Chapter 233 - Developments That Bother Me
On Sunday a week ago she handed me her very thick PD book "The Parkinson's Disease Treatment Book" by Ahlskog to read Chapter 17, "Movement Problems That Develop Later" as I was going to bed about 11PM. I did so, marking sentences & paragraphs as I went, then had to read a novel until 2AM to unwind my head. On Monday morning I suggested she take her 6AM Sinemet & Sifrol E, skip the 9AM dose of Sinemet but take the 9AM dose of Sinemet CR . I time charted the effects on her, perhaps a little cruel, but after reading that chapter I needed to see the impact of changing her dosages. By 3PM she was back taking her regular dosages. Between 6AM & noon she had three "feelings of release" each preceded by a brief period of dystonia/dyskinesia/tremor/shakes (experts may choose the appropriate word) with intense discomfort.
I was able to determine that kick-in for the 6AM Sinemet was 30 minutes, at 1PM 50 minutes, at 3PM 80 minutes, at 6PM 60 minutes. On re-reading Ahlskog's comments about food intake I realised that, in my own words, she should not take PD meds within 2 hours of COMPLETING a meal and she should not eat within AT LEAST 30 minutes of taking PD meds. Well, I think that is what he says. So, look at this example, she takes PD meds every 3 hours during the day because longer between doses of Sinemet is uncomfortable for her. She has a dose at 6PM, thus cannot have an evening meal before 6:30PM which then needs to be completed by 7PM so that she can take 9PM meds 2 hours later. Similar problem at lunch time. Of course, the impact of food depends a lot on the amount of protein in it. To my mind this timing explains so much of her problems. Also, Ahlskog suggests that slow release Sinemet (when he wrote he must have been unaware of Sifrol & Sifrol E) is unreliable & erratic because of the "stickiness" of the pill, how readily it remains in the stomach for a period of time even though the stomach empties into the small intestine after food processing in the stomach (if I understand his comments correctly).
Following the experiment mentioned above, she decided to gradually change her meds regime to:
0600 1+1/2 Sinemet, 1 Sifrol, 1 Deralin
0800 1 sinemet CR
0900 1+1/2 Sinemet
1000 1 Deralin
1200 1+1/2 Sinemet 1 Sifrol
1400 1 Deralin
1500 1+1/2 Sinemet
1600 1 Sinemet CR
1800 1+1/2 Sinemet ! Sifrol, 1 Deralin
2100 1 Sinemet
2400 1/2 Sinemet, 1 Sinemet CR
Last Wednesday we drove to Coota to meet with our friends, from further south west, at the local RSL club. None of us had been there before. The day was brightly sunny for a change, the drive uneventful, even though once we left the 4 lane the country road was narrow & twisting. After an enjoyable lunch & lots of talking we drove home the way we came (I had contemplated taking a slightly longer better road) to arrive home at dusk. She didn't go to the loo between leaving at 9AM & arriving home at 5PM; whereas I went twice. Going for so long while with a UTI is not good for her. Our friend has lost weight so that his face is gaunt; he continues being positive about his problems.
Since discontinuing Vitamin C after 6PM & taking the single Vitamin E early she usually does not go to the toilet after midnight, sometimes once. However, on several nights she has gone about every 15 minutes around 11PM.
Saturday morning I rose early, washed her commode basin & then after her first void around 6AM I tested for UTI. I was surprised that the nitrite tab turned bright pink almost immediately whereas the leukocyte tab only changed colour slightly. I also noticed that the protein tab had also turned to a darker green, indicating at least a trace of protein. She had returned to sleep after her 6Am meds & around 0845 I went to her because I heard her talking & snorting loudly in her sleep. At 0845 she woke, rose and then as she came into the living area she complained of the noise from the fleuro pedestal lamp (I had left it on after photographing the UTI stick). I was unable to hear a noise from the lamp. She was slightly glassy eyed, Then she complained of a slight ache at the back of her head as I turned the lamp off. She continued to hear the noise in both ears. She was able to move OK, I had her poke out her tongue, it was straight, a stroke test I was told. Her headache gradually faded away. The noise in her ears continued. Yesterday, Sunday, I again did a UTI test, the indications were the same.
Did I mention that she completed a wall hanging with a Japanese theme & now she is putting the finishing touches to a quilt? I marvel at her ability to use the upper half of her body yet the bottom half is so troublesome. Although in saying that, she is living with more than is obvious to the casual observer. A few nights ago we were laying in each others arms; she had gone to sleep, her left arm cradling my head. Every so often her left arm would tense and flinch, then tighten on the back of my neck; enough to be uncomfortable for me. I wondered how I would feel using her body for a short time; I suspect I would not enjoy the experience.
This morning I made an appointment for her to see the Sub Continent doctor; our usual doctor is booked solid.
I was able to determine that kick-in for the 6AM Sinemet was 30 minutes, at 1PM 50 minutes, at 3PM 80 minutes, at 6PM 60 minutes. On re-reading Ahlskog's comments about food intake I realised that, in my own words, she should not take PD meds within 2 hours of COMPLETING a meal and she should not eat within AT LEAST 30 minutes of taking PD meds. Well, I think that is what he says. So, look at this example, she takes PD meds every 3 hours during the day because longer between doses of Sinemet is uncomfortable for her. She has a dose at 6PM, thus cannot have an evening meal before 6:30PM which then needs to be completed by 7PM so that she can take 9PM meds 2 hours later. Similar problem at lunch time. Of course, the impact of food depends a lot on the amount of protein in it. To my mind this timing explains so much of her problems. Also, Ahlskog suggests that slow release Sinemet (when he wrote he must have been unaware of Sifrol & Sifrol E) is unreliable & erratic because of the "stickiness" of the pill, how readily it remains in the stomach for a period of time even though the stomach empties into the small intestine after food processing in the stomach (if I understand his comments correctly).
Following the experiment mentioned above, she decided to gradually change her meds regime to:
0600 1+1/2 Sinemet, 1 Sifrol, 1 Deralin
0800 1 sinemet CR
0900 1+1/2 Sinemet
1000 1 Deralin
1200 1+1/2 Sinemet 1 Sifrol
1400 1 Deralin
1500 1+1/2 Sinemet
1600 1 Sinemet CR
1800 1+1/2 Sinemet ! Sifrol, 1 Deralin
2100 1 Sinemet
2400 1/2 Sinemet, 1 Sinemet CR
Last Wednesday we drove to Coota to meet with our friends, from further south west, at the local RSL club. None of us had been there before. The day was brightly sunny for a change, the drive uneventful, even though once we left the 4 lane the country road was narrow & twisting. After an enjoyable lunch & lots of talking we drove home the way we came (I had contemplated taking a slightly longer better road) to arrive home at dusk. She didn't go to the loo between leaving at 9AM & arriving home at 5PM; whereas I went twice. Going for so long while with a UTI is not good for her. Our friend has lost weight so that his face is gaunt; he continues being positive about his problems.
Since discontinuing Vitamin C after 6PM & taking the single Vitamin E early she usually does not go to the toilet after midnight, sometimes once. However, on several nights she has gone about every 15 minutes around 11PM.
Saturday morning I rose early, washed her commode basin & then after her first void around 6AM I tested for UTI. I was surprised that the nitrite tab turned bright pink almost immediately whereas the leukocyte tab only changed colour slightly. I also noticed that the protein tab had also turned to a darker green, indicating at least a trace of protein. She had returned to sleep after her 6Am meds & around 0845 I went to her because I heard her talking & snorting loudly in her sleep. At 0845 she woke, rose and then as she came into the living area she complained of the noise from the fleuro pedestal lamp (I had left it on after photographing the UTI stick). I was unable to hear a noise from the lamp. She was slightly glassy eyed, Then she complained of a slight ache at the back of her head as I turned the lamp off. She continued to hear the noise in both ears. She was able to move OK, I had her poke out her tongue, it was straight, a stroke test I was told. Her headache gradually faded away. The noise in her ears continued. Yesterday, Sunday, I again did a UTI test, the indications were the same.
Did I mention that she completed a wall hanging with a Japanese theme & now she is putting the finishing touches to a quilt? I marvel at her ability to use the upper half of her body yet the bottom half is so troublesome. Although in saying that, she is living with more than is obvious to the casual observer. A few nights ago we were laying in each others arms; she had gone to sleep, her left arm cradling my head. Every so often her left arm would tense and flinch, then tighten on the back of my neck; enough to be uncomfortable for me. I wondered how I would feel using her body for a short time; I suspect I would not enjoy the experience.
This morning I made an appointment for her to see the Sub Continent doctor; our usual doctor is booked solid.
posted by Kilpike | 9:16 am
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