. Laying partially on RHS.

0413 Passive, sleepy, asked "My shoes still on?" as she often asks, not knowing whether her shoes are on or off. Poop left in commode pot, unknowingly done.

0418 I emptied the pot, returned to bed.

0635  Dyskinesia noises woke me, stopped by the time I set the pump for daytime of 7.0 from 2.7 and morning dose of 1.0

0700 No  dyskinesia .

0730 No  dyskinesia 

0745  Dyskinesia 

0750 Onto commode, to bathroom

0800 Onto pedal machine, 1x Molaxole 2x Clindamyk, 4x Hydralyte

0805 Replace cassette, replace batteries, pump back on

0825 Feet came free of pedals, to breakfast

0830 Empty commode pot of reasonable amount of small soft turds. On return with pot some small droppings in safety pot on floor beneath commode

0845 I went outside, heard her call out, she was choking on a piece of crumpet, thumped her between shoulders, she went limp, eyes rolled upwards, pushed her forwards over her legs up on recliner, pounded her back, she coughed and swallowed the problem.

After previous I placed her on her bed

0915 Asleep no  dyskinesia for about 5 minutes then mild  dyskinesia and stopped

0930 Mild  dyskinesia began as Wild Dog Carer arrived to shower her. She wanted a shower.. Pump off.

1010 Pump back on after shower. Bolus to compensate for pump being off during shower. Laid back in wheel chair but  dyskinesia continues.

1015 Return to bed dyskinesia continues laying on RHS, rolled her onto LHS

1020  Dyskinesia stops

1045 She rang the bell, her bra was too tight, removed it. Now on back without  dyskinesia. Dressed stoma. Eyes closed, asleep?

1050 She rang the bell, asked to be rolled onto LHS, needed a tissue to spit into.  Dyskinesia continues. Rubbed L leg, asked her to close eyes.

1100 No  dyskinesia . Have prepared a banana & peanut butter for lunch but will mix it when she wakes.

1150 Belled me to get up.  No dyskinesia .

1210 2x Clindamyk

1220 1x Molaxole

1235 To loo on sara for poop, needed to replace pullups

1250 Back at TV area, laid back in wheel chair feet up, need fan on

1300 No good, return to bed,  dyskinesia continued on RHS, rolled her onto LHS, rubbed her leg

1315  Dyskinesia stopped. She sleeps .....................................................

Chapter 589 - Things As They Are

Almost a month since I posted. Several times I put my feelings into words in my mind in preparation to typing here but those words, those emotions fled in the face of the thoughts of discomfort and pain reproduced in common words. On two nights, a week or two ago, I spent more time awake than asleep, attempting to position her in bed to stop the dyskinesias. I began transcribing one such night from my scribbled notes to send to the neurologist but I just could not finish and put it aside for a more convenient time which I doubt will never come.

A Telehealth appointment with her neurologist was planned to take place one afternoon about 1430; then we were called to say he was running late and would call later. About 2100 I was woken by the land line phone ringing, as I scrambled to grab it, one of my mobiles rang. Before I found it, it stopped and a message asked me to call back. I did not bother, at 9pm, half asleep, I was in no mood to speak to anyone. At about 1800 the following night he rang and from the conversation I only remember a suggestion to raise the Duodopa night flow rate by 0.1 at monthly intervals which may reduce day time dyskinesia. I raised it to 2.7. He also intended to send a script for Exelon 10, doubling the strength. Exelon 10 patch was used this morning in place of the Exelon 5 patch.

I watch her now, on an Echo Dot, beginning to wake after a "siesta"; I must go to her before stress arouses too much dyskinesia.

So I just took her to the toilet on the Sara then to her wheelchair, feet up watching a BritBox comedy while eating an ice cream. From time to time she grabs the LHS of her tummy, at the bottom of her rib cage. She has only just begun to admit she has pain there. Because of her irregularity and constipation, as evidenced by marbles rather than proper turds in the last few weeks I have been giving her a laxative powder at breakfast each day causing her to regularly produce turds a cat would be proud of. The Wild Dog nurse makes house calls and she has been coming to check on her stoma which has an infection that won't go away (another story, for which the GP has doubled the strength of an antibiotic). Last Tuesday I mentioned to the nurse that she had mentioned "pain" on her right side, "near my old appendicitis scar". The nurse pulled out her stethoscope, listening on each side of her tummy for gurgling sounds. The RHS was OK but the LHS produced less sound, and that could be indicative of constipation and/or "blockage". Another laxative was suggested at lunch time. On the following day  quite a quantity of excrement (putting it politely) was produced. Since then much less dyskinesia has occurred, although that may be coincidental, but I wonder whether bowel activities and the dyskinesia may be linked (you know me, I look for patterns and associations).

Another issue has caused me concern, her anal prolapse. This often causes her to remain on the loo longer than she should, saying "I can feel it there about to drop". I sometimes peer behind her while she is seated  on the loo and tell her it's only the prolapse giving her the "feeling". I once took a photo to show a doctor (I think I did, I'm sure of it) but he was not impressed by the "size". She now has a new commode (another story to be ignored) so yesterday after removing the pan I took a photo of the prolapse to show to her GP later at an appointment for only me later in the day. The doctor wants to see her to refer her to a specialist for "comments and planning". This afternoon she has begun holding her tummy, saying "it grabs me". When I ask how long this problem has existed she implies for quite awhile. "Why haven't you told me before?" She replied "You would only take me to the doctor". And I will, an appointment has been made for 1615 on Monday. Earlier times were available but because our son and his better half are visiting for lunch on Monday, bringing her two sisters with them (one widowed 2 weeks ago) I opted to take a later appointment, made on line most conveniently.

As I bent over her as she woke this morning at 0730, I said "I love you", she smiled a little and mouthed the words back to me.