Chapter 432 - Tired and Depressed
Her? I don't know, but I am. And I postpone typing this blog; it causes me to mull over the ongoing, repetitive cycle of days and that is depressing.
Her daily behaviour includes a burst of dyskinesia beginning at approximately 1730 continuing to 2000, sometimes to 2200. Sometimes there is a burst around lunch time. How can I tell? Recently I read about an exercise toy, the FitBit Alto. Down I went to our local Hardly Normal store to ask whether the Alto could be mounted around an ankle of a PD sufferer rather than a wrist and whether data export was possible. A cautious response was forthcoming and I was recommended to contact FitBit Support. I did so. Miraculously within a few hours there was a response pointing out that the device was not a medical tool, must not be used for diagnosis, was inaccurate; ignoring my query about data export. Somewhat irate I responded that I was not diagnosing anything but only wished to monitor leg dyskinesias etc etc and was it possible to export the data. Again, another quick response directing me to a page on their site describing data export, which, had I looked a little harder I may have found myself. So on Saturday of the previous weekend down to Hardly Normal's again to buy a FitBit Alto with a large wrist strap, charging the device overnight and fitting it on Sunday. The only difficulty experienced is closing the studs on the band, virtually impossible, so I use a small piece of duct tape to hold the Alto to hold the band closed before covering it with the top of a sock (she always wears socks). It works!! I am not impressed with seeing the data in spreadsheet form; it is not as meaningful as Snagging the graphical display which is shown in bar chart format; bars coloured yellow, orange and green representing an increasing number of steps. I don't believe the colours can be seen as representing intensity of movement, a shame perhaps but the graph gets the message across. Although the time scale is course at about 2 hours/cm, in her case he afternoon dyskinesia always begins about 1730 in the week I have been monitoring. There may be small bursts of leg activity at about 0700 and 1200. At long last I have a crude objective tool to show the neuro experts; much easier to record and display. I know there are wrist mounted tremor devices; she has used such, I think twice, probably expensive and only on loan for brief periods. With the Alto I will be able to see the impact of a reduction in her 5.0 ml/hr daily flow rate which I assume will be approved of at her next clinic in a month's time. No more subjective waffle from my notes!! Below are two days' plots from last week.
She had her last Periactin appetite booster this morning at breakfast.Meal times are becoming an annoyance to me; after I place food on her small table, asking her to come and eat she says "I will" or "I'm coming" without doing so, instead continuing whatever activity she is involved with. The more I ask her to come the longer she seems to delay until the food is cold. I resolved this morning to not to become irritated, just to leave the meals be. Strangely, as I roam the supermarket looking for foodstuffs (prepared items usually) which may interest her taste and be edible by her, I feel emotional and protective, tending to buy too much, forgetting what is already in the 'fridge. Are these a hunter-gatherer behaviours in gathering food and reaction to it being ignored by those back in the "cave"? She persists in "cleaning" or re-arranging cupboards and drawer contents.
Neuro H. at the last clinic said a report was to be sent to our GP concerning comments I made re bowel motions etc. A few days ago a phone call from the GP's surgery arranged an appointment for later this week.
Yesterday our son and partial family visited (her birthday in a week's time) so we had a meal at the Club. Disappointed with the food and the ordering we have decided to apply for membership at the other club in town. She has been suggesting doing this for some time.
As I was extracting her from the car on the slider board onto the wheelchair, an old bloke at least as old as I am called out across the car park "Do you need some help mate?" I am finding these offers of help most annoying; one day I'll be rude. When I am unable to move her in and out of the car on my own then I'll stop doing so and rely on wheel chair friendly cabs and cab vouchers.
All last week hay fever caused mt to sneeze so much that my ribs hurt just for a slight cough. Another grey windy day today has started me sneezing again, damn it!
Some months ago I raised a matter about visibility of contingency funds showing on the monthly statements from Wild Dog care. These funds are government paid as part of her Level 4 support. Their accounting pen pushers or keyboard pounders were working on it. After several months without any changes in the statements I raised the issue with the appropriate complaints commissioner from whom a recent phone call said the matter will be fixed. We will see.
Once again this year I was invited to set up a budget with a government agency to assist with caring needs, such as respite. So I've asked Wild Dog to cost In Home care I have a break for a few days. The costs will include an over night carer plus a nurse 3 times each day (at 0600, 0830 and 2200) to change Duodopa pump settings and cassettes. This will be costly and probably not affordable. I am attempting to have her become proficient with these changes herself by practicing with the spare pump. Unfortunately, at 0600 or thereabouts, she is not very mobile or awake to change the pump from its night time to day rate so could easily overdose or under dose.
Her daily behaviour includes a burst of dyskinesia beginning at approximately 1730 continuing to 2000, sometimes to 2200. Sometimes there is a burst around lunch time. How can I tell? Recently I read about an exercise toy, the FitBit Alto. Down I went to our local Hardly Normal store to ask whether the Alto could be mounted around an ankle of a PD sufferer rather than a wrist and whether data export was possible. A cautious response was forthcoming and I was recommended to contact FitBit Support. I did so. Miraculously within a few hours there was a response pointing out that the device was not a medical tool, must not be used for diagnosis, was inaccurate; ignoring my query about data export. Somewhat irate I responded that I was not diagnosing anything but only wished to monitor leg dyskinesias etc etc and was it possible to export the data. Again, another quick response directing me to a page on their site describing data export, which, had I looked a little harder I may have found myself. So on Saturday of the previous weekend down to Hardly Normal's again to buy a FitBit Alto with a large wrist strap, charging the device overnight and fitting it on Sunday. The only difficulty experienced is closing the studs on the band, virtually impossible, so I use a small piece of duct tape to hold the Alto to hold the band closed before covering it with the top of a sock (she always wears socks). It works!! I am not impressed with seeing the data in spreadsheet form; it is not as meaningful as Snagging the graphical display which is shown in bar chart format; bars coloured yellow, orange and green representing an increasing number of steps. I don't believe the colours can be seen as representing intensity of movement, a shame perhaps but the graph gets the message across. Although the time scale is course at about 2 hours/cm, in her case he afternoon dyskinesia always begins about 1730 in the week I have been monitoring. There may be small bursts of leg activity at about 0700 and 1200. At long last I have a crude objective tool to show the neuro experts; much easier to record and display. I know there are wrist mounted tremor devices; she has used such, I think twice, probably expensive and only on loan for brief periods. With the Alto I will be able to see the impact of a reduction in her 5.0 ml/hr daily flow rate which I assume will be approved of at her next clinic in a month's time. No more subjective waffle from my notes!! Below are two days' plots from last week.
She had her last Periactin appetite booster this morning at breakfast.Meal times are becoming an annoyance to me; after I place food on her small table, asking her to come and eat she says "I will" or "I'm coming" without doing so, instead continuing whatever activity she is involved with. The more I ask her to come the longer she seems to delay until the food is cold. I resolved this morning to not to become irritated, just to leave the meals be. Strangely, as I roam the supermarket looking for foodstuffs (prepared items usually) which may interest her taste and be edible by her, I feel emotional and protective, tending to buy too much, forgetting what is already in the 'fridge. Are these a hunter-gatherer behaviours in gathering food and reaction to it being ignored by those back in the "cave"? She persists in "cleaning" or re-arranging cupboards and drawer contents.
Neuro H. at the last clinic said a report was to be sent to our GP concerning comments I made re bowel motions etc. A few days ago a phone call from the GP's surgery arranged an appointment for later this week.
Yesterday our son and partial family visited (her birthday in a week's time) so we had a meal at the Club. Disappointed with the food and the ordering we have decided to apply for membership at the other club in town. She has been suggesting doing this for some time.
As I was extracting her from the car on the slider board onto the wheelchair, an old bloke at least as old as I am called out across the car park "Do you need some help mate?" I am finding these offers of help most annoying; one day I'll be rude. When I am unable to move her in and out of the car on my own then I'll stop doing so and rely on wheel chair friendly cabs and cab vouchers.
All last week hay fever caused mt to sneeze so much that my ribs hurt just for a slight cough. Another grey windy day today has started me sneezing again, damn it!
Some months ago I raised a matter about visibility of contingency funds showing on the monthly statements from Wild Dog care. These funds are government paid as part of her Level 4 support. Their accounting pen pushers or keyboard pounders were working on it. After several months without any changes in the statements I raised the issue with the appropriate complaints commissioner from whom a recent phone call said the matter will be fixed. We will see.
Once again this year I was invited to set up a budget with a government agency to assist with caring needs, such as respite. So I've asked Wild Dog to cost In Home care I have a break for a few days. The costs will include an over night carer plus a nurse 3 times each day (at 0600, 0830 and 2200) to change Duodopa pump settings and cassettes. This will be costly and probably not affordable. I am attempting to have her become proficient with these changes herself by practicing with the spare pump. Unfortunately, at 0600 or thereabouts, she is not very mobile or awake to change the pump from its night time to day rate so could easily overdose or under dose.
posted by Kilpike | 12:03 pm
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