Chapter 593 - Unplanned Developments

On the 15th of April I sent an email with the following contents to the distributor of Duodopa and pump because at the end of last year it had been arranged for them to do nurse home visits to our country town rather than we travel to Big Smoke for a day for 15 minutes of connector maintenance. I assumed incorrectly that the distributor was now the place to answer appropriate questions.

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Support,

My wife [ X] has been on Duodopa for a number of years without experiencing any stoma problems and until the end of 2020 attended West Beer clinics for maintenance of the fittings. CB paid [X ] a home visit on 15th December  2020 to replace the fittings. At that time CB commented that the stoma area was slightly red.

[X]'s Level 4 Package is managed by Wild Dog. On 13th January 2021 I asked Wild Dog for one of their nurses to visit [X] to check her stoma which was more inflamed and producing discharge and of concern to me. A swab was taken and sent to [Pathologist]. On Tuesday 19th January [X] saw her GP Dr [J] who prescribed Erythromycin 1 capsule twice daily. After no improvement, Clindamycin 1 capsule 4 times daily was prescribed from 2nd February. Another swab was taken before Clindamycin 2 capsules 4 times daily was prescribed from 15 March. After another swab of the stoma was taken,  Alphaclav Duo Forte 875/125 1 capsule twice daily was prescribed on 7 April, seeming to reduce the inflammation around the stoma by the time the course was finished on Sunday 11th April.

Inflammation has increased again (along with discharge) so I have made another appointment for [X] to see Dr [J] again tomorrow.

[X]'s stoma is loosely dressed by a 7.5x7.5 cm sterile gauze pad at all times except when she is showered each morning. I change the dressing twice each day, after showering and on going to bed. Before the dressing is applied a piece of sterile gauze pad is moistened with sterile saline solution to wipe away discharge then dabbed dry with another piece of sterile gauze.

Any suggestions as to how I should care for [X]'s stoma will be most welcome. 

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The appointment, mentioned just above, to see Dr [J] resulted in another script for the previous antibiotic. While we were in the waiting room, a woman stared at us and asked "What is she on?" and similar questions while her legs did the usual dyskinetics in the usual stressful situation. No wonder she has become sensitive to her condition.

A copy of the above email was sent to a nurse member of the family who expressed doubts on the 17th whether the stoma was actually infected and had instead suffered "trauma" as in "pulling". Well yes, from time to time there has been tugging and taut tubing in the years the pump has been in use,

Last Sunday 18th April our progress encountered an abrupt change. I had discovered that the doctor's surgery, where we were to have our COVID injections on Tuesday 20th, was open on Saturday and Sunday mornings, I rang to make an appointment only to be told that it was a "walk-in" system for those two mornings and we were welcome to attend and so far only one person had walked in. So off we went in the car to park in the disabled slot at the front door. A short wait before the doctor saw us. I had the empty boxes from the antibiotic scripts she has been prescribed since January. His professionalism prevented him speaking what was evident on his face. I showed him images of her stoma. He peeked beneath the stoma dressing, didn't believe it was an infection and prescribed an ointment Elocon Alcohol Free Cream 0.1% to be wiped onto the inflamed areas surrounding the stoma and then to cover the same area with vaseline. He inferred the antibiotic be discontinued. We were charged for a "long" appointment, this not being a bulk billing establishment.

On the way home we stopped at the drive-thru for fish and chips. In our garage getting her out of the car became an accident scene; she has had increasing difficulty aiding with sliding her bottom across the slider board, which slid itself until its inner end slid off the car seat. I failed to rescue the situation and had to gradually lower her onto the concrete floor. From there I used a low trolley to move her into the living area, then raise her by means of a bean bag back into the wheel chair. In the process she bruised and scratched her legs. Yes I know I should have called the Ambulance but I didn't want her left on the concrete floor until help arrived. This event and a difficulties experienced at home and down the street has made me decide to avoid taking her in the car any more  but to rely on the two wheel-chair friendly taxis in town.

Early on the morning of 19th April I was called by the Nurse Consultant at West Beer, firstly enquiring whether we had "discharged" West Beer and for clarification about the stoma. Some images were asked for and sent. Her reply  was to continue with the Elocon Cream and to update her with photos in 2 weeks. However on the 22nd I sent her an email with an image showing that the "inflamed" area around the stoma had increased. She suggested ceasing the Elocon Cream and followed up with another message saying a script for Kenacomb ointment had been sent by "express post". Express Post is supposed to be next "business day" delivery but in these COVID times and since we live several hundred k's down the 4 lane, delivery will blow out to at least tomorrow, Monday. A FAX to our chemist may have been better. Meanwhile, I am washing the stoma area with warm soapy water, and this morning, what seemed to be a bloody mess was perhaps less inflammation once washed (prior to her shower 1 1/2 hours later).

During our brief phone conversation, the Nurse Consultant suggested I consider placing her into care.

While chatting to the clinical psychologist early in the month I committed to contacting the state PD support group to seek a Zoom appointment with a counsellor to discuss my concerns/problems. I spoke to a PD nurse with whom I had had previous contact and an appointment was made. Coincidently, the PD nurse and the counsellor were both involved in a Zoom presentation some days later about PD progression (reminds me of the title of a blog). Anyway, I waffled to the counsellor last Thursday and have another appointment next Wednesday.

In the midst of all the above I decided to have a meeting with a Wild Dog Care representative to discuss the gory details of admission into residential care and that happens next Tuesday over at their facility while one of their staff provide care for her while at the same time cleaning our house.

Last Tuesday we had our COVID injections while at the same time have a wheel-chair friendly cab take us there and back. I enjoyed not having to look for a parking spot and avoidance of stress. We both experienced 37C temperatures 24 hours later.

Chapter 592 - Committed

 During my regular chat with my helpful clinical psychologist last Wednesday I committed to calling our state PD group on Friday for an appointment to speak to their counsellor. Naturally, by Friday morning I was feeling much brighter (although that was to change) and without having told someone I am sure my procrastination bias would have had me postpone my perceived need. As it was, I chatted with the PD nurse with whom I have spoken on other occasions and felt better for it. They will call this coming week to make a Zoom appointment time, which is sure to clash with our local Carers' Group Zoom meeting at 1400 on Thursday (I don't intend to be at the physical meeting  on Wednesday when the geriatrician, who she refuses to see now, will speak) or a MUST ATTEND zoom meeting "Coming to terms with Parkinson's Disease Progression" from our state PD group.

Looking back at my 5 A5 pages of notes for Friday reminds me I had helped her back to bed after breakfast before the carer from Wild Dog arrived. I was prepared to shower her later in the morning but she decided to have the carer do it once she woke. I was pleased she decided that because it really was  a two man job. Shortly after 1000 she asked to return to bed where she remained until about 1200; during this period I rang the state PD group. I also rang our local optometrist to postpone the appointment I had made for that afternoon during my 3 hour respite period. So I visited the local library to set up new accounts so that I can use online audio books from there rather than buying them for her from Kobo and on the way back home I popped into the garden centre to buy another pot for one of her succulents. I returned home to find her wanting to return to bed. Then I gave the carer an early mark from looking after her.

I took her to the doctor on Tuesday 6th April because her stoma was not looking any better after finishing the last course of antibiotics. Amoxicillin was prescribed and commenced the following day. That course finishes to day and I tell myself the stoma looks slightly better.

This is enough, I am not up to writing any more.

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.