Chapter 314 - Making New Discoveries
For ages now I have been haphazardly noting her comments about "tingles" in her toes, feet, legs and buttocks; "ants crawling" inside her legs; that hideous feeling she describes as "someone walking across my grave" when she shudders and twitches with weird feelings across her shoulders, up her neck into her head. Sensations not mentioned often enough to the professionals because such sound so colloquial, so Old Aunt Mary like. Those sensations that reduce quality of life to crap.
Recently she has repeatedly experienced failures of her left leg to support her weight. The failure is somewhat predictable because her left foot begins to "swell" (un-noticeably to me) and her left ankle may roll slightly outward. I think it was Saturday before last she wanted to whisk some cream, her left leg gave way and she saved herself from falling by grabbing the kitchen bench top (Perhaps I had already mentioned this?). Then yesterday, Sunday, we decided to renew our Sunday lunches at the Club, although she felt more confident going mid-afternoon. So we had a light lunch, a chai latte, a muga-ccino, after which she wanted to visit one of her favourite rag shops. So down the street we walked 50 metres or so when we met an elderly acquaintance whose wife also has PD. Suddenly, in the middle of small talk, she collapsed to the left, her walker rotated in sympathy, yet I was able to grasp for her, for my hand was resting on her walker; the three of us, she, me, and the walker performed a pirouette on the footpath as she slumped onto the seat of the walker. A few minutes later we continued on our way. About 150 metres further along the street we came to the shop, but she was uncertain about her left leg and needed to sit on a bench seat, just as the shop doors were shut at 4pm. So an unsuccessful and dangerous walk for her. We returned slowly to our car parked at the rear of the club. Then around to the super market; I shopped, she remained in the car.
This is an evolving scenario. Please read on.
Recently ( I think I wrote about this) she had an X-ray of her lower back to check for spinal injury that may be causing her "tingles" and etc. Last visit to Hot Air City hospital a neurologist commented that the X-ray images were preferred to a report written by others in order to assess how much damage there exists in her spine (there is some apparently). So I collected all the images, even from several years ago, held at our local hospital, to take to Hot Air City when we visit again next Thursday.
I dread the thought of her undergoing spinal repair work, should such be required and advisable, and then suffering the pains of hell (that mythical locality) while dyskinetically tremoring in a hospital bed waiting for nursing staff to muddle and delay her Parky meds, delay bringing piddle and poop containers, or inserting and removing catheters. I don't think she has thought of the complications; I won't mention them. Quality of life could become a fairy story.
Now I consider myself reasonably competent in locating material on the web yet I have never noticed what she found last night: items such as "Neuropathy in Parkinson's Disease May Be Related to L-Dopa Exposure" and "Neuropathy Is Common In Parkinson's Disease". So what is "neuropathy"? Tingling, numbness and pain in the extremities due to nerve damage and/or compression, with a possibility of permanent damage.
For a layperson's description of neuropathy have a look at
http://www.neurology.org/content/77/22/e132.long
a consumer's version of a study done by Steven Karceski in 2011. I am tempted to pay $30 for the original paper. Once knowing what to look for, one can find many references to neuropathology and PD.
There are many other references associating peripheral neuropathy and L-Dopa and also a lack of Vitamin B12 that may be a causative factor. There seem to be similarities to the feet and toe problems experienced by diabetics.
When our Dr Flower prescribed B12 injections some months ago (the most recent injection was last week) I assumed Dr Flower was routinely responding to a very low result for one parameter in a recent blood test. The next time I see her I must ask whether she is aware of the L-Dopa/B12 association. One way or another, she is an excellent GP.
Interestingly, I indirectly asked my PWP this morning whether there had been any changes in the amount of tingling & etc that she was experiencing; her rapid answer was "Yes, it's only in my feet and toes now". I suspect there is an occasional tingle further up the legs. What has changed? Well, several weeks ago now she stopped taking Comtan which I have recently been told has a 30% positive impact on the quantity of L-Dopa in the system of the PWP and in the last week, at the suggestion of Polly the Wonder Parky Nurse, her Apomine concentration was increased from 2.7ml to 3.0ml in a total of 10ml Apomine/saline mixture as well as using the pump 24 hours per day. This means I prepare two syringes each day, attaching one after the morning shower and replacing it with the second on going to bed between 10pm and 11pm, without changing the needle. So it seems to me we are reducing her L-Dopa intake.
I may attempt to relate these changes to the amount of tingling, for in my "interrogations" of her, I had asked where the tingling/pain was occurring.
She has decided not to attend the "Sheltered Workshop" (Respite), which has been closed for several weeks due to a flu outbreak, tomorrow because she does not wish to freeze and be unable to lift herself off the loo.
Yesterday I pushed her trolley (on which she keeps the necessities and acts as a walker within the house) towards where she sat; the wheels being equally spaced about her feet, each foot being several centimetres from each wheel. She exclaimed that I had run over her feet; I had not. As I moved the trolley back and forth, carefully avoiding her feet, she said she experienced a rubbing/scraping sensation on each foot. Can one's mind generate such sensations? Has she some sort of built in proximity detector? (joke)
Last Tuesday we had an adjustable bed delivered for her. So now she is able to raise her head or feet independently and is less reliant upon being packed up with pillows.
Recently she has mentioned that her fingers are becoming stiff and slow while sewing and when her meds wear off. This is something new for her; a disaster for her should it worsen.
Oh, two other things, I am watching a video course "The Neuroscience of Everyday Life" (a The Great Courses production) in which Prof Sam Wang mentioned that PWP's with their dopamine deficiency, tend not to cope well with trial and error tasks; well, I think he said that, I must return to that lecture again. I have unsuccessfully Googled such a relationship without finding anything. Last year when I first began Lumosity Brain Training I also enrolled her but low scoring on the tests discouraged her from continuing. Yesterday I asked her which of the Lumosity games she disliked the most; she replied "The one with all the peoples names" referring to "Familiar Faces" in which the player, acting as an order taker, remembers the names of customers and their orders at a fast food restaurant. She said she had difficulty remembering customers' names (long term from game to game) but found remembering the customers' orders easy (short term memory within each game).
Recently she has repeatedly experienced failures of her left leg to support her weight. The failure is somewhat predictable because her left foot begins to "swell" (un-noticeably to me) and her left ankle may roll slightly outward. I think it was Saturday before last she wanted to whisk some cream, her left leg gave way and she saved herself from falling by grabbing the kitchen bench top (Perhaps I had already mentioned this?). Then yesterday, Sunday, we decided to renew our Sunday lunches at the Club, although she felt more confident going mid-afternoon. So we had a light lunch, a chai latte, a muga-ccino, after which she wanted to visit one of her favourite rag shops. So down the street we walked 50 metres or so when we met an elderly acquaintance whose wife also has PD. Suddenly, in the middle of small talk, she collapsed to the left, her walker rotated in sympathy, yet I was able to grasp for her, for my hand was resting on her walker; the three of us, she, me, and the walker performed a pirouette on the footpath as she slumped onto the seat of the walker. A few minutes later we continued on our way. About 150 metres further along the street we came to the shop, but she was uncertain about her left leg and needed to sit on a bench seat, just as the shop doors were shut at 4pm. So an unsuccessful and dangerous walk for her. We returned slowly to our car parked at the rear of the club. Then around to the super market; I shopped, she remained in the car.
This is an evolving scenario. Please read on.
Recently ( I think I wrote about this) she had an X-ray of her lower back to check for spinal injury that may be causing her "tingles" and etc. Last visit to Hot Air City hospital a neurologist commented that the X-ray images were preferred to a report written by others in order to assess how much damage there exists in her spine (there is some apparently). So I collected all the images, even from several years ago, held at our local hospital, to take to Hot Air City when we visit again next Thursday.
I dread the thought of her undergoing spinal repair work, should such be required and advisable, and then suffering the pains of hell (that mythical locality) while dyskinetically tremoring in a hospital bed waiting for nursing staff to muddle and delay her Parky meds, delay bringing piddle and poop containers, or inserting and removing catheters. I don't think she has thought of the complications; I won't mention them. Quality of life could become a fairy story.
Now I consider myself reasonably competent in locating material on the web yet I have never noticed what she found last night: items such as "Neuropathy in Parkinson's Disease May Be Related to L-Dopa Exposure" and "Neuropathy Is Common In Parkinson's Disease". So what is "neuropathy"? Tingling, numbness and pain in the extremities due to nerve damage and/or compression, with a possibility of permanent damage.
For a layperson's description of neuropathy have a look at
http://www.neurology.org/content/77/22/e132.long
a consumer's version of a study done by Steven Karceski in 2011. I am tempted to pay $30 for the original paper. Once knowing what to look for, one can find many references to neuropathology and PD.
There are many other references associating peripheral neuropathy and L-Dopa and also a lack of Vitamin B12 that may be a causative factor. There seem to be similarities to the feet and toe problems experienced by diabetics.
When our Dr Flower prescribed B12 injections some months ago (the most recent injection was last week) I assumed Dr Flower was routinely responding to a very low result for one parameter in a recent blood test. The next time I see her I must ask whether she is aware of the L-Dopa/B12 association. One way or another, she is an excellent GP.
Interestingly, I indirectly asked my PWP this morning whether there had been any changes in the amount of tingling & etc that she was experiencing; her rapid answer was "Yes, it's only in my feet and toes now". I suspect there is an occasional tingle further up the legs. What has changed? Well, several weeks ago now she stopped taking Comtan which I have recently been told has a 30% positive impact on the quantity of L-Dopa in the system of the PWP and in the last week, at the suggestion of Polly the Wonder Parky Nurse, her Apomine concentration was increased from 2.7ml to 3.0ml in a total of 10ml Apomine/saline mixture as well as using the pump 24 hours per day. This means I prepare two syringes each day, attaching one after the morning shower and replacing it with the second on going to bed between 10pm and 11pm, without changing the needle. So it seems to me we are reducing her L-Dopa intake.
I may attempt to relate these changes to the amount of tingling, for in my "interrogations" of her, I had asked where the tingling/pain was occurring.
She has decided not to attend the "Sheltered Workshop" (Respite), which has been closed for several weeks due to a flu outbreak, tomorrow because she does not wish to freeze and be unable to lift herself off the loo.
Yesterday I pushed her trolley (on which she keeps the necessities and acts as a walker within the house) towards where she sat; the wheels being equally spaced about her feet, each foot being several centimetres from each wheel. She exclaimed that I had run over her feet; I had not. As I moved the trolley back and forth, carefully avoiding her feet, she said she experienced a rubbing/scraping sensation on each foot. Can one's mind generate such sensations? Has she some sort of built in proximity detector? (joke)
Last Tuesday we had an adjustable bed delivered for her. So now she is able to raise her head or feet independently and is less reliant upon being packed up with pillows.
Recently she has mentioned that her fingers are becoming stiff and slow while sewing and when her meds wear off. This is something new for her; a disaster for her should it worsen.
Oh, two other things, I am watching a video course "The Neuroscience of Everyday Life" (a The Great Courses production) in which Prof Sam Wang mentioned that PWP's with their dopamine deficiency, tend not to cope well with trial and error tasks; well, I think he said that, I must return to that lecture again. I have unsuccessfully Googled such a relationship without finding anything. Last year when I first began Lumosity Brain Training I also enrolled her but low scoring on the tests discouraged her from continuing. Yesterday I asked her which of the Lumosity games she disliked the most; she replied "The one with all the peoples names" referring to "Familiar Faces" in which the player, acting as an order taker, remembers the names of customers and their orders at a fast food restaurant. She said she had difficulty remembering customers' names (long term from game to game) but found remembering the customers' orders easy (short term memory within each game).
posted by Kilpike | 3:55 pm
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