Chapter 527 - Variations on a Theme
In the hope of taking her to her PD dancing group on Tuesday last I gave her a Bolus dose (2.0 ml) at 0830 but by 0930 the dyskinesias were vigorous, she needed her feet raised onto the recliner and 5 minutes later her head had dropped, she was asleep and of course the dyskinesias stopped. I did not bother to attempt to take her to the group. She woke at 1010 with vigorous dyskinesias. Shortly thereafter she began sorting her drawer of jumpers and put one on, unusual since it is unusual for her to feel cold. The sorting continued until lunch time. Mid afternoon I wheeled her around the village. Shortly after 1700 I had her piddle while on the commode where I collected a sample in a small plastic bowl and tested it with a urine testing stick just in case her recent fluctuations had a UTI cause. In the words of the professionals, I found nothing remarkable. The Duodopa flow rate had been 7.0 ml/hr all day.
Wednesday, my respite escape day, I gave her a Bolus at 0735 in an attempt to fend off sleepiness when the Wild Dog Carer was due at 0930. At 0900 her head drooped and she was asleep until 0925 just as the Carer arrived. I left to attend my Dementia Carer Group meeting, except once there I discovered I was a week early; stupid of me or is this an early sign? When I returned home at 1430 I learned that she had slept for about 15 minutes shortly after 1000. The dyskinesias were vigorous again at 1630, so another Bolus of 2.0 ml as well as rubbing her legs. She nodded off before the end of a movie at 1705.The Duodopa flow rate had been 7.0 ml/hr all day.
Thursday, without attempting any dose rate calculations, I set the Dupdopa flow rate to 7.5 ml/hr. Throughout the morning she looked dopey, saying she was sleepy and she thought she had nodded off briefly before 1130, although I hadn't observed her asleep. Late morning she was plaiting and knotting decorative strings on a pillow bought months ago at the highlands town up the 4 lane. Much of the afternoon she spent "sweeping" the floor of the living and kitchen areas, all the time with vigorous dyskinesias of her legs (only ever of her legs; I may not have specified so over the years) and these were so strong that at 1800 I stopped the pump. Once in bed her legs became still by 1930 so I restarted the pump at the night time rate of 2.0 ml/hr.
Friday I set the flow rate to 7.2 ml/hr. In recent weeks we have enjoyed a quiet day at the Soldier's Club having lunch, reading ebooks so on a cold miserable day we went again. I gave her a Bolus of 2.0 at 1030 when she became sleepy. A large glass of lemonade for her before lunch, then a large Fisherman's Basket ($30 worth although she did not eat the chips!!) with a Lemon Lime and Soda followed later by a large slice of Red Velvet cake and Cappuccino. We returned home about 1600, wild dyskinesias, needing her feet raised, difficulty breathing, room fan on, I rubbed her legs for awhile before stopping the pump at 1645, and not restarting it until 1740 at the night rate of 2.0 ml/hr. She needed the loo so I slid her onto it from the wheel chair. I changed her pants to the night time pull-ups, changed her into a nightie then with much effort helped her stand into the Sara Stedy and put her into bed about an hour before her usual bed time. She was very hot and sweaty, needing both the wall fan and the small personal one. I wiped her face with a flannel before she fell asleep and the dyskinesias stopped at 1820. She woke at 1840 saying she had filled her pants. In a quandary about how to handle this, I decided to wait until 1900 when a Wild Dog Carer was scheduled to help her to bed, hoping that the person to arrive was not one of their inexperienced new hires, and together we would shower her. Fortunately the new hire who arrived was experienced and had been here before. Together we slid her onto the commode then wheeled her into the bath room where I tore off her pull ups to find NOTHING. Luckily for me, the commode pan was beneath her when two enormous stool fell into it. So we re-dressed her with a fresh nightie (the other was damp from sweat) and pull-ups and pad and returned her to bed. At 2045 she was still reading as I went to sleep.
Yesterday, Saturday 10th August, was a bland non-eventful day, no bouts of sleep or dyskinesia. She spent most of the morning doing word puzzles and the afternoon sweeping the floor with the length of dowel with a magnet glued to one end looking for stray pins and needles. Later I found the dowel broken so I have glued it back together.
This morning she has not been sleepy or dyskinetic up to now, 1115. But I have noticed one thing; she has not been tunelessly humming as she normally does during her waking hours at home. I took a while to realise this change, great should it last. She is in her sewing room dressed in T shirt and thin slacks without any house heating even though yesterday at day break there was snow on the lawns of our village.
A script for Exelon patches, which Dr F has prescribed for her, arrived in the post on Friday in a government envelope. The script is stamped "approved". I submitted it to the chemist yesterday to be told the patches are not stocked but will arrive on Monday. Exelon is Rivastigmine, a drug for early stage Alzheimer symptoms which has been found to help with similar symptoms in PD. The skin patch form has less side effects that the capsule form.
I am proceeding through an online course on dementia given by UTAS. Some references to PD suggest there is greater recognition these days that there are elements of dementia involved in PD. Was it 2000 or 2001 when her diagnosing neuro of 1991 had her scanned for Lewy Bodies? I still feel rejected that when I made approaches to local Alzheimer care groups and was told that her PD was a different thing altogether. Fortunately, I was invited to join one group, but even so, at one meeting when I spoke of PD symptoms I was taken aside and asked not to mention Parkinsons because others may think there was a carer in their midst not entitled to be there. And since then the term "Alzheimer's" has been subsumed under the umbrella of "Dementia". A rose by any other name.
Wednesday, my respite escape day, I gave her a Bolus at 0735 in an attempt to fend off sleepiness when the Wild Dog Carer was due at 0930. At 0900 her head drooped and she was asleep until 0925 just as the Carer arrived. I left to attend my Dementia Carer Group meeting, except once there I discovered I was a week early; stupid of me or is this an early sign? When I returned home at 1430 I learned that she had slept for about 15 minutes shortly after 1000. The dyskinesias were vigorous again at 1630, so another Bolus of 2.0 ml as well as rubbing her legs. She nodded off before the end of a movie at 1705.The Duodopa flow rate had been 7.0 ml/hr all day.
Thursday, without attempting any dose rate calculations, I set the Dupdopa flow rate to 7.5 ml/hr. Throughout the morning she looked dopey, saying she was sleepy and she thought she had nodded off briefly before 1130, although I hadn't observed her asleep. Late morning she was plaiting and knotting decorative strings on a pillow bought months ago at the highlands town up the 4 lane. Much of the afternoon she spent "sweeping" the floor of the living and kitchen areas, all the time with vigorous dyskinesias of her legs (only ever of her legs; I may not have specified so over the years) and these were so strong that at 1800 I stopped the pump. Once in bed her legs became still by 1930 so I restarted the pump at the night time rate of 2.0 ml/hr.
Friday I set the flow rate to 7.2 ml/hr. In recent weeks we have enjoyed a quiet day at the Soldier's Club having lunch, reading ebooks so on a cold miserable day we went again. I gave her a Bolus of 2.0 at 1030 when she became sleepy. A large glass of lemonade for her before lunch, then a large Fisherman's Basket ($30 worth although she did not eat the chips!!) with a Lemon Lime and Soda followed later by a large slice of Red Velvet cake and Cappuccino. We returned home about 1600, wild dyskinesias, needing her feet raised, difficulty breathing, room fan on, I rubbed her legs for awhile before stopping the pump at 1645, and not restarting it until 1740 at the night rate of 2.0 ml/hr. She needed the loo so I slid her onto it from the wheel chair. I changed her pants to the night time pull-ups, changed her into a nightie then with much effort helped her stand into the Sara Stedy and put her into bed about an hour before her usual bed time. She was very hot and sweaty, needing both the wall fan and the small personal one. I wiped her face with a flannel before she fell asleep and the dyskinesias stopped at 1820. She woke at 1840 saying she had filled her pants. In a quandary about how to handle this, I decided to wait until 1900 when a Wild Dog Carer was scheduled to help her to bed, hoping that the person to arrive was not one of their inexperienced new hires, and together we would shower her. Fortunately the new hire who arrived was experienced and had been here before. Together we slid her onto the commode then wheeled her into the bath room where I tore off her pull ups to find NOTHING. Luckily for me, the commode pan was beneath her when two enormous stool fell into it. So we re-dressed her with a fresh nightie (the other was damp from sweat) and pull-ups and pad and returned her to bed. At 2045 she was still reading as I went to sleep.
Yesterday, Saturday 10th August, was a bland non-eventful day, no bouts of sleep or dyskinesia. She spent most of the morning doing word puzzles and the afternoon sweeping the floor with the length of dowel with a magnet glued to one end looking for stray pins and needles. Later I found the dowel broken so I have glued it back together.
This morning she has not been sleepy or dyskinetic up to now, 1115. But I have noticed one thing; she has not been tunelessly humming as she normally does during her waking hours at home. I took a while to realise this change, great should it last. She is in her sewing room dressed in T shirt and thin slacks without any house heating even though yesterday at day break there was snow on the lawns of our village.
A script for Exelon patches, which Dr F has prescribed for her, arrived in the post on Friday in a government envelope. The script is stamped "approved". I submitted it to the chemist yesterday to be told the patches are not stocked but will arrive on Monday. Exelon is Rivastigmine, a drug for early stage Alzheimer symptoms which has been found to help with similar symptoms in PD. The skin patch form has less side effects that the capsule form.
I am proceeding through an online course on dementia given by UTAS. Some references to PD suggest there is greater recognition these days that there are elements of dementia involved in PD. Was it 2000 or 2001 when her diagnosing neuro of 1991 had her scanned for Lewy Bodies? I still feel rejected that when I made approaches to local Alzheimer care groups and was told that her PD was a different thing altogether. Fortunately, I was invited to join one group, but even so, at one meeting when I spoke of PD symptoms I was taken aside and asked not to mention Parkinsons because others may think there was a carer in their midst not entitled to be there. And since then the term "Alzheimer's" has been subsumed under the umbrella of "Dementia". A rose by any other name.
posted by Kilpike | 11:54 am
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