Chapter 473 - Just a 24x7 Job
I took us both along to see our GP last week. She to have the "spot" on her right leg examined; me to report dull headaches above the eyes, sleeping poorly, sensation of "wobbling" when walking, light headedness and weight gain. She was told that the spot may be biopsied and was given a referral for a bone density scan; why the latter I don't know and didn't ask. I was given a script for an additional blood pressure med (Nordip as well as the Avapro already being taken), a blood test and told to return for an ear flushing (I asked for this since I am scheduled for another hearing checkup). The nurse who some days later did the ear job said that although my insulin and cholesterol figures were on the high side there were no critical results; and I haven't been summoned to revisit the GP yet. The appointment for her bone density scan was on Wednesday just gone, one of my 5 hour respite days, so I returned from a coffee, foccacia and a book read in time to take her for the noon appointment; I was the transfer power to assist her from the wheel chair to the scanner couch and off again. The remainder of my respite was used for super market shopping; the Wild Dog carer for the respite took a break while we were gone (management rules). Yes, I could have had Wild Dog transport her for the scan and return but that would have required one of their vehicles she is able to get into (or a wheel chair friendly cab) and two carers, so why didn't I think of that the other day? Anyway, a moment ago I interrupted this typing to ring Wild Dog to be told "Yes we can arrange that next time and yes, two carers will be required". Put this down to experience as part of a 26 year learning curve.
I'm sure I have mentioned that the Duodopa night rate was increased gradually from the last time we saw neuro Dr F. I sent the following to the appropriate nurse at West Beer :
"When we saw Dr F on 3/8/2017 he requested that the Night Rate be increased in 0.2 mL/hr fortnightly steps from 2.2 mL/hr to 3.4 mL/hr maximum. The first step to 2.4 mL/hr began the night of 4th August and the final step to 3.4 mL/hr began Sunday 15th October. On most days since 4th August a FitBit monitor has been attached to her right leg. The FitBit charts indicate that stronger leg movements tend to occur earlier in the day after each step change, but this is inconsistent from day to day. Following the commencement of each step [She] tended to experience an increase in discomfort/tingling/pain in both legs for perhaps a week or so after which she had learned to tolerate the new level of discomfort or perhaps the discomfort had eased. Since Sunday 15th October following the final step to 3.4 mL/hr she complains of increased leg stiffness, the right leg feels funny/tingling below the knee, the left leg gives her "gyp"/annoying sensations from about mid-morning and the left foot tends to turn more. In the past her activities were restricted from about 2PM; now that begins at about 11AM. She needs to keep her legs raised to gain a degree of comfort from mid morning.
Dr F said "reduce Morning Dose if dyskinesias start to get worse before lunch". Since I don't have access to do that can you please look into the matter and advise.
[Her] next PD Clinic is on 22nd November. "
There was no acknowledgement to the above email, so I wrote a letter with FitBit charts to Dr F
############################################################################
################################################################################
Note that in the later FitBit graphs I substituted 3 only 2mL Bolus doses as my only way of reducing the Morning Dose (MD) which has been programmed at 8.0 mL and which I have not been told the security code to modify that pump setting. So substituting 6 mL of Bolus doses seems a reasonable step to take.
She has begun another project to make a container bag for her Duodopa pump. The first attempt was too small because only the width of the pump was taken into account, not its thickness. This morning as she worked on a larger version of the bag she raided the fridge for a slice of Xmas cake (of the slices I bought for her at Coles) and I found her re-arranging the contents of the fridge. After some mild words I positioned some fridge items to keep her happy and she returned to the bag under construction.
In recent weeks we have bought her new tops and trousers at KMart and Rockmans. Almost always she finds problems such as elastic, ribbon ties. size and brand labels and unwanted decorative buttons. These items are usually snipped off before double checking that the sizes fit. Hanging threads on the insides at seams are also cut off. Older pairs of trousers have had their elastic cuffs cut off. Some of these modification projects have been completed, many haven't. Remains an incomplete project.
Similarly with the shoes we have been buying for her at KMart; soft, light, flat heeled with velcro or elastic straps. Perhaps thet are cheaply constructed; she finds loose threads on the edges of the velcro or elastic straps which are picked or cut off until the straps are completely removed to be replaced by elastic strapping and buttons; also the edges of the shoe uppers are trimmed with satin ribbon. I'm unsure whether any of these reconstructions have yet been completed. Remains an incomplete project.
Months ago two very cheap rag dolls were bought at KMart; she intended to dress them. A week or so ago she used the sleeves cut off a long sleeved nighty (too hot) as a dress for each doll. Remains an incomplete project.
Fibres and threads from these projects usually end up on the floor, usually not vacuumed up with the new hand held VAX machine bought for such matters. Consequently threads stick to wheels on the wheel chair etc which she every so often cleans off.
Last weekend we bought a small 12 drawer roll-about to store needles, pins and other small sewing items, rather that the many small plastic boxes in which such are now kept and which need searching for in cluttered cupboards. Yesterday she began storing chocolates in those drawers.
We had regulated her bowel motions but late yesterday after we returned from an appointment with the eye specialist she sat on the loo for 90 minutes before agreeing to get off. The 4 hours round trip to the appointment without needing the loo at all may have disturbed matters. Her eye pressures were, I think, 14 and 16. Her eye lubrication was changed from Liquigel to Celluvisc to deal with eye focusing and light sensitivity problems due to dry eye issues caused by her PD.
Some years ago a previous GP diagnosed me as having experienced TIA's (Transient Ischemic Attack otherwise known as a "mini-stroke"). Scans confirmed this. Last week I was discussing something with one of the Wild Dog carers when I lost the thread of my ideas and then could not remember her name. During the last few days I have noticed that I am making a lot of typing errors, so I made an appointment to see our GP on Monday next. Perhaps the typos are simply tiredness.
Since I began the additional blood pressure med early morning and evening blood pressure readings on my Omron have been 120 +/- 5 and 130 +/- 5 rather than 150 and above.
Such is life.
I'm sure I have mentioned that the Duodopa night rate was increased gradually from the last time we saw neuro Dr F. I sent the following to the appropriate nurse at West Beer :
"When we saw Dr F on 3/8/2017 he requested that the Night Rate be increased in 0.2 mL/hr fortnightly steps from 2.2 mL/hr to 3.4 mL/hr maximum. The first step to 2.4 mL/hr began the night of 4th August and the final step to 3.4 mL/hr began Sunday 15th October. On most days since 4th August a FitBit monitor has been attached to her right leg. The FitBit charts indicate that stronger leg movements tend to occur earlier in the day after each step change, but this is inconsistent from day to day. Following the commencement of each step [She] tended to experience an increase in discomfort/tingling/pain in both legs for perhaps a week or so after which she had learned to tolerate the new level of discomfort or perhaps the discomfort had eased. Since Sunday 15th October following the final step to 3.4 mL/hr she complains of increased leg stiffness, the right leg feels funny/tingling below the knee, the left leg gives her "gyp"/annoying sensations from about mid-morning and the left foot tends to turn more. In the past her activities were restricted from about 2PM; now that begins at about 11AM. She needs to keep her legs raised to gain a degree of comfort from mid morning.
Dr F said "reduce Morning Dose if dyskinesias start to get worse before lunch". Since I don't have access to do that can you please look into the matter and advise.
[Her] next PD Clinic is on 22nd November. "
There was no acknowledgement to the above email, so I wrote a letter with FitBit charts to Dr F
############################################################################
Notes
about [Her] November 6th 2017
Observations of [Her]
. Sometimes feels
breathless
. The right leg
often has more dyskinesias than the left
. The toes of the
right foot often arch upwards and their tendons are very obviously
taught
. Unable to stand
without assistance
. Unable to walk
. Usually the right
leg has greater dyskinesias then the left
. A Sara Stedy
transporter is needed to transport her between
bed-toilet-commode-wheelchair- recliner and her body bounces up and
down violently while being assisted getting on and off
. Both feet and legs
are often hot or cold but not necessarily at the same time
. Most hours of day
and night needs a fan blowing on her
.Each morning she
uses a powered pedal machine for 5-20 minutes and has 3 light ¾ hour
exercise sessions each week
. The right leg has
a larger diameter than the left, at mid thigh right 41cm, left 38 cm
. Bowel motions have
been stabilised with 3 heaped teaspoons of BeneFiber in fruit juice
daily
. While seated on
the toilet or commode, bowel motions are usually not detected
. Mouth fills with
very thick saliva when some brands of tooth paste are used eg Biotene
. Unable to chew or
swallow hard particles of food; eg chopped nuts, tomato skin
. Frequently thinks
shapes such as leaves to be birds
. Eyes are very
sensitive to light, often wearing sunglasses inside the house
. Unable to remember
personal names.
. Often asks what
day it is
. Very difficult to
distract her from a task in hand, eg to begin eating a meal when
involved in an activity
. Easily distracts
herself from a task such as eating a meal to begin another activity
such as hand sewing
. Often in early
afternoon she quickly has a need to lay down on her bed.
. Frequently counts
objects, sorts the contents of cupboards, drawers and boxes
. Sometimes her eyes
“go in and out of focus”
. Unless she can see
her feet she does not know “where they are” or if they are on the
ground
. She senses that
glasses are still on her face, or shoes on her feet, after they are
removed
Thur 3 Aug 2017
Appointment with Dr
F in his rooms. Advised increasing overnight flow rate by 0.2mL/hr
every fortnight, to a maximum of 3.4 mL/hr. Current rates are 5.4 and
2.2 mL/hr; MD 8.0 mL.
A FitBit Alta is
attached to [Her] right leg (which is seen to “shake” more than
the left) most days and nights when convenient and removed when
showering but there were problems resolving synchronising issues
until mid August. Below is a collection of FitBit recordings taken
between August and November 2017.
Note that the Y axis
changes its scale to cope with a large number of “steps”. FitBit
describes the step bar colours as: Yellow – light, Brown –
moderate, Green – intense.
Frid 4 Aug 2017
Increased overnight
flow rate to 2.4 mL/hr
Sat 19 Aug 2017
Increased overnight
flow rate to 2.6 mL/hr
Sun 3 Sep 2017
Increased overnight
flow rate to 2.8 mL/hr
Sun 17 Sep 2017
Increased overnight
flow rate to 3.0 mL/hr
Sun 1 Oct 2017
Increased overnight
flow rate to 3.2 mL/hr
FitBit problems
between 25th Sep and 12th Oct prevented
recording “steps”.
Sun 15 Oct 2017
Increased overnight
flow rate to 3.4 mL/hr
PLEASE NOTE THAT, BY
MISTAKE, THE CASSETTE WAS NOT REPLACED DURING THE EVENING OF 28TH
OCTOBER
ALSO NOTE [HER] COMMENT!!
Thur 2 Nov 2017
Trialled reducing
Morning Dose from 8.0 to 6.0 mL by substituting 3 only Bolus doses.
Note that in the later FitBit graphs I substituted 3 only 2mL Bolus doses as my only way of reducing the Morning Dose (MD) which has been programmed at 8.0 mL and which I have not been told the security code to modify that pump setting. So substituting 6 mL of Bolus doses seems a reasonable step to take.
She has begun another project to make a container bag for her Duodopa pump. The first attempt was too small because only the width of the pump was taken into account, not its thickness. This morning as she worked on a larger version of the bag she raided the fridge for a slice of Xmas cake (of the slices I bought for her at Coles) and I found her re-arranging the contents of the fridge. After some mild words I positioned some fridge items to keep her happy and she returned to the bag under construction.
In recent weeks we have bought her new tops and trousers at KMart and Rockmans. Almost always she finds problems such as elastic, ribbon ties. size and brand labels and unwanted decorative buttons. These items are usually snipped off before double checking that the sizes fit. Hanging threads on the insides at seams are also cut off. Older pairs of trousers have had their elastic cuffs cut off. Some of these modification projects have been completed, many haven't. Remains an incomplete project.
Similarly with the shoes we have been buying for her at KMart; soft, light, flat heeled with velcro or elastic straps. Perhaps thet are cheaply constructed; she finds loose threads on the edges of the velcro or elastic straps which are picked or cut off until the straps are completely removed to be replaced by elastic strapping and buttons; also the edges of the shoe uppers are trimmed with satin ribbon. I'm unsure whether any of these reconstructions have yet been completed. Remains an incomplete project.
Months ago two very cheap rag dolls were bought at KMart; she intended to dress them. A week or so ago she used the sleeves cut off a long sleeved nighty (too hot) as a dress for each doll. Remains an incomplete project.
Fibres and threads from these projects usually end up on the floor, usually not vacuumed up with the new hand held VAX machine bought for such matters. Consequently threads stick to wheels on the wheel chair etc which she every so often cleans off.
Last weekend we bought a small 12 drawer roll-about to store needles, pins and other small sewing items, rather that the many small plastic boxes in which such are now kept and which need searching for in cluttered cupboards. Yesterday she began storing chocolates in those drawers.
We had regulated her bowel motions but late yesterday after we returned from an appointment with the eye specialist she sat on the loo for 90 minutes before agreeing to get off. The 4 hours round trip to the appointment without needing the loo at all may have disturbed matters. Her eye pressures were, I think, 14 and 16. Her eye lubrication was changed from Liquigel to Celluvisc to deal with eye focusing and light sensitivity problems due to dry eye issues caused by her PD.
Some years ago a previous GP diagnosed me as having experienced TIA's (Transient Ischemic Attack otherwise known as a "mini-stroke"). Scans confirmed this. Last week I was discussing something with one of the Wild Dog carers when I lost the thread of my ideas and then could not remember her name. During the last few days I have noticed that I am making a lot of typing errors, so I made an appointment to see our GP on Monday next. Perhaps the typos are simply tiredness.
Since I began the additional blood pressure med early morning and evening blood pressure readings on my Omron have been 120 +/- 5 and 130 +/- 5 rather than 150 and above.
Such is life.
posted by Kilpike | 1:25 pm
0 Comments:
Post a Comment
<< Home