Chapter 395 - Flickers of Sunlight
One of the mind exercising utilities I indulge myself (although my daily exercises with them have reduced to maybe once or twice each week) gave me a routine assessment a few days ago in which I agreed I had been in a bad mood, angry and suchlike in the past week but I was unable to complete the assessment because my lousy phone line terminated the test too soon. We have had good service over the years from Telstra and its peasants' marketing arm Bigpond but our landline for the last week has been too noisy to use for voice, although DSL is frequently useable; they estimate repairs completed by next Wednesday at 7PM. Anal Cavities!
Last Monday I initiated a dangerous incident. She was very dyskinetic during the morning, dropping off to sleep in the wheel chair. I had adjusted the DuoDopa pump down from 6.4 to 6.2 the day before. Following earlier advice I turned the pump off at 1430 in an attempt to reduce the leg dyskinesias (we have done this before for up to an hour to no affect) before going to a bone density appointment. That over we returned home where she felt chilled and the dyskinesia was reduced at a loo visit at 1720. Another loo visit at 1900 without dyskinesia, she had "feeling" in her left leg, her right leg tingled and her face was hottish. Both feeling tired, we went to bed at 2020 just to lay down for awhile; no stiffness, moving OK but her feet tingled. I thought about restarting the pump, she said "It's off during the night anyway" so with that observation I reacted like the mythical Adam and dozed away, and now seek to share the blame with her. I woke suddenly at 2210. When I went to prepare her for bed I was unable to wake her, her breathing was sometimes laboured, her body was limp. I debated with myself about calling an ambulance while I restarted to pump, the "morning dose" function was locked so I administered a bolus at 2225. Within 5 minutes she began to wake and at 2235 I was able to get her onto the commode, into the loo, removed her slacks & incontinent pants, back onto the commode, fitted her overnight incontinence pants then brought her back to bed. At 2250 she needed her water bottle for her dry mouth; she looked "dippy" and "not quite with it". At 2300 she was docile and dreamy. At 2400 I removed the pump, cleaned her stoma, syringed the tube and gave her the usual bedtime Sinemet CR. A quiet night was had by all.
Next morning, Tuesday, after the loo, I fitted the pump, having reduced the flow rate (as I had planned, wishing to have her stabilise for 7 days before seeing Dr F. next week) from 6.2 to 6.0.
There were some brown stains left on the towel she sat on on the bed after returning in the commode from having a shower. At 0900 with no dyskinesia her legs burnt while doing a motion. Then to Respite for the day. That evening she was very dyskinetic; I was tempted to raise the flow rate.
Wednesday was an average day, her legs "galloped" while on the loo while I removed her overnight bloomers; then back on her bed they merely twisted. From 1100 she was re-arranging her sewing room (again). She said she felt "poorly" between 1100 and 1300 but from then on she had a good day.
Thursday turned out much better. At 0830 her left leg was numb, the right partly so. At 1650 she took herself to and from the loo (on the wheel chair of course, no movements occur except by wheel chair or commode). A milestone! Although by 1825 she needed assistance to do so again, yet she said "My legs have not been shaking today, but my feet are bad". However, leg dyskinesias began around 2100. After our routine nightly procedures she became hot in the face and needed her fan on. I was woken at 2345 by the noise of her legs "scissoring" ( my term for the action) back and forth under the sheets.
Friday began quietly enough, although she woke early at 0630, upsetting my routine of attaching the pump around 0700 while she sleeps, then having my shower before waking her for the morning routine. She had mild leg dyskinesias all day.
Saturday began the same, except the fan was on already at 0640. During the morning routines I noted a red spot on her right knee; took a picture of it. At 0930 she needed no assistance going to the loo or cleaning her teeth. Then to Respite. While there she took herself to the loo without help. Each evening now dyskinesias begin after about 1930; for example last evening she took herself to the loo at 1900, but at 1930 she needed assistance to the loo and dyskinesias began in her legs. However, I will not adjust the flow rate lower at this time.
Anybody reading the above may fail to see improvement, but it is there. My hips and lower back attest to improvement.
Early in the week, delayed by our telecommunications problems, I had an informative chat with a helpful person from a carer oriented twig of the government, offering to provide me a budget to assist with respite and such help to make my life a little easier. As a result I am rearranging our scheduled weekly activities for Wednesdays (rather than Tuesdays) and Saturdays to be Wild Dog respite days and initiated PD clinics to occur at Hot Air City rather than West Beer to minimise travelling time and cost. And other things.
Judy Collins sang "I really don't know clouds at all"
Last Monday I initiated a dangerous incident. She was very dyskinetic during the morning, dropping off to sleep in the wheel chair. I had adjusted the DuoDopa pump down from 6.4 to 6.2 the day before. Following earlier advice I turned the pump off at 1430 in an attempt to reduce the leg dyskinesias (we have done this before for up to an hour to no affect) before going to a bone density appointment. That over we returned home where she felt chilled and the dyskinesia was reduced at a loo visit at 1720. Another loo visit at 1900 without dyskinesia, she had "feeling" in her left leg, her right leg tingled and her face was hottish. Both feeling tired, we went to bed at 2020 just to lay down for awhile; no stiffness, moving OK but her feet tingled. I thought about restarting the pump, she said "It's off during the night anyway" so with that observation I reacted like the mythical Adam and dozed away, and now seek to share the blame with her. I woke suddenly at 2210. When I went to prepare her for bed I was unable to wake her, her breathing was sometimes laboured, her body was limp. I debated with myself about calling an ambulance while I restarted to pump, the "morning dose" function was locked so I administered a bolus at 2225. Within 5 minutes she began to wake and at 2235 I was able to get her onto the commode, into the loo, removed her slacks & incontinent pants, back onto the commode, fitted her overnight incontinence pants then brought her back to bed. At 2250 she needed her water bottle for her dry mouth; she looked "dippy" and "not quite with it". At 2300 she was docile and dreamy. At 2400 I removed the pump, cleaned her stoma, syringed the tube and gave her the usual bedtime Sinemet CR. A quiet night was had by all.
Next morning, Tuesday, after the loo, I fitted the pump, having reduced the flow rate (as I had planned, wishing to have her stabilise for 7 days before seeing Dr F. next week) from 6.2 to 6.0.
There were some brown stains left on the towel she sat on on the bed after returning in the commode from having a shower. At 0900 with no dyskinesia her legs burnt while doing a motion. Then to Respite for the day. That evening she was very dyskinetic; I was tempted to raise the flow rate.
Wednesday was an average day, her legs "galloped" while on the loo while I removed her overnight bloomers; then back on her bed they merely twisted. From 1100 she was re-arranging her sewing room (again). She said she felt "poorly" between 1100 and 1300 but from then on she had a good day.
Thursday turned out much better. At 0830 her left leg was numb, the right partly so. At 1650 she took herself to and from the loo (on the wheel chair of course, no movements occur except by wheel chair or commode). A milestone! Although by 1825 she needed assistance to do so again, yet she said "My legs have not been shaking today, but my feet are bad". However, leg dyskinesias began around 2100. After our routine nightly procedures she became hot in the face and needed her fan on. I was woken at 2345 by the noise of her legs "scissoring" ( my term for the action) back and forth under the sheets.
Friday began quietly enough, although she woke early at 0630, upsetting my routine of attaching the pump around 0700 while she sleeps, then having my shower before waking her for the morning routine. She had mild leg dyskinesias all day.
Saturday began the same, except the fan was on already at 0640. During the morning routines I noted a red spot on her right knee; took a picture of it. At 0930 she needed no assistance going to the loo or cleaning her teeth. Then to Respite. While there she took herself to the loo without help. Each evening now dyskinesias begin after about 1930; for example last evening she took herself to the loo at 1900, but at 1930 she needed assistance to the loo and dyskinesias began in her legs. However, I will not adjust the flow rate lower at this time.
Anybody reading the above may fail to see improvement, but it is there. My hips and lower back attest to improvement.
Early in the week, delayed by our telecommunications problems, I had an informative chat with a helpful person from a carer oriented twig of the government, offering to provide me a budget to assist with respite and such help to make my life a little easier. As a result I am rearranging our scheduled weekly activities for Wednesdays (rather than Tuesdays) and Saturdays to be Wild Dog respite days and initiated PD clinics to occur at Hot Air City rather than West Beer to minimise travelling time and cost. And other things.
Judy Collins sang "I really don't know clouds at all"
posted by Kilpike | 11:52 am
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