Chapter 465 - I've Forgotten the Appropriate Title for This Post

We were driven to West Beer a few weeks ago. Following are the notes I gave to her neurologist.

Notes and Questions for Dr F 3 Aug 2017

1. Body Temperature: Her feet, legs or head may feel excessively hot to her. When checked with an ear thermometer her temperature is 35 – 36 C. By touch her legs & feet may feel hot but not her head. There is no sign of perspiration. A gel cooler at ambient relieves her feeling of a hot head when she is in bed. Can some of these temperature sensations be hallucinations?

2. Legs Bent: Recently I noticed that both of her legs are drawn up when she is in bed. It can be difficult to straighten either of them. Sometimes her legs cross at the ankles and are difficult to untangle. Several times I have noticed that her right foot is straightened rigidly as she wakens. Comments?

4. Duodopa: Her settings remain at 5.4ml/hr 0600 – 2200 (see question); 2.2 ml/hr 2200 – 0600, Morning Dose 8.0ml, bolus 2.0ml. Lately the flow rates are changed closer to 2100 when she is tending to fall asleep, rather than disturb her later. Should 2200 be the change over time or the onset of sleep?

5. Dyskinesia: Dyskinesia still occurs at mid-late afternoon or when she is stressed; eg when the Sara Stedy transporter is used, getting on and off the toilet, usually not when getting in and out of the car. Sometimes a bolus may help but usually not.

6. Bowel Actions: She continues to experience feelings of incomplete voiding at which time she passes small peanut sized stools. Recently several “accidents” happened while experiencing feelings of urgency when she was taking 1 Movicol sachet per day. The incontinence nurse at our Local Community health suggested the child sized Movicol rather than attempting to divide an adult sachet in half (which seemed to be insufficient for a good sized motion anyway). Dr I prescribed Normacol as being more suitable than Movicol. This morning, after 3 night doses of Normacol She passed a large firm stool, but within an hour she suffered what she described as intense “stomach gripes”. Since the grains of Normacol are a hazard for her to swallow, jam and malt extract have been tried without much success. In speaking with our chemist this morning, he agreed that Normacol is more suitable for her but indicated that stomach gripes will be a side effect. He suggested chocolate flavoured yoghurt may be better to help her swallow the Normacol grains. Comments?

7. PD Clinic: We heard of someone attending West Beer to be fitted for Duodopa because “West Beer were more experienced than Hot Air City”. I rang Hot Air City PD Clinic to be told the relevant nurse was away. So I sent a long email query without receiving a response. Only in regards to travel costs and stress would we prefer to visit Hot Air City than West Beer. I estimate our trip today will cost her Level 4 Package at least $600. Comments?

After scanning my notes, Dr F asked how much walking she does. The quick answer was "none". Off the top of my head I was unable to remember the date of the last time she walked using the brand new "Fore-arm Walker" from our kitchen to the back door (10 metres?), that's the time she fell backwards like a pole onto the floor, without hurting herself. I need to search through these blogs to determine whether that happened one or two years ago. He held her hands, asking her to stand; she stood awkwardly, bouncing like horse rider. Then he asked me to help her up again while he took images (video) on his phone. He asked that her Duodopa flow rate at night time be increased by 0.2 ml/hr every fortnight. He didn't think it mattered whether the night time rate began as she fell asleep or at 2200. I gathered that Hot Air City PD Clinic is not appropriate for Duodopa.

After some difficulties, taking Normacol each breakfast time in a cup of yoghurt has almost established regularity (as opposed to many urgent trips to the loo to pass pea nut sized lumps of poop. A Great Dane would be proud of what she has passed in the last week. There are no signs that any damage is caused by the size. Strangely, she is not always aware that she has passed anything at all. After I transport her off the loo, we both peer down the loo to inspect the results, reminding me of a parent giving positive feedback to a small child.

Since ceasing the use of Biotene toothpaste and mouth spray she has not been bothered by thick, "ropey" saliva.

I have noticed that each morning and night when in bed the overhead light bothers her eyes and our bedside lights, on long flexible stems, usually need to bent away to provide diffuse light. Also, she frequently needs sunglasses when out in the car. I will query our optometrist, when she has an eye check in a week or so, whether this is a glaucoma problem or perhaps a PD bradykinesia issue with the irises of her eyes.

Have I mentioned that our GP gave me a referral to see a local clinical psychologist? I have had 3 appointments with him so far. Being able to discuss matters with him has helped me reduce my occasional bouts of anger and frustration.

Also, after having a RAS assessment, I have been able to participate in a local formal Alzheimer/dementia group. There I met two people I already know, one with a PD inflicted husband. The other has a wife who needs craft magazines and such to pursue her hobbies, except she doesn't. I described to him our similar experiences. We were amused to discover we both visit the same news agency and coffee shop on a Sunday. A helpful bloke from CentreLink gave a presentation at the meeting; about the economics of residential aged care. The financial complexities are enormous. There is a calculator on the MyAgedCare site which provides an idea of the financial position we will be in one day, quite soon, although without taking into account some of the logical steps we will need to consider; such as which of us triggers the need to enter care. One important consideration is the possible need for a formal adviser, which of course costs dollars, since CentreLink is unable to give "advice", just information.

I have been granted a budget again this year by Hot Air City Carers group and a plan will be prepared to fund my respite hours on Wednesdays and Saturdays, and that will relieve her Level 4 budget, about which I understand we will receive a letter from Wild Dog's accounts people, although as far as I can tell, we have yet to exceed that budget.

A welcome visit last weekend from our eldest grand daughter Neddles and her better half. A very satisfying experience to get to know our adult grand children.

The Wild Dog carers who attend on my respite days have changed to some who show less interest in assisting her with sewing and knitting. So she spends most of her time cleaning the kitchen and bath rooms (and causing damage by scraping surfaces of "dirt") and re-filing books, magazines and CD's.

In a little while it will be time to go down the street to have lunch, dawdle around the usual shops, buy some craft magazines.