Chapter 441 - Cruelty

That's all it is, cruelty. Usually brief visits lasting no more than 15 minutes to see the neuro and about 1/2 hour visits to a PD Clinic in an alternating 3 monthly cycle, giving directions to increase Duodopa flow rates based on quick observations of a patient prone to stress symptoms, who does not vocalise her concerns very well to authority figures, after a 2 1/2 drive mostly in traffic. Comments at Clinic that the clinic is meant to be "quick in and out" followed by "a note will be made to give you a follow-up call" which only ever occurred  twice in 18 months (as far as I can remember). I mentioned some posts ago that we had been directed to increase the Duodopa flow rate by 0.2ml/hr per fortnight. My notes indicate that from 30th November when the Duodopa daily flow was increased from 5.4 to 5.6 I began noting that she experienced breathing difficulties, usually resulting in her asking her breathing exerciser machine, at least daily, mostly more frequently resulting in "minor" panic attacks (irrational, excessive sweating, glassy eyed, unable to decide on a comfortable position for body and legs, frequent requests for the toilet). Prior to the end of November I made occasional notes about "breathing difficulties", perhaps once every few days, even less as the dose rate approached 5.0. Which reminds me that the flow rate was about 4.7 when neuro Dr F saw her dyskinetic legs and asked for the flow rate to be increased in mid last year I think (I must track back these changes). Anyway, on December 9th I emailed the Clinic advising of my action to reduce the flow rate and 4 days later received a reply "Thanks for the update".

A new symptom when she has panic problems is for her to need tissues to spit into because she has some much gather in her mouth, or perhaps of a thickness, she is unable to swallow it.

Panic attacks and interrupted sleep have knocked the crap out of me. What happened to the respite?

By Monday 12th I was wearing out, queried the chemist about sedatives for panic attacks, and although sympathetic, he asked me to get a prescription from our GP. He prescribed Kalma (I'm sure she took these routinely years ago). One Kalma (Alprazolam 250mcg) given as panic begins calms her within 20 minutes, dyskinesia included. That's great but I can't keep feeding her that. So on Friday 16th December, after being awake for "awhile" at 0330, I decided that come Saturday, her Duodopa flow rate would be set to 5.0. So yesterday was much better than the last week or two; we went shopping, at no time was she distressed, no Kalma was needed. We went shopping at Target, no rush, no stress. Today has begun well with exercise at her standing frame, pedals and vibrator. Unfortunately, muddled with panic issues has been bowel motion problems, the urge to go without going. Although I am giving her only two Laxative with Senna tablets at breakfast (not two twice a day as prescribed) I have increased the Movicol to two sachets per day; she has been seated on the loo with gastric after restraining herself not to go too soon; I just helped her onto the wheel chair.

A few days ago our GP gave her a B12 injection that was due some weeks ago and prescribed a booster series of injection over the next 3 weeks. A routine visit to the optometrist found her eye pressures remained high at 20 and the optometrist will consult with the specialist. A gel was prescribed  for her eyes at bed time because the spray TearsAgain is insufficient to keep her eyes lubricated. And of course, a new set of glasses and frames, which gives me the satisfaction of another claim on our private medical fund, even if we pay the majority of the cost.

A friendly call from Wild Dog Care on Friday suggested increasing each morning service (when she is showered and dressed) by at least 15 minutes because the staff are finding the work they do takes in total longer than 30 minutes. As an example, selecting outer clothes for her to wear takes considerable time it seems. I am rather relaxed about this; if the work can't be completed in time, and it needs to be done, then it's fair that we pay more. The 30 seconds or so to choose clothes came about because it was my task (also underwear) to choose but she sometimes complained about my choices in colour and whatever, so Wild Dog ladies began helping her choose her own. Anyway, yesterday morning I placed a large clock radio near my desk diary on the kitchen bench top, telling each Wild Dog carer, morning and evening, that I'm recording their arrival and departure times and why. The three so far declared that the job only needs 30 minutes. Although I will continue my time logging through the coming week, an email tomorrow morning will explain why I renege on my agreement until the end of the coming week.

A speaker at our local PD group Xmas lunch mentioned the holistic support services provided by another hospital clinic in Big Smoke and it's not necessary to change one's neurologist to take advantage of their services of OT, Physio, Speech Pathologist, Dietician, Counsellor and PD Nurse Specialist. I understand this is a special group focused on PD patients. This is a 9AM to 3PM consultation so will mean another long stressful day fortunately with a Wild Dog driver. Being as pedantic as ever, I must prepare a long list of our current activities, diet and the like before hand to make most use of our visit in mid-January.

Stop Press: Half an hour ago, her legs badly dyskinetic, sweaty, stomach churned she asked to lay down. So I placed her on her bed with the Sara Stedy. Her breathing was difficult, needed her breathing machine, a drink of water, two fans blowing on her and a wet washer. After 15 minutes I returned to give her a Kalma when there was no improvement in her condition.

Stop Stop Press: 15 minutes later she sleeps, and no dyskinesia of course.

Chapter 440 - Panic

As last week tediously progressed she began using her ball machine (the gadget to encourage deep breathing, may be called a simple "spirometer") more frequently, often exclaiming "I can't breathe". Occasionally I recorded her use of it, mostly not. And I'm mostly not in her presence to see it used.

Thursday was an uncomfortable day for her; we attended the Xmas lunch for our PD group. Before leaving home she had stomach pains but sitting on the loo produce very little and that not loose. We rushed away from near the end of the meal, called at the chemist's for the new order of Duodopa and as usual, she needed the loo immediately we were home, only doing a small pebble. Having spoken to our Dr last Wednesday (he said no more than half an hour seated on the loo), I moved her off the loo onto the commode which is a bit more comfortable. After some short time there she wanted to lay down She said she had done no poo. As I transferred her from commode to Sara Stedy, I saw an enormous stool in in the commode pan so I again asked her whether she had passed anything. No she had not. She was surprised when I showed her. She experienced no sensation in passing it or an easing of the urge to defecate, the need to "go" remained. Because the object was black in colour I took pictures of it to show the doctor; she now has an appointment on Monday. I later realised she had been eating licorice a few days previously. Just now, on Sunday, she needed help with the bidet (it had been switched off) after she had again passed a large quantity but it was brown. Dr I. had given me a script for her for a "Laxative with Senna", two tablets twice a day which seems to impacting her sense of urgency.

Thursday wore on to become the worst she has been in a long time. Unable to get comfortable I moved her between wheel chair and commode, attempted to transfer herself but failed, seems to fear transfers by the Sara Stedy, was unable to eat much of the evening meal, had "cramps" around her middle. After the Wild Dog carer put her to bed we both slept till near 11PM. I reduced the Duodopa flow rate down to 2.9 ml/hr. Then began some hours of horror. Glassy eyed, demanding, irrational, she asked to be moved from bed to commode, feet raised or lowered, to loo on Sara Stedy, frequent use of the ball machine, leg dydkinesias almost constant, sometimes with fine rapid movements. She wanted more medication so a bolus was given. I tried a couple of crushed Panamax in water to calm her; doing so may be effective so I have done so several times now. Sometime around 3AM Friday we both went to sleep. On waking at 6AM to begin this cycle once more I thought that her behaviour may be symptomatic of over dosing; neuro Dr C. had said to drop back by O.2 ml/hr should her upper body become dyskinetic so instead of setting the pump to 5.6 as the day rate I set it to 5.4. Being a dutiful client carer I sent an email to the PD Clinic at West Beer, Friday night almost became a bearable repeat of the previous night but we went to sleep around midnight.

Saturday was a much better day, much of it at respite at Wild Dog. She ate very little for her evening meal. Breathlessness  needing the ball machine was much less frequent.

This blog is experiencing a large number of hits in bursts of around 30, strange in that the plot is a  display of almost constant spikes. Machine like perhaps? A shame I don't accept comments.

I'm so tired just now I'm off to have a snooze.

Chapter 439 - Respite or Holiday

Last Tuesday I dropped her off at Wild Dog's day respite unit then motored down to the coast at Blow Hole. Wild Dog had booked wheel chair accessible taxis to take her to and from home each day until I returned on Thursday to collect her. A Wild Dog carer attended to her regular toiletry and dressing each day as well as handover to/from nurses contracted from Grass Ridge. Since Wild Dog staff are unqualified to handle the Duodopa pump, registered nurses were required. They stayed overnight and prepared meals for her as well. The nurses, having read all the notes and instructions about handling the pump, noted that the day time pump flow rate was scheduled to increase from 5.4 to 5.6 ml/hr on the Wednesday even though I had not made mention of it in my notes, intending to do it myself a day later on Thursday. She was very happy about the care she received. Neither of us will be apprehensive about "at home" respite in the future. Only one minor issue happened; I found the partially used Duodopa cassettes were left on the kitchen sink, no problem with that, except the tube on one cassette had not been clamped and a red sealing cap was not screwed on the end of the tube. In consequence the whitish liquid had oozed onto the stainless steel surface but no where that would stain..

Just like a holiday, the benefits of respite quickly disappear. Yesterday was hot; we were unable to go shopping early because she had the sensations that she need a bowel motion, spending almost two hours seated on the loo. Then we went shopping, which went well because I pushed her around in supermarket coolness, each of us with a basket. During the afternoon she was in a bad way; breathing difficulties needed the ball machine and prevented her laying on her bed, bad dyskinesias in her legs, tingling at the top of her head and nose (perhaps due to a bolus dose intended to ease dyskinesias), propped her up on a lounge recliner and we both dozed, on waking needed the loo urgently and remained there for over two hours. The Wild Dog carer at 7PM warned her that sitting there for so long was not good for her, suggested no more than 1/2 an hour. Her motions are soft, just slow to come and a sense of completeness does not happen.

On Sunday 13th November I wrote in my notebook "? minimal dyskinesias today? why?" The FitBit around her right ankle recorded three spikes of approximately 275, 360 and 380 steps at approximately 0730, 1730 and 2130. The total Fit Bit steps on 4 days were 11th Nov 9,397, 12th Nov 31,976, 13th Nov 2,170, and 14th Nov 29,334. On most days there will be  groups of up to 10 spikes of 1500+ steps in an hour or so. So what was "good" on that Sunday? I have no idea. I tend to record the negative events that happen to her; the good events are simply normal living. And the only bad thing on that day was a note I made "0950 Without glasses on feels sick, goose bumps." Exactly what a "step" means in her context, seated in a wheel chair, never taking real steps, I don't know other than a sort of objective measure of the amount her right leg kicks and shakes.

Recently she realised there were mistakes in the patchwork she labours with, so she has largely un-picked the whole thing. I saw nothing terribly wrong with what she had done; today she began reassembly. Yesterday she found a poorly sewn hem on the slacks she had on, so using a small pair of scissors she began trimming. I noticed this morning when I hung the slacks on the line after washing them with other clothes that the folded length forming the hem for some 150mm on one leg was missing, leaving a large hole. She says she can fix it.