Chapter 313 - Less Pain Would Be Welcome
I watch her sewing; her feet may be shaking away with a mind of the own yet her upper body seems not to notice, hands and fingers at work until sluggishness beats her, or, as happened an hour or so ago when she had a quilt spread on the lounge room floor "I have to stop, it's too congested in here." Her spatial perceptions on the one hand cause objects to cramp her movements, makes her want to grab at doorways, poles, etc when being wheeled in wheel chair or walker yet at times gaps frighten her, as a few days ago when she had difficulty getting off the commode back onto the bed because of the "gap" between commode and bed, when one was pushed hard against the other and I saw no gap at all. The Happy Physio suggested stuffing a pillow in the "gap" and I find that works.
On most occasions when she needs the commode or toilet she calls for help because she cannot stand alone or walk without her trolley and me behind ready to steady her. Sometimes, having started walking, she may need a kitchen chair at one end or the shower chair at the other end near the toilet (most of her walking is between the TV room and the loo).
She nearly fell yesterday while in the kitchen while beating cream to place on her birthday cake given her by a neighbour. As usual, her left foot became "thick" as she calls it then her left leg simply lost any rigidity to hold her up. She was quick enough to grab the bench top to support herself for the odd second or two until her left leg supported her again. She told me about it later. As the retired Peter Ustinoff look-alike neuro used to say "If someone yells 'fire!' the PWP's will be first out the door". Different brain circuits for emergencies?
She often says that she has no idea where her feet are without looking at them. I thought this only applied to the left foot alone but she says it is also happening to her right foot lately.
When getting off the toilet, her with both hands on the fireman's pole, me pulling her pants up, she will say "I can't find my right foot" which alerts me to tap her foot very gently with mine, and doing so may induce a step, or rather, a shuffle, to get her going. I must be careful not to bump her toes; they are very painful if bumped and often when wheeling her around her toes may bump objects and that probably causes stress to her contemplating my dangerous navigation of wheelchair or whatever around the house. Also when helping her into bed and on and off the toilet my slippers may nudge her toes, not enough for me to notice yet bothers her no end.
Beginning last Monday, she no longer takes Comtan. I have now learnt from Polly the PD Nurse that Comtan has an effect on the levels of levadopa in the system of up to 30%. so having her knock off the two doses of Comtan she was having each day reduces the effective level of levadopa by a third, which may explain why she is mostly OFF and tremoring. On the other hand, I imagine that the taking of Comtan will have positive effect, increasing levadopa levels by up to a third. If this is the case, then that may explain why, when the Peter Ustinoff neuro gave her Comtan years ago, she experienced freaky tingling and shudders in her shoulders, neck and back of her head, perhaps suggesting that she was then over medicated. Recently (See Chapter 285, March 26th 2013), when she was asked to reintroduce Comtan, her other medications See Chapter 284, February 24th 2013) were not reduced to compensate, as would seem logical.
Yesterday she said she had not felt ON all day (although, historically she has always had difficulty being able to tell me when she was ON or OFF, the feeling was far from binary) and wished for that "beautiful feeling of freedom" she has experienced in the past, although much less frequently lately. A couple of days ago she said the leg tingles had decreased in intensity, "had become more feathery". I just asked her (1530 Sunday) whether she still had "tingles" and how bad they were, "Yes, just as bad" she replied but when I pressed, the tingles are in her feet, not up and down the whole of her legs, but the feathery feeling has not returned. A matter of present discomfort always being bad.
She has begun to sweat a lot again. On Wednesday morning between 0150 and 0310 she needed her remote controlled pedestal fan while she was battling a panic attack. I commented today that her skin was clammy as I helped her into her recliner. Some months ago we bought a gel filled pillow which she tried out today and found it beneficial in cooling her head.
Last Tuesday she saw the Happy Physio who cajoled her to regularly exercise and explained matters unknown to us about bowel actions, interactions between nerves and muscle groups etc. Now we both exercise for about 10 minutes, me doing Wii Fit Hula Hoops and she on her pedals, although this morning her calves became painful even in power mode on the pedals.
The same day we saw Dr Flower who recommended a neuro should make a decision about the back defects as shown on the X-ray report. After leaving Dr Flower we realised that Dr Flower had been reviewing an earlier X-ray report because a technical difficulty had not sent the latest report through to her. I was able to collect the latest report as well as a month's supply of Apomine having left the script at the hospital last week. Our local hospital is the only local pharmacy that can supply the Apomine.
On Wednesday, having found a distributor of adjustable beds I decided she should have one as a birthday present as well as to minimise the number of pillows she requires to pack around herself each night. About 75% up the 4 lane to the large outer southern suburb of Big Smoke I realised I had not packed either her walker or wheel chair in the new car. She was unable to alight from the car and doubted she could walk on my arm anyway. So I looked over the available beds before driving home. At home she was unable to get out of the car until I positioned a kitchen chair beside the open car door. I then helped her transfer onto the chair then onto her walker.
Thursday saw us down at Hot Air City for Polly to check her over. It was decided to increase the Apomine to 3ml with saline for a total mixture of 10ml per day. I had to push her on the walker into the hospital; on the return to the car she walked, with leg pains and burning, plus three rest stops back to the car. I called into a Big W where I bought a collapsible camping chair for her to use when getting out of the car. We used it that day and also on Friday on our return from a second trip to the bed shop, where she tested the adjustable bed, found it satisfactory (a night or two sleeping on it may tell a different story) and we bought it, to be delivered next Tuesday. The same day I had organised for a visit from a local nurse to visit to see how they may support her should I ever be run over by a bus.
Yesterday I shopped at our supermarket; one for pills, the other for food. She remained in the car, not wishing to shuffle through the crowd using painful legs. I bought and installed another grab rail, positioned horizontally between the other two vertical ones so that she is now able to negotiate down the side of the garage without needing to extend herself unduly. Of course the gap between wall and car remains.
She began some quilting this morning but soon gave it away, too many pains in her legs. At the moment she is constructing a calico bag into which we will place the camp chair to be carried in the car to help her get out of it. Yes she was in danger of her left leg collapsing getting in and out of the 4WD; now it is a matter of cajoling her bum off a low slung seat.
On most occasions when she needs the commode or toilet she calls for help because she cannot stand alone or walk without her trolley and me behind ready to steady her. Sometimes, having started walking, she may need a kitchen chair at one end or the shower chair at the other end near the toilet (most of her walking is between the TV room and the loo).
She nearly fell yesterday while in the kitchen while beating cream to place on her birthday cake given her by a neighbour. As usual, her left foot became "thick" as she calls it then her left leg simply lost any rigidity to hold her up. She was quick enough to grab the bench top to support herself for the odd second or two until her left leg supported her again. She told me about it later. As the retired Peter Ustinoff look-alike neuro used to say "If someone yells 'fire!' the PWP's will be first out the door". Different brain circuits for emergencies?
She often says that she has no idea where her feet are without looking at them. I thought this only applied to the left foot alone but she says it is also happening to her right foot lately.
When getting off the toilet, her with both hands on the fireman's pole, me pulling her pants up, she will say "I can't find my right foot" which alerts me to tap her foot very gently with mine, and doing so may induce a step, or rather, a shuffle, to get her going. I must be careful not to bump her toes; they are very painful if bumped and often when wheeling her around her toes may bump objects and that probably causes stress to her contemplating my dangerous navigation of wheelchair or whatever around the house. Also when helping her into bed and on and off the toilet my slippers may nudge her toes, not enough for me to notice yet bothers her no end.
Beginning last Monday, she no longer takes Comtan. I have now learnt from Polly the PD Nurse that Comtan has an effect on the levels of levadopa in the system of up to 30%. so having her knock off the two doses of Comtan she was having each day reduces the effective level of levadopa by a third, which may explain why she is mostly OFF and tremoring. On the other hand, I imagine that the taking of Comtan will have positive effect, increasing levadopa levels by up to a third. If this is the case, then that may explain why, when the Peter Ustinoff neuro gave her Comtan years ago, she experienced freaky tingling and shudders in her shoulders, neck and back of her head, perhaps suggesting that she was then over medicated. Recently (See Chapter 285, March 26th 2013), when she was asked to reintroduce Comtan, her other medications See Chapter 284, February 24th 2013) were not reduced to compensate, as would seem logical.
Yesterday she said she had not felt ON all day (although, historically she has always had difficulty being able to tell me when she was ON or OFF, the feeling was far from binary) and wished for that "beautiful feeling of freedom" she has experienced in the past, although much less frequently lately. A couple of days ago she said the leg tingles had decreased in intensity, "had become more feathery". I just asked her (1530 Sunday) whether she still had "tingles" and how bad they were, "Yes, just as bad" she replied but when I pressed, the tingles are in her feet, not up and down the whole of her legs, but the feathery feeling has not returned. A matter of present discomfort always being bad.
She has begun to sweat a lot again. On Wednesday morning between 0150 and 0310 she needed her remote controlled pedestal fan while she was battling a panic attack. I commented today that her skin was clammy as I helped her into her recliner. Some months ago we bought a gel filled pillow which she tried out today and found it beneficial in cooling her head.
Last Tuesday she saw the Happy Physio who cajoled her to regularly exercise and explained matters unknown to us about bowel actions, interactions between nerves and muscle groups etc. Now we both exercise for about 10 minutes, me doing Wii Fit Hula Hoops and she on her pedals, although this morning her calves became painful even in power mode on the pedals.
The same day we saw Dr Flower who recommended a neuro should make a decision about the back defects as shown on the X-ray report. After leaving Dr Flower we realised that Dr Flower had been reviewing an earlier X-ray report because a technical difficulty had not sent the latest report through to her. I was able to collect the latest report as well as a month's supply of Apomine having left the script at the hospital last week. Our local hospital is the only local pharmacy that can supply the Apomine.
On Wednesday, having found a distributor of adjustable beds I decided she should have one as a birthday present as well as to minimise the number of pillows she requires to pack around herself each night. About 75% up the 4 lane to the large outer southern suburb of Big Smoke I realised I had not packed either her walker or wheel chair in the new car. She was unable to alight from the car and doubted she could walk on my arm anyway. So I looked over the available beds before driving home. At home she was unable to get out of the car until I positioned a kitchen chair beside the open car door. I then helped her transfer onto the chair then onto her walker.
Thursday saw us down at Hot Air City for Polly to check her over. It was decided to increase the Apomine to 3ml with saline for a total mixture of 10ml per day. I had to push her on the walker into the hospital; on the return to the car she walked, with leg pains and burning, plus three rest stops back to the car. I called into a Big W where I bought a collapsible camping chair for her to use when getting out of the car. We used it that day and also on Friday on our return from a second trip to the bed shop, where she tested the adjustable bed, found it satisfactory (a night or two sleeping on it may tell a different story) and we bought it, to be delivered next Tuesday. The same day I had organised for a visit from a local nurse to visit to see how they may support her should I ever be run over by a bus.
Yesterday I shopped at our supermarket; one for pills, the other for food. She remained in the car, not wishing to shuffle through the crowd using painful legs. I bought and installed another grab rail, positioned horizontally between the other two vertical ones so that she is now able to negotiate down the side of the garage without needing to extend herself unduly. Of course the gap between wall and car remains.
She began some quilting this morning but soon gave it away, too many pains in her legs. At the moment she is constructing a calico bag into which we will place the camp chair to be carried in the car to help her get out of it. Yes she was in danger of her left leg collapsing getting in and out of the 4WD; now it is a matter of cajoling her bum off a low slung seat.
posted by Kilpike | 4:50 pm
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