Chapter 348 - Reversing
On Thursday Dr M. suggested adding an extra Sinemet 100/25 halfway between her 0800, 1200, 1600 and 2000 doses in the schedule directed by Hot Air City Hospital. Since it seemed proper to begin this change on a full day, an additional Sinemet 100/25 was taken at 1000 on Friday.
Later on Friday I sent the following email to an interested person
*****************************
Today she has only taken one additional dose of Sinemet 100/25 at 1000. Since approx 1100 she has had bursts of burning in her left leg, feet have been tingling badly, has been nodding off, needed assistance to the loo but at 1305 returned from the loo unaided (unusual since returning from hospital), her head has been tingling, left eye blurred and painful, headache. At 1210 her BP was 136/89 78, at 1305 her BP was 155/98 115, at 1350 her BP was 146/99 130, right foot trembling, right leg aching, feels tight in the chest, has had a headache for about 10 minutes, chin is wobbling. I told her NOT to take a Sinemet 100/25 at 1400, now at 1410 she feels a little ill, has burped, chest still feels tight, says she feels "pressure" on her ears.
I suspect she is on the verge of a panic attack. I will have her take a Sinemet 100/25 as per 6th June schedule at 1600 and from here on she will continue on that schedule until she sees [West Hospital] clinic.
There is obviously a very delicate balance in her metabolism of meds which switches her between too little and too much. Better sluggish than over the edge.
*****************************
I had an appointment at 1530 to discuss matters with a local "Social Worker"; I was in two minds about going, but since she was much calmer by 1515 when a Carer organised from the place which provides personal care arrived I decided to keep the appointment. I think the Carer, a bright and cheerful woman was good for her because when I returned a little before 1700 they were both chatting and laughing.
However at 1710 as I assisted her to the loo (she had held "off" while I was away) she needed a kitchen chair to sit on at the halfway point, then I had to assist her onto the commode chair (after making room by pushing the kitchen table out of the way) before wheeling her to the loo then back to her recliner. This loo visit took over 20 minutes just for a piddle.
By 1840 both her legs were twisted, the right shaking, severe pains in the calves of both legs, right hand shaking. She took two Panamax. I had her in bed and in her nappy pants by 2100.
She slept through the midnight meds but woke at 0400, feeling immobile, otherwise OK. By 0430 both legs and feet were tingling up to her knees. The side of her left leg "burnt" intermittently.
At 0700 Saturday when I rose the bursts of burning continued in the side of her left leg continued as did the tingling. The Personal Care lady arrived to shower and dress her at 0800. Her showering takes place on the commode/shower chair in which she is wheeled to and from the shower. I had to help her to stand from the commode, hanging onto the bed end for support while Care dressed her in incontinence pants and slacks. Then she had to be assisted into the wheel chair to be wheeled out for breakfast.
She was not too bad around 1000 when I drove her to Saturday Respite, although she needed pushing inside on her walker. She probably had a reasonable day. The same on returning home at 1600, when helping her out of the car was difficult. We carry a collapsible aluminium chair in the car for such a situation; to slide her from the car seat onto the chair which is dragged sideways to allow the car door to be closed before positioning the wheel chair to take her inside.
Today Sunday has been a repeat of the previous days.
0715 Wanted to piddle, transferred her onto the commode.
0730 Needed to poo, so wheeled commode to loo. Did very little.
0743 Swapped Apo pumps, 1 minute left on old, 24:05 on new.
0754 Meds.
0800 Personal Care to shower her. I was needed to assist her stand while dressing. Attempted to use a Pelican belt.
0845 Left leg burning in bursts about 2 minutes long.
0900 Leg burning wearing off.
1145 Meds.
1150 Feels as if she is falling off the Revolutionary chair, but is solidly seated, back against rear of chair, tremors in legs which ache, no burning but toes tingle.
1200 Yawning, tingles in both feet, some burning. Can't get off the chair.
1205 Feet up on a kitchen chair to stop the sliding-off feeling from the Rev chair onto floor, doesn't want to risk a transfer to the recliner.
1215 Needed feet off chair into foot stool and pillow.
1216 Tingling from feet to knees, also in buttocks, feet onto floor.
1220 Needs Rev chair pushed into table to support head in arms on table top., feet on square pillow.
1225 Microwaved spud, cheese, sliced gherkins and sour cream for lunch.
1235 Able to stand from Rev chair, pushed trolley the few paces to her recliner.
1330 Took herself to the loo pushing the trolley, then tidied our bedroom, placed elastic belt for the Apo pump on the towel warmer in the bathroom.
1345 Pushed her trolley back to her recliner.
1350 She dozed off.
1405 I convinced her to take at extra Sinemet 100/25 (as per Dr M's suggestion on Thursday) to test whether tinglings/burnings are induced.
1410 Took herself to the loo pushing trolley. Head tingling.
1415-1425 Because she was unable to get off loo or stand long enough grasping the fireman's pole to raise clothes, I transferred her onto wheelchair with pants down into the bedroom where grasping the bed end she was able to lift her bum far enough to pull up her incontinence pants and slacks, then wheeled to recliner in back room. She thinks the Apo pump elastic belt is still around her middle (it was removed after showering hours ago and just recently she placed it on the towel rail to dry) and because her bra was tight I undid the hooks and she removed it. She was hot and needed her cardigan removed.
1430 She wanted her soft boots and socks removed. She says the Apo pump sits heavily on her chest.
1440 She says her left foot has tight bands around it and her neck is stiff.
1515 Feels cold, both feet are "tied up", right foot is tingling but not the left. Feels very tired. No burning. Her mouth is tingling. Yawning. Socks and boots back on.
1530 Set up a Doris Day movie for her.
1600 Time for her scheduled meds. She refuses to take another Sinemet 100/25, is distressed, her head is tingling. Both legs are dystonic, feet pointing inwards, feels as if there are bands around them. I didn't try to convince her to take the Sinemet.
1700. Movie finished. She needed the loo, unable to stand from her recliner, I transferred her into the wheelchair, only slight difficulty pulling up her pants when she finished, when wheeled back to her recliner.
The above is a layman's assessment of an average shitty day. As I have said often, a 10 to 20 minute inspection in a neuro's office where a few steps are taken, a wrist or two are wobbled, a facial expression is observed, fingers are tapped together are absolutely meaningless measurements of a PWP's quality of life. A neuro needs to see a PWP in a real world environment, not in an office, nor in a busy crowded noisy non-private hospital ward.
I note how well she was while the Carer was with her on Friday afternoon and presumably during the 6 hours of respite on Saturday. I suspect she, and other PWP's like her, control themselves, bottling up their needs and emotions while in public or with strangers or even with friends and relatives.
Is such behaviour a good Quality of Life?
I must be careful, otherwise an average reader may think I am on a short fuse.
I don't think I mentioned the call from the neuro rooms in Big Smoke City on Friday making an appointment with her for 10am on Thursday next week. Seemingly to discuss Duodopa or DBS. Not much parking available but the railway station is close by she was told. That's quite OK until one realises she fears accessing trains (did you notice the gap between train and platform?), at least one change of train is needed to get there, the earliest train from our country bumpkin town gets to the City about 1030 if it's running on time. So we drive (self or community service), allowing for peak hour traffic conditions I estimate 2 1/2 to 3 hours to drive there not taking into account parking, and a nervous distressed PWP who is intolerant of heavy traffic conditions. Or perhaps we stay in a nearby motel on the previous night? But just note our early morning hassles described above. Tomorrow I need to re-schedule the appointment to suit us.
Later on Friday I sent the following email to an interested person
*****************************
Today she has only taken one additional dose of Sinemet 100/25 at 1000. Since approx 1100 she has had bursts of burning in her left leg, feet have been tingling badly, has been nodding off, needed assistance to the loo but at 1305 returned from the loo unaided (unusual since returning from hospital), her head has been tingling, left eye blurred and painful, headache. At 1210 her BP was 136/89 78, at 1305 her BP was 155/98 115, at 1350 her BP was 146/99 130, right foot trembling, right leg aching, feels tight in the chest, has had a headache for about 10 minutes, chin is wobbling. I told her NOT to take a Sinemet 100/25 at 1400, now at 1410 she feels a little ill, has burped, chest still feels tight, says she feels "pressure" on her ears.
I suspect she is on the verge of a panic attack. I will have her take a Sinemet 100/25 as per 6th June schedule at 1600 and from here on she will continue on that schedule until she sees [West Hospital] clinic.
There is obviously a very delicate balance in her metabolism of meds which switches her between too little and too much. Better sluggish than over the edge.
*****************************
I had an appointment at 1530 to discuss matters with a local "Social Worker"; I was in two minds about going, but since she was much calmer by 1515 when a Carer organised from the place which provides personal care arrived I decided to keep the appointment. I think the Carer, a bright and cheerful woman was good for her because when I returned a little before 1700 they were both chatting and laughing.
However at 1710 as I assisted her to the loo (she had held "off" while I was away) she needed a kitchen chair to sit on at the halfway point, then I had to assist her onto the commode chair (after making room by pushing the kitchen table out of the way) before wheeling her to the loo then back to her recliner. This loo visit took over 20 minutes just for a piddle.
By 1840 both her legs were twisted, the right shaking, severe pains in the calves of both legs, right hand shaking. She took two Panamax. I had her in bed and in her nappy pants by 2100.
She slept through the midnight meds but woke at 0400, feeling immobile, otherwise OK. By 0430 both legs and feet were tingling up to her knees. The side of her left leg "burnt" intermittently.
At 0700 Saturday when I rose the bursts of burning continued in the side of her left leg continued as did the tingling. The Personal Care lady arrived to shower and dress her at 0800. Her showering takes place on the commode/shower chair in which she is wheeled to and from the shower. I had to help her to stand from the commode, hanging onto the bed end for support while Care dressed her in incontinence pants and slacks. Then she had to be assisted into the wheel chair to be wheeled out for breakfast.
She was not too bad around 1000 when I drove her to Saturday Respite, although she needed pushing inside on her walker. She probably had a reasonable day. The same on returning home at 1600, when helping her out of the car was difficult. We carry a collapsible aluminium chair in the car for such a situation; to slide her from the car seat onto the chair which is dragged sideways to allow the car door to be closed before positioning the wheel chair to take her inside.
Today Sunday has been a repeat of the previous days.
0715 Wanted to piddle, transferred her onto the commode.
0730 Needed to poo, so wheeled commode to loo. Did very little.
0743 Swapped Apo pumps, 1 minute left on old, 24:05 on new.
0754 Meds.
0800 Personal Care to shower her. I was needed to assist her stand while dressing. Attempted to use a Pelican belt.
0845 Left leg burning in bursts about 2 minutes long.
0900 Leg burning wearing off.
1145 Meds.
1150 Feels as if she is falling off the Revolutionary chair, but is solidly seated, back against rear of chair, tremors in legs which ache, no burning but toes tingle.
1200 Yawning, tingles in both feet, some burning. Can't get off the chair.
1205 Feet up on a kitchen chair to stop the sliding-off feeling from the Rev chair onto floor, doesn't want to risk a transfer to the recliner.
1215 Needed feet off chair into foot stool and pillow.
1216 Tingling from feet to knees, also in buttocks, feet onto floor.
1220 Needs Rev chair pushed into table to support head in arms on table top., feet on square pillow.
1225 Microwaved spud, cheese, sliced gherkins and sour cream for lunch.
1235 Able to stand from Rev chair, pushed trolley the few paces to her recliner.
1330 Took herself to the loo pushing the trolley, then tidied our bedroom, placed elastic belt for the Apo pump on the towel warmer in the bathroom.
1345 Pushed her trolley back to her recliner.
1350 She dozed off.
1405 I convinced her to take at extra Sinemet 100/25 (as per Dr M's suggestion on Thursday) to test whether tinglings/burnings are induced.
1410 Took herself to the loo pushing trolley. Head tingling.
1415-1425 Because she was unable to get off loo or stand long enough grasping the fireman's pole to raise clothes, I transferred her onto wheelchair with pants down into the bedroom where grasping the bed end she was able to lift her bum far enough to pull up her incontinence pants and slacks, then wheeled to recliner in back room. She thinks the Apo pump elastic belt is still around her middle (it was removed after showering hours ago and just recently she placed it on the towel rail to dry) and because her bra was tight I undid the hooks and she removed it. She was hot and needed her cardigan removed.
1430 She wanted her soft boots and socks removed. She says the Apo pump sits heavily on her chest.
1440 She says her left foot has tight bands around it and her neck is stiff.
1515 Feels cold, both feet are "tied up", right foot is tingling but not the left. Feels very tired. No burning. Her mouth is tingling. Yawning. Socks and boots back on.
1530 Set up a Doris Day movie for her.
1600 Time for her scheduled meds. She refuses to take another Sinemet 100/25, is distressed, her head is tingling. Both legs are dystonic, feet pointing inwards, feels as if there are bands around them. I didn't try to convince her to take the Sinemet.
1700. Movie finished. She needed the loo, unable to stand from her recliner, I transferred her into the wheelchair, only slight difficulty pulling up her pants when she finished, when wheeled back to her recliner.
The above is a layman's assessment of an average shitty day. As I have said often, a 10 to 20 minute inspection in a neuro's office where a few steps are taken, a wrist or two are wobbled, a facial expression is observed, fingers are tapped together are absolutely meaningless measurements of a PWP's quality of life. A neuro needs to see a PWP in a real world environment, not in an office, nor in a busy crowded noisy non-private hospital ward.
I note how well she was while the Carer was with her on Friday afternoon and presumably during the 6 hours of respite on Saturday. I suspect she, and other PWP's like her, control themselves, bottling up their needs and emotions while in public or with strangers or even with friends and relatives.
Is such behaviour a good Quality of Life?
I must be careful, otherwise an average reader may think I am on a short fuse.
I don't think I mentioned the call from the neuro rooms in Big Smoke City on Friday making an appointment with her for 10am on Thursday next week. Seemingly to discuss Duodopa or DBS. Not much parking available but the railway station is close by she was told. That's quite OK until one realises she fears accessing trains (did you notice the gap between train and platform?), at least one change of train is needed to get there, the earliest train from our country bumpkin town gets to the City about 1030 if it's running on time. So we drive (self or community service), allowing for peak hour traffic conditions I estimate 2 1/2 to 3 hours to drive there not taking into account parking, and a nervous distressed PWP who is intolerant of heavy traffic conditions. Or perhaps we stay in a nearby motel on the previous night? But just note our early morning hassles described above. Tomorrow I need to re-schedule the appointment to suit us.
posted by Kilpike | 6:00 pm
0 Comments:
Post a Comment
<< Home