Chapter 312 - The Week That Was
Although I didn't note much on Monday, she continued with the schedule of 4 meds at 0700, 1100, 1600, 2100 and that is more comfortable for her rather than 0600, 1200, 1800, 2200 when she was eagerly awaiting her pills an hour before the scheduled time. Mid morning her BP was 111/71 67 according to her wrist monitor. As with showering each day this week (although I think she missed one day) she needed to sit on the commode, being incapable of either walking to the shower or standing beneath it. I made an appointment for her to see Dr Flower in the afternoon, to discuss her leg pains, tingles, numbness, left foot turning, collapsing left leg. Dr Flower was suggesting a neurological problem when my Parky gave her a copy of http://www.epda.eu.com/en/parkinsons/in-depth/pdsymptoms/pain/how-might-parkinsons-affect-pain/ that I had printed out. Dr Flower began skimming the page, grabbed a highlighter, marked words in the paragraph
Tuesday was a horror day. Perhaps the expectation of attending the local hospital for an X-ray stressed her too much. At 0630 shower, Apo pump started at 0700 followed by meds and I attached a TENS machine to each leg in an attempt to ease her pains. By 0740 her left leg was too unstable to push her trolley to the loo so she needed the wheel chair and then for any movement after that, including entering the hospital, to the waiting room, the X-ray room then back to the vehicle. The round trip only took an hour but she was very stressed by the time we arrived home at 1200, even though the X-ray technician was very helpful and quick and she remained still enough that all shots were OK. I helped her remove her bra and to dress in the usual hospital outfit. At home she needed a couple of Panamax to ease her aching legs. At 1220 she said that leg tingles began in both legs, tingles moving up and down from toes up to knees, then stopped and a minute later there were aches at the sided of both legs, and by 1225 she was unable to tell where her feet were, the left turning over and as if something was pulling her left foot sideways. While massaging her feet I noticed one felt hot, the other cool. So I placed the thermistor probe of my digital multimeter between her 2nd and 3rd toes (big toe as number 1); the readings being 27C on the left and 35C on the right. As a control I tested my feet at the same positions and the temperatures of both were between 34C and 35C (meter resolution 1C). At 1300 her left foot was 29C and the right 35C. By 1345 she felt "whoozy", her eyesight was "fuzzy"; wanted to lay down. After 1 1/2 hours of sleep she woke at 1530, needing the wheel chair to the loo. At 1600 her left foot was 31-32C, the right 35C-36C; at 2040 left 29C and right 31C. She went to bed at 2130.
Wednesday began at 0300 when she sat up in bed and said loudly "I thought you hadn't returned.", apparently referring to when I went to the loo some hours earlier. She woke at 0520 with her legs tingling. I helped her onto the commode, no power in her legs, unable to walk; then pain in her calves so I attached TENS to both. In conjunction with Polly the PD nurse, it was decided to return to her schedule of 14th September with meds at 0600, 1000, 1400, 1800, 2200, then to drop off the first Comtan at 0600, but that we decided to do later in the week. So at 0600 she had her meds, followed by a shower on the commode chair and the Apo pump was turned on at 0632. By 0641 she was dressed but both feet were kicking forwards. While she was able to push her trolley to her recliner she commented that her left foot was "swelling". Half an hour after her 1200 meds her feet began kicking (dyskinesia?), lasting for an hour before she said at 1450 that "meds had kicked in". Around 1600 both feet were tremoring badly so she calmed it by manually rubbing it but since she couldn't reach her right foot (I wonder why?) she asked me to rub it. At 1800 meds she was bothered by bad tremors (small rapid movements) in both feet so I pressed the bolus button on the pump. By 1815 her feet were stilled but tingling. Several minutes later both feet were tightening and cramping. Ever the amateur mad scientist I measured the temperature between her toes; left 24C-25C, right 28C-29C. At 1821 feet began kicking, she was somewhat "frozen" and she had to be taken to the loo on the wheel chair. She had a painful pulsing in her left temple and both feet began slowly describing circles at the toes; I queried whether she did that on purpose, she said "No". At 2050 she attempted to rise for the loo but neither of her legs would support her so she was wheel chaired there. By 2100 she was in bed; meds at 2200 and the Apo pump off at 2205. Dr Flower rang asking her to see her next Tuesday because there were matters to discuss arising from Tuesday's X-rays; I have the impression there may be something serious.
Polly the PD nurse, in one of our frequent email exchanges (I don't think she has any other PD patients to attend to so I am keeping that quiet in case others learn of her ;-) mentioned "diphasic dyskinesia" with a URL reference. What in hell's name is that?? Then I Googled the term to find many other references, one of which ( http://archneur.jamanetwork.com/article.aspx?articleid=581064 ) was written in 1982 about a patient's situation in 1980.
Then again, a very clear graph ( http://www.hindawi.com/journals/pd/2012/943159/ ) that clearly illustrates the condition.
In our case, her PD was diagnosed 22 years ago, yet in all that time I had not encountered the word "diphasic", none of the many neuros dressed in 3 piece suits seated behind wide polished desks ever mentioned the word. When we lived at the Red Centre a visiting neuro commented that her version of PD was "strange". We have always thought that dyskinesia was caused by too high a peak effective dose, not that dyskinesia can also occur as levadopa (or agonists?) serum levels rise shortly after taking meds, then again as the serum levels decrease to a low level. Perhaps I am guessing but perhaps it's feasible to have peak dose dyskinesia as well? Then throw in some ordinary garden variety PD tremor when the patient is really OFF plus a little dystonia, plus perhaps a little Shaky Leg Syndrome to completely obscure the picture, and then expect the Parky to describe her symptoms accurately at three to six month intervals when she is expected to report back to a disinterested neuro who says "try increasing or decreasing this or that medication a little bit and let me know at your next appointment". And to think of that neuro over in Swan Country, after a 450km drive from where we lived, that told her "learn to live with it and stop shopping around for a neurologist". He was a sodding anal cavity.
Back to the future. On Thursday of this week I took no notes while I videoed each "interesting" change in her symptoms through out the day. I must be slightly sadistic because I was somewhat disappointed that what I assume were diphasic dyskinesia bursts seemed less frequent or different to those the day before, although she said she had a lousy day.
Since she had been placed on Comtan again recently, and we keep raising the issue of vague memories of her experiencing head tingling and bad feelings some years ago. Cancelling Comtan was planned from next Friday; we all thought let's do that sooner; therefore she omitted Comtan from 0600 this past Friday 4th October; but continues with Comatn at 1800. During Friday I made few notes; an early visit to the local hospital with a script for Apomorphine which they have never used but say they can source, some $300 of supermarket shopping, some scripts and consumables from our friendly chemist, then late in the afternoon collection of a new vehicle as replacement for our well worn but worn well 4WD (getting into which she has been having greater difficulty). Our Domestic Engineer who comes every second Friday to clean and a friend around the corner were with her during most of my absence. She reported leg tremors from 0600 to well after 0900. She said nothing of pain.
Yesterday, Saturday, I talked her into taking a spin in the new car down the 4 lane to that small town which has a service centre perched on top of a hill so that no one needs to enter town unless really wishing to do so. We left at 1000, had lunch in the new car (now despoiled with chip crumbs) in the car park (she didn't wish to get out) of Kentucky Fried Chook. Then home again by 1400. A long trip of some 120kms at 80kmh; she didn't wish me to drive any faster (yawn). At 1500 she said "someone's walking over my grave", an expression she uses when a shudder passes through her shoulders, wanted to sleep so I helped her to bed where she woke at 1745 with severe tremors (small rapid movements) in her legs, then loo, before 1800 meds (including Comtan) when she was feeling hot so I opened the rear door for her. By 1830 she was too cool, the door shut and she wrapped herself in a poncho. She needed bed by 2200 yet laying down made her legs pain badly.
Today has been a reasonable day; she says she has had no pain yet tremors have continued most of the day. She says no "kicking" like dyskinesia motions of her legs, I have seen none, yet for several periods of an hour or so when she was ON enough to do some sewing at the kitchen table, her feet beat a loud tattoo on the wooden floor at our kitchen table. Her feet have tingled as far as the ankles. Around 1130 she slept in her recliner. Using her pedal machine failed to relieve the leg tremors. At one point around lunch time when she froze I had a heck of a time helping her up from the kitchen table to return to the recliner. One assisted visit to the loo she did, with assistance, with only socks, not slippers, on her feet and she may have slipped had I not been with her.
Dr P.D. Carer has decided that from tomorrow, Monday, she will not take the 1800 dose of Comtan.
2. radicular pain and paresthesia (tingling, pricking sensation)
then printed a referral for an X-ray examination. I suspect this may have been what the other good neuro had in mind before he referred her to Polly the PD Nurse and the Considerate Neuro but at the time my Parky had no wish for scans which she finds stressful because of her shakes have blurred the pictures in the past. At that time another local GP diagnosed bursitis which faded away after Tiger Balm Oil and a hand held massager was applied.Tuesday was a horror day. Perhaps the expectation of attending the local hospital for an X-ray stressed her too much. At 0630 shower, Apo pump started at 0700 followed by meds and I attached a TENS machine to each leg in an attempt to ease her pains. By 0740 her left leg was too unstable to push her trolley to the loo so she needed the wheel chair and then for any movement after that, including entering the hospital, to the waiting room, the X-ray room then back to the vehicle. The round trip only took an hour but she was very stressed by the time we arrived home at 1200, even though the X-ray technician was very helpful and quick and she remained still enough that all shots were OK. I helped her remove her bra and to dress in the usual hospital outfit. At home she needed a couple of Panamax to ease her aching legs. At 1220 she said that leg tingles began in both legs, tingles moving up and down from toes up to knees, then stopped and a minute later there were aches at the sided of both legs, and by 1225 she was unable to tell where her feet were, the left turning over and as if something was pulling her left foot sideways. While massaging her feet I noticed one felt hot, the other cool. So I placed the thermistor probe of my digital multimeter between her 2nd and 3rd toes (big toe as number 1); the readings being 27C on the left and 35C on the right. As a control I tested my feet at the same positions and the temperatures of both were between 34C and 35C (meter resolution 1C). At 1300 her left foot was 29C and the right 35C. By 1345 she felt "whoozy", her eyesight was "fuzzy"; wanted to lay down. After 1 1/2 hours of sleep she woke at 1530, needing the wheel chair to the loo. At 1600 her left foot was 31-32C, the right 35C-36C; at 2040 left 29C and right 31C. She went to bed at 2130.
Wednesday began at 0300 when she sat up in bed and said loudly "I thought you hadn't returned.", apparently referring to when I went to the loo some hours earlier. She woke at 0520 with her legs tingling. I helped her onto the commode, no power in her legs, unable to walk; then pain in her calves so I attached TENS to both. In conjunction with Polly the PD nurse, it was decided to return to her schedule of 14th September with meds at 0600, 1000, 1400, 1800, 2200, then to drop off the first Comtan at 0600, but that we decided to do later in the week. So at 0600 she had her meds, followed by a shower on the commode chair and the Apo pump was turned on at 0632. By 0641 she was dressed but both feet were kicking forwards. While she was able to push her trolley to her recliner she commented that her left foot was "swelling". Half an hour after her 1200 meds her feet began kicking (dyskinesia?), lasting for an hour before she said at 1450 that "meds had kicked in". Around 1600 both feet were tremoring badly so she calmed it by manually rubbing it but since she couldn't reach her right foot (I wonder why?) she asked me to rub it. At 1800 meds she was bothered by bad tremors (small rapid movements) in both feet so I pressed the bolus button on the pump. By 1815 her feet were stilled but tingling. Several minutes later both feet were tightening and cramping. Ever the amateur mad scientist I measured the temperature between her toes; left 24C-25C, right 28C-29C. At 1821 feet began kicking, she was somewhat "frozen" and she had to be taken to the loo on the wheel chair. She had a painful pulsing in her left temple and both feet began slowly describing circles at the toes; I queried whether she did that on purpose, she said "No". At 2050 she attempted to rise for the loo but neither of her legs would support her so she was wheel chaired there. By 2100 she was in bed; meds at 2200 and the Apo pump off at 2205. Dr Flower rang asking her to see her next Tuesday because there were matters to discuss arising from Tuesday's X-rays; I have the impression there may be something serious.
Polly the PD nurse, in one of our frequent email exchanges (I don't think she has any other PD patients to attend to so I am keeping that quiet in case others learn of her ;-) mentioned "diphasic dyskinesia" with a URL reference. What in hell's name is that?? Then I Googled the term to find many other references, one of which ( http://archneur.jamanetwork.com/article.aspx?articleid=581064 ) was written in 1982 about a patient's situation in 1980.
Then again, a very clear graph ( http://www.hindawi.com/journals/pd/2012/943159/ ) that clearly illustrates the condition.
In our case, her PD was diagnosed 22 years ago, yet in all that time I had not encountered the word "diphasic", none of the many neuros dressed in 3 piece suits seated behind wide polished desks ever mentioned the word. When we lived at the Red Centre a visiting neuro commented that her version of PD was "strange". We have always thought that dyskinesia was caused by too high a peak effective dose, not that dyskinesia can also occur as levadopa (or agonists?) serum levels rise shortly after taking meds, then again as the serum levels decrease to a low level. Perhaps I am guessing but perhaps it's feasible to have peak dose dyskinesia as well? Then throw in some ordinary garden variety PD tremor when the patient is really OFF plus a little dystonia, plus perhaps a little Shaky Leg Syndrome to completely obscure the picture, and then expect the Parky to describe her symptoms accurately at three to six month intervals when she is expected to report back to a disinterested neuro who says "try increasing or decreasing this or that medication a little bit and let me know at your next appointment". And to think of that neuro over in Swan Country, after a 450km drive from where we lived, that told her "learn to live with it and stop shopping around for a neurologist". He was a sodding anal cavity.
Back to the future. On Thursday of this week I took no notes while I videoed each "interesting" change in her symptoms through out the day. I must be slightly sadistic because I was somewhat disappointed that what I assume were diphasic dyskinesia bursts seemed less frequent or different to those the day before, although she said she had a lousy day.
Since she had been placed on Comtan again recently, and we keep raising the issue of vague memories of her experiencing head tingling and bad feelings some years ago. Cancelling Comtan was planned from next Friday; we all thought let's do that sooner; therefore she omitted Comtan from 0600 this past Friday 4th October; but continues with Comatn at 1800. During Friday I made few notes; an early visit to the local hospital with a script for Apomorphine which they have never used but say they can source, some $300 of supermarket shopping, some scripts and consumables from our friendly chemist, then late in the afternoon collection of a new vehicle as replacement for our well worn but worn well 4WD (getting into which she has been having greater difficulty). Our Domestic Engineer who comes every second Friday to clean and a friend around the corner were with her during most of my absence. She reported leg tremors from 0600 to well after 0900. She said nothing of pain.
Yesterday, Saturday, I talked her into taking a spin in the new car down the 4 lane to that small town which has a service centre perched on top of a hill so that no one needs to enter town unless really wishing to do so. We left at 1000, had lunch in the new car (now despoiled with chip crumbs) in the car park (she didn't wish to get out) of Kentucky Fried Chook. Then home again by 1400. A long trip of some 120kms at 80kmh; she didn't wish me to drive any faster (yawn). At 1500 she said "someone's walking over my grave", an expression she uses when a shudder passes through her shoulders, wanted to sleep so I helped her to bed where she woke at 1745 with severe tremors (small rapid movements) in her legs, then loo, before 1800 meds (including Comtan) when she was feeling hot so I opened the rear door for her. By 1830 she was too cool, the door shut and she wrapped herself in a poncho. She needed bed by 2200 yet laying down made her legs pain badly.
Today has been a reasonable day; she says she has had no pain yet tremors have continued most of the day. She says no "kicking" like dyskinesia motions of her legs, I have seen none, yet for several periods of an hour or so when she was ON enough to do some sewing at the kitchen table, her feet beat a loud tattoo on the wooden floor at our kitchen table. Her feet have tingled as far as the ankles. Around 1130 she slept in her recliner. Using her pedal machine failed to relieve the leg tremors. At one point around lunch time when she froze I had a heck of a time helping her up from the kitchen table to return to the recliner. One assisted visit to the loo she did, with assistance, with only socks, not slippers, on her feet and she may have slipped had I not been with her.
Dr P.D. Carer has decided that from tomorrow, Monday, she will not take the 1800 dose of Comtan.
posted by Kilpike | 7:26 pm
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