Chapter 386 - Still Early Days, I Hope
Rather than read through all my notes for the last few weeks, I will begin by copying abbreviated notes emailed to the PD people at West Beer Hospital. These notes were emailed rather report by phone as requested. I don't know how to summarise such an amount meaningfully into a sound bite or two in the middle of a busy day of a professional.
Thursday 14 May 1515 Breathing becoming difficult, lay on bed.
1545 Cassette replaced. Breathing very difficult, used 3 ball breathing exerciser.
1600 Blood Pressure 153/111 Pulse 70.
1645 On wheelchair to toilet, feeling cold, head tingling, legs mild dyskinesia.
Friday 15 May 1630 Replaced cassette.
1735 Breathing problems. Severe leg dyskinesia. Head twisting. Stomach "churned". Blood Pressure 153/83 73. Used breathing exerciser.
1805 Quietened but legs still dyskinetic.
1930 Legs burning.
2045 Breathing difficulties, into bed.
Saturday 16 May 0849 Left leg burning, no shaking but twisted inwards.
0900 On standing from chair, a sense of falling backwards. Blood Pressure 94/47 67.
1005 Feeling breathless Blood Pressure 116/83 67 (by cuff) and 120/61 69 (by wrist).
1012 Left leg burning.
1050 Still feels "choked up" due to breathing problems.
1245 Feeling tired. Out of breath. Left foot twisted. Blood Pressure 80/44 65 (cuff) 92/60 63 (wrist).
1340 Feeling exhausted. Out of breath.
1405 After some food into bed and sleep.
1510 Up and about in wheelchair. Blood Pressure 137/59 67 (cuff), 128/56 56 (wrist).
1545 Out of breath.
1615 Chest tight, ears drumming/pulsating, face hot.
1705 Legs dyskinetic.
1800 Starting to stress, legs dyskinetic. To toilet by self.
1800 Needed wheel chair assistance to bed.
1820 Blood Pressure 154/78 77. Legs stationary. Breathless.
2040 Wheel chair assistance to toilet, very dyskinetic. Return to bed.
Sunday 17 May 0945 Cheerful, left leg burns sometimes.Using sewing machine. Blood Pressure 88/42 57 (cuff) 96/63 69 (wrist). Her speech is "thick".
1150 Experiment: Pressed "extra dose" for BOLUS . Still at sewing machine. Toes both feet tingling. Left foot twisted. Head OK. Not breathless. Can stand with some difficulty, feels unstable. Speech is "thick".
1210 Lunch.
1230 Toes tingling. Left foot feels heavy. Head OK. Suddenly burning up left leg.
1300 Trouble catching breath. Blood Pressure 99/50 62 (cuff).
1309 Difficulty using the breathing exerciser. Tiring. Speech slurred.
1345 Feels awful. Out of breath.
1358 Blood Pressure 132/62 60. Fingers of right hand spreading. Stomach churning.
1420 Assist to toilet . Head thumping yet not really a headache.
1536 Assist to toilet. Returned to bed. Feels faint. Dry mouth. No dyskinesia. Blood Pressure 187/92 58 (cuff).
1552 Tired. feet pulsating, breathing heavily. Ears pulsating. Heart pounding. Says area where Apomine needles were sited is sore.
Monday 18 May 0605 Blood Pressure 189/93 61 (cuff) 150/99 65 (wrist) 201/98/ 63 (cuff) while laying on bed.
0730 Discovered that she has only taken 2 only Deralin 40 per day since leaving hospital. Should be 3 only.
0740 Blood Pressure 117/84 64 (cuff on right arm).
0850 Took Deralin 40.
1025 Blood Pressure 93/62 69 (wrist).
1032 Left leg collapsed while cleaning teeth. Called for help. Did not fall.
1130 Saw Clinic Nurse at Dr's surgery, stoma OK.
1330 Panic attack symptoms.
1500 Attached tremor wrist monitor. Took Deralin 40.
1515 Still hard to breathe.
1530 Cassette replaced.
2210 Took Deralin 40.
Tuesday 19 May 0614 Incontinence pants were dry, most unusual.
0950 Took Deralin 40.
1000 Day Respite till 1400.
1400 took Deralin 40.
2230 Took Deralin 40 and Sinemet CR.
No other notes of interest made.
Wednesday 20 May 1120 Blood Pressure 119/58 59 (cuff).
1230 Legs very dyskinetic following sit-stands following physio visit .
1410 About to go down street, so replaced cassette early. Legs, head, body all very dyskinetic. Also sweating and panting but not "out of breath". Able to get into car without difficulty. Pushed around shops in wheel chair.
1800 Mild leg dyskinesia of legs for remainder of evening.
Puzzled by her reasonable performance in the hospital, I questioned what we had been doing, assuming she had been following the new meds schedule I had prepared. Instead she had dropped an extra Deralin 40, only taking two each day, because that was the quantity given her by the hospital. Once she took another Deralin 40 the panic attack symptoms mostly disappeared. Note that I said "mostly", but on the whole life has returned to what we call "normal" these days.
Her dyskinesias seem more extreme than in the past, although they seem more free, looser than before and involve her head a lot. If anything her left foot/ankle are weaker and more distonic than before DuoDopa. Her left ankle is tending to roll more and I'm afraid she may do it serious injury by attempting to stand, impossible for transfers to and from the loo.
Twice I took her down to our doctor's surgery to check the weeping of her stoma but matters were normal to the clinic nurse.
Most mornings she does not wake when the alarm sounds at 0500 when I rise to retrieve a DuoDopa cassette from the 35L car fridge I bought to house one months supply which takes up too much space in our 'fridge. One of the small practical details, along with light sensitivity, learned after committing to the drug. Then I return to bed with the cassette absorbing some of my body heat until 0600 (unless I doze off again :-) when I attach the pump and cassette to her PEG tube. Usually she does not wake. I then force myself to do Wii Fit Hula Hoops followed by 3km of treadmill before preparing breakfast. A Wild Dog Carer arrives about 0800 when she presses the pump for a bolus dose to tide her over while she is showered. So another day begins.
A wrist monitor for her varied shakes arrived mid-afternoon Monday 18th and was immediately fitted. The monitor was mailed back the following Monday.
Last Wednesday we returned to a clinic morning at West Beer where she was put through her paces by Dr N and CNC J. I heard him say "L5" frequently while he manipulated her left leg. Between the 2 of them they man handled her to awkwardly walk. Dr N. asked for the name of neurosurgeon Dr M. at Hot Air City, presumably to send him a report for when we see him in a few weeks. When I asked about more weaning of the Deralin I was advised to break a 40mg tablet into two and reduce her intake by 20mg per month. They decided that her DuoDopa flow rate be reduced from 7.1 to 7.0mg/hour.
Since then she seems not to need as much assistance, although I have not been noting as well as I should but her need for assistance to the loo has decreased. We have been gong down the street as much as possible; she still relies on the wheel chair, we have a coffees and milkshakes, and we shop a little. Like yesterday, rather than leave her at home while I bought an ink cartridge for her printer, she came as well then we visited Kmart and Target so in all we spent about $200. Some was for more vests with which she struggles with the first bought some weeks ago to fit a lining and add a pocket for the DuoDopa pump. Today I'm attempting to have her complete a simpler design.
Afternoons remain her worst times of the day, dyskinesias begin between 1400 and 1500 then drag on until she goes to bed. She had reduced the Deralin to 20mg at 0600; from today she schedules that half dose to 1400 as shown below.
Thursday 14 May 1515 Breathing becoming difficult, lay on bed.
1545 Cassette replaced. Breathing very difficult, used 3 ball breathing exerciser.
1600 Blood Pressure 153/111 Pulse 70.
1645 On wheelchair to toilet, feeling cold, head tingling, legs mild dyskinesia.
Friday 15 May 1630 Replaced cassette.
1735 Breathing problems. Severe leg dyskinesia. Head twisting. Stomach "churned". Blood Pressure 153/83 73. Used breathing exerciser.
1805 Quietened but legs still dyskinetic.
1930 Legs burning.
2045 Breathing difficulties, into bed.
Saturday 16 May 0849 Left leg burning, no shaking but twisted inwards.
0900 On standing from chair, a sense of falling backwards. Blood Pressure 94/47 67.
1005 Feeling breathless Blood Pressure 116/83 67 (by cuff) and 120/61 69 (by wrist).
1012 Left leg burning.
1050 Still feels "choked up" due to breathing problems.
1245 Feeling tired. Out of breath. Left foot twisted. Blood Pressure 80/44 65 (cuff) 92/60 63 (wrist).
1340 Feeling exhausted. Out of breath.
1405 After some food into bed and sleep.
1510 Up and about in wheelchair. Blood Pressure 137/59 67 (cuff), 128/56 56 (wrist).
1545 Out of breath.
1615 Chest tight, ears drumming/pulsating, face hot.
1705 Legs dyskinetic.
1800 Starting to stress, legs dyskinetic. To toilet by self.
1800 Needed wheel chair assistance to bed.
1820 Blood Pressure 154/78 77. Legs stationary. Breathless.
2040 Wheel chair assistance to toilet, very dyskinetic. Return to bed.
Sunday 17 May 0945 Cheerful, left leg burns sometimes.Using sewing machine. Blood Pressure 88/42 57 (cuff) 96/63 69 (wrist). Her speech is "thick".
1150 Experiment: Pressed "extra dose" for BOLUS . Still at sewing machine. Toes both feet tingling. Left foot twisted. Head OK. Not breathless. Can stand with some difficulty, feels unstable. Speech is "thick".
1210 Lunch.
1230 Toes tingling. Left foot feels heavy. Head OK. Suddenly burning up left leg.
1300 Trouble catching breath. Blood Pressure 99/50 62 (cuff).
1309 Difficulty using the breathing exerciser. Tiring. Speech slurred.
1345 Feels awful. Out of breath.
1358 Blood Pressure 132/62 60. Fingers of right hand spreading. Stomach churning.
1420 Assist to toilet . Head thumping yet not really a headache.
1536 Assist to toilet. Returned to bed. Feels faint. Dry mouth. No dyskinesia. Blood Pressure 187/92 58 (cuff).
1552 Tired. feet pulsating, breathing heavily. Ears pulsating. Heart pounding. Says area where Apomine needles were sited is sore.
Monday 18 May 0605 Blood Pressure 189/93 61 (cuff) 150/99 65 (wrist) 201/98/ 63 (cuff) while laying on bed.
0730 Discovered that she has only taken 2 only Deralin 40 per day since leaving hospital. Should be 3 only.
0740 Blood Pressure 117/84 64 (cuff on right arm).
0850 Took Deralin 40.
1025 Blood Pressure 93/62 69 (wrist).
1032 Left leg collapsed while cleaning teeth. Called for help. Did not fall.
1130 Saw Clinic Nurse at Dr's surgery, stoma OK.
1330 Panic attack symptoms.
1500 Attached tremor wrist monitor. Took Deralin 40.
1515 Still hard to breathe.
1530 Cassette replaced.
2210 Took Deralin 40.
Tuesday 19 May 0614 Incontinence pants were dry, most unusual.
0950 Took Deralin 40.
1000 Day Respite till 1400.
1400 took Deralin 40.
2230 Took Deralin 40 and Sinemet CR.
No other notes of interest made.
Wednesday 20 May 1120 Blood Pressure 119/58 59 (cuff).
1230 Legs very dyskinetic following sit-stands following physio visit .
1410 About to go down street, so replaced cassette early. Legs, head, body all very dyskinetic. Also sweating and panting but not "out of breath". Able to get into car without difficulty. Pushed around shops in wheel chair.
1800 Mild leg dyskinesia of legs for remainder of evening.
Puzzled by her reasonable performance in the hospital, I questioned what we had been doing, assuming she had been following the new meds schedule I had prepared. Instead she had dropped an extra Deralin 40, only taking two each day, because that was the quantity given her by the hospital. Once she took another Deralin 40 the panic attack symptoms mostly disappeared. Note that I said "mostly", but on the whole life has returned to what we call "normal" these days.
Her dyskinesias seem more extreme than in the past, although they seem more free, looser than before and involve her head a lot. If anything her left foot/ankle are weaker and more distonic than before DuoDopa. Her left ankle is tending to roll more and I'm afraid she may do it serious injury by attempting to stand, impossible for transfers to and from the loo.
Twice I took her down to our doctor's surgery to check the weeping of her stoma but matters were normal to the clinic nurse.
Most mornings she does not wake when the alarm sounds at 0500 when I rise to retrieve a DuoDopa cassette from the 35L car fridge I bought to house one months supply which takes up too much space in our 'fridge. One of the small practical details, along with light sensitivity, learned after committing to the drug. Then I return to bed with the cassette absorbing some of my body heat until 0600 (unless I doze off again :-) when I attach the pump and cassette to her PEG tube. Usually she does not wake. I then force myself to do Wii Fit Hula Hoops followed by 3km of treadmill before preparing breakfast. A Wild Dog Carer arrives about 0800 when she presses the pump for a bolus dose to tide her over while she is showered. So another day begins.
A wrist monitor for her varied shakes arrived mid-afternoon Monday 18th and was immediately fitted. The monitor was mailed back the following Monday.
Last Wednesday we returned to a clinic morning at West Beer where she was put through her paces by Dr N and CNC J. I heard him say "L5" frequently while he manipulated her left leg. Between the 2 of them they man handled her to awkwardly walk. Dr N. asked for the name of neurosurgeon Dr M. at Hot Air City, presumably to send him a report for when we see him in a few weeks. When I asked about more weaning of the Deralin I was advised to break a 40mg tablet into two and reduce her intake by 20mg per month. They decided that her DuoDopa flow rate be reduced from 7.1 to 7.0mg/hour.
Since then she seems not to need as much assistance, although I have not been noting as well as I should but her need for assistance to the loo has decreased. We have been gong down the street as much as possible; she still relies on the wheel chair, we have a coffees and milkshakes, and we shop a little. Like yesterday, rather than leave her at home while I bought an ink cartridge for her printer, she came as well then we visited Kmart and Target so in all we spent about $200. Some was for more vests with which she struggles with the first bought some weeks ago to fit a lining and add a pocket for the DuoDopa pump. Today I'm attempting to have her complete a simpler design.
Afternoons remain her worst times of the day, dyskinesias begin between 1400 and 1500 then drag on until she goes to bed. She had reduced the Deralin to 20mg at 0600; from today she schedules that half dose to 1400 as shown below.
| Schedule from Monday 1st June 2015 | ||||||||||
| 06:00 | Duodopa ON | Rate 7.0 Bolus 2.0 Morning 14.0 | Deralin 40 | |||||||
| 08:00 | Apo-Macrogol 13.72g | Motilium 10 | Caltrate 200 | Vit C 1000 | Vit D 1000iu | Magmin 500 | ||||
| 14:00 | Deralin 20 | |||||||||
| 22:00 | Duodopa OFF | Sinemet CR 200/50 | Lexapro 20 | Deralin 40 |
posted by Kilpike | 11:00 am
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