Chapter 315 - Some Nights are Diamonds, Some are Dung
On Tuesday last I decided to take her fluid intake under my control and then measure the quantity of every piddle. These are the quantities I measured on Wednesday 23th:
0345 200ml; 0530 150ml; 0615 250ml; 0800 170ml; 1230 concurrent with bowel movement; 1430 140ml; 1500 125ml; 1630 100ml; 1830 200ml, 2200 75ml
Thursday 24th:
0030 170ml; 0400 200ml; 0630 150ml
During this same period, I gave her the following fluids:
0915 250ml fruit juice; 1100 250ml soda water; 1200 250ml soda water; 1400 250ml soda water; 1630 250ml soda water; 1830 250ml soda water
The data gathering ceased for the remainder of Thursday because we went to see Polly the PD nurse and the Considerate Neuro in Hot Air City. On Friday I kept her 250ml glass filled with soda water until our supplies ran out. She used the commode only twice early Friday and once early Saturday mornings. So yesterday I almost felt alive during the day.
But yesterday I left her to maintain her own fluid intake. Last night she needed to sit on the commode six (6!) times between 0300 and 0647, each time needing assistance to get out of bed onto the commode. And this commode is too high for her; a replacement for the previous one on which one of the brakes was unreliable, so the replacement will need to be returned. Anyway, today I feel like lifeless excrement.
After last Sunday's close misadventure, I decided we should shop early then go to the Club for lunch. So over to the large hardware store near the 4 lane over-pass to buy a wall mounted remote controlled fan so that she is able to have a breeze on her face now that warmer weather is here. Wall mounting is preferable to the remote controlled pedestal fan she currently uses, reducing clutter and power cords in the TV room. I think I will buy another for her for the bedroom. The fan sounds a little like a 747 with reverse thrust applied but we should grow used to it.
Then to her favourite local rag shop where her left leg began collapsing, so she had to be seated on the walker while I paid for the goods. Once around at the Club she was able to walk in pushing her walker. We stayed awhile, too long perhaps, having her 2pm meds before we left, her being pushed in the walker. Around to the mall. While she remained in the car, I bought some groceries and picked up some meds for both of us at the chemist. She is now sewing. Each time I pass I fill up her 250ml glass with soda water. I decided on soda water because it is simply carbonated water, rather than sugar flavoured water with additives such as quinine, dyes etc. although there is a small quantity of sodium.
Last Thursday our visit to the Neuro was a little confusing. He seemed to think she was presently taking more L-dopa than she actually is and when he briefly looked at the X-ray scans of her back (I borrowed them from our local hospital) he said they were not applicable since the tingles and pains were in her left leg, not the right side where her spine shows some wear and tear. He had little time available to make changes to either meds or apomine, so we need to return on Monday. I am sure I heard him say something like "polyneuropathy" in the few words he said. The Neuro queried her blood pressure at 5 and 10 minutes following a bolus dose. No one had mentioned a possible BP change following a bolus, so on Friday she had a bolus at 1312 when her BP was 146/98 67; at 1320 145/98 57 and at 1324 158/93 60; these are all a little higher than usual.
At the moment, she is off so much within 1 1/2 hours of conventional meds times that I wonder whether the apomine is having any impact at all. When I ask, she doubts whether she experiences any benefit from the apomine. On the other hand, yesterday she asked for a bolus at 1300 and agin at 2100; today at 0306 and 1245. She agreed when I suggested that she must feel some benefit from a bolus since she asks for it.
When hand sewing, she sometimes remarks that her hands are too sluggish or "fluffy" to continue working.
She just called me (1745, 15 minutes before her meds), she had not noticed the time while seated at the kitchen table doing hand sewing, she was very much OFF and frozen, was unable to stand but with assistance she was able to push her trolley into the loo, all the while breathing strongly through her nostrils like a frightened animal. Her speech is thick, slightly slurred. She was frightened of standing after getting off the loo, even while grasping the fire pole, asked to sit again but on the shower chair, then agreed to the wheel chair when I suggested it, wheeled her out to the TV room, where she decided to remain in the wheel chair rather than her recliner. She says she does not know what to do with her feet. I went back out to query what she meant by that but she needed to be wheeled into the loo again (35 minutes after the last time). She seems unable to explain her feet at the moment except that there is very slight tingling when her feet are on the floor but when on the wheelchair foot rests the tingling almost disappears. She spontaneously made a comment about her hands "feeling thick and awkward; haven't felt like that in years, in the early years of my PD". She sees this as a change for the worse, I really hope not. That's 22 years ago.
I left her with another glass of soda water.
0345 200ml; 0530 150ml; 0615 250ml; 0800 170ml; 1230 concurrent with bowel movement; 1430 140ml; 1500 125ml; 1630 100ml; 1830 200ml, 2200 75ml
Thursday 24th:
0030 170ml; 0400 200ml; 0630 150ml
During this same period, I gave her the following fluids:
0915 250ml fruit juice; 1100 250ml soda water; 1200 250ml soda water; 1400 250ml soda water; 1630 250ml soda water; 1830 250ml soda water
The data gathering ceased for the remainder of Thursday because we went to see Polly the PD nurse and the Considerate Neuro in Hot Air City. On Friday I kept her 250ml glass filled with soda water until our supplies ran out. She used the commode only twice early Friday and once early Saturday mornings. So yesterday I almost felt alive during the day.
But yesterday I left her to maintain her own fluid intake. Last night she needed to sit on the commode six (6!) times between 0300 and 0647, each time needing assistance to get out of bed onto the commode. And this commode is too high for her; a replacement for the previous one on which one of the brakes was unreliable, so the replacement will need to be returned. Anyway, today I feel like lifeless excrement.
After last Sunday's close misadventure, I decided we should shop early then go to the Club for lunch. So over to the large hardware store near the 4 lane over-pass to buy a wall mounted remote controlled fan so that she is able to have a breeze on her face now that warmer weather is here. Wall mounting is preferable to the remote controlled pedestal fan she currently uses, reducing clutter and power cords in the TV room. I think I will buy another for her for the bedroom. The fan sounds a little like a 747 with reverse thrust applied but we should grow used to it.
Then to her favourite local rag shop where her left leg began collapsing, so she had to be seated on the walker while I paid for the goods. Once around at the Club she was able to walk in pushing her walker. We stayed awhile, too long perhaps, having her 2pm meds before we left, her being pushed in the walker. Around to the mall. While she remained in the car, I bought some groceries and picked up some meds for both of us at the chemist. She is now sewing. Each time I pass I fill up her 250ml glass with soda water. I decided on soda water because it is simply carbonated water, rather than sugar flavoured water with additives such as quinine, dyes etc. although there is a small quantity of sodium.
Last Thursday our visit to the Neuro was a little confusing. He seemed to think she was presently taking more L-dopa than she actually is and when he briefly looked at the X-ray scans of her back (I borrowed them from our local hospital) he said they were not applicable since the tingles and pains were in her left leg, not the right side where her spine shows some wear and tear. He had little time available to make changes to either meds or apomine, so we need to return on Monday. I am sure I heard him say something like "polyneuropathy" in the few words he said. The Neuro queried her blood pressure at 5 and 10 minutes following a bolus dose. No one had mentioned a possible BP change following a bolus, so on Friday she had a bolus at 1312 when her BP was 146/98 67; at 1320 145/98 57 and at 1324 158/93 60; these are all a little higher than usual.
At the moment, she is off so much within 1 1/2 hours of conventional meds times that I wonder whether the apomine is having any impact at all. When I ask, she doubts whether she experiences any benefit from the apomine. On the other hand, yesterday she asked for a bolus at 1300 and agin at 2100; today at 0306 and 1245. She agreed when I suggested that she must feel some benefit from a bolus since she asks for it.
When hand sewing, she sometimes remarks that her hands are too sluggish or "fluffy" to continue working.
She just called me (1745, 15 minutes before her meds), she had not noticed the time while seated at the kitchen table doing hand sewing, she was very much OFF and frozen, was unable to stand but with assistance she was able to push her trolley into the loo, all the while breathing strongly through her nostrils like a frightened animal. Her speech is thick, slightly slurred. She was frightened of standing after getting off the loo, even while grasping the fire pole, asked to sit again but on the shower chair, then agreed to the wheel chair when I suggested it, wheeled her out to the TV room, where she decided to remain in the wheel chair rather than her recliner. She says she does not know what to do with her feet. I went back out to query what she meant by that but she needed to be wheeled into the loo again (35 minutes after the last time). She seems unable to explain her feet at the moment except that there is very slight tingling when her feet are on the floor but when on the wheelchair foot rests the tingling almost disappears. She spontaneously made a comment about her hands "feeling thick and awkward; haven't felt like that in years, in the early years of my PD". She sees this as a change for the worse, I really hope not. That's 22 years ago.
I left her with another glass of soda water.
posted by Kilpike | 6:34 pm
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