Chapter 401 - An Observation

She was awake when I rose about 0615 this morning. I decided to use our hired transfer trolley, rather than attempting to lever her onto the commode as usual, to take her from bedroom to bathroom, since at this time her system must be lacking all meds. She could be expected to be "off"  and without dyskinesia issues.The transfer from bed to trolley was easy; after placing her shoes on her feet I backed the trolley up to the bedside, had her sit-stand onto the trolley and easily flipped the two seating pads beneath her bum, for she was able to stand upright with little difficulty. I transported her into the bathroom and positioned her over the toilet. All that was required was another sit-stand manoeuvre on her part, but she began her bouncing (knees flex and her bum bounces up and down), remaining slightly stooped so there was slight difficulty swinging the seat pads out of the way and then helped her lower herself onto the toilet seat. Once seated, what seemed to be dyskinetic shakes in her legs quickly calmed until there was no obvious signs of any form of tremor. When she was finished, I positioned the trolley to transfer her from the toilet to the commode but she decided she wished to return to her bed. Again the bouncing of her bum as she did the sit-stand on the trolley, there was some little trouble flipping the seat pads into position, then transferred her to her bedside, a spare incontinence pad for her to sit on, a sit-stand on the trolley, I flipped the trolley pads out of the way and she sat gently on the bed, bum bouncing, then as she sat her legs began their "dyskinetics", but only mild, then faded away. I may be dim but I now suspect that much of what I call her "dyskinetics" in this case are initiated by stress and fade away as the stress is relieved. Stress in this case being fear of falling, fear of incontinence or whatever. At mid-morning when she was feeling reasonably well I enticed her to go through transfers and transports using the trolley. Only marred by slight bum bouncing and leg "dyskinetics".

Last Wednesday at mid-afternoon she stated that her left leg "felt as heavy as lead" An hour later the left leg remained "heavy" while her right foot tingled. On going to bed she remarked that the dyskinetics in her left leg "feel different" to those in her right leg. I wondered whether this was a symptom of her left leg regaining sensations after her stenosis operation, some five weeks ago. Her toes and feet have always reacted painfully to touch but perhaps pain response follows a slightly different circuit. Anyway, something to tell the neurosurgeon when she sees him at a follow up appointment in a week, for there have been no other changes.

The patchwork project has been files away and now she is attempting some form of a bag of patchwork squares and borders. I noticed some non-square joins yesterday and today some of it has been unpicked and is in the process of re-stitching.

Last time I saw our GP I mentioned a strange problem with the ring finger of my left hand. He said it was jack knife or trigger finger. I had removed my wedding ring in an attempt to relieve the discomfort but it has persisted. Perhaps initiated by pulling her up off the toilet by the rear of her pants, then twisting her bottom onto the wheel chair? I hope it doesn't happen in my right hand as well. Another reason to make full use of the transfer trolley.

We are becoming very tired and irritable. I have started taking a little blue pill at night again to help me sleep. My CPAP (not quite the correct term since the new machine does not provide constant pressure) has been making my mouth as tasty as an old sock due to my mouth leaking air so I now use a wide strap of elastic around my head and jaw. perhaps I should invest in a professional strap.

This morning I lowered her Duodopa dose rate from 5.0 to 4.9 mL/hour, looking for lessening of her late afternoon/evening dyskinesias. I mentioned last post that these are finer and more rapid than some months ago.

Chapter 400 - Going Nowhere

Is this just part of old age? I don't want to go out, she prefers to stay at home, neither of us is enthusiastic about phone calls, when I go shopping I waste half the day so I procrastinate until a needed item runs out then I buy extra of anything seemingly important. On line super market shopping is helpful but since I began the on line ordered, delivered to door diet (frozen and refrigerated items) there is less to buy weekly so delivery costs are a greater percentage of the costs. I tried her on my diet food but quickly learned finely grated carrot and such like cause her swallowing problems. I was buying frozen fish fillets and suchlike for her but decided doing so and cooking frozen vegetables was a chore so now I buy expensive as well as cheap frozen dinners for her (none of which cause her swallowing difficulties; strange). Last Saturday I bought her an impulsive and expensive box of chocolates, small rough surfaced balls, which melted quickly in her mouth, leaving behind a mouthful of unswallowable finely ground nuts which had to be spat into a tissue, and since the whole box consisted of the same chocolate balls, she was unable to eat any more. I ate a few before remembering my diet.

Last week she began knitting a difficult tiled pattern for a beanie. I noticed she did some dozen or so rows before pulling the lot undone then starting again. This continued for a few days. She said she got so far before noticing mistakes and it was easier to begin again. When asked she said she made mistakes; the pattern was not in error. She eventually discontinued the project. A few days ago she began cutting out hexagons (using a plastic template) for some patchwork. She used her sewing machine (the one without the foot pedal, she is unable to control such devices) to stitch the pieces together. There was some unstitching done for corrections but a number are now sewn together. I will monitor her progress.

The new fore-arm walker has hardly been used because we were unable to find her round-the-waist safety belt to support her. The trolley device we have rented is perfect for transfers bed to commode, to loo, to wheel chair etc except when her lower half becomes dyskinetic and her body bobs up and down, making it difficult to seat her on it, she is unable to stand straight enough to swing the seat paddles into position and her shaking tends to dislodge the brakes. Morning transfers bed - commode - loo - commode (shower) - bed (while dressing) - standing to arrange her clothes - wheel chair all work perfectly but we can't use it at night to transfer wheelchair - loo - fit overnight incontinence pants - bed because between 9PM and 10PM her dyskinetics are worse and she becomes stressed. So we need to use the bad strong arm lifting procedures as always. And at that time of night there is no help as of a morning when Wild Dog care is here. The machine itself works well and is ideal so long as the patient is able to stand briefly. There are a couple of mechanical issues I have reported that I expect to be resolved on the model we purchase. I may post a picture of the trolley; no physio, OT or carer has ever seen one.

Our local OT thought the foam cushion I bought for the wheel chair most unsatisfactory, so he loaned a gel filled type which she found to firm for her coccyx area. An air filled cushion from the store that supplied her wheel chair, the fore-arm walker and the transfer trolley is much better and her pains have gone.

After my hydrocoele day surgery I experienced an uncomfortable week, followed by a week of UTI during which I almost admitted myself to the local hospital one night when I found I was unable to piddle for pain. I took a specimen to pathology and our GP gave me a course of antibiotics (Ibelex 500, the same given by the surgeon after the day surgery) but when they were ineffective he prescribed 2 only Apo-Azithromycin because the specimen results showed no culture but a trace of blood and sent me off for a CT scan of my sewage area. The GP mentioned the possibility of an STD but that is as impossible as a miraculous conception! The UTI symptoms ceased the day after taking those two pills a week ago yesterday, Saturday, and the CT scan report was clear except for an enlarged prostate (so what's new?). So as I'm beginning to feel a little better, she catches a cold, then I do, so we both suffer a miserable two days followed by the lingering after effects for the rest of the week. I now reach for the box of tissues.

She was referred by the Hot Air private hospital for follow-up physio at our local hospital, so now she has 4 half hour physio session, including what is provided by Wild Dog.

She likes me to cut the blooms from our few standard roses to bring into the house. I bought 3 dahlias for our raised garden bed; she likes to play at gardening in the garden bed from her wheel chair.

Chapter 399 - In need of Coping Strategies

The Carer's organisation funded $600 for a driver from Wild Dog to drive me to the Private hospital (the same where she was) in Hot Air City for my hydrocoele day surgery procedure on October 29th, wait for my discharge and then return both of us home, for she was discharged on the same day. Well evening actually, at 6PM I was ready to go. I am so glad I had cancelled my plan to drive there myself, stay over night in hospital accommodation after my procedure and then drive us back the next day. I was unfit to drive for several days due either to pain (only a bloke can understand) or to motion stability due to pain killers. Even now, over a week since the operation, I am tired, weary, short tempered, needing to carefully sit, bend or lift items.

In my last post I was in error when I described how far she had walked with her new walker; rather the distance was probably less than 20 metres, after that she was in her wheel chair. The day after returning home the physio from Wild Dog had her use the new fore-arm walker. I recorded half the period she was on her feet; you may see the clip, until I remember to delete the share, at

https://drive.google.com/file/d/0B3e-dSmNja1dQnBSS3NCMTVtaWs/view?usp=sharing

The surgery for her L5 stenosis was well done technically, it healed properly, she experienced no more pain than expected following an operation of that sort. But so far no improvements in the mobility of her left foot/leg. Some rails in time past on the garage wall to aid her into and out of the car are now her aids to do sit-stands, she sometimes does foot movement exercises and I am leaving her to transfer herself, whenever possible, onto and off the loo. My right hip no longer freezes in pain, the enforced "respite" of 3 weeks while she was attended by nurses, usually in pairs, has taught me a lesson. And of course her leg dyskinesias still occur, although perhaps somewhat reduced. So hard to place a measure on such things. While she was in hospital I kept her Dupdopa flow rate constant at 5.5 mL/hour.

But what is driving me to distraction is her "punding", the obsessive/compulsive nature of many of her activities. Today I bought online a very short paper (cost me $50 local currency for 4 pages and a video clip). The paper begins "Punding is defined as a constellation of complex, sterile and stereotyped behaviours including an intense fascination with repetitive manipulations of technical equipment, the continual handling, examining, and sorting common objects, excessive grooming, hoarding, incessant fidgeting at clothes or oneself, pointless driving or walkabouts, and the engagement in extended monologues devoid of rational content." Practical Neurology 2007; 7:397-399 O'Sullivan, Evans, Lees.

Some months ago our punding experiences began with her collecting my loose change for counting and sorting and placing into plastic bags. Once was enough but she did it repeatedly to check the total and to add fresh coins. The compulsion was resolved by taking the lot, $200 or so, to the bank. There must be a lot of loose change around the house again but she is yet to begin counting again.

Then the idea to make a vest with a pocket into which the Duodopa pump could be fitted became a major project. Although she has been a sewer all her life, from her teenage years making many of her own clothes, this project was beyond her. After stitching seams she would decide they were not straight so with small snipping scissors trimmed off the excess, go too far, then have to start again. That was resolved by buying several ready made vests onto which she was ti attach suitably sized pockets to accept the pump, Again she had problems sewing the seams and thinking they lacked strength, repeatedly stitching over again and again. I bought myself a lightweight jacket which needed an additional inside pocket to accept my book reader; much the same happened, crude irregular stitching that was covered with strips of bias binding which was also badly sewn on. She knitted red wool panels to be sewn together, had similar sewing problems, snipped the excess edges, filling the house with shreds of red woll. Perhaps these examples are not exactly punding, but the doggedness, refusing to give up, an inability to sit back and see what was going wrong,

She becomes mesmerised looking at the screen of her smart phone, the screen of the T-hub phone station, meanders around her Surface Pro menus becoming lost not knowing how or why she is looking at a specific window, clicks on suspicious emails and  links without recognising dangers, I need to remove add ons & toolbars she has no idea she has installed.

A few months ago she spent days repeatedly sorting and positioning her porcelain and crockery in the cupboards. Every so often she resorts the fridge contents and the food pantry, making me very irritant when unable to easily place my hand on something. I am on a delivered-to-the-door frozen dinner diet (it works!) of which most of the items are kept in a small freezer in the laundry - she sorted all the items making it difficult to locate specific daily items. She sorted the contents of the laundry cupboards where I store the supplies of her incontinence bloomers so it was difficult to figure out what stocks had to be ordered. She sorted all the kitchen cupboards when all that was needed was restacking (I do tend to toss thing into an appropriate cupboard from the dishwasher). She has cleaned & sorted her sewing room at least 4 times, gradually throwing away many items and pieces of fabric.

Her latest effort was to re-arrange our bedroom, unplugging CB's, mobile phones, bedside lamps, CPAP machine, the adjustable beds then repositioning her bed and bedside cupboards, the "nurse's station" holding Duopdopa aids & accessories, and all from her wheelchair!  In doing so she triggered the emergency call  system so I had to convince the operator it was only a false alarm. We had a domestic about all this and I never found out why she decided to re-arrange the bedroom. She began it again today because a small LED clip on bedside lamp was not appropriately positioned for her last night. Fortunately I found power cords tangled in the mechanics of the bed before too late.

O'Sullivan et al quote others who say "punders were taking higher daily amounts of doperminergic medications than non-punders". I suspect she commenced Duodopa at the equivalent level of the multiple Sinemets she was taking beforehand without allowing appropriate compensation for the efficiency of Duodopa delivery. Also, professionals have said that her diphasic dyskinesias are likely due to over medication. As I see it, both effects are to be minimised by reduction in Duodopa flow rate, so some days ago I reduced the flow by 0.2 to 5.3 mL/hour and again today by another 0.2 to 5.1 ml/hour. Much faster than suggested by Dr F a few months ago. Can anyone tell me of the dangers, other than some discomfort? We both of us are both in serious discomfort at this time, physically and mentally, matters can only become better.

I feel much better for having written this tonight, even though doing so has taken some 3 hours, with a few interruptions. Even if no one ever reads my words, I don't care, and I don't allow the great unwashed agnostics about Parkinsons comment. Now to complete tonight's going to bed tasks for her to wake to a better tomorrow in the morning.

P.S. Try Googling "punding" and "Parkinsons Disease".