Chapter 407 - A Pleasant Outing

I procrastinated yesterday, didn't go shopping while she was at respite at Wild Dog. Perhaps shopping is becoming too much of a rushed chore for me. This morning I suggested we go shopping together, first to the Big Hardware Store on the other side of town where I didn't buy the shower fitting I needed but was able to spend $100+ on other "needed" items, specifically some gardening items (although we lack a real garden); then to the German supermarket to return a mouldy fruit cake gifted to us at Xmas (I was given $14 refund which I spent at the Apple Peel Supermarket for a triple choc cheese cake which she preferred); then up to our usual mall for coffees, meds at the chemist and a little normal supermarket shopping at lunch time when few people with kids were about. I only bought a few items, just enough to fill a basket which she kept on her lap while seated in her wheel chair. I felt we accomplished something and she enjoyed the outing, an outing not to fill a medical appointment for once.

A shock last Tuesday at the physio KW (first consultation with her) to be told her left ankle was frozen, the AFO ordered in was useless for the condition of the ankle when KW found she was unable to bend the foot back to the proper 90 degree position; KW is quite an athletic lady and the strain on her face and the tendons in her hands and arms indicated the greatest possible effort was applied to the foot. Perhaps a custom built AFO and Botox may assist  (KW is checking with out-of-town professionals to that end, rang back at week's end that such an option may not be available). KW noticed that the right foot had signs of developing foot drop as well so is ordering an AFO for that leg. It seems the prognosis is bleak for the left foot. In the recent past I can remember physios and other experts noting that there were signs of "foot drop" together with dystonia in her left foot yet no one cautioned us about the implications of inaction, except for Dr M., the neurosurgeon who suggested an AFO and who I asked for an explanation of the term. Our local hospital OT, HL, has taken the opportunity to bring some small lifters to our place for demonstration, for, as he says, the long term when the Sara Stedy is no longer of any use if her right foot prevents her standing at all, if only for 30 seconds or so. Thoughtful of him, I suppose. He also suggested when the inevitable happens we will rely on the commode rather than the loo, so no bidet.

A strange but thorough consultation with a visiting geriatrician, Dr PW, the following afternoon.  Firstly, over 1/2 an hour data gathering session with the registrar (we'll be dead before all our information is in the cloud, stuff the security issues), then about 2 hours talking to Dr PW. I'm unsure what good came of it but I learned another thing; her weight loss, especially in her legs is probably due to muscle loss in her legs which are quite unused these days, except for shakes/tremors triggered by stress and emotions. I need to encourage her to use the pedal machine, since she lacks motivation  to do so.

On the night of 10th January I reduced the flow rate of the Duodopa pump down from 4.8 to 4.6 ml/hour hoping to reduce the excessive leg shaking she exhibits. I'm unsure of whether there is improvement but one of the care ladies from Wild Dog (who unusually has been here a number of mornings this week) commented that the leg shaking alternates good/bad from day-day.

Yesterday I ordered from Blog2Print Volume II of this saga beginning at Chapter 282 through to last week's Chapter 406 in a hard cover as well as a PDF version for digital archiving, all without proof reading and corrections. Instead of the Vol I dedication "To all those embarking on a similar voyage", this time I used "To all those who do not understand".

Chapter 406 - Return to the Grind

One morning I heard her tell a care lady from Wild Dog "We had my sister's daughter here ....."; as she paused puzzled I said "You mean our Grand Daughter dear". Lately her guttural humming happens only occasionally. One day, while sitting on the toilet, she said, as I was about to help her off, "My head is spinning, I'm moving backwards & forwards". This continued for quite awhile, she was too scared to be man handled back onto the wheel chair. Each morning she seems eager to show the care ladies her sewing efforts and I suspect some see the same object repeatedly.

I think I absent mindedly failed to take her to respite last Wednesday or perhaps it wasn't on, but yesterday my blood pressure was low, I felt light headed, not keen to drive the car but prepared to take her to Wild Dog. Anyway, her tummy was a little upset, so I had her ring to cancel.

A few days ago our brand new "Sara Stedy" transport machine was delivered and the poorer quality hired device was collected. We are both much happier with "Sara", better brakes, larger wheels, slightly wider (which she sees as a positive), more robust front leg spreading mechanism, and oh, 50% higher price. Although transfers by Sara from commode (after showering) to bed to dress, pulling up her trousers while standing on Sara, then to the wheel chair which is waiting with locked wheels near the kitchen happen like clockwork, later in the day she objects to Sara transfers from wheel chair to toilet, and especially when performing the number of tasks on going to bed, although I'm hopeful she is becoming more at ease with it, for I notice a lessening of my hip pain the more Sara is used.

She has me regularly cut the roses as they bloom (I had been doing so to bring flowers inside to her) and now she has decided, as the blooms fail after a few days, to trim the stems so that I can poke the pieces into the garden, hoping they will strike. Perhaps they will.

I completed reading our neighbour author's book "Dementia Does Hurt", a very practical book of advice by someone who's career was that of carer in a nursing home, and now has the same duties 24/7 in her own home. My tolerance for the minor challenges I face has improved for the reading.

Chapter 405 - Bright Beginnings

Our youngest Grand Daughter from Pivot City arrived on New Year's Day, staying two nights and the intervening day. What a fantastic way to begin the year! Here's hoping the year continues in the same manner. I was rejuvenated, definitely waffled too much and she experienced several good days. I look forward to more visits like that. We turned her sewing room into a temporary bedroom and spring cleaned the house as if royalty were visiting; well almost.

Yesterday, Tuesday, she seemed to suffer for the good weekend. Her leg shakings, which I notice are initiated by even mild stress, continued most of the day, especially the right leg. She had great difficulty making any sit-stand actions; at the physio session in the afternoon no exercising was done, I began using her slider board for transfers from wheel chair to toilet, becoming quite concerned by early bed-time about 2045. She seemed to have no "power" from her waist down. The transfers into and out of the car were almost impossible when we went to the physio.

Yet this morning she is quite bright, needed no prompting to stand up onto the transfer trolley, and began sewing after breakfast making new bags for her Duodopa pump because she finds the supplied bags uncomfortable. She made a trial version last week. Our lives are returning to normal; the kitchen table, these days where she sews, is being covered in pins, threads and fabric scraps. And I don't mind, for she is enjoying herself.

The bright pink rash, mostly on her right leg, that began during the hot days last week, has faded away.

She frequently complains of poor eyesight, unable to read easily or thread sewing needles. I'm unsure whether to take her to the optometrist or wait till next month for her checkup with the eye specialist.

Early in December I obtained a referral for her to see a visiting geriatrician. Not having been contacted about a consultation date I rang yesterday. A return call gave an appointment time on the 13th of this month. I hope a geriatrician may provide her with an overall assessment of her condition, a sort of project management function, but maybe I expect too much. A case in point is the comment by her neurosurgeon that she should investigate an AFO (Ankle Foot Ortho-"something") to control her "dropped" left foot which makes me wonder why the number of OT's and physios she has seen during the last few months at two hospitals failed to make the suggestion. A call this morning from a local physio (recommended by her podiatrist and referred by our GP) asked approval to order a $150 AFO in readiness for her appointment Tuesday next week.

During the hot days and nights last week she tended not to use the remote controlled fans I have mounted on the walls of several rooms, especially the bedroom. During winter the bedroom fan was operating for each of most nights, causing me to protest if she inadvertently allowed the fan to swing onto my bed. Now with warm nights she does not use the fan at all. Her body temperature control system seems to wired back to front!