Chapter 389 - Muddling Along
That list of her strange behaviour I sent to J., the CNC at West Beer and included a scanned copy of some calculations she made with pencil and paper. Periodically a catalogue of "useful" home care items is left at our door. Sometimes she buys something. She filled out the order form by hand. It was so messed up with calculations, scrawled writing she decided it was illegible so typed it instead, after I started her using a word processing application on her Surface Pro. That went well, until she needed a total of the prices. Many scribbled sheets of note pad later she became very frustrated, asked my help. I added the figures to exactly $120.00. She was unsatisfied with my calculation; wished to prove it herself, so I gave her my old 1980's style desk calculator, big buttons, without touch screen. She experienced difficulties even with that. So I started a spreadsheet and showed her where to type the cash amounts and calculate a total. She was content with that once I demonstrated that making a change of $1 or so in one cell made a corresponding change to the total. J. emailed back to me that we will discuss this at our next clinic, a number of weeks away then but with the grinding of time is now this coming Wednesday.
Another matter I must mention on Wednesday is the persistence with which she attempts projects which has a concept of how to do yet is unable to put her ideas into practise. For instance, A Scrabble board made out of fabric; I helped her lay out what I thought she wanted; she began but had problems with the sewing machine (threading needles, sewing straight lines etc), so other ideas were attempted and eventually dropped. She began knitting a scarf, changed her mind, began another object, something went wrong, pulled it apart, getting two balls of wool like "stuff" (knitting with two threads together) so entangled that she spent several days attempting to wind the stuff back onto balls. She then began the project again but I see there remains a large bundle of "spaghetti".
She continues to have dyskinesias from mid-afternoon, possibly less vigorously, so I reduced the Duodopa flow from 6.9 to 6.8 and haven't really noticed any changes. Her Deralin has been reduced by 20mg a day each 1-2 weeks so from tonight onwards she will take none at all. I hope the West Beer team approve. She had been taking a bolus dose around the time her personal care person from Wild Dog arrived. Then I realised that if I attach her pump a little after 7AM, initiate the "Morning Dose" which runs at 14mL per hour (from memory) for about 30 minutes (although I haven't timed it) THEN give the bolus to cover the period the pump is removed while having a shower that the effective dose may be higher than it should to begin the day. I must clarify this with J. Some mornings the personal care people need assistance to transfer her from seated on the bed into the wheel chair, although that may depend on the amount of effort a person is willing to exert. Some mornings her bum wobbles up and down so quickly that pulling her pants up is almost impossible (such also happens frequently getting on and off the toilet). One morning I forgot to push the "morning dose" button, noticing she was very docile when wheel chaired out for breakfast.
A long while since the physio person from Wild Dog has had her do "sit to stands", exercise is limited to boxing gloves and other arm actions and only heal-toe, seated stepping with weighted ankles.
Twice in the past few weeks she has had large pink areas, firstly on her right lower arm then some days later on the side of her lower right leg. We thought at first she must have bumped the areas involved (no memory of having done so) because they gradually became a pale bruise colour. I spoke on the phone to J. clinic nurse at the doctor's; she advised seeing the doctor. When he saw the photo I took of the arm he was puzzled but did not mention platelets as did the nurse. After asking the expected questions - itchy?, sore? , hot? - he wondered whether this may be a side effect of the DuoDopa. We will ask on Wednesday.
Last Sunday I took her around the shops where she stocked up with lots of clothes on sale. She really enjoyed herself, brushing her hands on clothes on racks as she wheeled by. I'm sure blokes don't do that.
I began a Mediterranean diet 2 weeks ago, losing 2Kg's in 1 week, finding it easy to comply with but I had bought excessive unusual (to me) foodstuffs used in small quantities and the fridge is overflowing with items not even used in the first week, so I abandoned that diet, opting for a home delivered, largely frozen, type instead. My aim was to trial this myself then introduce her to it next week. I shared half of a foil tray of cottage pie with her but was disappointed that she was unable to swallow the food, quite soft stuff with finely grated carrot in it, the wad of stuff just circulating in her mouth. A failure unless the place caters for those with such problems; I must check their website. I am finding more and more often that there are balls of stuff wrapped in tissue left on her plate. Looks as if the time has come to seek a speech therapist.
Another matter I must mention on Wednesday is the persistence with which she attempts projects which has a concept of how to do yet is unable to put her ideas into practise. For instance, A Scrabble board made out of fabric; I helped her lay out what I thought she wanted; she began but had problems with the sewing machine (threading needles, sewing straight lines etc), so other ideas were attempted and eventually dropped. She began knitting a scarf, changed her mind, began another object, something went wrong, pulled it apart, getting two balls of wool like "stuff" (knitting with two threads together) so entangled that she spent several days attempting to wind the stuff back onto balls. She then began the project again but I see there remains a large bundle of "spaghetti".
She continues to have dyskinesias from mid-afternoon, possibly less vigorously, so I reduced the Duodopa flow from 6.9 to 6.8 and haven't really noticed any changes. Her Deralin has been reduced by 20mg a day each 1-2 weeks so from tonight onwards she will take none at all. I hope the West Beer team approve. She had been taking a bolus dose around the time her personal care person from Wild Dog arrived. Then I realised that if I attach her pump a little after 7AM, initiate the "Morning Dose" which runs at 14mL per hour (from memory) for about 30 minutes (although I haven't timed it) THEN give the bolus to cover the period the pump is removed while having a shower that the effective dose may be higher than it should to begin the day. I must clarify this with J. Some mornings the personal care people need assistance to transfer her from seated on the bed into the wheel chair, although that may depend on the amount of effort a person is willing to exert. Some mornings her bum wobbles up and down so quickly that pulling her pants up is almost impossible (such also happens frequently getting on and off the toilet). One morning I forgot to push the "morning dose" button, noticing she was very docile when wheel chaired out for breakfast.
A long while since the physio person from Wild Dog has had her do "sit to stands", exercise is limited to boxing gloves and other arm actions and only heal-toe, seated stepping with weighted ankles.
Twice in the past few weeks she has had large pink areas, firstly on her right lower arm then some days later on the side of her lower right leg. We thought at first she must have bumped the areas involved (no memory of having done so) because they gradually became a pale bruise colour. I spoke on the phone to J. clinic nurse at the doctor's; she advised seeing the doctor. When he saw the photo I took of the arm he was puzzled but did not mention platelets as did the nurse. After asking the expected questions - itchy?, sore? , hot? - he wondered whether this may be a side effect of the DuoDopa. We will ask on Wednesday.
Last Sunday I took her around the shops where she stocked up with lots of clothes on sale. She really enjoyed herself, brushing her hands on clothes on racks as she wheeled by. I'm sure blokes don't do that.
I began a Mediterranean diet 2 weeks ago, losing 2Kg's in 1 week, finding it easy to comply with but I had bought excessive unusual (to me) foodstuffs used in small quantities and the fridge is overflowing with items not even used in the first week, so I abandoned that diet, opting for a home delivered, largely frozen, type instead. My aim was to trial this myself then introduce her to it next week. I shared half of a foil tray of cottage pie with her but was disappointed that she was unable to swallow the food, quite soft stuff with finely grated carrot in it, the wad of stuff just circulating in her mouth. A failure unless the place caters for those with such problems; I must check their website. I am finding more and more often that there are balls of stuff wrapped in tissue left on her plate. Looks as if the time has come to seek a speech therapist.
posted by Kilpike | 10:27 am
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