Chapter 408 - Little to Say
I am attempting to institute Sundays as our shopping day when we do a minimal amount of shopping, have a coffee and bump into a few acquaintances who are usually care ladies from Wild Dog; an illusion that we know a lot of people. But a few hours out in public for her. We are buying few grocery items lately now that I often share my frozen diet meals with her, so there is little difficulty pushing her in the wheelchair while filling a shopping basket (held on her knees) rather than a trolley. Except yesterday when the chemist told me the Duodopa order had arrived - 56 cassettes in 8 boxes are quite bulky. These days I feel very tired with my blood pressure starting the day about 117/75 or so; makes me feel light and fuzzy headed and yesterday after walking about for a couple of hours I really felt the need to be at home. I slept on my bed for some 3 hours during the afternoon, then went to bed early as well. Lately we may not be settled into bed before 11PM and then begin to wake around 6AM. I need to begin her "going to bed" chores much earlier than 10PM.
A message from physio KW via her receptionist that there was no suitable AFO for her right leg puzzled me but a physio at West Beer Hospital had been contacted (KW is overseas at this time). A response to my email to the West Beer PD Clinic said there was no physio in their clinic and no one contacted them about her drop foot condition. In my email I had mentioned that her pump runs 24/7 at 4.8 mL/hr; the reply said they do not recommend grater than 2.1 mL/hr over night. We will hear what they have to say when she attends a clinic there next Wednesday. Which may be her last at West Beer, for I doubt that I will be funded for transport once my budget ceases at the end of the financial year; my current light headedness is far from compatible with at least a 2 hour drive each way and pushing a wheel chair along hospital corridors. We may return to Hot Air City for clinics but I'm unsure about neurologists down there.
I recently bought 2 books by Norman Doidge and each evening on going to bed I read to her a page or two from a chapter entitled "A Man Walks Off His Parkinsonian Symptoms" from the book "The Brain's Way of Healing" in which is described the method one man devised to reduce his PD mobility symptoms. The technique is consciously intensive and I doubt she could accomplish the technique even if she was still able to walk; even so, she is frequently attempting to move her feet and toes. As could be expected, a number of professionals disputed the claims of the man Pepper written about in the book, publicly stating that he never had idiopathic PD, only atypical Parkinsonian symptoms and therefore the man mislead suffering and genuine PD patients whose symptoms may only be relieved by medications. I think we have met a couple of professional gentlemen who would think that way, those that said, or implied, "You have PD, just learn to live with it!", the type in centuries past who practised blood letting.
Except in the last week she has exhibited little punding and obsessive pursuits. She very rarely "hums" tunelessly. Although yesterday she pulled her bed apart, attempting to shape it with pillows at both ends, spending half an hour or more attempting to implement some plan she had in mind yet unable to do so. Part of the re-arrangement involved a foam foot buffer so that her toes did not bump painfully against the end of the bed; I can only assume that need has gone now. Then going to bed last night she sat puzzled by the arrangements of pillows etc so I returned it to roughly normal. Her main activity lately is making small bags covered in ribbon, the function of these escapes me.
She has largely overcome her fear of being seated on the Sara Stedy, although at night she begins to tremor at the site of it, yet not in the mornings.
Our son and family visited us at the Club for lunch on Saturday.
A message from physio KW via her receptionist that there was no suitable AFO for her right leg puzzled me but a physio at West Beer Hospital had been contacted (KW is overseas at this time). A response to my email to the West Beer PD Clinic said there was no physio in their clinic and no one contacted them about her drop foot condition. In my email I had mentioned that her pump runs 24/7 at 4.8 mL/hr; the reply said they do not recommend grater than 2.1 mL/hr over night. We will hear what they have to say when she attends a clinic there next Wednesday. Which may be her last at West Beer, for I doubt that I will be funded for transport once my budget ceases at the end of the financial year; my current light headedness is far from compatible with at least a 2 hour drive each way and pushing a wheel chair along hospital corridors. We may return to Hot Air City for clinics but I'm unsure about neurologists down there.
I recently bought 2 books by Norman Doidge and each evening on going to bed I read to her a page or two from a chapter entitled "A Man Walks Off His Parkinsonian Symptoms" from the book "The Brain's Way of Healing" in which is described the method one man devised to reduce his PD mobility symptoms. The technique is consciously intensive and I doubt she could accomplish the technique even if she was still able to walk; even so, she is frequently attempting to move her feet and toes. As could be expected, a number of professionals disputed the claims of the man Pepper written about in the book, publicly stating that he never had idiopathic PD, only atypical Parkinsonian symptoms and therefore the man mislead suffering and genuine PD patients whose symptoms may only be relieved by medications. I think we have met a couple of professional gentlemen who would think that way, those that said, or implied, "You have PD, just learn to live with it!", the type in centuries past who practised blood letting.
Except in the last week she has exhibited little punding and obsessive pursuits. She very rarely "hums" tunelessly. Although yesterday she pulled her bed apart, attempting to shape it with pillows at both ends, spending half an hour or more attempting to implement some plan she had in mind yet unable to do so. Part of the re-arrangement involved a foam foot buffer so that her toes did not bump painfully against the end of the bed; I can only assume that need has gone now. Then going to bed last night she sat puzzled by the arrangements of pillows etc so I returned it to roughly normal. Her main activity lately is making small bags covered in ribbon, the function of these escapes me.
She has largely overcome her fear of being seated on the Sara Stedy, although at night she begins to tremor at the site of it, yet not in the mornings.
Our son and family visited us at the Club for lunch on Saturday.
posted by Kilpike | 10:57 am
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