Chapter 492 - Writing This is Just Another Chore
If only I didn't procrastinate so much; delaying a task postpones effort but then my mental checklist reminds me at inconvenient times to initiate or complete the task and that annoys and irritates the hell out of me. I forget the stillness, quietness that results once the task is out of the way. For instance writing this blog. Events happen, my thoughts tell me Posterity (whoever she may be) may be interested about the details, I postpone, forget, then later have to refer to my spiral bound A5 notebooks in which I record daily events (unless in the daily grind I forget to do so). The dental assistant where I had to take her last Thursday (more on that later) was surprised that I knew the names of her medications to write on the inevitable form required to be completed at a new dental practise; I remember because I write the words several times each day as I administer the meds. So once I finish this blurb I expect to experience a small sense of relief.
The last visit to West Beer's PD Clinic Dr F. cranked up her daily rate to 7.0 mL/hr. I suspect he believes more is better. I remember eons ago when he had her left leg injected with Botox that he asked for her to have a bolus, to be repeated 20 minutes later when the first had no effect on her dyskinesias, so neither did the second to my eye but he thought it did. Anyway, we were to return to the Clinic a week later, except my developing "Man Flu" had me cancel that appointment so another was made for two weeks later than that so last Wednesday 27th June we were driven up there again by Wild Dog. Half way there an overhead road sign warned that half way along the M7 a prang was causing long delays. We decided to use the toll free shorter but slower route instead (as I was tempted to do last trip just to check out the off-peak traffic conditions in the rain). The stop-start conditions were bearable and half way along modern technology told me that the M7 had been cleared but we arrived almost on time and were able to use the toilet facilities prior to being called into whatever neurologist was available; as it turned out a young one who went through the usual routines to see how bad her finger fiddles and nose tapping really were. He was unaware of her inability to stand, so much for their records. He was not particularly interested in my 20 or so days of FitBit charts of her right leg since she had been on the dose of 7.0. He was then relieved by a more mature, suited, neuro (Dr F was away) who commented that my observations with my brand new non-contact thermometer of the temperature differences between opposing hands and feet were "incidental". Stuff him!! I am unsure whether we were given instructions on how to proceed, certainly no hand scribbled notes ones expects old farts to need. I caught the attention of the newer nurse E and queried her about slight leakage and resulting "crusting" around the stoma. She said that was expected due to relative movement between the tubing and the stoma. She inspected the stoma, saying "it was one of the best she had seen"; a relief for me. Yet small benefit for the cost to her Home Care Package of some $700 for the round day trip in the rain.
But backing up a little, she woke early on that Wednesday morning to tell me that she had bad tooth ache and her face was swollen on the RHS. Seems she had been suffering in silence for quite a few days without telling me. Not wishing to re-schedule the Clinic appointment again, I gave her a couple of soluble Panadol. At home again about 1530 I rang a dentist mentioned to me by the Wild Dog driver, so I made an on-line emergency appointment (high tech dentist!) for 1000 the following morning, describing the problem. A call from the dentist's receptionist shortly thereafter recommended beginning antibiotics ASAP. recommending calling the hospital if unable to see our GP. Well our GP's staff were not answering their phone, so I took her to the hospital a little after 1600. The triage nurse saw her about 1630, asking us to wait. Around 1930 I caught that nurse's attention, she saying they were very busy, I saying we will wait until 2000. About 5 minutes later we were called in, her teeth were examined, she was given an antibiotic to take immediately plus a script for a full course of the same. She had had enough, so I did not go to our chemist until early the next morning. Then to the dental appointment at 1000, a quick inspection, a quick X-ray, a quick tug and twist with those large pliers they use and we left poorer by $94 something dollars but the rest of the $355 fee was paid by our favourite private health fund. I enjoy having them pay for something!! Anyway, all is well now and I booked her in for a check up and clean later in the month, since she reacted well to the handling she received.
Before taking her to the hospital at about 1600 Wednesday afternoon I changed the Duodopa cassette and reduced the flow rate from 7.0 to 2.2 which was the night rate as a precaution , not knowing what may happen at the hospital. Considering the day of travel, an abscessed tooth, visits to two hospitals, her leg dyskinesias were much reduced for the whole of Wednesday. Again on Thursday when the tooth was extracted the dyskinesias were mild and I adjusted the flow rate from 7.0 (day) to 2.2 (night) mL/hr at 1710. Considering we had not been given specific directions on Wednesday, on Friday I changed the rate at 1410. Again, minimal dyskinesia. The change was made at 1445 on Saturday, 1305 on Sunday and at 1415 today Monday.
For the last couple of weeks she wanted to stay up later than 1900 when Wild Dog carers come to put her to bed, perhaps mildly manic, if that is the correct term for seeming a little uptight. Was that due to the 7.0 flow rate from about 0630 to 2000 approximately? With the lower dose rate from early afternoon, ie., 7.0 flow rate from 0630 to about 1400, she is calmer and wishing for bed before 1900. I would expect her to exhibit sluggishness.
Several months ago I bought her several Leggo kits hoping to interest in assembling blocks rather than partially completing then unpicking patch work squares. She was never interested. Perhaps that was because I failed to encourage her. On Saturday I suggested we build an object pictured in one of the booklets supplied with the kits. We made a train engine and a carriage, taking us a couple of hours, it being harder than I expected, a matter of too many small pieces to find. I watched her having difficulties orienting an irregular piece to fit in place, at times she wanted to add unnecessary pieces. On completion I took some photographs of her and the train. Next morning I tempted her to build a racing car as shown in one of the booklets, but no, she wished to sort the blocks into colour groups to be placed into zip lock plastic bags. Later down the street we bought four small sets of drawers in which to store the Leggo blocks. Today, Monday, she has spent some three hours sorting the blocks into drawers with quite a few blocks to go.
Early last week the Dance for PD DVD's I ordered arrived and since then she has "danced" for an hour most mornings. Her Surface Pro and 17" monitor remains set up on the over-the-bed table which is now positioned in front of the sit to stand rails in our lounge room. She has danced along to the demonstrations on each of the three DVD's in the set. She tries her hardest to follow along with the instructor and the Parkies seen in the video, mostly seated for the movements but when the participants are asked to stand, if able, to stand behind their chairs, used for support, she wishes to do likewise, yet is unable to stand well enough and needs to hang on so tightly that most movements are impossible for her. Perhaps my wishful imagination suggests to me that her left foot is becoming free from its rigidity. She often asks how well she is doing; I have to say "Pretty good Dear", trying not to become emotional. I have taken some pictures of her doing movements; she wants to see them, fortunately I only took stills. So far she does not look upon the movements as a chore, rather she achieves satisfaction, maybe even pleasure, from trying to follow the arm movements of the instructor; so much better if her legs could follow as well. An hour of movements satisfies her.
Today I contacted the Red Cross Community Visitors Scheme in the hope that she may be visited once a week by a lady with whom she can get along, just chatting, once a week, for an hour. She has so little social contact these days. The other day she played with her mobile, accidentally ringing a friend who once lived here in our village but who thought it better to move to be closer to her sons, except now her husband and both sons have died. So my dear heard all about the church friends the other has, the bus trips gone on, shopping outings and the like. How the conversation ended she was unable to tell me. But I felt depressed.
Now at 2030 on this Monday night she sleeps, a soft snoring. I feel relief.
The last visit to West Beer's PD Clinic Dr F. cranked up her daily rate to 7.0 mL/hr. I suspect he believes more is better. I remember eons ago when he had her left leg injected with Botox that he asked for her to have a bolus, to be repeated 20 minutes later when the first had no effect on her dyskinesias, so neither did the second to my eye but he thought it did. Anyway, we were to return to the Clinic a week later, except my developing "Man Flu" had me cancel that appointment so another was made for two weeks later than that so last Wednesday 27th June we were driven up there again by Wild Dog. Half way there an overhead road sign warned that half way along the M7 a prang was causing long delays. We decided to use the toll free shorter but slower route instead (as I was tempted to do last trip just to check out the off-peak traffic conditions in the rain). The stop-start conditions were bearable and half way along modern technology told me that the M7 had been cleared but we arrived almost on time and were able to use the toilet facilities prior to being called into whatever neurologist was available; as it turned out a young one who went through the usual routines to see how bad her finger fiddles and nose tapping really were. He was unaware of her inability to stand, so much for their records. He was not particularly interested in my 20 or so days of FitBit charts of her right leg since she had been on the dose of 7.0. He was then relieved by a more mature, suited, neuro (Dr F was away) who commented that my observations with my brand new non-contact thermometer of the temperature differences between opposing hands and feet were "incidental". Stuff him!! I am unsure whether we were given instructions on how to proceed, certainly no hand scribbled notes ones expects old farts to need. I caught the attention of the newer nurse E and queried her about slight leakage and resulting "crusting" around the stoma. She said that was expected due to relative movement between the tubing and the stoma. She inspected the stoma, saying "it was one of the best she had seen"; a relief for me. Yet small benefit for the cost to her Home Care Package of some $700 for the round day trip in the rain.
But backing up a little, she woke early on that Wednesday morning to tell me that she had bad tooth ache and her face was swollen on the RHS. Seems she had been suffering in silence for quite a few days without telling me. Not wishing to re-schedule the Clinic appointment again, I gave her a couple of soluble Panadol. At home again about 1530 I rang a dentist mentioned to me by the Wild Dog driver, so I made an on-line emergency appointment (high tech dentist!) for 1000 the following morning, describing the problem. A call from the dentist's receptionist shortly thereafter recommended beginning antibiotics ASAP. recommending calling the hospital if unable to see our GP. Well our GP's staff were not answering their phone, so I took her to the hospital a little after 1600. The triage nurse saw her about 1630, asking us to wait. Around 1930 I caught that nurse's attention, she saying they were very busy, I saying we will wait until 2000. About 5 minutes later we were called in, her teeth were examined, she was given an antibiotic to take immediately plus a script for a full course of the same. She had had enough, so I did not go to our chemist until early the next morning. Then to the dental appointment at 1000, a quick inspection, a quick X-ray, a quick tug and twist with those large pliers they use and we left poorer by $94 something dollars but the rest of the $355 fee was paid by our favourite private health fund. I enjoy having them pay for something!! Anyway, all is well now and I booked her in for a check up and clean later in the month, since she reacted well to the handling she received.
Before taking her to the hospital at about 1600 Wednesday afternoon I changed the Duodopa cassette and reduced the flow rate from 7.0 to 2.2 which was the night rate as a precaution , not knowing what may happen at the hospital. Considering the day of travel, an abscessed tooth, visits to two hospitals, her leg dyskinesias were much reduced for the whole of Wednesday. Again on Thursday when the tooth was extracted the dyskinesias were mild and I adjusted the flow rate from 7.0 (day) to 2.2 (night) mL/hr at 1710. Considering we had not been given specific directions on Wednesday, on Friday I changed the rate at 1410. Again, minimal dyskinesia. The change was made at 1445 on Saturday, 1305 on Sunday and at 1415 today Monday.
For the last couple of weeks she wanted to stay up later than 1900 when Wild Dog carers come to put her to bed, perhaps mildly manic, if that is the correct term for seeming a little uptight. Was that due to the 7.0 flow rate from about 0630 to 2000 approximately? With the lower dose rate from early afternoon, ie., 7.0 flow rate from 0630 to about 1400, she is calmer and wishing for bed before 1900. I would expect her to exhibit sluggishness.
Several months ago I bought her several Leggo kits hoping to interest in assembling blocks rather than partially completing then unpicking patch work squares. She was never interested. Perhaps that was because I failed to encourage her. On Saturday I suggested we build an object pictured in one of the booklets supplied with the kits. We made a train engine and a carriage, taking us a couple of hours, it being harder than I expected, a matter of too many small pieces to find. I watched her having difficulties orienting an irregular piece to fit in place, at times she wanted to add unnecessary pieces. On completion I took some photographs of her and the train. Next morning I tempted her to build a racing car as shown in one of the booklets, but no, she wished to sort the blocks into colour groups to be placed into zip lock plastic bags. Later down the street we bought four small sets of drawers in which to store the Leggo blocks. Today, Monday, she has spent some three hours sorting the blocks into drawers with quite a few blocks to go.
Early last week the Dance for PD DVD's I ordered arrived and since then she has "danced" for an hour most mornings. Her Surface Pro and 17" monitor remains set up on the over-the-bed table which is now positioned in front of the sit to stand rails in our lounge room. She has danced along to the demonstrations on each of the three DVD's in the set. She tries her hardest to follow along with the instructor and the Parkies seen in the video, mostly seated for the movements but when the participants are asked to stand, if able, to stand behind their chairs, used for support, she wishes to do likewise, yet is unable to stand well enough and needs to hang on so tightly that most movements are impossible for her. Perhaps my wishful imagination suggests to me that her left foot is becoming free from its rigidity. She often asks how well she is doing; I have to say "Pretty good Dear", trying not to become emotional. I have taken some pictures of her doing movements; she wants to see them, fortunately I only took stills. So far she does not look upon the movements as a chore, rather she achieves satisfaction, maybe even pleasure, from trying to follow the arm movements of the instructor; so much better if her legs could follow as well. An hour of movements satisfies her.
Today I contacted the Red Cross Community Visitors Scheme in the hope that she may be visited once a week by a lady with whom she can get along, just chatting, once a week, for an hour. She has so little social contact these days. The other day she played with her mobile, accidentally ringing a friend who once lived here in our village but who thought it better to move to be closer to her sons, except now her husband and both sons have died. So my dear heard all about the church friends the other has, the bus trips gone on, shopping outings and the like. How the conversation ended she was unable to tell me. But I felt depressed.
Now at 2030 on this Monday night she sleeps, a soft snoring. I feel relief.
posted by Kilpike | 8:46 pm
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