Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Saturday, August 25, 2018

Chapter 498 - Routine and Normal Irregularities

On returning home on Wednesday from my respite down town she told me that her Brother sewing machine was broken. The Wild Dog carer remained silent. For unexplainable reasons she had removed the foot and mounting screw, the needle and holding screw, swapped said screws about so a needle could no longer be held in place, removed the bobbin cover and bobbin, somehow bending the little flap that makes the bobbin cover pop up, and as usual was using a wrong needle. Matters easily  corrected but she was unable to give reasons for having done those things.

She had completed knitting a flat panel for a beanie but as she began to stitch the edges together to make a domed shape an error of some sort was discovered and unpicking began. That meant snipping the knitted snitches with a large pair of scissors, cutting knotted sections and rolling the resulting short lengths of wool into many small balls; what had once been two balls, one pink, one white. When this project began she was unable to read the fine print of the pattern which had to be enlarged 200% on a printer.

her eyes have been very red and weeping. Over a week ago a Wild Dog carer commented that we used eucalyptus scented tissues which may be irritating her eyes. Since then only unscented soft tissues go any where near her eyes and I am specially careful to rub hand santiser on my fingers whenever I apply her glaucoma and dry eye drops many times each day.

Yesterday she attempted to read a paper back novel through a magnifying glass. I downloaded the same novel to my Kobo, enlarged the font and reduced the screen brightness until she was able to read easily in bed for several hours. This morning I ordered a new ereader for her before I suffer withdrawal symptoms. She is not inclined to assemble the large lego kit bought quite a few weeks ago. Last Sunday she bought a magazine containing a card making kit, inspected all the pieces then packed them away. The quilt of often assembled/disassembled squares has had some progress made on it, but just now a lace strip is being stitched around the edges of what could be a table cloth.

The duodopa pump continues to be run at 5.0/2.0 day/night flow rates. Some days the FitBit shows excessive dyskinesias during afternoons; almost as if a change in rates is beneficial for a short while but the dyskinesias gradually return once she grows accustomed to a new rate.

Her bowel motions have become regular as far as I know; she is no longer wishing to sit on the loo so often and for long periods. She regularly drinks 400ml of cordial flavoured water while using the pedal machine each morning before showering. Glasses of fruit juice containing Benefibre are taken twice each day. She sips some water and cordial during the day. I am thinking of cancelling the appoint for her in November to see a specialist about anal prolapse; if she can continue without discomfort and pain then I think it better not to proceed. I wanted to take her to see the incontinence nurse at Community Health but bureaucracy is insisting on GP referrals and ringing an 1800 number for appointments. I may be unable to take the used duodopa cassettes there any longer either.

I bought some paint to patch the areas around doorways where her wheelchair has left gouges. Not a perfect job but looks much better. We continue to add small flowers to her planter box outside the back door but she no longer pays it much interest. Perhaps once the weather warms she will again wish to water the flowers.

On Wednesday before last I suffered routine colonoscopy and gastroscopy procedures at the local hospital. My left upper incisor was cracked by the withdrawal of a plastic toroid from my mouth and I am assuming at this time the procedure results are negative; a follow-up appointment is scheduled in September. The anaesthetic has had an impact though; twice since I have been confused giving my birth date and I came within cms of running into the rear of another car. I also presented myself for a bone density scan on the wrong day.

On the 22nd of August I told her 59 years ago I took her on our first date to see "South Pacific".


Sunday, August 12, 2018

Chapter 497 - I'm Not Going to Bother Anymore

"I'm not going to bother anymore" I said, quietly, as I walked away. "What about?" or words to that effect she replied. I did not answer, just walked away. Those may not be the exact words, yet close enough to convey the meaning. I can't even remember the straw that caused my statement. I suppose one of her activities in the back room which she has been re-arranging, re-sorting, furniture, drawers, cupboards. Again. That was yesterday.

Last Sunday a routine trip to the shops again. I bought some more shirts, she a sort of "over shirt" which was not quite a jacket, with embroidery on the upper left side, perhaps $10 or $15 (I took no notice) at KMart. She wore it to the Dance for PD class at St Nick's Hall on Tuesday. That afternoon she decided an inner flap that ran down the left side front needed fixing, she became intent on removing it completely rather than sewing it flat. So she picked at the sewn seams with scissors until most of it was loose, the edges in frayed tatters. The next day she made repairs by machine sewing dark grey bias binding, not very straight, on the outside of the jacket. I pointed out that the bias binding did not tone in with the green of the jacket, it should be on the inside. Although she did not agree the bias binding was hacked off. I took some photos in the early stages of destruction of the garment. Just now I went looking for it, finding it in a box; the collar and both the button hole and button panels cut off. There is a "chewed" hole in the lower left hand side of the jacket, which must have been folded under while the removal of the panels took place. In my opinion the item is no longer repairable. She continues with attempts to make something of some plain pink and some floral squares but the patchwork gets so far before it is dis-assembled again; I suspect the pieces are becoming smaller. One small quilt assembled a long time ago had lace hand stitched around its edges and that has been shown to Wild Dog Carers when they visit; I suspect as evidence that she remains capable of such work. They make complimentary noises, I cringe in pity for her.

She unpacked the Lego pieces from a large box bought some weeks ago. The cellophane bags containing groups of pieces have been packed into Tupperware containers. Yesterday the large box was dismembered with a serrated knife and the pieces packed away somewhere. No attempt yet at making the rather complex models; modern day versions of doll houses I think.

I have a day visit to the local hospital next Wednesday and since I need to be there at 0700, I simplified the morning dose rates on her pump by eliminating the short 6.0 mL/hr period which I had thought may be a better Morning Dose but was more of a chore that was easily forgotten.

Following are some FitBit Charts for the past week. The numbers on the hand drawn horizontal lines are dose rates in mL/hr from the Duodopa Pump. The FitBit is attached to her right leg.

Monday 6th August: Dance for PD while watching the DVD followed by some mild physio by Wild Dog Carer 1115-1200


Tuesday 7th August: Live session of Dance for PD at church hall 1000-1200


Wednesday 8th August: No activities of note.


Thursday 9th August: Attended the sewing circle at our village hall 1000-1330.


Friday 10th August: Mild physio session by Wild Dog Carer 1115-1200


Saturday 12th August: Rearranging chairs etc and drawers in back room and sorting packs of Lego pieces maybe 1100 - 1600.



I only wish I could put my finger on what induces the dyskinesias, what causes one day to be "bad" compared to another? Sometimes she has a "bad" day without much dyskinesia; what does she mean?

Being Sunday I offered to take her on our usual shopping adventure; she declined - I don't know why.
A few days ago she had diarrhea; this morning she took herself to the loo from the wheel chair and while sitting there for ages did an enormous stool and of course "there was more coming" but that was a prolapse matter. And while sitting there she "cleaned" the wheel chair with a tooth brush and tissues. After that she followed one of the Dance for PD sessions on DVD. She thought there was washing to be put away, so I brought in a full washing basket and stuff on hangers. My shopping for medications and a couple of food items will be left for tomorrow morning; if she doesn't wish to go with me then she can wear her emergency call button and stay home on her own.

Sunday, August 05, 2018

Chapter 496 - Monitoring


On 7th June the Duodopa pump was set to 7.0 mL/hr daytime flow rate, 2.2 night time flow rate and a Morning Dose of 1.0. During the week following these changes she experienced 12C degrees differences between her feet, minor panic attacks, cupboard sorting sessions.
Fitbit Chart Thursday 14th June 2018



I think I mentioned in an earlier post that she attended a PD Clinic at West Beer on the 27th June when no further advice was given about dose rates. On that day she returned from West Beer with an abscessed molar which was extracted the following day. The FitBit chart for the next day, Thursday 28th June, is remarkable! For a person who was referred some years ago by a local dentist to a children's dentist down in Hot Air City because he was unable to cope with her PD symptoms, this chart shows that she had NO dyskinesias while enduring a tooth extraction and what is more, her leg movements were almost negligible for the remainder of that day.

Fitbit Chart Thursday 28th June 2018




Yet the following day her leg dyskinesias returned to "normal" as seen below.

                                                Fitbit Chart Friday 29th June 2018




She returned to the dentist on Thursday 26th July for a check-up and clean. Three  fillings were found in need of repair so she returned on the following Thursday 2nd August to have that work done (see chart further down). Note that I had lowered the Duodopa dose rates from mid July , without reference to Dr F, because I decided her dose rates were too high causing excessive dyskinesia. Note that the following charts show the periods for specific flow rates, thus making for easier interpretation.

FitBit Chart Thursday 26th July




The day following the teeth check-up and clean we drove up the road for lunch. See the following Chart. Perhaps stress of being in a public place for lunch and my driving home in traffic caused her dyskinesias during the afternoon?
FitBit Chart Friday 27th July





The following chart shows her dyskinesias on a day on which we did not leave the house.


FitBit Chart Sunday 29th July




The following chart, Thursday 2nd August, again shows her lack of reaction, in terms of dyskinesia,  to the repair of three fillings. After we returned home, I wheeled her in the wheel chair to the ladies' "sewing circle" at our local hall. Beginning at lunch time until after she was in bed her dyskinesias were bad.

FitBit Chart Thursday 2nd August




Then the following day Friday 3rd August, she was calmer, and only having done some mild exercises guided by a Wild Dog carer.

FitBit Chart Friday 3rd August




There must be a message here somewhere in my crude data gathering.

She seems to have abandoned a previous quilt that she had been "fixing" for quite a while and has begun "finishing" another, incomplete, from a long time ago, by attaching lace around it. She is forever frustrated by dropping pins and needles, for this work is being done by hand. I'm beginning to think that this hand work is too stressful (frustrating?) for her.