Chapter 1 - Another Beginning
She woke at 7:45, twelve hours after her last meds (1x Sinemet CR 200/50 & 1x Deralin 40) in which time she only needed to rise once at 5:30. A marked change from the night before when she repeatedly had to get in & out of bed because she was unable to make herself comfortable; however in the early hours she was able to walk around the house easily for quite a time in an attempt to tire herself.
She called me out to my "dungeon" (where I am now typing this) to demonstrate how, this morning, she is able to enter, turn & then walk out of the room. Big deal you say. Well, yesterday she came to the corners of the desks then made her exit by taking very small shuffling steps, without lifting her feet from the carpet, in reverse without being able to turn to see behind. She was scared then. Of course you need to appreciate that my "dungeon" is an area of 3x3 metres, populated with two largish desks meeting at right angles , the adjacent corners of which are 100mm apart. Close enough to do a short bloke like me a serious injury if he doesn't stand on tippy-toes as he queezes through. Fair enough, a tight squeeze and too much equipment in here, however an average person complains about the lack of space & quickly escapes.
People tell us & items in this great library-in-the-sky tell us that Parkinson patients must live day to day. There is no way to predict how their symptoms will exhibit from hour to hour, day to day. And this does seem to be the case. Although I suspect that is because of our ignorance of the impact of events & circumstances the patient experiences each living moment. There are just too many interacting variables for us to note & remember to determine how each impacts the symptoms. Many years ago I taught a problem solving course, which at that time was managements' attempt at fixing all their problems; a major premise of the course was that when investigating a fault condition in equipment (or organisation) one must identify & pay particular attention to "changes" made to either the equipment itself or its environment in order to determine the cause of the problem. And many of these "changes" are found to be introduced by human intervention.
She started us on a high protein diet last week. On the diet I'm only supposed to have at most three 100ml glasses of red each week but I compromise by only having half a glass each evening. Now protein upsets the absorption of Sinemet into the blood stream so patients are advised to have meds well clear of meal times. This is difficult now that she only takes three doses each day. Last evening I, the cook, brought forward our meal to 17:00 when I had to be cruel & wake her for she was catching up on sleep. She had her Sinemet CR two & a half hours later, although she complained that "kick in" had not happened by three hours later. So was this the change that impacted her "good" night last night? More observations will tell.
We try to walk around our village each evening, usually between 22:00 & 23:00. A couple of nights ago we stopped near the hall to chat to another moonlight wanderer. After a few minutes mosquitoes discovered us so we hurried home. Application of anti-itch cream & cooling gel together with rubbing alleviated her itching, burning feet & hands, but it took about an hour. Perhaps this "change" induced her very bad night mentioned above?
A few days ago she mentioned that her toes had begun to "curl", one of those known, painful Parkinson problems although she had not experienced it before. It seems the symptom may be either a Parkinsonian symptom or one induced by medication. Now in her case one would say that medication could not be the cause since hers has been reduced appreciably over the previous months. On the other hand, her toe curling, which affects both feet, begins an hour or two after taking Sinemet and seems to stop about the time she is "on". Yes, these days her "on" times are short & "off" times are very long but she prefers that to the horrors of over-medication she experienced a few months ago. This new symptom concerns us because it causes balance problems & what must be avoided is another fall.
About walking. Our village neighbours note whether she walks around the street with the aid of her walker, hanging onto my arm or without support. Some comment that she is getting better when she is walking un-aided; then are surprised that on the following day she needs the walker. Sometimes she is too stiff & shaky to bother walking at all.
Many months after her last visit to Emergency when she saw Dr R. she was able to have an appointment with him. He was the one that flatly stated that she was over-medicated & should gradually reduce medications over a period of months. And that is what she has been doing. Over an hour with him. While Dr R. physically examined her he noticed that the nails on her big toes needed attention (she had delayed returning to the chiropodist). Some of you will remember reading earlier gruesome details about her toe-nails. This doctor believes in treating the whole person. Without ado, after taking a blood test etc, he whipped out clippers and trimmed her nails, smoothed them & rubbed lotion into her toes. I really didn't mind paying $116 for the visit although I was pleased to receive a discount of $16 because we are old timers with the appropriate card.
Some weeks ago she had a call from Mary, the physiotheripist associated with a research project at a university down south. Mary was studying the impact of exercise on Parkinson patients. She was examined by Mary while in the clinic last August and there was a promise of a follow-up examination some months later here at home. We had assumed that would not happen because of the distance involved and because we have not attended any video conference consultations since the over-medication problems resulting in Emergency visits to our local hospital. Mary flew to the national capital on a Friday then drove to our place the following morning where she arrived at 07:00. No meds had been taken before Mary put her through "sheep dog" trials on our patio. Timed walking of 10 metres & return, sitting, standing, ability to use eating implements, ability to get in & out of bed. After meds & kick in of same the tests were repeated. Mary left at 11:00. Over the next few days & nights the patient had very disturbed sleep, calling out loudly enough to wake me even over the noise of my CPAP machine, was up & down repeatedly for the toilet, aches in legs, sensations of floating, once there was writhing of her legs reminiscent of the horror days. By the following Wednesday my notes indicate she had returned to "normal" if there is such a state.
We have the convenience of a Bowen practioner, Margaret, just around the corner from our village. Since last November she has been attending once a fortnight to gain relief from back & leg pain. After each visit she feels as if "kicked by a horse" but without pain, which gradually returns as days go by. Her relief makes life more tolerable.
About the same time she began the regular Bowen treatment I on-line ordered a bucket of anti-oxident vitamins for her. She takes them twice a day; B1, B6, C, E, Folic Acid, Grape Seed Oil, Co Q10 & Omega 3. These cost more than food! She will trial these for about 6 months. Alternative health advocates swear by them to alleviate Parkinson symptoms. Of course, how will we know & in particular which one/s will she need to continue to take, if it all? This is the hard part of identifying which "change" made which impact to the collection of symptoms.
Today is overcast & cool. She is emptying the kitchen cupboards of items I don't use for my cooking exploits (I don't need much) so once I learn the new places in which items will now be hidden perhaps I will not need to complain about all the plastic junk falling on top of me or the difficulty of removing a large saucepan when there are half a dozen smaller ones jammed inside.
When I checked on her she was sitting on a chair, sweating like a pig (do they actually sweat alot?) with rubbish all around her. The sweat gushes out of her whether active or not - just another symptom which if she was able to get rid of would improve her quality of life. I opened the front & rear doors. "That's better" she said as a draft went through the house.
She called me out to my "dungeon" (where I am now typing this) to demonstrate how, this morning, she is able to enter, turn & then walk out of the room. Big deal you say. Well, yesterday she came to the corners of the desks then made her exit by taking very small shuffling steps, without lifting her feet from the carpet, in reverse without being able to turn to see behind. She was scared then. Of course you need to appreciate that my "dungeon" is an area of 3x3 metres, populated with two largish desks meeting at right angles , the adjacent corners of which are 100mm apart. Close enough to do a short bloke like me a serious injury if he doesn't stand on tippy-toes as he queezes through. Fair enough, a tight squeeze and too much equipment in here, however an average person complains about the lack of space & quickly escapes.
People tell us & items in this great library-in-the-sky tell us that Parkinson patients must live day to day. There is no way to predict how their symptoms will exhibit from hour to hour, day to day. And this does seem to be the case. Although I suspect that is because of our ignorance of the impact of events & circumstances the patient experiences each living moment. There are just too many interacting variables for us to note & remember to determine how each impacts the symptoms. Many years ago I taught a problem solving course, which at that time was managements' attempt at fixing all their problems; a major premise of the course was that when investigating a fault condition in equipment (or organisation) one must identify & pay particular attention to "changes" made to either the equipment itself or its environment in order to determine the cause of the problem. And many of these "changes" are found to be introduced by human intervention.
She started us on a high protein diet last week. On the diet I'm only supposed to have at most three 100ml glasses of red each week but I compromise by only having half a glass each evening. Now protein upsets the absorption of Sinemet into the blood stream so patients are advised to have meds well clear of meal times. This is difficult now that she only takes three doses each day. Last evening I, the cook, brought forward our meal to 17:00 when I had to be cruel & wake her for she was catching up on sleep. She had her Sinemet CR two & a half hours later, although she complained that "kick in" had not happened by three hours later. So was this the change that impacted her "good" night last night? More observations will tell.
We try to walk around our village each evening, usually between 22:00 & 23:00. A couple of nights ago we stopped near the hall to chat to another moonlight wanderer. After a few minutes mosquitoes discovered us so we hurried home. Application of anti-itch cream & cooling gel together with rubbing alleviated her itching, burning feet & hands, but it took about an hour. Perhaps this "change" induced her very bad night mentioned above?
A few days ago she mentioned that her toes had begun to "curl", one of those known, painful Parkinson problems although she had not experienced it before. It seems the symptom may be either a Parkinsonian symptom or one induced by medication. Now in her case one would say that medication could not be the cause since hers has been reduced appreciably over the previous months. On the other hand, her toe curling, which affects both feet, begins an hour or two after taking Sinemet and seems to stop about the time she is "on". Yes, these days her "on" times are short & "off" times are very long but she prefers that to the horrors of over-medication she experienced a few months ago. This new symptom concerns us because it causes balance problems & what must be avoided is another fall.
About walking. Our village neighbours note whether she walks around the street with the aid of her walker, hanging onto my arm or without support. Some comment that she is getting better when she is walking un-aided; then are surprised that on the following day she needs the walker. Sometimes she is too stiff & shaky to bother walking at all.
Many months after her last visit to Emergency when she saw Dr R. she was able to have an appointment with him. He was the one that flatly stated that she was over-medicated & should gradually reduce medications over a period of months. And that is what she has been doing. Over an hour with him. While Dr R. physically examined her he noticed that the nails on her big toes needed attention (she had delayed returning to the chiropodist). Some of you will remember reading earlier gruesome details about her toe-nails. This doctor believes in treating the whole person. Without ado, after taking a blood test etc, he whipped out clippers and trimmed her nails, smoothed them & rubbed lotion into her toes. I really didn't mind paying $116 for the visit although I was pleased to receive a discount of $16 because we are old timers with the appropriate card.
Some weeks ago she had a call from Mary, the physiotheripist associated with a research project at a university down south. Mary was studying the impact of exercise on Parkinson patients. She was examined by Mary while in the clinic last August and there was a promise of a follow-up examination some months later here at home. We had assumed that would not happen because of the distance involved and because we have not attended any video conference consultations since the over-medication problems resulting in Emergency visits to our local hospital. Mary flew to the national capital on a Friday then drove to our place the following morning where she arrived at 07:00. No meds had been taken before Mary put her through "sheep dog" trials on our patio. Timed walking of 10 metres & return, sitting, standing, ability to use eating implements, ability to get in & out of bed. After meds & kick in of same the tests were repeated. Mary left at 11:00. Over the next few days & nights the patient had very disturbed sleep, calling out loudly enough to wake me even over the noise of my CPAP machine, was up & down repeatedly for the toilet, aches in legs, sensations of floating, once there was writhing of her legs reminiscent of the horror days. By the following Wednesday my notes indicate she had returned to "normal" if there is such a state.
We have the convenience of a Bowen practioner, Margaret, just around the corner from our village. Since last November she has been attending once a fortnight to gain relief from back & leg pain. After each visit she feels as if "kicked by a horse" but without pain, which gradually returns as days go by. Her relief makes life more tolerable.
About the same time she began the regular Bowen treatment I on-line ordered a bucket of anti-oxident vitamins for her. She takes them twice a day; B1, B6, C, E, Folic Acid, Grape Seed Oil, Co Q10 & Omega 3. These cost more than food! She will trial these for about 6 months. Alternative health advocates swear by them to alleviate Parkinson symptoms. Of course, how will we know & in particular which one/s will she need to continue to take, if it all? This is the hard part of identifying which "change" made which impact to the collection of symptoms.
Today is overcast & cool. She is emptying the kitchen cupboards of items I don't use for my cooking exploits (I don't need much) so once I learn the new places in which items will now be hidden perhaps I will not need to complain about all the plastic junk falling on top of me or the difficulty of removing a large saucepan when there are half a dozen smaller ones jammed inside.
When I checked on her she was sitting on a chair, sweating like a pig (do they actually sweat alot?) with rubbish all around her. The sweat gushes out of her whether active or not - just another symptom which if she was able to get rid of would improve her quality of life. I opened the front & rear doors. "That's better" she said as a draft went through the house.
posted by Kilpike | 8:33 am
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