Chapter 417 - The Eye of the Beholder
A fortnight ago she came with me to a Hot Air City appointment for my mouth to be scanned for dental purposes. We arrived early, sat in the car for awhile then she needed a toilet so I roamed the building looking for a disabled loo. There was one adjacent to the room where I had my appointment. When we entered the room for my appointment the woman there appeared flustered and confused, before suggesting that a scan was unsuitable for her because of the exposure time required. I explained that I was the one to be scanned; the woman was very relieved. Then while I was being positioned in the scanning machine I was asked whether "she" was my mother. More embarrassment. That is the first time in quite a few years that we have been asked such a question. Makes me wonder how frequently strangers leave such a question unasked.
Physio A at the hospital visited one afternoon to see the Sara Stedy, saying it was better for her to do sit-to-stands in it rather than the rails in the garage, partly because there was much less strain on her shoulders when beginning a stand from an almost upright position. Then at the appointment last Wednesday a "boot" was loaned for intermittent use now that the Botox had relaxed the left leg muscles. I attach the boot each day, tightening the velcro straps which place pressure on her leg and foot to force the heel towards the floor. I need to check with finger to ensure that no pressure points develop. I am not very confident about how well the boot and exercise are contributing to returning her foot to normal. Although compliant when I place the boot on her left leg and help her exercise, she thinks she should be able to place her left heel on the floor even now, not seeming to understand haw gradual the process is.
For the previous two Sundays she was taken shopping by a Wild Dog care lady but not today. I took her around two clothing shops last Monday (there was nothing she wished to buy) when we went to Hot Air City to buy some high density foam blocks to be used as foot rests and a wedge beneath her legs in bed.
I gave up attempting to make a couple of early Android tablets operate reliably for her to play some games so bought her a new Samsung 9.7" model which works well except I am having difficulty preventing pop-ups which confuse her in the middle of a game.
Yesterday some friends from Steel City visited for a BBQ; giving us another day of "holiday". So she has missed two respite days; Wednesday and Saturday this week.
On Thursday I video'd her legs, expecting them to shake as vigorously as they did the afternoon before when I took her to our GP to show him bruising on her legs which I thought may be thrombosis problems; he didn't think so unless bruising happens on other parts of her body. Her last blood tests gave no indication of such problems. A student doctor was most interested in her PD symptoms.
On Friday I again increased the Duodopa flow rate, as agreed with Doctor F., from 4.8 to 5.0 ml/Hour. So far her punding has not worsened, although she continues to be easily distracted. She often notices an item "out of place" as she begins breakfast or the like, becomes wholly absorbed in a task such as re-arranging the contents of the fridge or the food cupboard and protests loudly when I attempt to return her to a task at hand. As Wild Dog care ladies are about to leave she frequently raises a topic with them, or shows them a piece of sewing, and they politely take notice of her rather than continue to the door. She often tries to give them objects she has sewn or doesn't want anymore, and they are not allowed to accept "gifts". If she is sewing immediately prior to us going out in the car she will insist on completing tasks before leaving, even when there is no need to do so. One of the reasons I am encouraging her to play games on a tablet is to satisfy what seems to me to be a fascination with tapping touch screens on phones or the T Hub.
One of the blocks of foam I bought is to give her greater confidence sitting down on the loo from the Sara Stedy which raises her enough for her to sense there is a long drop between her bottom and the seat. Sitting down on the large block of foam then rising slightly for me to withdraw the block from beneath her bum reduces her stress, as well as balancing any strain between her arms while at the same time prevents me stressing my right hip if I have to transfer her by swinging her bottom from the wheel chair to the toilet seat, by lifting the seat of her pants. Unless we can reduce such physical strain on both of us, we will both end up in care. And I try to keep out of the way of any transfers when Wild Dog ladies are here each morning and evening; a matter of self preservation.
Physio A at the hospital visited one afternoon to see the Sara Stedy, saying it was better for her to do sit-to-stands in it rather than the rails in the garage, partly because there was much less strain on her shoulders when beginning a stand from an almost upright position. Then at the appointment last Wednesday a "boot" was loaned for intermittent use now that the Botox had relaxed the left leg muscles. I attach the boot each day, tightening the velcro straps which place pressure on her leg and foot to force the heel towards the floor. I need to check with finger to ensure that no pressure points develop. I am not very confident about how well the boot and exercise are contributing to returning her foot to normal. Although compliant when I place the boot on her left leg and help her exercise, she thinks she should be able to place her left heel on the floor even now, not seeming to understand haw gradual the process is.
For the previous two Sundays she was taken shopping by a Wild Dog care lady but not today. I took her around two clothing shops last Monday (there was nothing she wished to buy) when we went to Hot Air City to buy some high density foam blocks to be used as foot rests and a wedge beneath her legs in bed.
I gave up attempting to make a couple of early Android tablets operate reliably for her to play some games so bought her a new Samsung 9.7" model which works well except I am having difficulty preventing pop-ups which confuse her in the middle of a game.
Yesterday some friends from Steel City visited for a BBQ; giving us another day of "holiday". So she has missed two respite days; Wednesday and Saturday this week.
On Thursday I video'd her legs, expecting them to shake as vigorously as they did the afternoon before when I took her to our GP to show him bruising on her legs which I thought may be thrombosis problems; he didn't think so unless bruising happens on other parts of her body. Her last blood tests gave no indication of such problems. A student doctor was most interested in her PD symptoms.
On Friday I again increased the Duodopa flow rate, as agreed with Doctor F., from 4.8 to 5.0 ml/Hour. So far her punding has not worsened, although she continues to be easily distracted. She often notices an item "out of place" as she begins breakfast or the like, becomes wholly absorbed in a task such as re-arranging the contents of the fridge or the food cupboard and protests loudly when I attempt to return her to a task at hand. As Wild Dog care ladies are about to leave she frequently raises a topic with them, or shows them a piece of sewing, and they politely take notice of her rather than continue to the door. She often tries to give them objects she has sewn or doesn't want anymore, and they are not allowed to accept "gifts". If she is sewing immediately prior to us going out in the car she will insist on completing tasks before leaving, even when there is no need to do so. One of the reasons I am encouraging her to play games on a tablet is to satisfy what seems to me to be a fascination with tapping touch screens on phones or the T Hub.
One of the blocks of foam I bought is to give her greater confidence sitting down on the loo from the Sara Stedy which raises her enough for her to sense there is a long drop between her bottom and the seat. Sitting down on the large block of foam then rising slightly for me to withdraw the block from beneath her bum reduces her stress, as well as balancing any strain between her arms while at the same time prevents me stressing my right hip if I have to transfer her by swinging her bottom from the wheel chair to the toilet seat, by lifting the seat of her pants. Unless we can reduce such physical strain on both of us, we will both end up in care. And I try to keep out of the way of any transfers when Wild Dog ladies are here each morning and evening; a matter of self preservation.
posted by Kilpike | 11:03 am
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