Chapter 388 - Improvements Here and Decline There
Some time since I last posted; I no longer feel motivated; I make too big a chore of this.
Looking back through my current notebook to refresh my memory I see that on 18th June she called me on the CB for help. She had stood out of the wheel chair without applying the brakes so as she sat down again the wheel chair travelled backwards, she sat heavily on the floor fortunately without harm as she did years ago to her coccyx by the same problem off a special stool.
The first delivery of Duodopa took 2 days; the 2nd delivery took 7 days. Fortunately there was some left over from her discharge from West Beer and that had not yet reached its Use By Date. Duodopa must be stored between 2 - 8 degrees C, out of the light, remnants in a cassette must not be used later, and each shipment has a Use By Date (about 6 weeks I think without checking). I must check with the chemist sometime this week to ensure there will not be delays with the next shipment.
She was having vigorous leg dyskinesias beginning mid afternoons so I asked permission of J, the West Beer CNC, for permission to decrease the Duodopa dose rate from 7.0 to 6.9 mL per hour. The leg shaking has decreased a lot but I have not decreased it further because we have been slowly decreasing the quantity of Deralin from 3 x 40mg per day down to 2 x 20mg per day, monitoring blood pressure as we go.
On 21st June we returned to see Dr M,, neurosurgeon, at Hot Air City, this time with MRI scans of her lumbar region. Remember, Dr F, neurologist, up at West Beer had retained them so Dr M had not seen them on our first visit to him. This time Dr M. was busy with another patient (I suppose that's to be expected in a public hospital) so we spoke to Dr M. When he saw the lumbar scans he declared this to be really major surgery. He was puzzled that she did not have intense lower back pain along with her bad left leg and worsening right leg. He took the scans away to intrude on DR M., then came back to say that Dr. M. decided that in the circumstances (I take that to mean "for your age, duration of PD and general physical condition") he would fuse her spine only at the position that caused her leg problems. Dr M. ran through all the dangers and complications of the surgery, we decided her quality of life in possibly being able to walk again was worth the risk. We then completed a wad of paper work for the surgery to occur within the next 3 months. Some days later more paper work arrived in the mail about her medical history and recent medications which I sent back as an email attachment. Too speedy a turn around processing paperwork for the following day I had to send an amendment to her current medications.
In parallel to the surgery consultation above, she became due for her regular eye checks. Finding that her eye pressures were 30 rather than 20 (I don't know the units) she was sent to an eye specialist at Highlands Town where a diagnosis of glaucoma was confirmed. She now has a drop of Xalatan in each eye on going to bed. And that needs to be stored in the car fridge along with the Duodopa
Our daily routine goes something like this. Between 6 & 7AM I wake to take a cassette of Duodopa from the car fridge to warm it slightly in my PJs pocket. About 7AM I connect cassette and pump together, place them into their carry bag, then attach the hose to her stoma connection, trying not to wake her, start the pump and initiate the "morning dose" which primes the hose with duodopa, then start a "morning dose" to start her day on a high note. Leaving her asleep (hopefully) I tip toe away to shower. After I am dressed I wake her and ease her onto the commode, wheel her into the bathroom where I detach her incontinence bloomers while seated on the commode with the pan beneath. Usually she voids into the pan of the commode rather than tolerate transfers to and from the toilet seat. She has to raise herself slightly by pushing on the commode arms for me to be able withdraw the bloomers rearwards, Strangely, the feel of a weighty pad of urine brings back boyhood memories of skinning rabbit, about the same weight and shape, as I drop it in our bathroom rubbish bin. Back to the bedroom where she lays on the bed (on an incontinence pad in case of accidents) which I raise before cleaning and alcohol swabbing the stoma, any "gunk" wiped away with cotton buds. I intend to see the local GP's clinic nurse about the condition of the stoma and how long before any gunkiness disappears. The experts tend to advise about major issues of attending to the operation of the pump etc. but seem to forget one's background is not in managing the self repair of bodies. Previous pieces of sticky tape are removed and new tape is applied to keep the triangular guard on the stoma in place. Then back onto the commode to await the arrival of the help for her shower and activates a bolus dose to provide extra Duodopa after the pump is stopped and removed while in the shower. After showing with assistance, and seated on the commode, she is returned to the bedroom to dress (including daytime incontinence pants) and have the pump reattached. Then she is wheeled out to breakfast in the wheel chair. Sometime between 3 and 5PM the Duodopa cassette is replaced with a full one and the depleted one is placed in a box to take to the chemist for disposal.
About 9PM we think of heading to bed. I wheel chair her into the bathroom and onto the loo to whatever she needs to do. I take the wheel chair away replacing it with the commode, on which I have draped her night time bloomers, the type that lay out flat with sticky tabs to join the flaps together into a pants shape. She sits on the spread out material on the commode seat then I join the flaps loosely around her before taking her back to the bed where she lies flat on her back and I tug the flaps together and the sand-paper like tabs hold the whole together. Sticky tape is added over the areas where the tabs are to prevent the rough surfaces working slightly loose to abrade her skin, a sure fire way to wake her up in the middle of the night and usually means leaks and extra washing of her satin draw sheet and the water proof sheet beneath. I then clean the stoma area again. I have taken to sticking a piece of light gauze over the stoma to prevent the lower edge of her bra irritating it and I do the same at night just for general protection. I have no idea whether professionals will approve.
Some time ago we bought two pairs of Hush Puppy slip-ons to ease and protect her toes and feet. She cannot tolerate any object bumping her toes. During the last week or so her dyskinesias often cause the shoes to fall off, especially the left one, causing some consternation when wheel chairing around a shopping centre. We returned to the store on Friday and found a pair of comfortable slip-ons with a strap across the arch of her foot, attached at one end with velcro. Perfect solution, so far, for the problem.
Recently she has developed habits that I find too obsessive and compulsive for my comfort. I am concerned. So last week while she was at respite I saw our GP with a typed list of the activities which bother me. He suggested most may be side effects of her medication (although Duodopa is effectively Sinemet in fluid form) and we should wait and see once she has stabilised and undergone the spinal job. The following is what I listed:
Looking back through my current notebook to refresh my memory I see that on 18th June she called me on the CB for help. She had stood out of the wheel chair without applying the brakes so as she sat down again the wheel chair travelled backwards, she sat heavily on the floor fortunately without harm as she did years ago to her coccyx by the same problem off a special stool.
The first delivery of Duodopa took 2 days; the 2nd delivery took 7 days. Fortunately there was some left over from her discharge from West Beer and that had not yet reached its Use By Date. Duodopa must be stored between 2 - 8 degrees C, out of the light, remnants in a cassette must not be used later, and each shipment has a Use By Date (about 6 weeks I think without checking). I must check with the chemist sometime this week to ensure there will not be delays with the next shipment.
She was having vigorous leg dyskinesias beginning mid afternoons so I asked permission of J, the West Beer CNC, for permission to decrease the Duodopa dose rate from 7.0 to 6.9 mL per hour. The leg shaking has decreased a lot but I have not decreased it further because we have been slowly decreasing the quantity of Deralin from 3 x 40mg per day down to 2 x 20mg per day, monitoring blood pressure as we go.
On 21st June we returned to see Dr M,, neurosurgeon, at Hot Air City, this time with MRI scans of her lumbar region. Remember, Dr F, neurologist, up at West Beer had retained them so Dr M had not seen them on our first visit to him. This time Dr M. was busy with another patient (I suppose that's to be expected in a public hospital) so we spoke to Dr M. When he saw the lumbar scans he declared this to be really major surgery. He was puzzled that she did not have intense lower back pain along with her bad left leg and worsening right leg. He took the scans away to intrude on DR M., then came back to say that Dr. M. decided that in the circumstances (I take that to mean "for your age, duration of PD and general physical condition") he would fuse her spine only at the position that caused her leg problems. Dr M. ran through all the dangers and complications of the surgery, we decided her quality of life in possibly being able to walk again was worth the risk. We then completed a wad of paper work for the surgery to occur within the next 3 months. Some days later more paper work arrived in the mail about her medical history and recent medications which I sent back as an email attachment. Too speedy a turn around processing paperwork for the following day I had to send an amendment to her current medications.
In parallel to the surgery consultation above, she became due for her regular eye checks. Finding that her eye pressures were 30 rather than 20 (I don't know the units) she was sent to an eye specialist at Highlands Town where a diagnosis of glaucoma was confirmed. She now has a drop of Xalatan in each eye on going to bed. And that needs to be stored in the car fridge along with the Duodopa
Our daily routine goes something like this. Between 6 & 7AM I wake to take a cassette of Duodopa from the car fridge to warm it slightly in my PJs pocket. About 7AM I connect cassette and pump together, place them into their carry bag, then attach the hose to her stoma connection, trying not to wake her, start the pump and initiate the "morning dose" which primes the hose with duodopa, then start a "morning dose" to start her day on a high note. Leaving her asleep (hopefully) I tip toe away to shower. After I am dressed I wake her and ease her onto the commode, wheel her into the bathroom where I detach her incontinence bloomers while seated on the commode with the pan beneath. Usually she voids into the pan of the commode rather than tolerate transfers to and from the toilet seat. She has to raise herself slightly by pushing on the commode arms for me to be able withdraw the bloomers rearwards, Strangely, the feel of a weighty pad of urine brings back boyhood memories of skinning rabbit, about the same weight and shape, as I drop it in our bathroom rubbish bin. Back to the bedroom where she lays on the bed (on an incontinence pad in case of accidents) which I raise before cleaning and alcohol swabbing the stoma, any "gunk" wiped away with cotton buds. I intend to see the local GP's clinic nurse about the condition of the stoma and how long before any gunkiness disappears. The experts tend to advise about major issues of attending to the operation of the pump etc. but seem to forget one's background is not in managing the self repair of bodies. Previous pieces of sticky tape are removed and new tape is applied to keep the triangular guard on the stoma in place. Then back onto the commode to await the arrival of the help for her shower and activates a bolus dose to provide extra Duodopa after the pump is stopped and removed while in the shower. After showing with assistance, and seated on the commode, she is returned to the bedroom to dress (including daytime incontinence pants) and have the pump reattached. Then she is wheeled out to breakfast in the wheel chair. Sometime between 3 and 5PM the Duodopa cassette is replaced with a full one and the depleted one is placed in a box to take to the chemist for disposal.
About 9PM we think of heading to bed. I wheel chair her into the bathroom and onto the loo to whatever she needs to do. I take the wheel chair away replacing it with the commode, on which I have draped her night time bloomers, the type that lay out flat with sticky tabs to join the flaps together into a pants shape. She sits on the spread out material on the commode seat then I join the flaps loosely around her before taking her back to the bed where she lies flat on her back and I tug the flaps together and the sand-paper like tabs hold the whole together. Sticky tape is added over the areas where the tabs are to prevent the rough surfaces working slightly loose to abrade her skin, a sure fire way to wake her up in the middle of the night and usually means leaks and extra washing of her satin draw sheet and the water proof sheet beneath. I then clean the stoma area again. I have taken to sticking a piece of light gauze over the stoma to prevent the lower edge of her bra irritating it and I do the same at night just for general protection. I have no idea whether professionals will approve.
Some time ago we bought two pairs of Hush Puppy slip-ons to ease and protect her toes and feet. She cannot tolerate any object bumping her toes. During the last week or so her dyskinesias often cause the shoes to fall off, especially the left one, causing some consternation when wheel chairing around a shopping centre. We returned to the store on Friday and found a pair of comfortable slip-ons with a strap across the arch of her foot, attached at one end with velcro. Perfect solution, so far, for the problem.
Recently she has developed habits that I find too obsessive and compulsive for my comfort. I am concerned. So last week while she was at respite I saw our GP with a typed list of the activities which bother me. He suggested most may be side effects of her medication (although Duodopa is effectively Sinemet in fluid form) and we should wait and see once she has stabilised and undergone the spinal job. The following is what I listed:
1. On the day after
seeing Dr L (Dr Ms' assistant), asked a question about the operation
on her leg, rather than speaking about her spine.
2. Two months after
being fitted with a DuoDopa pump, she still queries which buttons to
press to start & stop the pump.
3. Took a whole
morning to count coins (range of silver plus $1 and $2) totalling
about $140.00. Commented that she had difficulty totalling a small
group of 50 cent pieces with $1 and $2 coins, the total being about
$10.50.
4. Begins sewing
projects without completing them. Often unpicks stitching and starts
again. She says she is able to visualise what she wishes to
accomplish but is unable to carry out the concept.
5. Repetitiously
pins and unpins pieces of fabric during a sewing project. Unpicks
sewn together fabric pieces.
6. Has attempted to
stitch together many small pieces of fabric when only one larger
piece is required.
7. Re-arranges the
contents of the fridge and cupboards.
8. Difficult to
motivate to begin a new task, e.g., personal preparations before
leaving the house.
9. Tends to
frequently “hum” to herself.
Yesterday she had me return a small square table from her sewing room back to its intended position in our back room. This morning she has been arranging books on shelving in a cupboard in her sewing room, then wanted me to place some of her unwanted books on my overflowing crude home made bookshelves out here near my dungeon, then wants me to move some of my books positioned neatly next to the TV set to another place before she repositions some of the DVDs in a rack which the contents of has been sorted by her several times in the few months. I have trouble finding oft used items in the fridge and food cupboards. Utensils in kitchen cupboards are forever being lost to me. Sigh.
posted by Kilpike | 12:01 pm
0 Comments:
Post a Comment
<< Home