Chapter 431 - Progress or Not?

Monday afternoon we left for West Beer, pausing for junk food  on the way so we arrived at dusk when the hospital car parks were not overflowing. Parking in the drop-off area at the front, I rushed into the security office to collect the key to the accommodation block and a parking permit for the car. I asked the security bloke for directions; "Turn left, then left, then left" he replied. I tried that, became entangled in the Children's Hospital complex then lost in side streets. Now very dark, a little drizzle, I relied on the GPS to get us back to hospital then wound around one car park before recognising the far rear corner of the hospital where there is a card key access that I have used, then into an adjacent car park where according to instructions where I was allowed to park. Then it was a matter of getting her into the wheelchair and pushing her at least 300 metres along temporary walk ways to the hospital accommodation building. All this because the area is a construction zone for a new car park!! Supposedly there were to be two disabled parking slots at the front of the accommodation I could choose from but there were already 4 cars there. Then I returned to the car for our large wheeled suitcase and sundry other stuff.As always, our room was at the front, the disabled toilet/shower room at the rear down the long corridor. We must have both deteriorated physically since last there because I decided after some thought that I dare not attempt to shower her without a shower chair or commode, not that there was room for such, and no transfer device such as our Sara Stedy. So she was not showered until we returned home on Wednesday. Someone I mentioned this to replied "Well, we take too many showers anyway!" Yes but most of us don't wear incontinence pants and pads 24 hours each day, ideal environment for infections.

Her Tuesday appointment to see the Neuro was not until 2 PM so we spent the morning in the hospital cafeteria where we were visited by family. Then across the road to the Neuro's rooms around 1:30 PM. Only a couple of people in the waiting room. I was almost cheerful. Then the waiting room, about twice the size of a MacDonald's disabled toilet room, filled, then almost emptied, then filled ... The receptionist began telling new comers that Dr was running about an hour late. Sometime after 4 PM our turn came, but no more than 15 minutes if that much because he excused himself on our entry (we must have a urinary urgency impact on him) and when he returned she was unable to tell him her condition, so after making a few comments myself I handed him my 2 pages of notes (several more points were added after I posted on this blog last week) which he speed read. He advised us to not continue with physio and the cast on her left leg and suggested running the Duodopa pump overnight at a rate of 0.1 ml/Hr, increasing by 0.1 ml/hr each month until attending another clinic in November and to continue with the Sinemet CR at 2200 (all of which I wrote in my notebook). He was unaware she was to attend a clinic the following day.

On Wednesday we were in the clinic waiting room at 0830. She wanted some breakfast; there was a small canteen down one of the passages, I forget what I bought for her. She needed the loo. On a previous visit we had discovered a reasonable disabled loo attached to the waiting room. We waited until someone exited. While we were in there at 9 AM several people knocked on the door, I was becoming irate. Out of there we were called by the neuro to whom I had given the stick of video clips of her dyskinesias on our last clinic. I got the impression he had looked at all of them. He examined her, mostly her eye and hand movements and asked questions. I gave him a duplicate copy of my 2 pages of comments which he read slowly, asking questions.He then left the room to consult with peers (they always do this). The Dr H. and the clinic nurse came in. A note will be sent to our GP asking him to arrange a sleep test and to investigate the lack of anal sensations and urgency feelings. Also the Duodopa pump was to be run overnight at 1.0 ml/Hr between 2200 and 0600. Apparently I misheard Dr F's instructions about 0.1 ml/Hr. Also the morning dose was to be reduced from 14ml to 9 ml.  and the daily rate is to be 5 ml/Hr. I don't remember comments being made about the Sinemet CR at 2200. It seems someone mistakenly made an appointment for the clinic the day following the appointment with Dr F., these appointments should alternate in a 3 monthly cycle. And we spent too long in the clinic, meant to be an "In and Out" affair; more like an appointment in Dr F's rooms? I shouldn't really say that; from our viewpoint he is a very good neuro. Which reminds me; the neuro that spent so much time with us comes from that "crime-filled" country so beloved by that idiot named Trump. A loss for OZ when the neuro returns home.

Late afternoon wednesday we arrived home again, to find a note in the door from a Wild Dog Carer who came while we were away, contrary to my emailed cancellation of services. I rang Wild Dog to complain. I showered her and she laid down. At 2130 I gave the eyedrops and a little later changed to pump to 1.0 ml/hr and changed the cassette, but no Sinemet CR was given. Her legs were very dyskinetic.

At 0618 Thursday I reset the Duodopa pump to 5.0 ml/Hr and started the 9 ml Morning Dose. The cassette was replaced with a news one at 800 as she was being showered. From 0825 both legs were very dyskinetic, which continued until 1110 when I turned off the pump for an hour and too her to the loo on the Sara and at about 1130 the legs calmed. At 1240 another trip to the loo, no dyskinisia until mildly at 1255 but by 1425. At 1700 woke from sleep and only tingling in feet. 1715 to the loo again. No strong dyskinesias . Then no noticeable shaking up to and during dressing for bed.  I changed the cassette and set it to night time running at 2110, which stressed her enough to cause her to pant. I took her to the loo at 2150 and then stressed her again testing the spare pump to find how long after starting at 1.0 ml/Hr did the first pump cycle occur; about 3 minutes.

On Friday I changed the pump to daytime rate (5.0) at 0615 but did not give the Morning Dose. She woke saying she had not slept much last night.At 0650 she was very sluggish taking her to the loo on the Sara; very difficult to have her stand on the machine., so I began the 9.0 ml morning dose at 0700.  She wanted a soft drink at 0735After Wild Dog carer helped her shower she wished to return to bed because of lack of sleep. She only wanted a glass of milk for breakfast. When our scheduled power shutdown occurred at 0830 she was asleep, not waking until 1145 when she needed the loo.the finished the glass of milk and a chocolate for lunch. Since the power outage was until 1530, we left for Hot Air City for some shopping, There were known to slight dyskinesias all afternoon until in bed at 2015 and then at 2025 they were bad and her left leg bent at the knee; needing gentle force to straighten it, and she became breathless. I began the night time pump changes at 2100 and she needed another cold soft drink.

Saturday she was already awake at 0610 when I went to set the pump for day use, including the morning dose. She had back pains and slight dyskinesia getting onto the Sara for the loo. At 0735 her head tingled while getting onto the Sara for transfer to the commode for showering. Then she began scratching her tail bone area and needed cream on the area to stop. Negligible dyskinesia before going to respite at Wild Dog. returned her home at 1600 where she sat with feet raised, without dyskinesia but by 1645 she asked for a cardigan for she felt cold. At 1715 she wanted the pump stopped for her feet were "twisted", dyskinesia was mild and she was now hot so removed the cardigan. By 1835 her feet still felt tight without dyskinesia  and the pump was started again at 1845. The evening was not remarkable.

I don't feel like transcribing my hand written notes for today; they read much the same as above. Although she slept for a little over 1/2 an hour on her recliner prior to lunch. Worth remarking though is that at 1300 when she wanted the loo she was able to stand straight on the Sara and at no time were ther any shakes; either going or returning. I am sure she has always shaked somewhat while on the Sara. She also asked for her heavy sneakers rather than her slip on shoes.

Chapter 430 - What Benefit?

Tomorrow we drive to West Beer, firstly to see neurologist Dr F. on Tuesday then a PD clinic on Wednesday morning. We will stay overnight on Monday and Tuesday at the hospital accommodation block rather than make two day-trips since doing so is very expensive to have support organisations assist and these days I won't risk a return drive late in the afternoon after a stressful day in crowded waiting rooms and hospitals. Unfortunately, staying over night means we must travel with two sets of kylie and short satin sheets in case of "accidents". I'm unsure how my hips will cope helping her in and out of bed, on and off toilets and showering without the aid of our mechanical device Sara Stedy.

The following list will be handed to Dr F. as well as the clinic people:

1. After last Clinic (29th June) the Duodopa pump flow rate was set to 5.1 mL/hr and has not been changed since.  Only one cassette is used each day between 0600 and 2200 with an interruption of maybe 20 minutes during showering. The cassette is empty by 2200, sometimes causing the pump to "beep" continuously without displaying an error message.

2. One Sinemet CR 200/50 is taken at 2200.

3. Flu injection 20th April.

4. Physio at the local hospital fitted a removable cast to her left foot 20th April. She is only able to tolerate the cast from about 0830 to 1600; unable to wear it overnight. She last saw the  physio on 4th August because there had been no further improvement in her left foot over a period of several weeks.

5. Between 4th and 22nd July she was in the local hospital Rehab Unit for physio, transfer practice and observation. Staff tended not to have her exercise whenever dyskinesias occurred, often by late morning.

6. During a scheduled eye consultation on 10th August Dr Con changed her glaucoma medication to one drop in each eye of Ganfort Pf 0.3/5 because her eye pressures had risen to 22 and 27.

7. She is unable to swallow capsules (Vitamins D & E, Omega 3) or tablets (calcium, magnesium). So all are mixed (the tablets crushed) with Movicol in fruit juice.

8. She had lost appetite and her weight had decreased to 51.2 kg on 18 May. Dr I. prescribed Panafcortelon for 7 days then when her appetite returned he prescribed Periactin from 2nd June. Her weight was 55.4kg on 22nd June. Her weight was measured while in Rehab but I failed to record it. There are few opportunities to weigh her seated in a wheel chair.

9. Since 26th July she uses Biotene toothpaste because of dry mouth problems.

10. Two or three times a month she wakes in the middle of the night with very strong dyskinesias, stressed and sweating. I give her a Sinemet 250/25 to stabilise her.

11. In recent weeks when put to bed her left knee bends unintentionally, needing reasonable effort to force it straight again but doing so is not painful.

12. I believe she suffers sleep apnoea (I myself use a CPAP machine so know the symptoms) because I am frequently woken by her gurgling and snorting and holding her breath although she never snores.

13. Each night she needs to be cooled by a fan for up to an hour; even if the bedroom is very cold..

14. Her dreaming is often vivid for she frequently yells or laughs loudly without waking herself.

15. Her urinary incontinence is worsening; once she only used an additional pad inside her incontinence bloomers when we were leaving the house, now she wants to have an extra pad each day whether we are in or out. That way, once the pad is damp it can be easily removed and she is "dry" again.

16. She has difficulty knowing whether or not she has had a bowel motion.when sitting on the toilet. A sense of urgency may exist whether she has had a motion or not; sometimes she wants to remain on the toilet for up to an hour. Although there have been no "accidents" while out, an occasional small dropping may occur when getting off the toilet.

17. Sometimes she is able to transfer herself from wheel chair to toilet; most often I use the Sara Stedy to assist her.

18. She refuses to interrupt a current activity (hand craft, looking for an item, sorting cupboards etc) for meals, getting into the car and such like. On the other hand, she often discontinues a task of her own doing to begin something else.

19. After all this time, she is unable to easily move or steer her wheel chair without grabbing hold of furniture and doorways.

20. Both of her feet are usually cold to the touch and show a bluish colour irrespective of ambient temperature and whether she wears socks.

This little list has taken me all morning to write; I do hope someone takes note of some of it. I usually take brief notes with me, this time a little more detailed. Invariably in limited time situations in doctor's rooms or bustling clinics comments and questions are not conveyed to our satisfaction and we leave, feeling frustrated, saying to ourselves "What benefit was gained by coming?"