Chapter 330 - Am I Doing Something Wrong?
I must ask the question. Have I done something wrong? Each morning, before it beeps on empty, I turn off the pump, recording time and pump reading of remaining fluid, removing the infusion point, squeezing the area to remove the stagnant fluid (along with a little blood), applying some cream then applying a hand held vibrator to the infusion area after which she has a shower. Can I make a mistake sucking 8ml of Apomine out of four glass ampules and 12ml of saline out of two plastic ampules into a 20ml syringe, attaching same to the Apo pump, ensuring no air bubbles, priming it with the cannula attached, swabbing a new spot on her tummy, pressing the needle in, covering same with plastic adhesive sheet, applying cream to previous infusion sites, turning the pump on, recording time and the meter reading on the pump?
To an e-mail from Polly our PD Nurse about my PWP's situation I gave the following response last Wednesday:
********************************************
My PWP says she is always "looking forward' to taking Sinemet etc up to an hour before their due times, and feels better an appropriate time following. Last Saturday & Sunday were bad days for her, (Friday was the day the 10am Sifrol 0.5mg was stopped) needed afternoon naps, and difficulty moving. Her foot/leg tingling & pain seems to be less. Her spacial awareness is worse, often wanting objects moved out of the way. In attempting the LSVT routines her left leg gives her much trouble, requiring a rest, between specific actions, sometimes not completing all of them. This morning she walked, without the aid of her trolley, to the car in our garage on the way to see [New GP] and after we left the surgery she was happy to go to the club for lunch but half way across the street her left leg gave way, she had to sit in the walker, I pushed her to the far side where we decided to go home instead.
[New GP] said just to monitor her water works at this time. On Monday the physios at the hospital advised [PWP] to insert large incontinence pads in her pants at night and to allow "accidents" to happen rather than her stumbling to commode or loo so that both of us have fewer sleep disturbances (yawn). Early days with this approach.
[PWP] has had several freezing episodes. The last was about 5am this morning when she rose to push her trolley to the loo (I was sound asleep through this!). Almost to the bathroom door she froze, managed to grab rails and hand basin to reach the shower chair where she sat until about 5.45am when she could move to sit on the loo. At the beginning of this episode she was able to get a Sinemet 100/25 from the trolley as a "booster" (not a good idea in my opinion, because at 6am she took her normal dose). Anyway, I presume a freezing session is not quite the same as being OFF? And obviously she has yet to overcome her early conditioning about piddling accidents.
Please advise what I can have [PWP] do to check her OFF/ON periods, what is a good indicator that I can time or video so that we all have a quantitative measurement rather than vaguely remembered feelings.
Off to the podiatrist for her feet at 3pm.
*********************************************
As a result of the above, Polly our PD Nurse wants us to see her next Thursday morning.
In the mean time I prepared a table for her to mark at half hourly intervals whether she is ON (a tick) or OFF (a cross), a KISS form without additional items about dyskinesia etc etc.
She ticked 13 only 1/2 hour intervals on the table. In some instances she obviously changed her mind about her condition, although when I queried this some were due to poor eye sight. In my view this is too little ON for the amount of Apomine she is taking. I wonder whether the Apomine is of any benefit to her at all. To this end, somewhen around 4am I decided to leave the Apo pump switched off through this morning to determine whether her ON time is reduced, but we slept too long after a poor night (I'm unsure whether I needed to help or two or three times onto the commode; I have hazy memories of her going to the loo on her own as well) and the pump timed out so I abandoned the idea, as well as the caution of daylight suggesting I should consult Polly our PD Nurse first before such a drastic step. Also my PWP had decided to cancel her 0.5mg of Sifrol at 6am without telling me; well, actually, we had discussed doing so and I thought our decision was to delay such action. So she caught up with the 0.5mg Sifrol at 8am.
Last post I forgot to insert her current schedule:
The reference in the e-mail above was about a mid-stream urine sample I took from her for pathology. Even though I attempted to collect the sample mid-stream while she was seated on the commode chair in the shower recess, the way she is built and the physical restrictions placed on her by the commode, I was unable to obtain a sample clear of any outer skin contamination, if you understand what I mean. So the pathology results were similar to those of a test on 26th November 2013.
The reason for this last urine test was because one morning I forgot to empty the commode and later in the day she noticed that the colour of the contents had become quite dark. So the following morning I had her give a sample in the commode which I photographed several times during that day, 9th February, holding a digital clock in view to record the time. When I showed the images to the New GP he made no response other than asking whether there was any blood or faeces in the bowl. The earliest image shows there wasn't. The change of colour still happens, presumably due to oxidation, but "of what" and why is what I'd like to know.
After pouring off the fluid I found that the "sediment" in the bowl was difficult to wash out using water from the shower rose. The "sediment" is slimy or goo-ey in texture. I assume this is due to medication and probably the Apomine, since we have never seen anything like this before, although, of course, commodes are usually emptied as soon as possible, thus may have been simply overlooked. Although I doubt it.
To compound my fears, yesterday she gathered unwanted "stuff" to be thrown out of her sewing room. One item was "Parkinson's Disease and the Nurse", a 1994 WA edition of the booklet published by the Parkinson's Disease Society, London. She must have been given it by the PD nurse in WA when we lived over there and discovered that such helpful practical professionals existed. Before tossing the booklet, I leafed through it wondering how out of date it was for being 20 years old. I was surprised to find a short summary about apomorphine (although I shouldn't have been, since apomorphine was first used in the 1950's), even to mentioning infusion pumps. Under "side effects" it listed "dose dependant uraemia" which required me to consult Dr Google, and from Wikipedia " Uremia or uraemia (see spelling differences) is the illness accompanying kidney failure (also called renal failure), in particular the nitrogenous waste products associated with the failure of this organ.[1] " Holy Crap Bat Man!! Inspecting the leaflet in each packet of 5 ampules of Apomine for "uraemia" is difficult because of the extremely fine print (protects the patient from undue concerns?) I found I had to scan it to make it readable, without finding the word in question. "Spontaneous penile erection" I disregarded.
A net search associating "uraemia" and "apomorphine" I found portion of a book "Parkinsons Disease and Parkonsonism in the Elderly" which states
Perhaps I'm excited about nothing.
We are unable to find a long enough period for her to do the LSVT BIG exercises, her ON times seem to be so short and she prefers to do more useful things with fabric. Since finishing the formal sessions she has lapsed with her general mobility and especially walking, returning to scuffing her feet even when I speak loudly "One, Two, Big Steps" and the like. And she seems worse than ever standing from a chair.
No changes or experiments until we contact Polly.
Just about to post this when she called me on the CB to show me her left leg, foot slightly twisted inwards, which had an imaginary rope attached pulling her leg sideways. She is seated on her recliner. She was able to lift her left knee, swing her leg sideways without problem, although not very far. When I moved her leg I did not detect stiffness.
Her world is strange to me.
To an e-mail from Polly our PD Nurse about my PWP's situation I gave the following response last Wednesday:
********************************************
My PWP says she is always "looking forward' to taking Sinemet etc up to an hour before their due times, and feels better an appropriate time following. Last Saturday & Sunday were bad days for her, (Friday was the day the 10am Sifrol 0.5mg was stopped) needed afternoon naps, and difficulty moving. Her foot/leg tingling & pain seems to be less. Her spacial awareness is worse, often wanting objects moved out of the way. In attempting the LSVT routines her left leg gives her much trouble, requiring a rest, between specific actions, sometimes not completing all of them. This morning she walked, without the aid of her trolley, to the car in our garage on the way to see [New GP] and after we left the surgery she was happy to go to the club for lunch but half way across the street her left leg gave way, she had to sit in the walker, I pushed her to the far side where we decided to go home instead.
[New GP] said just to monitor her water works at this time. On Monday the physios at the hospital advised [PWP] to insert large incontinence pads in her pants at night and to allow "accidents" to happen rather than her stumbling to commode or loo so that both of us have fewer sleep disturbances (yawn). Early days with this approach.
[PWP] has had several freezing episodes. The last was about 5am this morning when she rose to push her trolley to the loo (I was sound asleep through this!). Almost to the bathroom door she froze, managed to grab rails and hand basin to reach the shower chair where she sat until about 5.45am when she could move to sit on the loo. At the beginning of this episode she was able to get a Sinemet 100/25 from the trolley as a "booster" (not a good idea in my opinion, because at 6am she took her normal dose). Anyway, I presume a freezing session is not quite the same as being OFF? And obviously she has yet to overcome her early conditioning about piddling accidents.
Please advise what I can have [PWP] do to check her OFF/ON periods, what is a good indicator that I can time or video so that we all have a quantitative measurement rather than vaguely remembered feelings.
Off to the podiatrist for her feet at 3pm.
*********************************************
As a result of the above, Polly our PD Nurse wants us to see her next Thursday morning.
In the mean time I prepared a table for her to mark at half hourly intervals whether she is ON (a tick) or OFF (a cross), a KISS form without additional items about dyskinesia etc etc.
She ticked 13 only 1/2 hour intervals on the table. In some instances she obviously changed her mind about her condition, although when I queried this some were due to poor eye sight. In my view this is too little ON for the amount of Apomine she is taking. I wonder whether the Apomine is of any benefit to her at all. To this end, somewhen around 4am I decided to leave the Apo pump switched off through this morning to determine whether her ON time is reduced, but we slept too long after a poor night (I'm unsure whether I needed to help or two or three times onto the commode; I have hazy memories of her going to the loo on her own as well) and the pump timed out so I abandoned the idea, as well as the caution of daylight suggesting I should consult Polly our PD Nurse first before such a drastic step. Also my PWP had decided to cancel her 0.5mg of Sifrol at 6am without telling me; well, actually, we had discussed doing so and I thought our decision was to delay such action. So she caught up with the 0.5mg Sifrol at 8am.
Last post I forgot to insert her current schedule:
The reference in the e-mail above was about a mid-stream urine sample I took from her for pathology. Even though I attempted to collect the sample mid-stream while she was seated on the commode chair in the shower recess, the way she is built and the physical restrictions placed on her by the commode, I was unable to obtain a sample clear of any outer skin contamination, if you understand what I mean. So the pathology results were similar to those of a test on 26th November 2013.
The reason for this last urine test was because one morning I forgot to empty the commode and later in the day she noticed that the colour of the contents had become quite dark. So the following morning I had her give a sample in the commode which I photographed several times during that day, 9th February, holding a digital clock in view to record the time. When I showed the images to the New GP he made no response other than asking whether there was any blood or faeces in the bowl. The earliest image shows there wasn't. The change of colour still happens, presumably due to oxidation, but "of what" and why is what I'd like to know.
After pouring off the fluid I found that the "sediment" in the bowl was difficult to wash out using water from the shower rose. The "sediment" is slimy or goo-ey in texture. I assume this is due to medication and probably the Apomine, since we have never seen anything like this before, although, of course, commodes are usually emptied as soon as possible, thus may have been simply overlooked. Although I doubt it.
To compound my fears, yesterday she gathered unwanted "stuff" to be thrown out of her sewing room. One item was "Parkinson's Disease and the Nurse", a 1994 WA edition of the booklet published by the Parkinson's Disease Society, London. She must have been given it by the PD nurse in WA when we lived over there and discovered that such helpful practical professionals existed. Before tossing the booklet, I leafed through it wondering how out of date it was for being 20 years old. I was surprised to find a short summary about apomorphine (although I shouldn't have been, since apomorphine was first used in the 1950's), even to mentioning infusion pumps. Under "side effects" it listed "dose dependant uraemia" which required me to consult Dr Google, and from Wikipedia " Uremia or uraemia (see spelling differences) is the illness accompanying kidney failure (also called renal failure), in particular the nitrogenous waste products associated with the failure of this organ.[1] " Holy Crap Bat Man!! Inspecting the leaflet in each packet of 5 ampules of Apomine for "uraemia" is difficult because of the extremely fine print (protects the patient from undue concerns?) I found I had to scan it to make it readable, without finding the word in question. "Spontaneous penile erection" I disregarded.
A net search associating "uraemia" and "apomorphine" I found portion of a book "Parkinsons Disease and Parkonsonism in the Elderly" which states
We are unable to find a long enough period for her to do the LSVT BIG exercises, her ON times seem to be so short and she prefers to do more useful things with fabric. Since finishing the formal sessions she has lapsed with her general mobility and especially walking, returning to scuffing her feet even when I speak loudly "One, Two, Big Steps" and the like. And she seems worse than ever standing from a chair.
No changes or experiments until we contact Polly.
Just about to post this when she called me on the CB to show me her left leg, foot slightly twisted inwards, which had an imaginary rope attached pulling her leg sideways. She is seated on her recliner. She was able to lift her left knee, swing her leg sideways without problem, although not very far. When I moved her leg I did not detect stiffness.
Her world is strange to me.
posted by Kilpike | 2:01 pm
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