Chapter 404 - Changes

Notes have not been kept since 18th December. The day before I noted that the squares of the quilt on my bed appeared to her to rise up into a large bump; of course in reality this was not so. Since then similar illusions happened; sitting quietly on the toilet she may experience a "moving backwards sensation perhaps due to the grid pattern of the large floor tiles. She had me look at a wheel on the trolley which looked like a bird to her yet not to me. She remarked about lights on the large pine trees along the fence of the property at the rear; as she mentioned this several times I rose and saw only a few patches of sunlight on a couple of branches where the setting sun shone through from the other side.

Our village pond is a home for a flock of ducks and water fowl; they wander around the fronts of the houses bordering the pond, pooping everywhere, but in all the years we have been here they have never been as far as our house with its paved courtyard surrounded by a picket fence. Anyway, she told me saw either ducks or water fowl in our courtyard. Being smart, I asked "How would they get in, since both gates have been closed?" to which she answered "By flying of course." Then yesterday when I was sweeping the courtyard I found a large puddle of white poop on one of the chairs so perhaps they were real.

She decided not to wear the wrap around, sticky tabbed incontinence bloomers to bed. I let her risk wearing more conventional incontinence pants, and a size smaller because the Size L had become too loose due to her weight loss. And she wanted the commode at the side of her bed. Some nights she lasts till morning, some nights she struggles herself out of bed onto the commode usually without waking me.

Although still fearful of being transported/transferred on the trolley, she has accepted that its use, especially at bed time, is kinder to my hips as well as her shoulders, although both remain painful. She usually takes herself to the loo on the wheel chair, often not needing my assistance.

Her only medications are Duodopa 4.8ml/hour 24/7 (without bolus or morning doses0, one only Endep 25mg and a drop of Latanoprost in each eye nightly.

A quiet Xmas lunch with other orphan oldies in our village hall.

Chapter 403 - One Step Back, Two Forward

When I woke this morning she was sitting on the side of the bed (must have released the locking pin on the side rail of the bed herself?), positioning the commode so that she could sit on it and fiddling with the tabs on the incontinence bloomers in order to remove them. Being half asleep, I'm unable to remember how or when the bloomers were removed. I wheeled her into the bathroom where she stood without assistance and sat on the loo, then returned to the commode to be wheeled back to the bedroom. After showering, the Wild Dog care person assisted her  on the transfer trolley to the bedroom, dressed her & pulled her pants up while on the transfer trolley then transferred her out to her wheel chair for breakfast. My assistance was not needed so I concentrated on breakfast preparation.

The Duodopa pump was kept running 24 hours each day through the past week. For the first couple of nights I reduced the flow rate in steps down to 2.4 mL/hour without signs of improvement, if anything her mobility decreased. So on Thursday night I did not reduce the flow rate but left it at 4.8mL/hour as during the day.

Friday morning she transferred from bed to commode with much more agility than usual. Around 0830 she took herself to the loo without assistance. Great! I thought, until at 1045 she did require assistance for the same task. This time her legs/feet were rapidly shaking; dyskinesia or a "nervous" problem? That night pump was left on again at the day flow rate of 4.8 mL/hour.

Saturday morning began well and I didn't note any leg tremors (maybe I just didn't notice) but she was sitting-standing with greater ease. By 0945 it was time to be ready to attend respite at Wild Dog. I found her attempting to tie thin green ribbon around the straps of the Duodopa pump bag in order to somehow suspend the bag without having the strap around her neck. She exclaimed "I'm trying to tie a bow in the ribbon but I can't! I know what I want to do but I can't do it!!!" Green ribbon was wrapped and knotted around the straps of the bag. With a little difficulty I disentangled the green ribbon, adjusted the straps to be shorter and threaded them through the shoulder straps of her bra. She was happy. Off to respite. Her feet tingled all day but only up to just above her ankles, rather than up to her knees.

Last night (Saturday) I gave her the first 25mg Endep prescribed by Dr M. the neurosurgeon. I had some days previously trialled her on 10mg Endep (my GP had prescribed it for me when I had insomnia problems recently) without ill effect to her. This morning she described her head as "heavy, as if a headache was coming." Now at mid morning her head feels the same, there is no shaking of her legs and feet, when her feet are off the floor only her feet tingle, when her feet touch the floor the tingling extends half way up her shins. She says "This is too good to be true!" (referring to her mobility) and then wonders why Parkies are told to only run their pumps from 0600 to 2200, perhaps longer periods are harmful? I replied "We'll ask at your next clinic (at West Beer), on the 3rd of February. Of course tomorrow may be a bad day."

And tomorrow is but a day away.

Chapter 402 - Speeding Downhill

Monday - Care Person from Wild Dog completed transfers by herself, commode from shower back to bedroom, pulled up knickers and pants by herself then transfer from bed to wheelchair. She did not wish to use the trolley, I was browned off, sulking, no one called me for help so I concentrated on breakfast preparation. Later that day, the physio D (she returns to West Beer hospital so we don't see her again) decided to have her transfer between the wheel chair and our car without pulling and shoving without using the slider board, which we demonstrated to physio D. Then four transfers to and from the car were accomplished without problems, although she feared falling into the gap between wheel chair and car. Elsewhere I think I was later able to have her transfer without the board about three times before I gave up and returned to the board method.

Tuesday - A flash of realisation had me rotate her bed end-end so that the commode or wheel chair can be positioned at the correct angle for her to position her right foot (the load bearing one) as directed by physio D who has been having her transfer between wheel chair and "bed" during physio sessions at the hospital. But as with the car, we seem unable to easily and correctly complete the task. Back to the slider board and/or pulling/or shoving.

Wednesday - Prior to taking her into Respite at Wild Dog I asked at reception for permission to view a standing lifter they used on the premises according to morning care ladies; I was directed to the office of L., a helpful bloke, who showed us a lifter which relied upon a wide belt around the patient to lift the body from chair etc to a standing position. Wild dog uses this device to transport and/or transport whereas slings are only for transfers. Next day I called back twice to get a model number of the device but L's office was locked and phone calls were not answered.

Friday - Her follow up visit to Neurosurgeon Dr M for her stenosis surgery. He did not seem surprised that his handiwork has not resulted in any improvement in her left leg. We discussed the matter at some length. He wants to see her again in February, after she has another MRI on the L5 area. On the referral for the MRI is written "Progress after lumbar decompression. No symptomatic improvement". He said there was no reason for not having the MRI performed in Hot Air City, quoting the number of Teslas etc, when I mentioned that Dr F. at West Beer directed her to have MRI's done up there for reasons of resolution. And two $700 all day round trips up there and back by Wild Dog. Dr M. was surprised that no one had suggested she use an AFO, Ankle Foot Orthosis, to hold her left foot in position, rather than drag on its side on the floor. Dr M. said the heaviness in her leg may indicate nerve repair is happening, although sometimes such sensations imply the opposite.

Then we drove over to MovementIssues to see a demonstration of a standing lifter, similar to the one we saw at Wild Dog. Although she became somewhat "dyskinetic" (stress initiated), they were able to lift her. I was not very impressed; the staff seemed less than enthusiastic. They are willing to demonstrate the device in our home. They also had a sling lifter there as well but I said the legs were too large for manoeuvring inside our house and it is not intended for transportation. I am to decide by Monday morning how we intend to proceed because our 4 weeks rental for the trolley expires next Tuesday. My query about an AFO resulted in contact details for a Prosthetist/Orthotist with whom I will arrange an appointment.

Saturday - Before she went to Wild Dog for respite I reduced the pump rate from 4.9 to 4.7 ml/hour. When I collected her at 1530 she felt stiff and slow so I raised the rate to 4.8. I decided to run the pump overnight so at 2100 I replaced the cassette with a new one before reducing the flow rate to 4.0 ml/hour.

Sunday - At 0720 our usual bed to commode transfer, into the bathroom to remove the incontinence bloomers then onto the loo and I set the pump flow rate back to 4.8. There was mild leg dyskinesia, feet and lower legs tingling, no pain, head clear (although she "seemed" sluggish) and her mouth was "dry as saw dust". She found it easier to get out of bed. She believed she didn't move much during the night. After showering she had difficulty standing to transfer from commode to trolley, then transferring to sitting on the bed was easier enough but standing to pull up her pants and standing/sitting on the trolley was difficult, much more than previous mornings. Then transferring her from the trolley to the wheel chair out in the eating area was more difficult than usual. Before eating breakfast she had a bloated feeling.

Mid-morning I set up the video camera to record her transferring between wheel chair  and the trolley but she was unable to sit-stand, even when I placed a padded belt around her chest in an attempt to assist her standing. I had told MovementIssues that we intended practising transfers with the trolley to make a decision by Monday morning. Now on Sunday afternoon I cannot decide. The contrast between the afternoon in MovementIssues' showroom some weeks ago and her performance today is quite marked, although I have clouded the results with pump changes. What appears to be dyskinesia in her legs is her reaction to stress and fear rather than dyskinesia (which may or may not be present at the same time), in that the movements are seen to grow and wane as she attempts to stand and then sit on the trolley. The staff at MovementIssues noted this when she was lifted in their show room on Friday.

As for me, my right hip has sharp pains as day proceeds until I'm limping by bed time. At the beginning of each day hardly a twinge happens. I presume this is due to the effort of lifting and twisting when assisting with transfers. The cold I had has passed, yet there is a persisting infection in my throat and my left hand trigger finger continues to bother me and the grooves caused by my wedding ring persist. I have begun vibrating Voltaren Osteo Gel into my right hip, seems to help.

I'm becoming angry and tired. Stuff it all!!!