Chapter 261 - Changes Going Downhill
On Thursday 23rd in Hot Air City she saw the neuro again. He queried why she had not had a thoracic (lower back) scan that he prescribed a year ago. We had forgotten all about it. A year ago is yesterday yet we had little memory of it. Back home we realised our GP had said not to do it because she had not long had a back scan - I don't remember that either. Anyway, she described the impact of slowly reducing Deralin dosage to nil, the excessive tremor and that she had returned to 10mg yet was still with too much tremor, so he recommended raising it to 20mg. He gave her the usual wrist bending tests and after she said although there had been no more mini-blackouts (when she experienced momentary loss/fuzziness of vision, she feels that she is falling backward, so he gave her the usual "tug backwards at the shoulders" test & said she was normal. She had received a request by post from the hospital, following our abortive visit to see the PD nurse, for another referral so he said he will FAX another. He agreed that perhaps she should additional Sifrol and replace the Stalevo with Sinemet because she suspects that Stalevo may be causing loose bowels. Although later, after she explained the problem as something more that simple "urgency", I wondered about the quantity of Metamucil I put in her evening glass of fruit juice, so for some days now she has had none and matters are much better, but then it could be because she has now started with Sinemet again.
One morning recently I woke puzzled by a musical sound; about to doze off again and the sound occurred again; I began thinking evil thoughts about the T-hub tablet beside my bed, when I suddenly realised that the sound came from the door bell alarm I had fitted behind her toilet and on my bed-side table. I went to the bathroom to find her seated on the shower chair beside the toilet. "How long have you been here?", "About a quarter of an hour.", "How many times had you pressed the button?", "Four" she replied. So much for being a reliable alarm with which she can alert me. This must have been after 7am; she had gone to the loo, not been able to rise & walk even with the aid of the fireman's pole, yet had been able to swing herself somewhat sideways to sit more comfortably on the shower chair rather than the toilet seat. This type of problem is happening more frequently.
A day or so ago she CB'd me for help to get out of her usual chair in front of her TV, she needed the loo. I was able to help her mostly upright but noway was she able to move her feet, firmly placed on the floor, too close together. She begins to breath in puffs through her nose, she makes mewling noises in her throat, her body stiffens all over, she is terrified of falling. I suggested, hopefully, the wheelchair; normally she dislikes being moved in a wheelchair because she is afraid of falling out of it. I was able to wheel her into the bathroom and she even agreed to being wheeled out again. She now finds sitting in the wheel chair more comfortable in front of the TV, although with the footrests removed she finds her feet need support. At the moment she is using her square steel framed chair so maybe the wheelchair will return to her desk in her sewing room.
Are we becoming forgetful? We seem to be re-creating the wheel. For instance, after some months of aches & pains up & down both her legs, much applying of Ice Gel, I suddenly remembered we had bought a Circulation Booster a year or more ago for just that purpose. It had been put away once her legs were not such a bother at that time. We even briefly loaned it to people to try out. I am sure it was returned but we can't find the sodding thing, only it's empty box and remote control. Then in a moment of inspiration, I remembered the TENS machine; the same technology except the Booster is physically designed with foot pads. She found the TENS of some benefit, using it several times over the last few days.
Her wheelchair is collapsible (did we buy it for that aborted cruise holiday we didn't take nor ever will?) so the seat is of canvas. We had made a square foam cushion for more comfort while seated at her desk, but even then it sank in the middle when sat upon. So I cut a piece of chipboard (part of a desk she used when we lived in the Centre 12 years ago; never know when something will be useful) to go beneath the cushion; much more comfortable. A couple of afternoons ago we both heard a sound, like a rifle shot, which I thought may have been of electrical origin, although no circuit breakers had tripped, no brown smells. No bottles in cupboards had exploded, all equipment was working. We were sure the bang had originated in side the house. A few minutes earlier the Village handyman had replaced the batteries in both smoke alarms, most suspicious. Next morning I found one tire on the wheelchair was flat, so cursing a little I connected the compressor to the battery in our 4WD but found the tire would not inflate. On removing the inner tube I found a section of it shredded - the source of the ban the afternoon before! I must of over inflated it by using the compressor. So down the street for a new tube. Then down the street a second time because I had been given the wrong size even though I had shown the section of old tube displaying the size. The wheelchair is functional again.
She has a difficulty verbally describing her medication dosages to medical professionals (lay persons have absolutely no idea about the matter) so when The National Parkinson Foundation's Aware in Care campaign was introduced in the USA I downloaded the documentation from www.awareincare.org and use the Medication Form to list both her prescription and over-the-counter meds. So far medical professionals give it a cursory glance, preferring not to retain a copy, rather making there own scribbles or typing on keyboards (I have often seen this behaviour & wonder whether this provides them with some form of isolation in litigation matters?) Anyway I will persist since we have discovered that professionals have incorrectly recorded incorrect dosages or daily number of same, not that they can be blamed, since verbally attempting to convey the list of her daily intake can be very confusing. See her meds list below.
These days she may need some coercion to go shopping. In July the Federal Government introduced eHealth, a centralised system of collating personal medical records; a Big Brother system which has had a slow voluntary uptake so far. In our situation, at our time of life, I don't give a stuff about that and see the benefits to ourselves since in the near future we are sure to suffer invasive procedures and hospitalisation and any help to inform practitioners to make best decisions will be to our advantage. Astounded at the apparent complexity of the process, the amount of on-line bumf to be absorbed, I found the actual data entry reasonably simple, although the average computer illiterate person may find the process impossible. Since a long time ago I had set up on-line access to Medicare, my linking it to australia.gov.au was straight forward. Not so hers, because we had no idea what her password was, and we had changed ISP's long since then. So she had to visit Medicare in person to get another password. Later, at home, I was able to register her completely with eHealth. Anyway, she was not keen to visit Medicare but we went down the street mid-afternoon. Her password renewal was quickly over so I suggested we walk a little further up the street (she was supported by her walker) to buy her weekly puzzle magazines; then she was tempted to look in the junk shop a few doors further on. We finally visited 3 junk shops, buying knitting wool and fabrics; she was doing well, and when I suggested a coffee at the Club she was agreeable.
One afternoon we saw Meryl Streep in "Hope Springs" which was not as good a movie as she had thought. Very hard to find a non-violent, non-tension, non-violence movie for her.
A few days ago I pointed out to her that she hardly exercised anymore. She replied that most on most Mondays she attends a one hour physio group (Falls Prevention) at the hospital and on Tuesdays there is usually some Tai Chi at her Respite Centre (what I call her "sheltered workshop"). I encouraged her to do some stepping using the Wii Fit which we have not used for at least 6 months. After using the board alone she asked for the pedestal for it so that her steps were higher. She requires to hold her walking frame to maintain balance. I have noticed that her right foot is not lifted as high as her left, so she tends to stub the toes on her right foot when stepping onto and drags her right foot on stepping off the board. She is aware of this & attempts corrections when I mention her right foot.
This morning she has been stitching some commercial embroidery designs on her machine. In the periods between thread changes she is knitting scarves. She is sitting on a wooden kitchen chair. No need for the wheel chair today. She is able to stand and walk reasonably well. I have not been called on the CB.
Below is her medication form as mentioned above. She has been on this regime since last Thursday, two whole days away. Each evening she sorts the medications into old pill bottles appropriately labelled with times to be taken. She does not lack cognitive skills to perform the sorting!
Some excerpts from emails I sent to someone close during this week:
"It's a matter of her feet not parallel, pointing in different directions, too close together, unable to be moved to give her a more stable platform. Any slight movement of her upper body changing her centre of gravity cannot be corrected by moving her feet. She just can't move them. When she can get her feet to move she looks as if she is walking along a corridor in a fast moving train, or on a boat being rocked by wave motion, her hands reach out for hand-holds such as doorways, cupboards & the like. When her meds are working she is much better, yet hardly moves anywhere without pushing her walker in front of herself. When her feet are "stuck" and I try to move her to a seat or to grasp her walker, she begins to breath strongly through her nose, making mewing sounds, body becomes rigid, on the verge of panic."
"I was just called to help P to the loo, feet not moving, somewhat terrified. Then unable to get off the loo & take steps, so I had to bring the wheelchair into the bathroom then some stress having her turn to sit in it. Then out at the TV she was too scared to leave the wheelchair & sit on her normal chair, so she is remaining in the wheelchair for awhile. Perhaps this is the beginning of the next phase :-(( Her feet just remain on the floor, yet her legs tremor."
One morning recently I woke puzzled by a musical sound; about to doze off again and the sound occurred again; I began thinking evil thoughts about the T-hub tablet beside my bed, when I suddenly realised that the sound came from the door bell alarm I had fitted behind her toilet and on my bed-side table. I went to the bathroom to find her seated on the shower chair beside the toilet. "How long have you been here?", "About a quarter of an hour.", "How many times had you pressed the button?", "Four" she replied. So much for being a reliable alarm with which she can alert me. This must have been after 7am; she had gone to the loo, not been able to rise & walk even with the aid of the fireman's pole, yet had been able to swing herself somewhat sideways to sit more comfortably on the shower chair rather than the toilet seat. This type of problem is happening more frequently.
A day or so ago she CB'd me for help to get out of her usual chair in front of her TV, she needed the loo. I was able to help her mostly upright but noway was she able to move her feet, firmly placed on the floor, too close together. She begins to breath in puffs through her nose, she makes mewling noises in her throat, her body stiffens all over, she is terrified of falling. I suggested, hopefully, the wheelchair; normally she dislikes being moved in a wheelchair because she is afraid of falling out of it. I was able to wheel her into the bathroom and she even agreed to being wheeled out again. She now finds sitting in the wheel chair more comfortable in front of the TV, although with the footrests removed she finds her feet need support. At the moment she is using her square steel framed chair so maybe the wheelchair will return to her desk in her sewing room.
Are we becoming forgetful? We seem to be re-creating the wheel. For instance, after some months of aches & pains up & down both her legs, much applying of Ice Gel, I suddenly remembered we had bought a Circulation Booster a year or more ago for just that purpose. It had been put away once her legs were not such a bother at that time. We even briefly loaned it to people to try out. I am sure it was returned but we can't find the sodding thing, only it's empty box and remote control. Then in a moment of inspiration, I remembered the TENS machine; the same technology except the Booster is physically designed with foot pads. She found the TENS of some benefit, using it several times over the last few days.
Her wheelchair is collapsible (did we buy it for that aborted cruise holiday we didn't take nor ever will?) so the seat is of canvas. We had made a square foam cushion for more comfort while seated at her desk, but even then it sank in the middle when sat upon. So I cut a piece of chipboard (part of a desk she used when we lived in the Centre 12 years ago; never know when something will be useful) to go beneath the cushion; much more comfortable. A couple of afternoons ago we both heard a sound, like a rifle shot, which I thought may have been of electrical origin, although no circuit breakers had tripped, no brown smells. No bottles in cupboards had exploded, all equipment was working. We were sure the bang had originated in side the house. A few minutes earlier the Village handyman had replaced the batteries in both smoke alarms, most suspicious. Next morning I found one tire on the wheelchair was flat, so cursing a little I connected the compressor to the battery in our 4WD but found the tire would not inflate. On removing the inner tube I found a section of it shredded - the source of the ban the afternoon before! I must of over inflated it by using the compressor. So down the street for a new tube. Then down the street a second time because I had been given the wrong size even though I had shown the section of old tube displaying the size. The wheelchair is functional again.
She has a difficulty verbally describing her medication dosages to medical professionals (lay persons have absolutely no idea about the matter) so when The National Parkinson Foundation's Aware in Care campaign was introduced in the USA I downloaded the documentation from www.awareincare.org and use the Medication Form to list both her prescription and over-the-counter meds. So far medical professionals give it a cursory glance, preferring not to retain a copy, rather making there own scribbles or typing on keyboards (I have often seen this behaviour & wonder whether this provides them with some form of isolation in litigation matters?) Anyway I will persist since we have discovered that professionals have incorrectly recorded incorrect dosages or daily number of same, not that they can be blamed, since verbally attempting to convey the list of her daily intake can be very confusing. See her meds list below.
These days she may need some coercion to go shopping. In July the Federal Government introduced eHealth, a centralised system of collating personal medical records; a Big Brother system which has had a slow voluntary uptake so far. In our situation, at our time of life, I don't give a stuff about that and see the benefits to ourselves since in the near future we are sure to suffer invasive procedures and hospitalisation and any help to inform practitioners to make best decisions will be to our advantage. Astounded at the apparent complexity of the process, the amount of on-line bumf to be absorbed, I found the actual data entry reasonably simple, although the average computer illiterate person may find the process impossible. Since a long time ago I had set up on-line access to Medicare, my linking it to australia.gov.au was straight forward. Not so hers, because we had no idea what her password was, and we had changed ISP's long since then. So she had to visit Medicare in person to get another password. Later, at home, I was able to register her completely with eHealth. Anyway, she was not keen to visit Medicare but we went down the street mid-afternoon. Her password renewal was quickly over so I suggested we walk a little further up the street (she was supported by her walker) to buy her weekly puzzle magazines; then she was tempted to look in the junk shop a few doors further on. We finally visited 3 junk shops, buying knitting wool and fabrics; she was doing well, and when I suggested a coffee at the Club she was agreeable.
One afternoon we saw Meryl Streep in "Hope Springs" which was not as good a movie as she had thought. Very hard to find a non-violent, non-tension, non-violence movie for her.
A few days ago I pointed out to her that she hardly exercised anymore. She replied that most on most Mondays she attends a one hour physio group (Falls Prevention) at the hospital and on Tuesdays there is usually some Tai Chi at her Respite Centre (what I call her "sheltered workshop"). I encouraged her to do some stepping using the Wii Fit which we have not used for at least 6 months. After using the board alone she asked for the pedestal for it so that her steps were higher. She requires to hold her walking frame to maintain balance. I have noticed that her right foot is not lifted as high as her left, so she tends to stub the toes on her right foot when stepping onto and drags her right foot on stepping off the board. She is aware of this & attempts corrections when I mention her right foot.
This morning she has been stitching some commercial embroidery designs on her machine. In the periods between thread changes she is knitting scarves. She is sitting on a wooden kitchen chair. No need for the wheel chair today. She is able to stand and walk reasonably well. I have not been called on the CB.
Below is her medication form as mentioned above. She has been on this regime since last Thursday, two whole days away. Each evening she sorts the medications into old pill bottles appropriately labelled with times to be taken. She does not lack cognitive skills to perform the sorting!
Some excerpts from emails I sent to someone close during this week:
"It's a matter of her feet not parallel, pointing in different directions, too close together, unable to be moved to give her a more stable platform. Any slight movement of her upper body changing her centre of gravity cannot be corrected by moving her feet. She just can't move them. When she can get her feet to move she looks as if she is walking along a corridor in a fast moving train, or on a boat being rocked by wave motion, her hands reach out for hand-holds such as doorways, cupboards & the like. When her meds are working she is much better, yet hardly moves anywhere without pushing her walker in front of herself. When her feet are "stuck" and I try to move her to a seat or to grasp her walker, she begins to breath strongly through her nose, making mewing sounds, body becomes rigid, on the verge of panic."
"I was just called to help P to the loo, feet not moving, somewhat terrified. Then unable to get off the loo & take steps, so I had to bring the wheelchair into the bathroom then some stress having her turn to sit in it. Then out at the TV she was too scared to leave the wheelchair & sit on her normal chair, so she is remaining in the wheelchair for awhile. Perhaps this is the beginning of the next phase :-(( Her feet just remain on the floor, yet her legs tremor."
posted by Kilpike | 12:55 pm
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