Chapter 382 - Duodopa Trial

Tomorrow a quiet drive up to West Beer where she will stay with me one night in a motel before she is admitted to West Beer Hospital to be fitted with a nasal tube for a Duodopa trial. She is sceptical about the whole procedure and may not have a clear understanding about what will happen. I believe that her current medications  will be stopped, the nasal tube will be fitted and Duodopa commenced. After about a week of adjustments to the Duodopa flow rate (I think experts call that "titration"), and assuming the Duodopa is effective, she will be fitted with a PEG tube, allowed a day or two of recovery before discharge. She then returns at intervals for further adjustments.

Part of her doubts about proceeding, I suspect, is due to the number of professional players involved. I refer to this as a situation, from her point of view, requiring project management, except of course, she would not use such words. Last year she was referred to Dr F who was absent for a time so she saw Dr  C who very efficiently noted her PD history, and all those things neuros do with a new (to them) Parkie. Since then she has seen Dr F three times in his rooms, a very long day being viewed by a room of professionals followed by a range of tests with and without meds, two MRI sessions, a visit to have the procedure described, a visit to briefly speak to a gastroenterologist then finally another visit to speak to an anaesthetist, and another neurologist plus EEG, blood pressure etc. I think that is a total of 10 visits each involving a two hour drive each way. Some of those visits could have been merged into one. Fortunately, you ever suffering tax payers have covered the costs of a driver and vehicle for each trip. The drivers usually exhibit glazed eyes by the time we return home indicating the wisdom of having someone else drive us; I feel exhausted, often with a slight headache, from stress and simply pushing the wheel chair about the hospital. Parking is so bad at that hospital that one of the flyers recommends using either public transport or having a friend drop off the patient. At the drop off point I saw a sign telling drivers not to get out of their cars; too bad for a driver-carer with a wheel chair bound loved one. On our last visit  the brochure with directions and advice suggested 3-4 hours at the pre-admission clinic; thankfully we completed the business within two.

I hope Duodopa eliminates all other meds including Apomine (as I'm led to believe), for I am really fed up with the rigours of meds at 10PM, 2AM (often missed) and 6AM, and replacing the Apomine pump sometime between 8-10PM. Hopefully her mobility may improve, easing the burden of up to 8 wheelchair/commode to loo transfers each 24 hours. Yes she wears incontinence pants and pads but I'm unable to deny her voiding in the loo whether at night if she asks or during the day.

One night a few weeks ago I discovered that I had not started the Apo pump the evening before. I noted earlier that I failed to remove the old needle on night. I'm slipping with my care.

Now about her her legs which often become so itchy and inflamed she is driven to distraction. Our GP Dr I wondered whether she had developed a reaction to Apomine; apparently not but she has a severe reaction to grass pollen. In the past couple of months she has had four bouts of the itching. My notes indicate that the last three bouts (with lessening severity) have immediately followed a trip to West Beer. But the first bout in this phase (she has had this problem a year or so ago) was following the last time I put her feet on her pedal machine and had her exercise for 10 minutes before she needed to stop because her legs tingled and burnt too much. So I wonder whether stress and leg exercise may initiate an itch response? Since her legs tingle, burn, seem to tremor and shake and have ants crawling inside I see no reason why her sensory nerve endings may also generate itchy sensations as well. She does not scratch the itchy areas any more, nor rub them with her palms or a cloth (after I told her even such gentle action repeated damages her skin) so instead we apply Ice Gel the cooling action of which removes the itch. I must query a neuro about this. I was called just now to apply Ice Gel on her itchy back; the areas over each shoulder blade and a  line above the rear strap of her bra were inflamed and itchy and warm to my touch.

This morning something very strange happened. She continues to move items such as crockery and ornaments about in the cupboards and shelves in her quest to make the house tidy. While I was in my dungeon this morning she called me about something strange. Wishing to position a plate on an upper shelf, she locked the brakes on the wheel chair, then kneeling her left knee on the seat of the wheel chair she reached up for the plate. Suddenly her left leg lost all sensation and looking down at it saw that the lower half, the upper half being covered by her slacks, had turned purple. She was able to sit back on the wheel chair before calling me. I wanted photographs of her purple leg but she refused to repeat the action, she was scared. I told her no neuro will believe her.

Then down the street to buy some night attire for hospital and lunch at the Club. Yesterday she began "running up" several night dresses, a 20 minute job she said, yet it took her all afternoon to ready the fabric for cutting out. This morning I convinced her we buy several instead.

After being woken for assistance to the loo at 4AM this morning, then listening to RN on ear buds attempting to return to sleep, I heard a psychologist (I suppose) advising that a good therapy in stress situations is to write a story about the issues involved. Is this why I write this stuff?

Chapter 381 - A Scare

I'm still not making notes on a regular basis, I know I'm forgetting things that should be recorded. She has a mania for sorting the contents of cupboards, leaving piles of stuff on tables, chairs, the floor. She seems driven to clean the house before she under goes the Duodopa experience at West Beer, about 2 weeks away. Perhaps she fears not surviving the operation, which I understand to be simple and routine; I hope so anyway. I have booked a motel close by so there will be no need for me to brave queueing for access for the hospital's lousy car park. Unfortunately motel charges far out way the parking fees.

I noted she began by cleaning the cupboard in which we keep additional pills and such on Thursday 19th March; only noting that because her left leg began to throb, which was eased by wrapping it in an elastic bandage, and for a few days afterwards.

Friday 20th March we saw our GP Dr I. Her allergy blood test indicated she was very intolerant to grass pollen. We failed to remember where she may have been close to grass recently to cause the rash on her legs. Back home that day she had breathing problems, worsened by laying down. Her BP was 156/90 66.

The following morning we discovered I had not removed the previous Apomine needle the night before. No sign of infection. Naughty of me though. I'm finding getting ready for bed quite a drag. I feel quite weary and run down as evening falls, my hips hurt, I'm irritable, most nights fit a fresh syringe and pump to her around 8PM then try to remain awake to help her to the loo about the time of her 10PM meds. Even though she wears incontinence pants plus an extra pad to bed she wakes up once between 0200 and 0400 needing to piddle; I can't deny her assistance, I myself would find piddling my pants distressing, so I help her onto the commode and wheel her to the loo. The anti-depression pill Dr I. gave each of seems not to be very effective this last week.

Two or three times each morning and afternoon she needs the loo; she has a lot of flatulence, confusing this with needing to poop. Since she spends all her waking hours in the wheel chair now, she calls me (on rare occasions she doesn't need assistance), I push her to the loo, lock the wheel chair (or commode) brakes, swing foot rests out of the way, move an armrest out of the way, help her rise while she grabs the fireman's pole with one hand and the grab rail on the wall. Sometimes I need to lift her by grabbing the rear of her slacks and incontinence pants and lifting her sufficiently (I believe this is called "giving her a wedgie") for her to support herself long enough for me to lower her pants, which is often a two step process, first to lower her slacks, second to lower her incontinence pants (which sometimes tear). Getting her off the loo and back onto the wheel chair or commode is nearly always a three step process , usually she needs to sit on the loo seat after raising each pair of pants, before the final transfer to wheel chair or commode. Usually there is some bidet water spotted about. I tend to flinch each time she calls me on the CB radio.

On Tuesday 24th another trip back to West Beer to speak to the gastroenterologist about fitting the PEG. WE only just made the appointment on time then had to wait because there was nowhere for the doctor to speak to us. He had to speak to us in the central area of a 4 bed ward, this gave her bad feelings about staying in a public hospital for about 10 days. I'm unsure who benefited from this short chat after we had to make a 5 hour round trip; fortunately Wild Dog provided the transport, budgeted for by the Carers organisation.

Then the following day, 25th March we saw Dr M, neurosurgeon, in Hot Air City hospital, at first contact a very good doctor, about her "severe  lumbar canal stenosis" which is evident on the MRI scans made last September. The night before I tore our house apart trying to locate those scans; the last we remember seeing them was in Dr F's hands at the appointment with him last October. Hopefully Dr F has them filed away or else the scans were digitised. Anyway, it was agreed that nothing spinal is to be done until after the Duodopa is fitted. Our Wild Dog driver got us to the hospital a few minutes late, partly due to having to fill the fuel tank on leaving town, so at the hospital we went to the end of the 1 1/2 hour queue.

That evening on getting her to bed I noticed a rash on her leg. It was not itchy and took a number of days to disappear. We are sure no rash was their when Dr M examined her legs in the morning. Only a variation in the brand of skin lotion Wild Dog carers rub on her legs is the only suspect change we can remember, so once this Easter holiday season is over I will test that lotion on her legs.

The last time she saw GP Dr I he had received a note from DR F asking for her to have an abdomen Xray to find evidence of bowel compaction. That was done on 30th March with no signs of compaction but comments that "There is lumar scoliosis with marked degenerative change involving the lower lumbar spine."

This morning, Sunday 5th April she was seeing double; had breathing discomfort, I checked her blood pressure as 176/87 61 while laying in bed. She doesn't trust my Imron recording machine so asked for her small wrist monitor (it needed new batteries to be able to pump up to the pressure required) which showed 179/95 61. Her temperature was 36.8. At 0724 155/78 60 (Imron) still in bed; 0745 116/70 58 (Imron) while sitting on the loo, at which point the day became a normal sunny one.

At this time of writing, she has progressed to dusting my sorely depleted wine cabinet. All the dusting, cleaning and re-arranging is being done while seated in her wheel chair; I'm sometimes called upon to help.