Chapter 506 - The Gradient is Downhill
For some time now I have noticed a burst of hits on this blog, maybe 70+ each time, and I puzzle who or why such happens, but I'm not tempted to allow comments to find out why anyone may wish to read this waffle. I'm approaching that moment when I will say enough is enough. And now it's time to buy a hard copy print of this year's posts, an attempt to make my ramblings permanent, for a short while at least, insurance against someone somewhere pulling a plug on a server.
In the last post I mentioned taking her to the version of Dance for PD held each second Thursday at Wild Dog. The nice lady who conducts the session is the same that has the Tuesday sessions at the church hall each Tuesday. After her first attendance at Wild Dog she had no wish to return; she found the participants "not quite with it", not alive, and many nursed cuddly toys. I gained the impression that she still had some way to travel before she was in the same state. The following Tuesday I mentioned this to the nice lady who said she expected the reaction and said there is a marked difference between the atmospheres of each venue.
She has returned to pinning a frill around the edge of the quilt that she dismembered ages ago; a work in progress. Another is pulling apart completed quilt blocks because she finds errors in her previous work; hacks away with scissors or stitch rippers, throwing the pieces of threads on the floor. Every so often the threads are vacuumed away by me, except for those that entangle in wheel chair axles or are walked into other parts of the house, usually left for the fortnightly cleaner. A few days ago she ripped apart one of those home crafted crocheted looped clothes hanger covers, exactly why she could not say and later I vacuumed the pile of chopped bits of thread on the carpet. Each shopping trip, usually on a Sunday, we spent, until recently, about $20 buying quilting and hand craft magazines which kept her entertained for hours (never made any of the projects, perhaps just dreamed) but her interest has waned so now we buy a puzzle book or a ladies magazine or two. Even so, she is far less interested in visiting the shops on Sundays and for several weeks we did not leave the house except for Dance for PD.
At night she lacks interest in watching TV channels or NetFlix, seemingly content to read Mills and Boon novels on her eBook reader mounted on the foldable arm above her bed, although how much she actually reads on any one evening is really very little. She has always enjoyed watching "Letters and Numbers" on the ABC and of late I noticed her interest in those hideous emotional over acted quiz shows with inordinate prize moneys on commercial TV.
Since ceasing the Symmetrel she usually experiences bad dyskinesias on waking and on going to bed, as if her system has a memory of the medication modifying her circumstances. Last night her legs were so dyskinetic and painful, even resting them on bean bags helped little, I gave her a Kalma pill at 1830 and had her in bed before the Wild Dog carer arrived to put her to bed 1900 by which time she was much relaxed so the carer chatted women's talk with her for 30 minutes. She sleeps restlessly, throwing bed clothes on the floor, two fans blowing on her because she feels so hot, so at 0600 when I begin changing the duodopa cassette and the dose rate she is uncomfortable, in pain and irritable. A few days ago one of the carers noticed specks of blood at the bottom end of her sheets and we found that the skin on the tip of one of her toes was worn away, whether due to the stiffness of the new sheets excessively rubbing on her toes during dyskinesia or due to new shoes or both.
Several weeks ago she tumbled forward out of her wheel chair as she leaned to pick up a pin off the floor (along with threads as mentioned above, she drops pins and needles all over the place) without applying the wheel chair brakes. She did not hurt herself, seemingly, and I foolishly dis the usual packing up with pillows to place her on the Sara Stedy then returned to the wheel chair. Days later a large bruise developed on her left hip and a small yellowish one at the hairline on the left side of her forehead. Prior to that incident and ever since I have suffered awful pains in my back and rib cage, pains that "grabbed" at the most inconvenient moments. The rib cage pains moved from place to place so I realised that my frequent sneezing in the warming changeable weather of late spring may have caused the problem, so every time I detect a sneeze coming I spray my nose with Nasonex, too often I suppose for the health of my nose. Anyway, my back pains have eased considerably.
Since she is needing more assistance on and off the loo, the wheel chairs and bed I researched the matter of a lifter/hoist. Also, in the back of my mind, a portable device we may be able to use should we dare to go away for a few days, staying in motels. After some searching I discovered a Molift Smart 150, a hoist that will fold up for transport or storage. Down at Hot Air City I saw the demo machine, and in its folded condition it will lay across our car when the rear seats are laid flat. After the drive she did not wish to leave the car or test the device. That is a matter I have yet to tackle. Anyway, a deposit has been paid and we may have it in time to trial it by attending her aunt's 94th birthday in 3 weeks time. I am unsure how we will cope using a lifter/hoist but the Sara Stedy is approaching its use-by-date in terms of convenience to us.
I may not have mentioned the various scans I had to diagnose why I have experienced three bouts of postural instability sine the beginning of the year. A CT scan of my head, an MRI of my brain, a CT scan of my carotid arteries revealed nothing of concern to the experts her examined the scans. The comments suggest crystal formation in the balance ducts in my ears. I found when I pressed around my left ear a slight sensation of tilting occurred and since I am due for a hearing test I had my ears flushed a few days ago. The nurse said she was unable at first to see my left ear drum; the hearing technician will be pleased for not wasting her time.
A drive up the highway in pouring rain to see her eye specialist on Wednesday last. Ganfort has been administered to her eyes again since 4th November without allergic reaction and her eye pressures are 15 and 13. Good news!!
Following are FitBit traces of her right leg since she began taking Symmetrel, discontinued when hallucinations became unbearable for both of us.
When all FitBit charts are observed there seems to be a trend towards less dyskinesia as Symmetrel doses were increased from 1 to 2 then 3 per day when hallucinations became intolerable and the Symmetrel was discontinued. I think there was less dyskinesia in the week or so after discontinuing Symmetrel but she has now developed a tendency toward excess dyskinesia on waking and of evenings prior to being put to bed. My appreciation of these problems is more intense in reality than by looking at these charts, although if I displayed 3 months of charts here the reader may appreciate what I'm speaking about.
The horizontal lines labelled 2.0, 5.0 etc are the duodopa flow rates suggested by the neuro.
In the last post I mentioned taking her to the version of Dance for PD held each second Thursday at Wild Dog. The nice lady who conducts the session is the same that has the Tuesday sessions at the church hall each Tuesday. After her first attendance at Wild Dog she had no wish to return; she found the participants "not quite with it", not alive, and many nursed cuddly toys. I gained the impression that she still had some way to travel before she was in the same state. The following Tuesday I mentioned this to the nice lady who said she expected the reaction and said there is a marked difference between the atmospheres of each venue.
She has returned to pinning a frill around the edge of the quilt that she dismembered ages ago; a work in progress. Another is pulling apart completed quilt blocks because she finds errors in her previous work; hacks away with scissors or stitch rippers, throwing the pieces of threads on the floor. Every so often the threads are vacuumed away by me, except for those that entangle in wheel chair axles or are walked into other parts of the house, usually left for the fortnightly cleaner. A few days ago she ripped apart one of those home crafted crocheted looped clothes hanger covers, exactly why she could not say and later I vacuumed the pile of chopped bits of thread on the carpet. Each shopping trip, usually on a Sunday, we spent, until recently, about $20 buying quilting and hand craft magazines which kept her entertained for hours (never made any of the projects, perhaps just dreamed) but her interest has waned so now we buy a puzzle book or a ladies magazine or two. Even so, she is far less interested in visiting the shops on Sundays and for several weeks we did not leave the house except for Dance for PD.
At night she lacks interest in watching TV channels or NetFlix, seemingly content to read Mills and Boon novels on her eBook reader mounted on the foldable arm above her bed, although how much she actually reads on any one evening is really very little. She has always enjoyed watching "Letters and Numbers" on the ABC and of late I noticed her interest in those hideous emotional over acted quiz shows with inordinate prize moneys on commercial TV.
Since ceasing the Symmetrel she usually experiences bad dyskinesias on waking and on going to bed, as if her system has a memory of the medication modifying her circumstances. Last night her legs were so dyskinetic and painful, even resting them on bean bags helped little, I gave her a Kalma pill at 1830 and had her in bed before the Wild Dog carer arrived to put her to bed 1900 by which time she was much relaxed so the carer chatted women's talk with her for 30 minutes. She sleeps restlessly, throwing bed clothes on the floor, two fans blowing on her because she feels so hot, so at 0600 when I begin changing the duodopa cassette and the dose rate she is uncomfortable, in pain and irritable. A few days ago one of the carers noticed specks of blood at the bottom end of her sheets and we found that the skin on the tip of one of her toes was worn away, whether due to the stiffness of the new sheets excessively rubbing on her toes during dyskinesia or due to new shoes or both.
Several weeks ago she tumbled forward out of her wheel chair as she leaned to pick up a pin off the floor (along with threads as mentioned above, she drops pins and needles all over the place) without applying the wheel chair brakes. She did not hurt herself, seemingly, and I foolishly dis the usual packing up with pillows to place her on the Sara Stedy then returned to the wheel chair. Days later a large bruise developed on her left hip and a small yellowish one at the hairline on the left side of her forehead. Prior to that incident and ever since I have suffered awful pains in my back and rib cage, pains that "grabbed" at the most inconvenient moments. The rib cage pains moved from place to place so I realised that my frequent sneezing in the warming changeable weather of late spring may have caused the problem, so every time I detect a sneeze coming I spray my nose with Nasonex, too often I suppose for the health of my nose. Anyway, my back pains have eased considerably.
Since she is needing more assistance on and off the loo, the wheel chairs and bed I researched the matter of a lifter/hoist. Also, in the back of my mind, a portable device we may be able to use should we dare to go away for a few days, staying in motels. After some searching I discovered a Molift Smart 150, a hoist that will fold up for transport or storage. Down at Hot Air City I saw the demo machine, and in its folded condition it will lay across our car when the rear seats are laid flat. After the drive she did not wish to leave the car or test the device. That is a matter I have yet to tackle. Anyway, a deposit has been paid and we may have it in time to trial it by attending her aunt's 94th birthday in 3 weeks time. I am unsure how we will cope using a lifter/hoist but the Sara Stedy is approaching its use-by-date in terms of convenience to us.
I may not have mentioned the various scans I had to diagnose why I have experienced three bouts of postural instability sine the beginning of the year. A CT scan of my head, an MRI of my brain, a CT scan of my carotid arteries revealed nothing of concern to the experts her examined the scans. The comments suggest crystal formation in the balance ducts in my ears. I found when I pressed around my left ear a slight sensation of tilting occurred and since I am due for a hearing test I had my ears flushed a few days ago. The nurse said she was unable at first to see my left ear drum; the hearing technician will be pleased for not wasting her time.
A drive up the highway in pouring rain to see her eye specialist on Wednesday last. Ganfort has been administered to her eyes again since 4th November without allergic reaction and her eye pressures are 15 and 13. Good news!!
Following are FitBit traces of her right leg since she began taking Symmetrel, discontinued when hallucinations became unbearable for both of us.
When all FitBit charts are observed there seems to be a trend towards less dyskinesia as Symmetrel doses were increased from 1 to 2 then 3 per day when hallucinations became intolerable and the Symmetrel was discontinued. I think there was less dyskinesia in the week or so after discontinuing Symmetrel but she has now developed a tendency toward excess dyskinesia on waking and of evenings prior to being put to bed. My appreciation of these problems is more intense in reality than by looking at these charts, although if I displayed 3 months of charts here the reader may appreciate what I'm speaking about.
The horizontal lines labelled 2.0, 5.0 etc are the duodopa flow rates suggested by the neuro.
Saturday 11th August prior to Symmetrel
Sunday 16th September, first dose of Symmetrel
Wednesday 17th October, Symmetrel 3 times each day
Thursday 18th October, Symmetrel 3 times each day
Friday 19th October
Saturday 20th October
Sunday 21st October
Sunday 28th October
Tuesday 30th October
Thursday 1st November
Friday 30th November, no Symmetrel
A picture is worth a thousand words was once said but what do these pictures say?
A picture is worth a thousand words was once said but what do these pictures say?
posted by Kilpike | 2:23 pm
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