Chapter 397 - Wheels in Motion
Monday was OK until her legs began to kick at 1515. Two hours later our itinerant hairdresser cut our hair and my beard. By 2015 she needed to lay on her bed.
Tuesday to Wild Dog Respite after a rough morning, needing a poo on waking at 0720 and by 1000 her head was wobbly and she needed to attempt another poo. She rang me at 1515 to bring her home.
Wednesday saw us take a comfortable drive to Hot Air City to visit the Living Centre place which has shed its OT's who used to give excellent advice on the use of equipment and fittings etc for those not 100% mobile. We were seeking advice about personal lifters. Anyway, one of the few staff there gave me good advice about other matters. Then an appointment at 1430 at the private rooms of Dr M. who she originally saw in the public hospital. This time I had all the scans with me! After looking at the scans he described what he would do for her and gave cautions about potential dangers of complications occurring. Instead of fusion, he described the procedure as "lumbar laminectomy". a matter of removing part of the vertebrae to provide greater freedom for the nerve fibres. He assumes she will remain in hospital for longer than a usual patient and will probably require rehabilitation following the surgery. When he asked, she agreed to proceed. October 12th is the day scheduled for the job. After stopping at the hamburger place on the way out of town we arrived home at 1830, changing the Duodopa cassette on the way. No dyskinesias at all today, not like last week when we saw Dr F. But by 2020 her legs and feet began to burn and tingle, usually the precursors to much leg kicking did not occur until after the pump was off and she was in bed. By 2235 they were severe.
Then at 0215 Thursday morning she woke me because she "was falling out of bed". On the contrary, she lay in the centre of her bed, fiercely gripping the hand rails on either side. At 0300 she woke me again because all her bed clothes were on the floor; they were so. At 0845 she spilled Milo down her clothes and became quite hung-up that the pump bag was choking her and was very uncomfortable; she attempted to adjust the strap length of it. By 1230 the dyskinesias were very bad until 1400 when they ceased. She was "minded" by a Wild Dog carer while I attended an appointment between 1515 and 1645. When I returned her leg dyskinesia can only be described as vigorous and continued that way until I put her to bed at 2130. An unpleasant day after a very good one.
On Friday I made no notes other than "minor dyskinesia" at 1700 and none at 1930.
Yesterday, Saturday 19th September, and ignoring instructions, I reduced the duodopa rate down from 5.8 to 5.6 mL/hour. She attended Wild Dog respite but called me at 1330 to bring her home; severe dyskinesia began half an hour earlier. At home there were periods when she needed a fan blowing on her. She left her slacks off at one toilet visit, too difficult to get them on, so she needed to sit in the wheel chair with a blanket across her legs. The afternoon alternated between visits to the loo, periods of dyskinesia. A friend visited to tell us she took her husband to Hot Air City public hospital during the week; he has cancer in his oesophagus; for months he has been unable to eat anything other than fluids. At 1430 her chest felt tight so she needed to take her bra off. Her blood pressure was 128/75 86. I strapped a kitchen chair to the front of her recliner to give her legs more support. By 1800 her legs were quiet.
Today was a good day. No dyskinesia until late afternoon. She wanted to get outside, so I wheeled her out whereupon she took to weeding our raised walled garden bed, quite obsessively. Tonight my right hip is complaining with sudden sharp pains; it objects to lifting and twisting. Oh shit.
This past week she has alternated between days with leg kicking and days without, well perhaps only less.
Tuesday to Wild Dog Respite after a rough morning, needing a poo on waking at 0720 and by 1000 her head was wobbly and she needed to attempt another poo. She rang me at 1515 to bring her home.
Wednesday saw us take a comfortable drive to Hot Air City to visit the Living Centre place which has shed its OT's who used to give excellent advice on the use of equipment and fittings etc for those not 100% mobile. We were seeking advice about personal lifters. Anyway, one of the few staff there gave me good advice about other matters. Then an appointment at 1430 at the private rooms of Dr M. who she originally saw in the public hospital. This time I had all the scans with me! After looking at the scans he described what he would do for her and gave cautions about potential dangers of complications occurring. Instead of fusion, he described the procedure as "lumbar laminectomy". a matter of removing part of the vertebrae to provide greater freedom for the nerve fibres. He assumes she will remain in hospital for longer than a usual patient and will probably require rehabilitation following the surgery. When he asked, she agreed to proceed. October 12th is the day scheduled for the job. After stopping at the hamburger place on the way out of town we arrived home at 1830, changing the Duodopa cassette on the way. No dyskinesias at all today, not like last week when we saw Dr F. But by 2020 her legs and feet began to burn and tingle, usually the precursors to much leg kicking did not occur until after the pump was off and she was in bed. By 2235 they were severe.
Then at 0215 Thursday morning she woke me because she "was falling out of bed". On the contrary, she lay in the centre of her bed, fiercely gripping the hand rails on either side. At 0300 she woke me again because all her bed clothes were on the floor; they were so. At 0845 she spilled Milo down her clothes and became quite hung-up that the pump bag was choking her and was very uncomfortable; she attempted to adjust the strap length of it. By 1230 the dyskinesias were very bad until 1400 when they ceased. She was "minded" by a Wild Dog carer while I attended an appointment between 1515 and 1645. When I returned her leg dyskinesia can only be described as vigorous and continued that way until I put her to bed at 2130. An unpleasant day after a very good one.
On Friday I made no notes other than "minor dyskinesia" at 1700 and none at 1930.
Yesterday, Saturday 19th September, and ignoring instructions, I reduced the duodopa rate down from 5.8 to 5.6 mL/hour. She attended Wild Dog respite but called me at 1330 to bring her home; severe dyskinesia began half an hour earlier. At home there were periods when she needed a fan blowing on her. She left her slacks off at one toilet visit, too difficult to get them on, so she needed to sit in the wheel chair with a blanket across her legs. The afternoon alternated between visits to the loo, periods of dyskinesia. A friend visited to tell us she took her husband to Hot Air City public hospital during the week; he has cancer in his oesophagus; for months he has been unable to eat anything other than fluids. At 1430 her chest felt tight so she needed to take her bra off. Her blood pressure was 128/75 86. I strapped a kitchen chair to the front of her recliner to give her legs more support. By 1800 her legs were quiet.
Today was a good day. No dyskinesia until late afternoon. She wanted to get outside, so I wheeled her out whereupon she took to weeding our raised walled garden bed, quite obsessively. Tonight my right hip is complaining with sudden sharp pains; it objects to lifting and twisting. Oh shit.
This past week she has alternated between days with leg kicking and days without, well perhaps only less.
posted by Kilpike | 7:58 pm
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