Chapter 378 - And So It Goes

Last Tuesday we saw the Trial Coordinator at West Beer.She gave us an overview of Duodopa and introduced us to a couple, he being the one with PD. He had been wheel chair bound and unable to play his piano until he was fitted with a Duodopa pump. His wife, although initially disappointed with the initial results of Duodopa, sings it's praises. Now he is walking with the aid of a cane and is playing the piano once again. He was not very vocal, being quiet and reserved. He stood without noticeable tremor for several minutes while his wife spoke to us. He turned somewhat awkwardly but walked away with small steps, quite well I thought for a man over 80 years.

By the time we arrived home she had decided to proceed with hospitalisation for Duodopa. Seeing the 80 year old had overcome her doubts. Next day I emailed West Beer. We will receive details of appointments in a week or two.

She continues to sweat badly. Her legs and back itch frequently. She tries hard not to rub or scratch those areas. On Saturday she woke me at 0530 because her itchy legs were causing her stress. I rubbed Animine from a little above her knees to her ankles, both legs. At 0600 she took her meds. At about 0645 when her meds kicked in she said with surprise "The itching has stopped!" That convinced me that the "heat rash" I see is just another side effect of her PD/meds.

Chapter 377 - Not so Tired as Just Weary

Her pump is changed between 1700 and 1900 each day. I no longer attempt to immediately change an empty syringe; seems not to make any difference to her well being. We both sleep better with the earlier changeover, rather than at 2200 or thereabouts. Occasionally she sleeps through her 2200 meds, more often not waking for her 0200 meds as well; I have noticed negligible effect on her mobility or other symptoms. However, I no longer take copious notes, for doing so depresses me, as does writing this blog. Regular readers may notice the irregularity of posts. But I must post, for this is the only searchable way I can recall specific events, rather than depending on dithery aging minds.

Trips to the loo are onerous. Rarely is she capable of taking herself for either poop or piddle. At nights she wears heavy duty incontinence pants plus an additional pad. Sometimes leaks occur so her satin drawer sheet and the kylie sheet below that have to be washed. Sometimes I use the wheelchair for the transfer, usually the commode, depending on where she happens to be seated when urgency occurs. But the commode is easier. Very infrequently she piddles in the commode. Lowering clothes is easier while transferring from commode or wheelchair at the loo, partly because she is able to raise herself by grasping the fireman's pole. We both suffer some arm pains as a result of the transfers. Although I sometimes attempt to delay her loo visits because when away from home, say at her Tuesday and Saturday respites, doctor visits, occasionally the club, the unfamiliar bathroom settings discourage her and help her "hold on" much longer, but I don't persist, even though she wears incontinence pants during the day at home or away. While out an extra pad is used.

The psychologist I visit agreed to attend our PD Support meeting last Thursday. During her talk the matter of social withdrawal was raised. Afterwards, as we were leaving, someone asked whether we intended to have lunch at the club. Without thinking, I replied "No, we're going home." She said nothing. Going down in the lift (she was in the wheelchair) I realised what I had said, so asked her whether she wanted lunch at the club; she surprised me by saying "Yes". So we stayed, eating much more than we should have. Not just PWP's but carers as well suffer social withdrawal.

I made email contact with someone who has used Duodopa for 8 years, and highly recommends it. He rang us after her two week respite at Wild Dog; she spoke to him and his wife. I decided to keep out of the loop; she is not quite convinced that this is the route for her. I hope she agrees. Her present condition is one of rigidity and dyskinesia in her legs and feet at the same time. Does that sound impossible? Her legs thrash around (I have seen much worse) yet her knees won't allow her legs to straighten, when I help her to walk (if one can call it that) she remains stooped and her feet only sometimes leave the floor, instead they tend to scuff along. Her left foot remains turned inwards; same is happening to the right as well. Her feet and lower legs continue being painfully sensitive to tapping and bumping. Except in bed, she always wears shoes to protect her toes. We have found a Hushpuppy moccasin to be ideal. Her older pair are being worn out of shape, especially the left one.

This morning I realised I was not tread milling and watching lectures any more, so I decided to do same for half an hour after I set her up to use the pedal machine at the same time. After 15 minutes she called me on the CB; her feet began to twist, especially the left big toe, then weird feelings travelled up both legs to her stomach, both legs were very dyskinetic, her head began to tingle and she felt like throwing up. The pedal machine was removed for her legs to be supported on a chair, her feet strongly tingled. Within a few minutes she urgently needed a poop; transferred via the commode then back to her recliner and needed a couple of shortbread biscuits and some soda water.

Last week I tried using a vibrator on the soles of her feet and a TENS machine on her lower legs. Then one day both her legs developed an itchy rash which she rubbed and scratched, breaking the skin before I applied Animine cream. The spots and scabbing are now mostly gone.

I bought four standard roses for our raised garden wall when she came home from her two week respite, not expecting any blooms from them this season. Yesterday she noticed that one, named "Mother's Love",  had bloomed so I cut the three blooms to place in a specimen vase for her. Yesterday was Valentine's Day.

On Tuesday we travel to West Beer to be educated into the details of Duodopa.

Chapter 376 - An Experience Completed

I brought her home from Wild Dog last Tuesday, our respite experiment completed. I visited each day after 1600 to changeover the Apomine pumps.Now that she is home the pump replacement occurs around 1700, rather than 2200 as in the past, when we are both tired. More about that later. Although Wild Dog staff implied otherwise, she had them shower her each day because of the excessive sweating she experienced while there. Although her room had an independent air conditioner, it was not used because it dripped water, possibly because it was adjusted incorrectly (staff tended to set it to 19C) and iced up and the door from her room to the corridor was always left open. At first the window in the room was left open for cool air (it was open when she arrived) until night staff discovered it so and demanded it be kept closed for safety. So her bed clothes needed frequent replacement because of excessive sweating.The usual problems with Parky meds, the worst delay was 1 1/2 hours late. On one occasion I requested to speak to the RN; he was quite relaxed about the delay, other commitments and the like. I suppose just because a PWP is not likely to die in consequence of delayed meds there is no need to be on time. However, the RN said that she could have been assessed as competent to self medicate but no one else mentioned that and since this advice was given two nights before she was discharged I didn't bother to demand she be assessed.

Although she was promised an occasional visit by a physio, none appeared. The staff told her she was not to get out of bed, go to the loo on her own, or walk pushing her walker which I had taken in for her. The commode which came with the room was too high for her and was designed for an amputee, so I took in her own commode. She figured out a way to haul herself up a vertical rail in the shower so that staff could pull up or lower her pants. She was not always given Vitamin D or Movicol. Fortunately she was able to attend the craft activities every day except for Sundays and a public holiday (this is where she normally goes on Tuesdays and Saturdays).

Strange behaviour after missing 2200 meds on Thursday and Saturday nights. We are tending to go to bed earlier, both very tired, and with changing the pumps early each evening we are tending to go to sleep, not waking for her 2200 meds. Friday morning she was quite active, able to move reasonably easily using her trolley and even walked out to the car and easily got into it, for we were meeting the Ugly Sisters up the road for lunch; one of them had a birthday. Today, Sunday, she seems reasonable mobile for having missed the 2200 meds again. This reminds me of when I reduced the Apomine from 12ml to 10ml (with Dr I's approval) and her movement ability "improved" the following day, as it did when I increased the dose back to 12ml. Why did I do that? I must search back through these notes. I am quite positive that her mobility improved simply for changing her dosage; I wonder whether such behaviour has been noticed anywhere?

On the same Thursday she fell. I had made her a cheese and gherkin sandwich, cut into 4, for lunch. Having decided the bread was stale, she rose to take the sandwich to the microwave to warm the bread, for she says that softens it. Instead, grated cheese and all were strewn across the floor, she in the middle of it. No damage or pain to her, so the usual kneeling on a pillow in a staged assault up a chair. I made another sandwich.

We are finding a 10mm thick plastic board, slightly boomerang shaped, bought from Pelican, useful for her to get in and out of the car. One end of the board is pushed beneath her bum while she is on the wheel chair or seated in the car; the other end of the board rests on car seat or wheel chair. Then she "slips" along the board; works well unless her mobility is really bad and then she envisages all sorts of things such as falling. I also bought a seat made from thin slippery plastic sheet, with handles attached, but I have not tried that yet, since it needs to be slid beneath her bum, which tends to be immovable at the best of times, but I think it may be useful for transfers between chairs and the wheel chair.

Each day I am using a vibrator on the soles of her feet and TENS machines on her lower legs. Only one day has she used the pedals.