Chapter 324 - Better or Worse Year Ahead?
My answer to my chapter title is simply "I cannot expect the future to be any better than our recent past". Our social life, never of much consequence anyway, is negligible, no movies, no shopping together (if such can be called "social"), doubtful about having lunches at the Club, no holidays from retirement, minimal visits to/from rellies and friends (who are also deteriorating). Such is life sliding down the slope. We were in bed asleep well before any New Year festivities occurred. What, me depressed?
A couple of minutes ago she called me on the CB to say she will take her 2pm meds at 1:45pm; I went out to say "Take them now, 25 minutes early, what the hell." Not good to change the timing. She has been having an OFF morning, possibly triggered by an impromptu experiment I performed this morning. Polly the PD Nurse will add this to her long list of cruelties I inflict upon my PWP.
Experience has shown us that the Apo pump needs to be restarted with a new full syringe as soon as possible after 8am so that she can have breakfast, at the moment two slices of buttered toast, honey and a banana plus a glass of grape juice with a teaspoon of Metamucil well before her 10am meds.
This morning the Apo pump with 10 minutes to run was shutdown at a little after 8am, then after a shower and partly dressing I reattached the pump with a full syringe primed for 24:05 hours of infusion. Within several seconds of the pump being turned on at 0844, she experienced tingles in her right big toe, then her left big toe. Since anything I have read about Apomorphine says the PWP experiences the commencement of ON time about 20 minutes minimum, I wonder why she often experiences neuropathy effects in her feet so quickly. What follows are my scribbled notes describing what she experienced.
0847 Banding in left foot, then into right foot while laying in bed.
0848 She dropped her legs over the side of the bed (to complete dressing) and tingling immediately extended to her ankles.
0849 Ice Gel applied to her calves to ease pains which were present before the pump was started.
0853 The preceding is "normal". Here I suggested an experiment. The Apo pump was turned off reading 23:57. Within 30 seconds she experienced tightness around her ankles, toes began bending up (dystonia?).
0854 Tingling more, more tightening, then right foot tingling lessened.
0855 Toes "spreading", cramps in both feet.
0856 Tingling remains across toes only, feet kicking mildly (dyskinesia?), not tremor.
0857 Banding still there, dyskinesia in loer legs, tingling still in toes.
0858 Head wobbling, other symptoms same, feeling very uncomfortable, Apo pump switched on again reading 23:57.
0859 Dyskinesia of lower legs, tingling in toes, ball of foot.
0900 Dyskinesia in legs, tongue sounded thick when she spoke, tingling in heels and toes.
0901 Had her lay down on the bed again, breathing heavily, becoming distressed.
0902 Tingling from toes to bum.
0903 Mouth dry, sipped water.
0904 Relaxing, breathing normal, tingling gone from bum but still in toes and ankles, only slight banding of feet, big toes tight, dyskinesia mild.
0906 Soles of feet gone tight.
0910 All quiet, settled down lying on bed, no tremor or dyskinesia, except index finger and thumb of left hand flexing, face relaxed.
0912 Left foot tightening again.
0913 Finished dressing before too OFF to do so.
After taking 2pm meds 25 minutes early, she slept from approximately 13:45 to 14:15, calling me a few minutes later to help her adjust her recliner and a pillow, the suggested her feet be massaged, which I obliged with Ice Gel; horrible stuff, I wonder whether ass's milk is available?
Recently she has been saying the skin on her feet feels as if it is peeling off. At other times she describes her feet as being "large lumps", or numb, or without feeling, or she yelps with pain if her toes are touched. When pushing her trolley her shuffling gait responds positively to my saying loudly "BIG STEPS" which may suggest some of the LSVT BIG programme will be helpful.
In between Xmas and new year we had a visit from an ACAT lady who assessed her for full residential care for when the proverbial bus finds me. She has an appointment to see Dr Flower on Tuesday to complete a referral questionnaire for her to enter the local hospital system for rehabilitation treatment; exactly what that entails we are unsure about, questions to ask such as "can the patient self medicate" amongst other matters. Next Thursday a formal assessment for her to undertake the LSVT BIG programme.
Strange behaviour on Friday last at 10:30. She called me on the CB, stressed, wanting the loo for a bowel action. She wanted to hand me a pair of scissors with which to cut off her slacks which she was sure were too tight to be pulled down quickly once she got to the loo. I checked to find the waist band no tighter, the cords undone, as when I helped her into them that morning. I had to belt assist her into the wheel chair, then onto the loo, for she was unable to stand by herself. Surprisingly, she got off the loo by means of the fireman's pole, pulled up her pants then sat in the wheel chair without assistance. I then wheeled her out to her recliner.
A couple of minutes ago she called me on the CB to say she will take her 2pm meds at 1:45pm; I went out to say "Take them now, 25 minutes early, what the hell." Not good to change the timing. She has been having an OFF morning, possibly triggered by an impromptu experiment I performed this morning. Polly the PD Nurse will add this to her long list of cruelties I inflict upon my PWP.
Experience has shown us that the Apo pump needs to be restarted with a new full syringe as soon as possible after 8am so that she can have breakfast, at the moment two slices of buttered toast, honey and a banana plus a glass of grape juice with a teaspoon of Metamucil well before her 10am meds.
This morning the Apo pump with 10 minutes to run was shutdown at a little after 8am, then after a shower and partly dressing I reattached the pump with a full syringe primed for 24:05 hours of infusion. Within several seconds of the pump being turned on at 0844, she experienced tingles in her right big toe, then her left big toe. Since anything I have read about Apomorphine says the PWP experiences the commencement of ON time about 20 minutes minimum, I wonder why she often experiences neuropathy effects in her feet so quickly. What follows are my scribbled notes describing what she experienced.
0847 Banding in left foot, then into right foot while laying in bed.
0848 She dropped her legs over the side of the bed (to complete dressing) and tingling immediately extended to her ankles.
0849 Ice Gel applied to her calves to ease pains which were present before the pump was started.
0853 The preceding is "normal". Here I suggested an experiment. The Apo pump was turned off reading 23:57. Within 30 seconds she experienced tightness around her ankles, toes began bending up (dystonia?).
0854 Tingling more, more tightening, then right foot tingling lessened.
0855 Toes "spreading", cramps in both feet.
0856 Tingling remains across toes only, feet kicking mildly (dyskinesia?), not tremor.
0857 Banding still there, dyskinesia in loer legs, tingling still in toes.
0858 Head wobbling, other symptoms same, feeling very uncomfortable, Apo pump switched on again reading 23:57.
0859 Dyskinesia of lower legs, tingling in toes, ball of foot.
0900 Dyskinesia in legs, tongue sounded thick when she spoke, tingling in heels and toes.
0901 Had her lay down on the bed again, breathing heavily, becoming distressed.
0902 Tingling from toes to bum.
0903 Mouth dry, sipped water.
0904 Relaxing, breathing normal, tingling gone from bum but still in toes and ankles, only slight banding of feet, big toes tight, dyskinesia mild.
0906 Soles of feet gone tight.
0910 All quiet, settled down lying on bed, no tremor or dyskinesia, except index finger and thumb of left hand flexing, face relaxed.
0912 Left foot tightening again.
0913 Finished dressing before too OFF to do so.
After taking 2pm meds 25 minutes early, she slept from approximately 13:45 to 14:15, calling me a few minutes later to help her adjust her recliner and a pillow, the suggested her feet be massaged, which I obliged with Ice Gel; horrible stuff, I wonder whether ass's milk is available?
Recently she has been saying the skin on her feet feels as if it is peeling off. At other times she describes her feet as being "large lumps", or numb, or without feeling, or she yelps with pain if her toes are touched. When pushing her trolley her shuffling gait responds positively to my saying loudly "BIG STEPS" which may suggest some of the LSVT BIG programme will be helpful.
In between Xmas and new year we had a visit from an ACAT lady who assessed her for full residential care for when the proverbial bus finds me. She has an appointment to see Dr Flower on Tuesday to complete a referral questionnaire for her to enter the local hospital system for rehabilitation treatment; exactly what that entails we are unsure about, questions to ask such as "can the patient self medicate" amongst other matters. Next Thursday a formal assessment for her to undertake the LSVT BIG programme.
Strange behaviour on Friday last at 10:30. She called me on the CB, stressed, wanting the loo for a bowel action. She wanted to hand me a pair of scissors with which to cut off her slacks which she was sure were too tight to be pulled down quickly once she got to the loo. I checked to find the waist band no tighter, the cords undone, as when I helped her into them that morning. I had to belt assist her into the wheel chair, then onto the loo, for she was unable to stand by herself. Surprisingly, she got off the loo by means of the fireman's pole, pulled up her pants then sat in the wheel chair without assistance. I then wheeled her out to her recliner.
posted by Kilpike | 3:13 pm
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