Chapter 325 - Perhaps a Quiet Week
Perhaps a quiet week because I decided to keep few notes, for doing so depresses me and possibly irritates her, although she never complains. Today, from 6am I am taking video clips every half hour to send to Polly and perhaps a copy to the Private Neuro with whom she visits next Thursday, now that she is discharged from the Considerate Neuro at the hospital.
She had a referral questionnaire from the Sub-Acute Rehabilitation Unit at the local hospital to be completed by Dr Flower, our current GP last Tuesday. The referral was because in early December the Friendly OT at the local hospital invited her to participate in a live-in respite week or so of physio activities in the new wing of the hospital. What with the holiday season these arrangements proceeded slowly and in the mean time I had organised the LSVT BIG programme for her and that begins seriously tomorrow, Monday. So the rehab session will have to wait at least a month. I think both she and the OT are disappointed that I have managed this in reverse order.
Anyway, we were both saddened to learn that from the end of January Dr Flower, who has young family commitments, will no longer commute from Big Smoke to our town. Dr Flower is the most helpful, thorough and empathetic GP we have ever met.
On Wednesday she had a headache extending from the back of her head to the temples. She hardly ever mentions having headaches.
Most mornings these days she is able to shuffle, after I take down the Apo pump, from the bedroom to her bathroom for a shower, where she sits on a shower chair, and then walks back to the bedroom where I attach the infusion from the Apo pump which I prepare while she showers. On Thursday she seemed unable to "compute" her movements, there were spatial relationship problems, so I wheeled her back to the bedroom on the commode/shower chair, which she has not needed to use very often lately.
On Thursday morning she was sure her bed sloped sideways, toward the side she gets out on. Although the mattress looked reasonably level to me, I place my builders spirit level across the bed, and, yes, there was a slight slope to the side, but as I pointed out to her, only about the width of two fingers, about 3cms, so on Friday morning (Domestic Engineer cleaning lady day) I reversed the mattress. Similarly, on Thursday on our trip to visit Polly the PD Nurse, she felt she was tilting into the centre of the car, and that sensation was alleviated by placing my camera bag beneath her feet. At Polly's direction, the Apomine dose has been increased by 0.5ml to 7.0ml plus 13ml of saline in the 20ml syringe, beginning from Friday 10th January.
Also on Thursday, after a sandwich at the hospital we drove over to the LSVT BIG place for an official assessment, which consisted of the usual PD checklist of questions for whatever-it's-called PD scale. She was unable to stand from a seated position without using her arms and a couple of other tests will be made on Monday when the first session of the programme occurs. She was given instruction on a BIG technique to rise from a chair. Although able to do this at the BIG centre she seems to have lost the technique once home and I hesitate to show her since I don't want her to over balance while I can't give proper instruction.
I was puzzled on Thursday that for someone who has nocturia problems and urgency incontinence that she is able to hold her "own" so very well during the day, well, on Thursday anyway, and I don't think she drank less fluid than she normally does. We left home around 9.30am, saw Polly at 11.30am, then she did not need the loo until 3.30pm when we entered the LSVT BIG place, whereas, being an old man I suppose, I made two comfort stops during that period.
To my mind, Friday was a good day; her lady hair dresser who makes house calls came to cut her hair, followed by mine including my face (these days that saves me leaving her on her own or having my hair cut on respite days by less than competent women at my usual barbers); then after lunch the house was cleaned.
Then Saturday turned out to be crap. I scribbled 4 pages of notes that I did not intend to type here but what the heck!
0739 Pump Off 00:08
0806 Pump On 24:05
0813 Dressed self [usually needs help]
0830 I rubbed Tiger Balm Oil on her toes & feet which were dystonic while feet/legs dyskinetic (she does not think the two can happen together; I'm sure they can)
0900 Passive pedalling with power on [I refer to this as "passive pedalling"] for about 1/2 hour until her left foot would not remain on the pedal.
0945 I began playing a CD of soothing piano music [Debussy "Images for Piano] but she complained that the music made her shiver & tremble, maybe because she was dozing off on her recliner when her familiar "walking over my grave" sensations occur. I lowered the volume then the CD finished playing and I did not play anything else.
1000 Meds
1015 Seated in the laundry, she loaded the washing machine {I get to hang stuff on the line]
1045 Found her sitting in laundry crying, unable to rise off chair, severe dystonia of feet and toes burning, leg pains, dyskinesia in legs, and in right hand. She thinks she is ON but confuses ON/OFF with pain and discomfort of dystonia. Says bands around feet are getting tighter, crying in pain.Ants crawling up insides of legs to bum but this is not painful. While walking behind her shuffling from laundry to her recliner, there was a rapid jerkiness overlayed on the motion of her hips.Unexpected touching/bumping of her toes by me or an object causes pain, as does the expectation of such touching.
1100 Dystonia in right hand, fingers stiffen and stretch.
1105 She is relaxing, very little dystonia in left leg plus fingers of both hands, she is going to sleep.
1106 eyes closed, looks very relaxed, no movement in hands or legs, breathing slowly.
1109 Woke saying I must have been asleep." Slight movement in left foot, says "it's tight", feels as if she has "a shoe on".
1110 Sweaty, switched fan on. Sole of left foot burning, rubbing it for relief.
1130 Reading a book.
1230 Dyskinesia of feet,, toes dystonic, bands on feet, big toes painful.
1240 I massged her feet with Tiger Balm oil.
1420 She needed help to loo for poo and to pull her pants down.
1455 Needed help off loo and to pull pants up, helped her shuffle back to recliner.
1555 Called for help to loo, feet and hands dyskinetic, then help off loo and pull up pants then back to the recliner. Fan switched on.
1630 Vigorous dyskinesia both legs, toes painful, stomach churned up, Apo pump feels heavy on her chest.
1735 I rubbed her feet with Ice Gel.
1638 Using passive pedals.
1650 Stopped pedalling, headache.
1655 Asleep on recliner.
1704 Legs almost still, chin wobbling.
1710 Pedalling again.
1800 rescued her off loo and pulled her pants up.
1805 Back on recliner, burning on tops of feet. Both legs dyskinetic.
1845 Panamax for leg pain, badly dyskinetic, pedalling again.
Some time between 2000 & 2100 we both went to bed. Stuffed.
Today, Saturday is much the same except that I'm not taking notes but making video clips each half hour except for loo activities.
She had a referral questionnaire from the Sub-Acute Rehabilitation Unit at the local hospital to be completed by Dr Flower, our current GP last Tuesday. The referral was because in early December the Friendly OT at the local hospital invited her to participate in a live-in respite week or so of physio activities in the new wing of the hospital. What with the holiday season these arrangements proceeded slowly and in the mean time I had organised the LSVT BIG programme for her and that begins seriously tomorrow, Monday. So the rehab session will have to wait at least a month. I think both she and the OT are disappointed that I have managed this in reverse order.
Anyway, we were both saddened to learn that from the end of January Dr Flower, who has young family commitments, will no longer commute from Big Smoke to our town. Dr Flower is the most helpful, thorough and empathetic GP we have ever met.
On Wednesday she had a headache extending from the back of her head to the temples. She hardly ever mentions having headaches.
Most mornings these days she is able to shuffle, after I take down the Apo pump, from the bedroom to her bathroom for a shower, where she sits on a shower chair, and then walks back to the bedroom where I attach the infusion from the Apo pump which I prepare while she showers. On Thursday she seemed unable to "compute" her movements, there were spatial relationship problems, so I wheeled her back to the bedroom on the commode/shower chair, which she has not needed to use very often lately.
On Thursday morning she was sure her bed sloped sideways, toward the side she gets out on. Although the mattress looked reasonably level to me, I place my builders spirit level across the bed, and, yes, there was a slight slope to the side, but as I pointed out to her, only about the width of two fingers, about 3cms, so on Friday morning (Domestic Engineer cleaning lady day) I reversed the mattress. Similarly, on Thursday on our trip to visit Polly the PD Nurse, she felt she was tilting into the centre of the car, and that sensation was alleviated by placing my camera bag beneath her feet. At Polly's direction, the Apomine dose has been increased by 0.5ml to 7.0ml plus 13ml of saline in the 20ml syringe, beginning from Friday 10th January.
Also on Thursday, after a sandwich at the hospital we drove over to the LSVT BIG place for an official assessment, which consisted of the usual PD checklist of questions for whatever-it's-called PD scale. She was unable to stand from a seated position without using her arms and a couple of other tests will be made on Monday when the first session of the programme occurs. She was given instruction on a BIG technique to rise from a chair. Although able to do this at the BIG centre she seems to have lost the technique once home and I hesitate to show her since I don't want her to over balance while I can't give proper instruction.
I was puzzled on Thursday that for someone who has nocturia problems and urgency incontinence that she is able to hold her "own" so very well during the day, well, on Thursday anyway, and I don't think she drank less fluid than she normally does. We left home around 9.30am, saw Polly at 11.30am, then she did not need the loo until 3.30pm when we entered the LSVT BIG place, whereas, being an old man I suppose, I made two comfort stops during that period.
To my mind, Friday was a good day; her lady hair dresser who makes house calls came to cut her hair, followed by mine including my face (these days that saves me leaving her on her own or having my hair cut on respite days by less than competent women at my usual barbers); then after lunch the house was cleaned.
Then Saturday turned out to be crap. I scribbled 4 pages of notes that I did not intend to type here but what the heck!
0739 Pump Off 00:08
0806 Pump On 24:05
0813 Dressed self [usually needs help]
0830 I rubbed Tiger Balm Oil on her toes & feet which were dystonic while feet/legs dyskinetic (she does not think the two can happen together; I'm sure they can)
0900 Passive pedalling with power on [I refer to this as "passive pedalling"] for about 1/2 hour until her left foot would not remain on the pedal.
0945 I began playing a CD of soothing piano music [Debussy "Images for Piano] but she complained that the music made her shiver & tremble, maybe because she was dozing off on her recliner when her familiar "walking over my grave" sensations occur. I lowered the volume then the CD finished playing and I did not play anything else.
1000 Meds
1015 Seated in the laundry, she loaded the washing machine {I get to hang stuff on the line]
1045 Found her sitting in laundry crying, unable to rise off chair, severe dystonia of feet and toes burning, leg pains, dyskinesia in legs, and in right hand. She thinks she is ON but confuses ON/OFF with pain and discomfort of dystonia. Says bands around feet are getting tighter, crying in pain.Ants crawling up insides of legs to bum but this is not painful. While walking behind her shuffling from laundry to her recliner, there was a rapid jerkiness overlayed on the motion of her hips.Unexpected touching/bumping of her toes by me or an object causes pain, as does the expectation of such touching.
1100 Dystonia in right hand, fingers stiffen and stretch.
1105 She is relaxing, very little dystonia in left leg plus fingers of both hands, she is going to sleep.
1106 eyes closed, looks very relaxed, no movement in hands or legs, breathing slowly.
1109 Woke saying I must have been asleep." Slight movement in left foot, says "it's tight", feels as if she has "a shoe on".
1110 Sweaty, switched fan on. Sole of left foot burning, rubbing it for relief.
1130 Reading a book.
1230 Dyskinesia of feet,, toes dystonic, bands on feet, big toes painful.
1240 I massged her feet with Tiger Balm oil.
1420 She needed help to loo for poo and to pull her pants down.
1455 Needed help off loo and to pull pants up, helped her shuffle back to recliner.
1555 Called for help to loo, feet and hands dyskinetic, then help off loo and pull up pants then back to the recliner. Fan switched on.
1630 Vigorous dyskinesia both legs, toes painful, stomach churned up, Apo pump feels heavy on her chest.
1735 I rubbed her feet with Ice Gel.
1638 Using passive pedals.
1650 Stopped pedalling, headache.
1655 Asleep on recliner.
1704 Legs almost still, chin wobbling.
1710 Pedalling again.
1800 rescued her off loo and pulled her pants up.
1805 Back on recliner, burning on tops of feet. Both legs dyskinetic.
1845 Panamax for leg pain, badly dyskinetic, pedalling again.
Some time between 2000 & 2100 we both went to bed. Stuffed.
Today, Saturday is much the same except that I'm not taking notes but making video clips each half hour except for loo activities.
posted by Kilpike | 1:58 pm
0 Comments:
Post a Comment
<< Home