Chapter 424 - "Why are your legs shaking?"

"Why are your legs shaking?" the little girl asked. She had crept around the edge of the divider between our table and that of her family's at the Club in the Highlands Town. We went there last Friday to have lunch with her sisters and co. "Can't you stop them?" the little girl asked again. "No" was the reply, the little girl left, not seen again. We didn't stay for sweets, the dyskinesia in both legs was just too much; so we decided to go home. I turned the Duodopa pump off before leaving, then on again after returning home 1 1/2 hours later. Her legs calmed during the drive home but began again once seated on the loo, then I changed the cassette and started the pump again.

Last Sunday night she woke me at 2300, she wide eyed, wild movements, hair wet and matted, cheeks flushed. I calmed her, straightened the bed clothes then turned on the wall fan, even though this is winter and no heating is on in the house.

The previous week began badly on Monday 13th when no one from Wild Dog had arrived by 0830 to shower and dress her; no one answered their "after hours" mobile phone number when I rang. Then at 0920 a response asked whether I still needed help! I thought since it's a public holiday on this Monday ..... But there was another "No Show" on Thursday evening 16th. Then last night, Saturday 25th, again no one arrived by 2030. I suspect my comments are becoming curter each time. I must be careful because should I blow a fuse she will be the one to suffer if I abuse the staff, not the providers of the service. I will look forward to seeing our June statement from Wild Dog because if credits are not shown for those three (so far) missed visits then my correspondence to their head office will also be copied to a government watch dog.

On Wednesday early polling was available for our national elections next Saturday around at Wild Dog during her respite period so we both voted. I was tempted to be irritated at the delays incurred  but we had intervened in what was really intended for the nursing home residents. I consoled myself that our country's voting procedures are saner than those conducted in cousins countries.

The respite staff weighed her again on that day; on May 18th she weighed 51.2 Kg, on June 22nd 55.4Kg so the appetite pills are having an effect. Our daughter suggested some brand name nutrient drinks so I spoke to our Chemist who recommended "Ensure" which I bought before asking the price; $45 or was it $48?

This coming Wednesday she attends her PD clinic at West Beer, for which I am taking regularly timed video clips of her calm morning and her stressful shaky afternoon. If today's clips plus the others I have taken since Dr F. instructed us to increase the pump rate look reasonably informative I will present them with a copy.  The government carer's support is funding Wild Dog to transport us to the clinic; round trip pick up at 0700 returning about 1500 will cost $981! I feel guilty that we are such a cost to the system.

She continues to make knitted lined bags for sale at Wild Dog at $20 each. The cash goes into the funds for catering for respite attendees we believe. Whether or not hardly matters since the activity is good for her, keeping her hands and mind active, giving her a sense of achievement when one of her creations sells. The knitted bags disappear  within an hour or so of being displayed on the respite "for sale" table.

Chapter 423 - A Laughing Matter

In the darkness of night I awoke to her laughing; quite loud, so merry, sounding so young. I hadn't heard her laugh like that in many years. I wish I could have enjoyed the amusement with her. Perhaps I was dreaming myself because I'm sure she began speaking very clearly about brick walls as I dozed off again. Some hours later while I connected the Duodopa pump for the day she pointed her right index finger at something unseen by me, chatted a little then returned to sleep. Usually when her voice wakens me her words are garbled, incomprehensible.

Several weeks ago before our daughter and grand daughter visited I heard her tell a lady from Wild Dog that her mother and sister were visiting us, the next day same scenario but her sister and her daughter. She has difficulty remembering the names of the Wild Dog care ladies yer at times she surprises me with details she is able to recall that I can't.

At each weekly visit, usually Thursdays, Physio A is pleased with her left foot but from my point of view her condition has not changed. Last Tuesday she completed a 6 metre walk across our timber floor pushing her fore arm walker with its brakes duct taped on, so to make it easier for her I untaped the brakes and had her walk again. This time however I had left her wheel chair behind and as I retrieved it she toppled backwards from a stationary position, landing on her bottom, banging her head on the floor, hurting a shoulder and the thumb on one hand. There was no serious harm so with the aid of a number of pillows I was able to raise her sufficiently to get her onto her recliner. No more walking since then. Physio A suggested sit-stands & walking on the spot supported by walker or frame, although she seems less able to do that at home than at physio,

Twice in the last week, one evening, one morning, Wild Dog failed to send anyone due to poor scheduling. We had minimal problems coping yet she becomes somewhat stressed waiting for care.

I subscribed to an online TV/Movie streaming outfit that provides little pleasant non-stressful entertainment. A lot of the crime etc material I would watch myself but it's completely unsuitable for her; complicated whodunnit plots she can't follow, murder and mayhem stresses her. The night before last I thought I found a light drama about a two-timing husband for her; within the first 30 minutes there were explicit shagging scenes which impacted her badly, to the extent she began to show symptoms of panic attack so I killed the B grade crap. Unless I can find suitable material I'll subscribe somewhere else.

She has taken to knitting square carry bags, with lining, for sale at Wild Dog. As soon as she takes one along on respite days it is sold almost immediately for $20. The money goes into the funds for morning teas and such, she gets none of it, even though she supplies the materials but we are unconcerned, since the creative activity is good for her.

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Chapter 422 - If I Only Had Time

I'm not keeping many notes these days, days which go too quickly to be remembered, or are too much of a muchness to be recorded, or maybe my memory, the machine, runs erratically. I jot what seems of import in our kitchen desk diary.

For instance, just after midnight the morning of 30th May she woke me "I'm burning up!", the bedroom fan was spinning, she was restless, arms & legs waving, wanted to get up. So I transferred her to the wheel chair in which she sat with her legs on the bed. I woke 3 hours later, she half asleep in the same position in the wheelchair. Minimal shaking so transferred her back into bed. She next woke when I attached the Duodopa pump at 0630 and returned to sleep while I tread milled and showered.

Last night much the same happened. Before the Wild Dog carer came to assist in her readiness for bed she sat quietly on the loo for at least 45 minutes, concerned that she was unable to pass a decent turd, "it's just stuck there!" even though she was passing small bits. I even had her use the pedal machine just in case the exercise helped; it didn't. After the pump was disconnected aroundt 2145 she was restless and alert. Her arms and legs were making large movements, much greater than when just shaking, her eyes were wide, staring, she was very hot, pink blotches on both cheeks. I went to sleep, dead tired. She woke me at 2300, bed clothes and pillows all over the place, arms and legs thrashing. She wanted to get out of bed; I demurred, tucked the bedclothes around her, twice before she settled. I awoke around 0230, without my CPAP mask on (damn!) but have no memory of her sleep state.

This morning I woke after 0600 to attach the Duodopa pump, she woke then dozed while the Morning Dose took effect and I tread-milled while watching a Great Courses lecture. By 0730 I had showered and dressed myself before transferring her to the loo on the Sara Stedy, then onto the commode and while waiting for Wild Dog care to arrive she attempted to tidy her bed clothes as she usually does while seated on the commode. I find doing so keeps her busy and is a form of exercise for her while I prepare breakfast. This morning  the Wild Dog carer (scheduled for 0745 approximately) had not arrived by 0830 so I rang the after hours mobile number (since today is a public holiday for the peasants to celebrate the birthday of the Monarch) where I left a message (no one answered) saying "no one had turned up", that I was proceeding to shower and dress her and that I expected not to be charged for today. Someone rang back at 0920 with an explanation, to which I responded there was a management problem.

Most morning I have her use the pedal machine while I exercise with Wii Fit's Hula Hoops because I have found doing so has relieved pains in my right hip caused by manual transfers prior to buying the Sara Stedy. That is then followed by having her try to lower her left heel onto my Beeper Board for 200 beeps, then having her push her Forearm Walker (with rear wheels locked) the length of our timber floor, about 6 metres. Push walker forward, step with right foot, step with left foot, straighten left leg, then push walker etc etc. Last week she was able to accomplish six lengths; today only two.

Her feet used to slip off the pedal machine whether or not the pedals were powered or passive, so I hot glue gunned a pair of her shoes onto the pedals. Worked well, except I had difficulty putting her feet into the shoes due to her tremors and rigidity of her left ankle. So yesterday I bought a pair of men's slippers with velcro fastenings, glued those to the pedals; a good solution to the problem.

Physio A down at the local hospital suggested obtaining a referral from our GP for her to go into Rehab for a week or two. That is being processed. Once a week she sees Physio A who is pleased with her progress, modifying the removable cast made for her left leg in an attempt to correct the foot drop.

See what I mean - the time is now 1207 and half the day is gone? If I only had time. Sinatra had the same problem.