Chapter 596 - Dyskinesia and Other Motions

Written Sunday 16th May

On Friday I discovered that on replacing the Duodopa cassette it was marked "Thur D" meaning "Thursday Day" meaning I had failed to replace the cassette on Thursday night! there was a very small amount of white fluid left so it hadn't quite run out; I calculated that about 99mls had been used. So it was empty. I mark the cassettes so that I know when they were replaced because I confess that I sometimes forget.  During Friday her dyskinesia was almost constant. Before breakfast she passed several balls of poop, after breakfast what I call a "cat turd" indicating its size then no more for the remainder of the day. After denying that she still had tummy pains she admitted that there was an ache on her left side. Having not received any requests to visit the doctor since last week's ultrasound of her stomach, I rang the surgery on Friday to learn that the doctor had marked her file "Normal, no further action",  Apart from the constipation says I. She had itchy sore eyes this same morning for which Optifresh and Tears Again were applied, she put on sunglasses and I closed the curtains. I attached the new FitBit to her right ankle to monitor the dyskinesia. Friday evening she went to bed at 1900, the dyskinesia ceasing as soon as she lay down, began again and faded away when I turned her onto her right hand side.

On Saturday (yesterday) she passed two small pebbles before breakfast, but a short time before the Wild Dog carer arrived to shower her she passed an enormous turd, followed by soft and runny stuff. Several mounds of soft poop were passed later, suggesting that there had been a blockage, hopefully now cleared. No further motions later in the day. Interestingly her day was almost completely dyskinesia free. When I changed from night rate to day rate in the morning I discovered the Morning Dose was locked out, suggesting that during the night she had rested her elbow or some such on the button, activating it. The lock out lasts for about 20 hours and I attempted to initiate a morning dose at times during the day and evening without success, suggesting it was inadvertently activated in the early hours of the morning. The function worked this morning. Last night I discovered that I had not replaced the Exelon 10 patch since 1000 on Thursday so I replaced it at 2015 (I place tape over the patch and write the replacement day and time on it, to hold the patch in place during sweating and showers). How the hell do I expect to get a feel for the causes of the dyskinesia when I keep making such careless errors?

A beautiful clear blue sky with freezing wind day here today, Sunday, so I talked her into walking around to the local restaurant, she in her wheel chair, for lunch, leaving about 1130 and returning about 1430. Her dyskinesias began as soon as we exited our front door and have continued beyond placing her on the loo and then onto the commode (for comfort) although she didn't poop. She now has her feet up watching "Rev" on BritBox. As we arrived at the restaurant people began yelling at me; then a bloke ran up to say she was dragging her left foot on the ground; she actually wasn't although from a distance it may have looked that way. On the way home, on the short street to our village, I need to walk on the roadway because there is no path, a car coming towards us slowed to a crawl and then stopped for us to pass, even though there was sufficient room. Such considerate people simply make the two of us feel abnormal and aggravate her dyskinesia, which hadn't stopped at all during during our outing, except perhaps when she began nodding off just before we left. We sit outside so that she does not feel on show and can readily rest her feet on my lap.

Continued Wednesday 19th May, the following was emailed to a counsellor on 17th May

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What was thought to be infection of [her] Duodopa stoma and treated with ineffective anti-biotics by a GP at a surgery in [town] is not correct and a GP at another surgery prescribed ointments then when [clinic person] at [West Beer] became involved a script for Benacomb was supplied and has been used for two weeks now and the inflammation has reduced.

A referral to Dr at the [Town] Medical Clinic concerning [her] anal prolapse was provided by a GP at a [town]  surgery after showing her a photo of the condition. The appointment made has been postponed until 31st May 2021 due to Dr's temporary absence. I am concerned that Dr may decide to perform a colonoscopy on [her]. I doubt I could cope with the preparation procedures for [her] to have a colonoscopy, having personally experienced the procedure myself. Also advice would be needed on Duodopa usage during all aspects of a colonoscopy procedure,

Until I attended a recent webinar about continence I had not realised that [she] suffered severe constipation. For quite some time Pam's stools have been a collection of loose or sometimes compacted small firm balls that rolled on the bathroom floor if the pan was not in [her] commode/shower chair. She has been taking Benefiber for fibre bulk in fruit juice regularly and irregularly laxative Movicol or Molaxcole, although the latter is given every morning now. Attempts are made to encourage greater fluid intake, especially when [her]leg dyskinesia causes excessive sweating. Each morning [she] has four Hydralyte tables in about 700ml of water to compensate for the sweating.

[Her] leg dyskinesia may continue for hours. Charts from a FitBit device on her right ankle have been shown to others, showing that there is a tendency  for dyskinesia to occur from early afternoon, although any stress will initiate the problem at any time. I have found neither halting the Duodopa pump for say half an hour or giving a bolus dose has any effect on her dyskinesia. I have found that laying [her] on her bed may stop the dyskinesia and usually she needs to lay on her right side for cessation to occur, and less often when on her back or left side. Sometimes cessation is immediate but usually I need to stroke her leg with both hands to gradually reduce the frequency and amplitude of the dyskinesia and ask her to keep her eyes closed and to relax. I suspect medical professionals think my results at stopping [her] sessions of dyskinesia are imaginary. Occasionally my efforts fail and the dyskinesia continues until she falls asleep exhausted. Quite often her legs "kick" for bursts of several minutes so much at say 0200 or 0300 that her "hospital" type bed rattles and wakes me, although she remains asleep and sometimes I turn her, without waking her, to stop the dyskinesia.

Some weeks ago when getting [her] out of the car on a slider board onto her wheelchair she began to fall so I had to lower her as gently as possible onto the garage floor. Some scratches and bruising on [her] legs occurred. I made the decision to only transport [her] on a wheel chair adapted taxi in the future. This will prevent appointments in Sydney for [her] because there is only one provider in [town] capable of day trips out of town and only maybe on one particular day of a week and then only for bookings well in advance. Funding is not an issue since that would come out of [her] Level 4 package even though the cost is about $800 as it was with Wild Dog Care in a conventional car.

[Her] cognitive decline has become much more obvious. [She] got on quite well with a particular carer from [Wild Dog] Care. The carer had frequently showered and dressed [her] of a morning as well as changing [her] and putting her to bed of an evening. In addition this same carer had frequently stayed with [her] for 3 hour respite periods I have on most Friday afternoons. This particular carer resigned from Wild Dog Care last week and when [she] was told, she had no idea who that carer was. [She] is no longer able to crochet or knit (thread becomes a collection of knots) or sew in any way at all. She has OCD problems finding and cleaning marks on floors, cupboards, etc.

[She] has been unable to stand independently or walk for a number of years, initially due to her left foot "drop" so is permanently wheel chair bound.

I am asking our financial advisors for advice as to how to finance Residential Care for either or both of us, after having discussed the details with a Wild Dog Care consultant 2 weeks ago.

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Finished Wednesday 19th May

She says she has had no stomach pains in the last few days. Her bowel motions are more "fluid", hopefully eliminating any blockage on the left hand side where the nurse detected less gurgling than expected some weeks ago. This presents other problems of course; for instance, the sequence of events from getting her up onto the commode is to take her into the bathroom where the overnight incontinence pants and pad are removed, often with a squashed turd in situ, then still seated on the commode, I take her into the lounge room where the pedal machine is mounted on a board. The commode is positioned that she can easily move her legs while her feet are held within an old pair of male slippers glued to the pedals and in the case of her left foot (the "bad" one), elastic tape is used to keep the foot in the left slipper. The pedal machine remote control is held by a loop of cotton tape to one arm of the commode. Because she recently tore off the remote control labelling (she often tears labels of clothing and equipment), we only know the function of one button, START/STOP. The rhythmical movement when pedalling (passively) encourages bowel movements. While she drinks Molaxole laxative powder in a small quantity of water and four Hydralyte tablets in about 700ml of water I prepare her breakfast of a small tub of diced fruit, a baby drink bottle of fruit juice with two heaped spoonsful of Benefiber, a plate of NutriGrain, a slice of toasted bread and melted cheese. Then I move her from the pedals before I transfer her using the Sara Stedy from the commode onto her wheel chair where she sits bare bottomed on a "bluey" disposable sheet while she eats breakfast. On finishing breakfast I transfer her back to the commode where her stoma is cleaned and "toe guards" are taped over her toes to prevent skin damage should dyskinesia occur while she is seated on the commode in the shower and then the first action in dressing her after a shower is to dry her toes and replace the toe guards with socks. Now her more fluid bowel motions result in some bowel action on each physical transfer and into the pot in the commode, and during showering this morning, quite a number of small soft turds fell onto the tiles around the drain whole. The Wild Dog carer helping her shower this morning was cautioning her about female hygiene to avoid UTI's. To date she has not suffered UTI's even though she wears incontinence pants and pads 24x7. The procedures described in this paragraph begin by 0630 and complete by 1000 when the Wild Dog carer leaves after  having showered and dressed her.

Yesterday I had a long discussion with a financial advisor about planning for Residential Care for one or both of us. Please note that such care is not imminent, rather a matter of determining the best approach to financing such care if and when needed. Just one step in what I may have called, in another lifetime, Potential Problem Analysis, and as I said to the advisor yesterday, this will help me sleep at night. Although the advisor was willing to jump straight into the task, she said her "diary was full until July" so I said since Residential Care was not an immediate need then I was quite prepared to wait. Perhaps the cost of this planning may be wasted and Residential Care not needed. One can hope.

Now I need to sit in the sunshine and unwind.