Chapter 321 - When is the End of a Tether?
A trip to Hot Air City last Monday for Polly the PD nurse to remove bolus settings on the Apo pump and adjustments for 6ml of Apomine to be infused over 24 hours, rather than 7ml with 10 bolus. The bolus setting was removed because the initiation of a bolus caused bursts of tingling and pain in her legs, to such an extent that she avoided pushing the bolus button and therefore her actual daily infusion was less than 6 or 7 ml.
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NOTE: A section of text has been deleted from here because my arithmetic and conclusions were incorrect
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Our bank has alerted us that signatures will no longer be accepted for our credit/debit cards. I have been using PINs for ages but because she is never near a bank nor does she use on-line banking on those rare occasions when she has used a credit card she has signed. So Thursday was the day to sort out PINs with a visit to the bank. On the way I collected another month's supply of Apomine from the hospital (only place that is permitted to dispense the stuff) and a visit to the OT to see what can be done about the commode they supplied; she remained in the car. At the shopping centre I drove around the car park until a disabled slot was available near the doors. From there she pushed her walker some 100 metres before sitting on it while I took a script for Sinemet into the chemist. Then another 100 metres out of the shopping centre and across the road to the bank. There we had to queue, although she sat on her walker. While waiting patiently, I became concerned because the counter for the type of service we required was at elbow height, meaning she would need to stand while setting up 3 PINs and signing paperwork; clearly impossible. Fortunately, a bank person came along and took us into an office where she was able to sit at a desk. While she attended to her PINs I took some $50 worth of coins (she collects the small change I leave on the bedside table) to a teller for deposit into our main account. With that chore out of the way, we retraced our steps to the chemist, she sat on the walker, I collected the Sinemet plus $60 worth of OP-sites for the infusion needles. Then back through the crowds, bumped into a friend who wanted to talk while his wife bustled into another store. I noticed that she quickly became stressed after only a few stationary seconds and we continued to the car; almost there when she began to collapse to the left but able to pivot onto the walker's seat. I then pulled the walker backwards, down a shallow ramp onto the car park surface, round behind our car then down its side (fortunately there is enough space between vehicles in the disabled slots), opened the passenger side door, lowering the window so that she could grasp the edge of the window frame for support. Fortunately, she was able to stand sufficiently for me to push her sideways into the car. So after 4 short distances with pauses in between she had a near miss fall.
In the dark hours this morning I realised how similar the collapse of her left leg is to the prank school kids were wont to do, sneaking up behind another kid then tap the rear of his leg behind the knee with the heal of a hand, causing the leg to buckle. When we woke I asked whether her legs, most often the left, behaved that way and she said it was. How soon before she becomes wheel chair bound?
Polly the PD nurse has asked her to fill in a daily diary. The supplied sheet is limited to a checklist of PD symptoms, dyskinesia, etc., at hourly intervals for 18 hours only which is too coarse. I created a checklist with about 2 dozen "symptoms" at 15 minute intervals. Unfortunately, such an amount of detail is impractical to record and causes too much interpersonal friction. I then bought Dragon Naturally Speaking and an Olympus digital recorder for her to record her symptoms and problems whenever she experiences them. Then recorded audio file is then transcribed by Dragon and does a reasonable job of it. I have been surprised that she has difficulty prefacing any comment with the time of day then limiting her words to comments such as "left foot tingles" while holding the microphone end of the recorder near her mouth. The only onerous thing I asked was for her to say "full stop" at the end of a sentence and "new line new line" to format some white space between comments in the resulting transcript. Following much frustration yesterday, she has decided to scribble her observations onto a scrap of paper then read the comments into the recorder. Perhaps she will become adept in its use, although I suspect the whole will just be another toy for me. And I notice when she is in pain, dyskinetic and the like ticking boxes on a diary, making notes or speaking into a recorder are the last things on her mind and such is to be expected. However, for me to pester her with questions and attempt to interpret her sensations in my own words is inaccurate and very tiring for both of us.
As it is now, we are both very tired, our lives are reducing to just PD related activities.
Rather than experience the problems of last Sunday at the Club, she was relieved this morning when I said "Let's stay home today" even though she had said she would remain seated on her walker to save the difficulties of the transfer from chair to walker; transfers in and out of the car are another matter. Perhaps another minor activity is being closed to us.
Susan Greenfield in "The Private Life of the Brain" quotes anonymously "Experience is what you get when you don't get what you want."
*****************************************************
NOTE: A section of text has been deleted from here because my arithmetic and conclusions were incorrect
******************************************************
Our bank has alerted us that signatures will no longer be accepted for our credit/debit cards. I have been using PINs for ages but because she is never near a bank nor does she use on-line banking on those rare occasions when she has used a credit card she has signed. So Thursday was the day to sort out PINs with a visit to the bank. On the way I collected another month's supply of Apomine from the hospital (only place that is permitted to dispense the stuff) and a visit to the OT to see what can be done about the commode they supplied; she remained in the car. At the shopping centre I drove around the car park until a disabled slot was available near the doors. From there she pushed her walker some 100 metres before sitting on it while I took a script for Sinemet into the chemist. Then another 100 metres out of the shopping centre and across the road to the bank. There we had to queue, although she sat on her walker. While waiting patiently, I became concerned because the counter for the type of service we required was at elbow height, meaning she would need to stand while setting up 3 PINs and signing paperwork; clearly impossible. Fortunately, a bank person came along and took us into an office where she was able to sit at a desk. While she attended to her PINs I took some $50 worth of coins (she collects the small change I leave on the bedside table) to a teller for deposit into our main account. With that chore out of the way, we retraced our steps to the chemist, she sat on the walker, I collected the Sinemet plus $60 worth of OP-sites for the infusion needles. Then back through the crowds, bumped into a friend who wanted to talk while his wife bustled into another store. I noticed that she quickly became stressed after only a few stationary seconds and we continued to the car; almost there when she began to collapse to the left but able to pivot onto the walker's seat. I then pulled the walker backwards, down a shallow ramp onto the car park surface, round behind our car then down its side (fortunately there is enough space between vehicles in the disabled slots), opened the passenger side door, lowering the window so that she could grasp the edge of the window frame for support. Fortunately, she was able to stand sufficiently for me to push her sideways into the car. So after 4 short distances with pauses in between she had a near miss fall.
In the dark hours this morning I realised how similar the collapse of her left leg is to the prank school kids were wont to do, sneaking up behind another kid then tap the rear of his leg behind the knee with the heal of a hand, causing the leg to buckle. When we woke I asked whether her legs, most often the left, behaved that way and she said it was. How soon before she becomes wheel chair bound?
Polly the PD nurse has asked her to fill in a daily diary. The supplied sheet is limited to a checklist of PD symptoms, dyskinesia, etc., at hourly intervals for 18 hours only which is too coarse. I created a checklist with about 2 dozen "symptoms" at 15 minute intervals. Unfortunately, such an amount of detail is impractical to record and causes too much interpersonal friction. I then bought Dragon Naturally Speaking and an Olympus digital recorder for her to record her symptoms and problems whenever she experiences them. Then recorded audio file is then transcribed by Dragon and does a reasonable job of it. I have been surprised that she has difficulty prefacing any comment with the time of day then limiting her words to comments such as "left foot tingles" while holding the microphone end of the recorder near her mouth. The only onerous thing I asked was for her to say "full stop" at the end of a sentence and "new line new line" to format some white space between comments in the resulting transcript. Following much frustration yesterday, she has decided to scribble her observations onto a scrap of paper then read the comments into the recorder. Perhaps she will become adept in its use, although I suspect the whole will just be another toy for me. And I notice when she is in pain, dyskinetic and the like ticking boxes on a diary, making notes or speaking into a recorder are the last things on her mind and such is to be expected. However, for me to pester her with questions and attempt to interpret her sensations in my own words is inaccurate and very tiring for both of us.
As it is now, we are both very tired, our lives are reducing to just PD related activities.
Rather than experience the problems of last Sunday at the Club, she was relieved this morning when I said "Let's stay home today" even though she had said she would remain seated on her walker to save the difficulties of the transfer from chair to walker; transfers in and out of the car are another matter. Perhaps another minor activity is being closed to us.
Susan Greenfield in "The Private Life of the Brain" quotes anonymously "Experience is what you get when you don't get what you want."
posted by Kilpike | 2:44 pm
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