Chapter 311 - Changes
Notes written Monday 23rd. When I asked her this morning what she thinks of Apomine so far, she
said "It doesn't seem to be filling in the gaps". In my opinion we
are both putting more effort and time into procedures with no
improvements in her condition. We appreciate that she is only a
little over a week on Apomine and that adjustments are required so
we were looking forward to seeing her Considerate Neuro again this Thursday as
indicated when we last saw him but are disappointed that the
appointment letters which arrived a few days ago indicate that 24th
October is her next appointment. (This turned out to be a bureaucratic error and we see him this coming Thursday as expected)
In the previous post I mentioned because she had been solidly OFF leading up to her 1400 and 1800 meds I intended to give her a bolus prior to those times. But at 1340 Sunday she became cold , "chilled inside to out", then felt hot and slightly nauseous, felt dreadful and wanted to take her meds early. Probably mistakenly, I decided to try a bolus. Five minutes later she felt less nauseous, at 1350 yawned, at 1400 felt much better and took usual meds. Then from 1450 she fell asleep in her chair, waking about 1630 when she was disoriented and "floating" then dozed until 1710 when she woke, went outside to water some flowers but changed her mind, feeling confused so came inside again. At 1735 she felt good, "better than I ever felt 20 minutes before meds time." I had her walk around the kitchen table which she did quite well without her walker (on the spur of the moment she decided against using the walker). She said she suddenly felt "bright". So in view of such fluctuations there have been no further bolus shots as I had planned.
Some of the insertion points have bumps beneath. One point became very itchy but that is fading. Usually minor bruising occurs from where the sticky film was removed, not at the site itself. The damn stuff is hard to remove, although she says the removal does not hurt.
I thought she was to see the local physio this morning but I had mixed up the dates. The substitute GP for Dr Flower has not called with any bad results from the blood and urine tests so I made an appointment to see him on Wednesday. She needs to see someone, anyone, who may be able to help with the pain and tingling in her legs and feet.
Yesterday has been the only day she had no left leg collapsing when her left foot twists inwards, but possible because she is being extra cautious .
This morning she woke and had a Sinemet 250 at 0200, then unable to return to sleep, rose at 0330, banged her walker into me in my bed (accidentally), collided with the wardrobe on her way out to her chair in the TV room. When I woke at 0600 she had spent from 0500 to 0600 on the loo trying to do a job. Then our day began with shower, apo etc etc.
Notes written Tuesday 24th. I woke at 6am to find her on the loo where she had been since 5am . Her feet clumped as she walked stiff-legged back to the bedroom. Later when I emptied the commode bowl I noticed an oily film on top; she has noticed a same on another occasion when she emptied it.
Both lower legs are very sore and there is a sore spot on her right thigh.
She phoned me at lunch time today (Tuesdays is lunch at a Thai restaurant for me) from Respite where she had been very shaky from 11am. She had taken her 10am meds on time as I drive her to there. She wanted to be collected and taken home. She sounded on the verge of a panic attack. At home around 1330 she was eager to bring forward her 1400 meds. I suggested a bolus shot instead at 1340 when she her legs were shaking quite a lot. When she raised her legs on the chair her legs became still long before the bolus could have had an impact. Immediately after her usual 1400 meds she needed the loo and was still there at 1440.
Half an hour at least before each meds time she is looking forward to taking medication. During the afternoon she slept between 1445 and 1600. A little after 6pm she called on the CB, frozen on the shower chair next to the loo unable to pull up her trousers.
Tucked into bed and asleep after removal of the Apo pump at 2215, she began to speak loudly and clearly, giggled and thrashed her legs about.
Notes Wednesday 25th. She said she slept well last night, failing to take the Sinemet 250 now usually taken around 0200. Almost continuous pains in both lower legs. At 1215 she froze going into the bathroom for the loo. We saw the stand-in GP at 1430. After having trouble finding the blood and urine test reports from last Friday he slowly read the conclusions on his screen, finding everything "normal" and he seemed to think the lack of a positive UTI result was due to his prescribing antibiotics. I couldn't be bothered to enlighten him that since the tests were taken early last Friday morning and the script was filled later the same day then the unnecessary medication had no effect on a non-existent condition.
Notes Thursday 26th. We showered (she wheeled there seated on the commode chair), dressed, set up Apo pump by 0620 for an early start for the Hot Air City Hospital, except she needed to lay on the bed because she was unable to bear the pain in her legs, which she described as "the worst they have been". When we arrived at the hospital car park she was unable to walk the distance so I pushed her in her walker. We arrived early so I bought her puzzle magazines and I had a coffee. During the day I used the toilet three or four times, yet she did not need to until we returned home and that I simply do not understand!! A stressful morning for her being pushed in her walker in the busy hospital, answering the questions on the usual questionnaire prior to meeting with Polly the PD Nurse then the Considerate Neuro. He pointed out that the "kicking" motion of her feet (as she sat in her walker) was dyskonetic in nature, therefore too much medication, so he wants her to cancel medications at 1000 and bring forward the 1400 to 1200 for a week before cancelling each of her Comtans at weekly intervals thereafter. By the time we left the hospital, I was irritable, she was stressed, still unable to walk but afraid I was about to tip her out of the walker, so she waited on a bus seat outside the main entrance where we noticed people double parking and parking longer than allowed, so I left her there, brought the truck up and double parked while I helped her in. A gust of wind caught the heavy duty plastic bag she has sat on for years and it disappeared. It has deserted the trusty vehicle now that we are trading it in. We called at the junk food place near the airport but she wished to stay in the vehicle. She had no wish to enter the Big store when I went to look for a jacket. She took her 1400 meds 15 minutes early because she needed them although there was no shaking but her feet were burning and she was very slow. By 1730, at home, she felt herself "floating", unable to concentrate, feeling cold, leg pains in calves and under the arches of her feet, very sleepy.
Notes Friday 27th. This morning she pushed her walker to the bathroom to have a shower. Yesterday she couldn't. I took video clips, at least hourly, of her feet activities and her hands completing the Parky loved finger tip exercise which the Considerate Neuro said was a good way to determine whether the Parky was OFF or ON. After editing and merging the clips into one file I must confess I see little difference between one test and another throughout today. She woke at 1600 after an hour's sleep complaining of a pain over her left eye which she then told me was there all day. By 1800 the pain was completely across her forehead. Her feet continue to tingle and are painful when on the floor. When I took down the Apo pump the insertion point bled quite a lot, even though she did not feel it being withdrawn. The next day there is a deep bruise and a large lump at the site.
Notes Saturday 28th. She had so much leg pain this morning I rubbed them with Ice Gel. She did not shower today. Then I wondered why we had not used the Circulation Booster or the small hand held TENS machines to ease her leg pains. So I attached the pads of the Circulation Booster to her right leg (paining the most at the time) and lower back and with both feet on the pads. Later the pads were removed from her back onto her left leg. The foot pads are not very effective because her feet make poor contact while they tremble. She was well enough to attempt some sewing but by late morning she too sluggish to proceed. By midday she had a pain over her left eye. At 1730 she needed the meds half an hour early. At 1830 as she went to the loo she said she was "feeling all together" even though her left leg was "failing and felt unstable". At 1845 as she returned from the loo, I was preparing food, when I noticed her leaning on the wall. Then as she began to move toward the TV room her body swayed strangely and was able to support her before she fell. Her left leg looked flexible, seeming to bend, easily sideways at the knee, her left foot rolled out, her left ankle almost touching the floor. Holding her under the left armpit I guided her toward her TV chair, she sagging each time her left foot needed to take her weight; fortunately there were only six or seven steps to her chair. Again she had a mild headache beginning over her left eye, progressing across her forehead by 1700 then fading away.
Today Sunday 29th. At 0545 I wheeled her seated on the commode to the loo, then to shower. At a little after 0700 I connected our small TENS machines, one to each of her legs to ease the pains. By 0800 she was sewing at the kitchen table, but she stopped at 1030 because she had been making too many errors, so I helped her back to her TV chair. She took what were to be her midday meds at 1100 because for the previous half hour she had felt awful, shaky and feeling very OFF. Since about 1200 she has returned to her sewing at the kitchen table.
Her schedule as prepared after her last Considerate Neuro appointment, except that she is modifying the times to be more evenly spaced through out the day (to be posted later)
In the previous post I mentioned because she had been solidly OFF leading up to her 1400 and 1800 meds I intended to give her a bolus prior to those times. But at 1340 Sunday she became cold , "chilled inside to out", then felt hot and slightly nauseous, felt dreadful and wanted to take her meds early. Probably mistakenly, I decided to try a bolus. Five minutes later she felt less nauseous, at 1350 yawned, at 1400 felt much better and took usual meds. Then from 1450 she fell asleep in her chair, waking about 1630 when she was disoriented and "floating" then dozed until 1710 when she woke, went outside to water some flowers but changed her mind, feeling confused so came inside again. At 1735 she felt good, "better than I ever felt 20 minutes before meds time." I had her walk around the kitchen table which she did quite well without her walker (on the spur of the moment she decided against using the walker). She said she suddenly felt "bright". So in view of such fluctuations there have been no further bolus shots as I had planned.
Some of the insertion points have bumps beneath. One point became very itchy but that is fading. Usually minor bruising occurs from where the sticky film was removed, not at the site itself. The damn stuff is hard to remove, although she says the removal does not hurt.
I thought she was to see the local physio this morning but I had mixed up the dates. The substitute GP for Dr Flower has not called with any bad results from the blood and urine tests so I made an appointment to see him on Wednesday. She needs to see someone, anyone, who may be able to help with the pain and tingling in her legs and feet.
Yesterday has been the only day she had no left leg collapsing when her left foot twists inwards, but possible because she is being extra cautious .
This morning she woke and had a Sinemet 250 at 0200, then unable to return to sleep, rose at 0330, banged her walker into me in my bed (accidentally), collided with the wardrobe on her way out to her chair in the TV room. When I woke at 0600 she had spent from 0500 to 0600 on the loo trying to do a job. Then our day began with shower, apo etc etc.
Notes written Tuesday 24th. I woke at 6am to find her on the loo where she had been since 5am . Her feet clumped as she walked stiff-legged back to the bedroom. Later when I emptied the commode bowl I noticed an oily film on top; she has noticed a same on another occasion when she emptied it.
Both lower legs are very sore and there is a sore spot on her right thigh.
She phoned me at lunch time today (Tuesdays is lunch at a Thai restaurant for me) from Respite where she had been very shaky from 11am. She had taken her 10am meds on time as I drive her to there. She wanted to be collected and taken home. She sounded on the verge of a panic attack. At home around 1330 she was eager to bring forward her 1400 meds. I suggested a bolus shot instead at 1340 when she her legs were shaking quite a lot. When she raised her legs on the chair her legs became still long before the bolus could have had an impact. Immediately after her usual 1400 meds she needed the loo and was still there at 1440.
Half an hour at least before each meds time she is looking forward to taking medication. During the afternoon she slept between 1445 and 1600. A little after 6pm she called on the CB, frozen on the shower chair next to the loo unable to pull up her trousers.
Tucked into bed and asleep after removal of the Apo pump at 2215, she began to speak loudly and clearly, giggled and thrashed her legs about.
Notes Wednesday 25th. She said she slept well last night, failing to take the Sinemet 250 now usually taken around 0200. Almost continuous pains in both lower legs. At 1215 she froze going into the bathroom for the loo. We saw the stand-in GP at 1430. After having trouble finding the blood and urine test reports from last Friday he slowly read the conclusions on his screen, finding everything "normal" and he seemed to think the lack of a positive UTI result was due to his prescribing antibiotics. I couldn't be bothered to enlighten him that since the tests were taken early last Friday morning and the script was filled later the same day then the unnecessary medication had no effect on a non-existent condition.
Notes Thursday 26th. We showered (she wheeled there seated on the commode chair), dressed, set up Apo pump by 0620 for an early start for the Hot Air City Hospital, except she needed to lay on the bed because she was unable to bear the pain in her legs, which she described as "the worst they have been". When we arrived at the hospital car park she was unable to walk the distance so I pushed her in her walker. We arrived early so I bought her puzzle magazines and I had a coffee. During the day I used the toilet three or four times, yet she did not need to until we returned home and that I simply do not understand!! A stressful morning for her being pushed in her walker in the busy hospital, answering the questions on the usual questionnaire prior to meeting with Polly the PD Nurse then the Considerate Neuro. He pointed out that the "kicking" motion of her feet (as she sat in her walker) was dyskonetic in nature, therefore too much medication, so he wants her to cancel medications at 1000 and bring forward the 1400 to 1200 for a week before cancelling each of her Comtans at weekly intervals thereafter. By the time we left the hospital, I was irritable, she was stressed, still unable to walk but afraid I was about to tip her out of the walker, so she waited on a bus seat outside the main entrance where we noticed people double parking and parking longer than allowed, so I left her there, brought the truck up and double parked while I helped her in. A gust of wind caught the heavy duty plastic bag she has sat on for years and it disappeared. It has deserted the trusty vehicle now that we are trading it in. We called at the junk food place near the airport but she wished to stay in the vehicle. She had no wish to enter the Big store when I went to look for a jacket. She took her 1400 meds 15 minutes early because she needed them although there was no shaking but her feet were burning and she was very slow. By 1730, at home, she felt herself "floating", unable to concentrate, feeling cold, leg pains in calves and under the arches of her feet, very sleepy.
Notes Friday 27th. This morning she pushed her walker to the bathroom to have a shower. Yesterday she couldn't. I took video clips, at least hourly, of her feet activities and her hands completing the Parky loved finger tip exercise which the Considerate Neuro said was a good way to determine whether the Parky was OFF or ON. After editing and merging the clips into one file I must confess I see little difference between one test and another throughout today. She woke at 1600 after an hour's sleep complaining of a pain over her left eye which she then told me was there all day. By 1800 the pain was completely across her forehead. Her feet continue to tingle and are painful when on the floor. When I took down the Apo pump the insertion point bled quite a lot, even though she did not feel it being withdrawn. The next day there is a deep bruise and a large lump at the site.
Notes Saturday 28th. She had so much leg pain this morning I rubbed them with Ice Gel. She did not shower today. Then I wondered why we had not used the Circulation Booster or the small hand held TENS machines to ease her leg pains. So I attached the pads of the Circulation Booster to her right leg (paining the most at the time) and lower back and with both feet on the pads. Later the pads were removed from her back onto her left leg. The foot pads are not very effective because her feet make poor contact while they tremble. She was well enough to attempt some sewing but by late morning she too sluggish to proceed. By midday she had a pain over her left eye. At 1730 she needed the meds half an hour early. At 1830 as she went to the loo she said she was "feeling all together" even though her left leg was "failing and felt unstable". At 1845 as she returned from the loo, I was preparing food, when I noticed her leaning on the wall. Then as she began to move toward the TV room her body swayed strangely and was able to support her before she fell. Her left leg looked flexible, seeming to bend, easily sideways at the knee, her left foot rolled out, her left ankle almost touching the floor. Holding her under the left armpit I guided her toward her TV chair, she sagging each time her left foot needed to take her weight; fortunately there were only six or seven steps to her chair. Again she had a mild headache beginning over her left eye, progressing across her forehead by 1700 then fading away.
Today Sunday 29th. At 0545 I wheeled her seated on the commode to the loo, then to shower. At a little after 0700 I connected our small TENS machines, one to each of her legs to ease the pains. By 0800 she was sewing at the kitchen table, but she stopped at 1030 because she had been making too many errors, so I helped her back to her TV chair. She took what were to be her midday meds at 1100 because for the previous half hour she had felt awful, shaky and feeling very OFF. Since about 1200 she has returned to her sewing at the kitchen table.
Her schedule as prepared after her last Considerate Neuro appointment, except that she is modifying the times to be more evenly spaced through out the day (to be posted later)
posted by Kilpike | 1:13 pm
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