Chapter 385 - A $300 Saving
Yes, our monthly saving now that she is on DuoDopa is about $300. Why? We no longer need a kit of infusion needles, syringes and saline, and no more Opsites to cover the inserted needles. Chemist costs (for we poor aging pensioners) are the same, thank goodness, for Apomorphine and for DuoDopa. She is capable of handling the procedures for operating the DuoDopa pump, although up till now I have always been present for any changes but that will change.
At first she responded well to DuoDopa but not now. She is unable to walk; perhaps I discourage her for fear of falling; each afternoon her legs become very dyskinetic, foot tingling and leg burning are nearly always present, she experiences "breathing difficulties" tending toward panic attacks each day when she needs more fluids, water, fruit juice or soft drinks. Her 3 ball breathing exerciser forces her to breathe deeply, reducing the feeling of suffocation.
Her blood pressure can be either high or low as a "breathing difficulty" begins. At 1515 Thursday 14th after coming home from our PD meeting and lunch at the Club I noted "1515 breathing becoming difficult", then "1545 Cassette changed, onset of panic attack, very out of breath, sucking on ball machine, very dry mouth, needing to drink", then "1600 153/111 70", then "1645 to piddle, feeling cold, needed hoody, head tingles etc., feet mild dyskinesia."
Similarly, on Friday 15th "1630 Changed cassette", "1735 Called me for breathing problems, leg dyskinesia severe, BP 153/83 73" "1805 Quietened but legs still dyskinetic", "1900 Did not eat much of fish or broccoli", "1930 Legs burning", "2045 Stressing, trouble breathing, on loo, into bed", "2130 Easing".
Perhaps I have taken BP readings too late after the "breathing difficulties" commence. Yesterday, Saturday 16th "0849 Left leg burning, not shaky but twisted inwards", "0900 Video of BP reading 94/47/67 sitting and standing when felt need to go backwards so sat again into wheel chair." "1005 BP 116/83/67 (cuff) 120/61/69 (wrist) Feeling slightly breathless.", "1012 Left leg burning, "1050 still feels choked up due to breathing problem." "1140 still feeling the same." "1245 Feeling tired & out of breath, no legs shaking, left foot twisted. BP wrist 92/60/62, cuff 80/44/65.", "1340 Feels exhausted, out of breath.", "1345 Soup and hot chocolate.", "1405 Into bed.", "1450 Asleep." , "1510 Up & about. Pump off to replace cassette.", "1515 Cassette changed & restart, slight headache over right eye. BP cuff 137/59/67 wrist 128/56/56.", "1545 Out of breath, slightly.", 1615 Chest getting tight, ears drumming, pulsating, face feels hot.", "1705 legs dyskinetic.", "1730 Meal.", " 1800 Starting to stress, legs dyskinetic, to loo by self on wheel chair.", "1815 Called me, wheel chaired her to bed," , " 1820 BP 154/78/77 Legs still, breathless." , "1900 Sleeping.", " 2015 "Wheel chaired her to loo.", "2040 Very dyskinetic, back to bed." , "2200 Pump off, cassette disconnected, sleep."
Anyway, yesterday was not a good day for her. She is attempting to remodel a vest bought a few days ago to support the DupDopa pump which is much larger and heavier than the Apomorphine pump. Today is her second day with the task.
Last Wednesday she attended a clinic at West Beer. Another wrist monitor for her tremors is on its way in the post but failed to arrive by Friday.
Last Thursday we attended our Parky Group when a very experienced person from Big Smoke spoke very practically about Parkies and Carers. I learned something I had never heard of before, that Parkies tend to procrastinate when asked questions or following directions or beginning another task before completing the previous one ( this is my understanding of what was said and how my Parkie behaves). This explains why I am often driven to distraction when she drifts from one task to another, forgets to answer questions or only partially. As when I ask about her legs, feet etc and she will reply "OK" or "burning" or "tingling" when I expect her to answer with "Left leg burning, toes of right foot tingling" and suchlike. I must be patient in future. And anyway, what use are these notes I make?
Next post I must note the DuoDopa pump settings.
At first she responded well to DuoDopa but not now. She is unable to walk; perhaps I discourage her for fear of falling; each afternoon her legs become very dyskinetic, foot tingling and leg burning are nearly always present, she experiences "breathing difficulties" tending toward panic attacks each day when she needs more fluids, water, fruit juice or soft drinks. Her 3 ball breathing exerciser forces her to breathe deeply, reducing the feeling of suffocation.
Her blood pressure can be either high or low as a "breathing difficulty" begins. At 1515 Thursday 14th after coming home from our PD meeting and lunch at the Club I noted "1515 breathing becoming difficult", then "1545 Cassette changed, onset of panic attack, very out of breath, sucking on ball machine, very dry mouth, needing to drink", then "1600 153/111 70", then "1645 to piddle, feeling cold, needed hoody, head tingles etc., feet mild dyskinesia."
Similarly, on Friday 15th "1630 Changed cassette", "1735 Called me for breathing problems, leg dyskinesia severe, BP 153/83 73" "1805 Quietened but legs still dyskinetic", "1900 Did not eat much of fish or broccoli", "1930 Legs burning", "2045 Stressing, trouble breathing, on loo, into bed", "2130 Easing".
Perhaps I have taken BP readings too late after the "breathing difficulties" commence. Yesterday, Saturday 16th "0849 Left leg burning, not shaky but twisted inwards", "0900 Video of BP reading 94/47/67 sitting and standing when felt need to go backwards so sat again into wheel chair." "1005 BP 116/83/67 (cuff) 120/61/69 (wrist) Feeling slightly breathless.", "1012 Left leg burning, "1050 still feels choked up due to breathing problem." "1140 still feeling the same." "1245 Feeling tired & out of breath, no legs shaking, left foot twisted. BP wrist 92/60/62, cuff 80/44/65.", "1340 Feels exhausted, out of breath.", "1345 Soup and hot chocolate.", "1405 Into bed.", "1450 Asleep." , "1510 Up & about. Pump off to replace cassette.", "1515 Cassette changed & restart, slight headache over right eye. BP cuff 137/59/67 wrist 128/56/56.", "1545 Out of breath, slightly.", 1615 Chest getting tight, ears drumming, pulsating, face feels hot.", "1705 legs dyskinetic.", "1730 Meal.", " 1800 Starting to stress, legs dyskinetic, to loo by self on wheel chair.", "1815 Called me, wheel chaired her to bed," , " 1820 BP 154/78/77 Legs still, breathless." , "1900 Sleeping.", " 2015 "Wheel chaired her to loo.", "2040 Very dyskinetic, back to bed." , "2200 Pump off, cassette disconnected, sleep."
Anyway, yesterday was not a good day for her. She is attempting to remodel a vest bought a few days ago to support the DupDopa pump which is much larger and heavier than the Apomorphine pump. Today is her second day with the task.
Last Wednesday she attended a clinic at West Beer. Another wrist monitor for her tremors is on its way in the post but failed to arrive by Friday.
Last Thursday we attended our Parky Group when a very experienced person from Big Smoke spoke very practically about Parkies and Carers. I learned something I had never heard of before, that Parkies tend to procrastinate when asked questions or following directions or beginning another task before completing the previous one ( this is my understanding of what was said and how my Parkie behaves). This explains why I am often driven to distraction when she drifts from one task to another, forgets to answer questions or only partially. As when I ask about her legs, feet etc and she will reply "OK" or "burning" or "tingling" when I expect her to answer with "Left leg burning, toes of right foot tingling" and suchlike. I must be patient in future. And anyway, what use are these notes I make?
Next post I must note the DuoDopa pump settings.
posted by Kilpike | 11:40 am
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