Chapter 390 - A Relief for Me

Last Wednesday we returned to West Beer for what has become her regular PD clinic. Both Dr N. and CNC D. saw her.The usual questions and answers and discussion, until the question "Nothing else new?" was asked, whereupon she replied "No", quickly followed by my "Yes!". Then I described what I thought Obsessive Compulsive Disorder, when she repeatedly rearranges her sewing room, sorts items in the cupboards, our DVD collection, begins sewing projects then pulls them apart, took at least a week to sort and total $140 of loose change, unable to total a list of prices totalling $120 and using wads of paper in the process, and the list goes on. "Punding" was all Dr N. said before reading from his mobile device a case study of a 72 year old woman with exactly the same symptoms. Another result of over-medication in this case, assumed to decrease or disappear as her DuoDopa dose rate is decreased.

I quote:

Punding in Parkinson's disease: its relation to the dopamine dysregulation syndrome.

Evans AH1, Katzenschlager R, Paviour D, O'Sullivan JD, Appel S, Lawrence AD, Lees AJ.

Author information

Abstract

Punding is a term that was coined originally to describe complex prolonged, purposeless, and stereotyped behaviour in chronic amphetamine users. A structured interview of 50 patients with higher dopamine replacement therapy requirements (>800 levodopa equivalent units/day) from 123 unselected patients with Parkinson's disease (PD) from a PD clinic identified 17 (14%) patients with punding. Punding was acknowledged as disruptive and unproductive by the patients themselves, but forcible attempts by family to interrupt the behaviour led to irritability and dysphoria. Punding was associated with very high doses of dopamine replacement therapy often related to a pattern of chronic inappropriate overuse of dopaminergic medication. We believe that this is an underreported, socially disabling phenomenon that is commonly associated with the syndrome of dopamine dysregulation and is phenomenologically distinct from both obsessive-compulsive disorder and mania.

Copyright 2004 Movement Disorder Society

Her Duodopa rate had been 6.8mL/hr; CNC D. further reduced the flow to 6.7 to delay the onset of severe dyskinesias in late afternoon.

So since last Wednesday the onset time of her dyskinesia may be after 5PM now but it is too soon to be sure, since the time varies with activity and stress. I will reduce the flow by another 0.1 mL/hr if need be. I don't think the punding is impacted by the reduction although that is harder to quantify.

Another concern I raised at West Beer was her swallowing difficulties. She is unable to swallow soup and bread together at the same time (she likes dunking bread in soup). She was unable to swallow a piece of boiled pumpkin (I don't blame her!) from the Lite'n'easy diet I placed myself on, and also I shared a portion of shepherd's pie with her but the finely grated carrot included with the pie filling became a soggy ball in her mouth, she was unable to swallow. Yesterday was unable to eat a toasted cheese, tomato and gherkin sandwich, one of her favourites. Dr N. suggested having our local GP refer her to a speech therapist and to have a modified barium swallow test. The swallow test will be done next Wednesday at our local hospital.

One thing noted, each morning after the Care person brings her out to have breakfast she tends to "nod off" once or twice in her wheel chair before completing breakfast, and only then.

The pains in her feet, toes and legs are becoming more intense. No word yet from Hot Air Hospital about admission to Neurosurgery for a fusion job.

Chapter 389 - Muddling Along

That list of her strange behaviour I sent to J., the CNC at West Beer and included a scanned copy of some calculations she made with pencil and paper. Periodically a catalogue of "useful" home care items is left at our door. Sometimes she buys something. She filled out the order form by hand. It was so messed up with calculations, scrawled writing she decided it was illegible so typed it instead, after I started her using a word processing application on her Surface Pro. That went well, until she needed a total of the prices. Many scribbled sheets of note pad later she became very frustrated, asked my help. I added the figures to exactly $120.00. She was unsatisfied with my calculation; wished to prove it herself, so I gave her my old 1980's style desk calculator, big buttons, without touch screen. She experienced difficulties even with that. So I started a spreadsheet and showed her where to type the cash amounts and calculate a total. She was content with that once I demonstrated that making a change of $1 or so in one cell made a corresponding change to the total. J. emailed back to me that we will discuss this at our next clinic, a number of weeks away then but with the grinding of time is now this coming Wednesday.

Another matter I must mention on Wednesday is the persistence with which she attempts projects which has a concept of how to do yet is unable to put her ideas into practise. For instance, A Scrabble board made out of fabric; I helped her lay out what I thought she wanted; she began but had problems with the sewing machine (threading needles, sewing straight lines etc), so other ideas were attempted and eventually dropped. She began knitting a scarf, changed her mind, began another object, something went wrong, pulled it apart, getting two balls of wool like "stuff" (knitting with two threads together) so entangled that she spent several days attempting to wind the stuff back onto balls. She then began the project again but I see there remains a large bundle of "spaghetti".

She continues to have dyskinesias from mid-afternoon, possibly less vigorously, so I reduced the Duodopa flow from 6.9 to 6.8 and haven't really noticed any changes. Her Deralin has been reduced by 20mg a day each 1-2 weeks so from tonight onwards she will take none at all. I hope the West Beer team approve. She had been taking a bolus dose around the time her personal care person from Wild Dog arrived. Then I realised that if I attach her pump a little after 7AM, initiate the "Morning Dose" which runs at 14mL per hour (from memory) for about 30 minutes (although I haven't timed it) THEN give the bolus to cover the period the pump is removed while having a shower that the effective dose may be higher than it should to begin the day. I must clarify this with J. Some mornings the personal care people need assistance to transfer her from seated on the bed into the wheel chair, although that may depend on the amount of effort a person is willing to exert. Some mornings her bum wobbles up and down so quickly that pulling her pants up is almost impossible (such also happens frequently getting on and off the toilet). One morning I forgot to push the "morning dose" button, noticing she was very docile when wheel chaired out for breakfast.

A long while since the physio person from Wild Dog has had her do "sit to stands", exercise is limited to boxing gloves and other arm actions and only heal-toe, seated stepping with weighted ankles.

Twice in the past few weeks she has had  large pink areas, firstly on her right lower arm then some days later on the side of her lower right leg. We thought at first she must have bumped the areas involved (no memory of having done so) because they gradually became a pale bruise colour. I spoke on the phone to J. clinic nurse at the doctor's; she advised seeing the doctor. When he saw the photo I took of the arm he was puzzled but did not mention platelets as did the nurse. After asking the expected questions - itchy?, sore? , hot? - he wondered whether this may be a side effect of the DuoDopa. We will ask on Wednesday.

Last Sunday I took her around the shops where she stocked up with lots of clothes on sale. She really enjoyed herself, brushing her hands on clothes on racks as she wheeled by. I'm sure blokes don't do that.

I began a Mediterranean diet 2 weeks ago, losing 2Kg's in 1 week, finding it easy to comply with but I had bought excessive unusual (to me) foodstuffs used in small quantities and the fridge is overflowing with items not even used in the first week, so I abandoned that diet, opting for a home delivered, largely frozen, type instead. My aim was to trial this myself then introduce her to it next week. I shared half of a foil tray of cottage pie with her but was disappointed that she was unable to swallow the food, quite soft stuff with finely grated carrot in it, the wad of stuff just circulating in her mouth.  A failure unless the place caters for those with such problems; I must check their website.  I am finding more and more often that there are balls of stuff wrapped in tissue left on her plate. Looks as if the time has come to seek a speech therapist.

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:

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.