Chapter 426 - Only Way Ahead is Down

Now isn't that a tell-tale title? And I've been postponing writing here because it's just too hard, too depressing. As someone said on the phone on Friday, whenever we of a similar age talk these days we only speak about our current medications, our upcoming appointments, our current defects.

She was in the local hospital Rehab unit from Monday 4th July to Friday 22 July for physio work and training in transfers. They wanted her to stay over the weekend to be discharged on the Monday after a round table meeting to discuss her progress but we did not agree, as the extra two days would be of little benefit to her, she was bored with hospital routine and another two days of being home alone was negligible respite for me. I visited at least once, often twice, each day for clothes to be washed, take a few chocolates, tomato sauce on one occasion (to help her swallowing, she wished to avoid being served pulpy meals), reading material, her game tablet (although I think she only used it once) and knitting items.

At least once, perhaps several times, the staff failed to initiate the Duodopa Morning Dose and I suspect the reduction in daily intake tended to reduce her dyskinesias in the afternoon. Once back home we have run the pump as intended and by week's end and the dyskinesias are beginning earlier. I am now experimenting, leaving the pump off from about 0800 when she showers till about 1000.

Fortunately, J from West Beer PD Clinic emailed very detailed instructions for starting the pump, shutting it down during showers and evening shutdowns for the Rehab staff, who may have considered this a training exercise with official instructions rather than brief instructions from a layman.

We had hoped she would be trained (cope) to transfer to and from the loo or bed when she was dyskinetic. However the staff always took her to the gym of a morning but only of an afternoon if her shakes were minimal and when they worsened the exercising period was abbreviated.

I have noticed that since Rehab she pushes rather then pulls with her arms during transfers, although her arms and shoulders remain painful.

Before she entered Rehab she had been knitting lined carry bags. The first couple turned out well and were sold at Wild Dog. But after that she became dissatisfied with her work, taking hours to unpick it, chopping and joining pieces of wool, making a great mess. The materials were taken to Rehab without making any progress with another bag. Since returning to Wild Dog respite she has been decorating coat hanger covers knitted for small children's coat hangers. We roamed the shops last week for wooden coat hangers which I intended to cut to side; unable to find such out-of-date items, I had her buy brightly coloured child-sized plastic ones on which I cut the horizontal bar, she threads the knitted cover onto it before I glue it back together with a hot glue gun. I fear the range of hand crafts she can accomplish is diminishing. She has great trouble threading needles due to poor eye sight. On Thursday week she has a checkup with her eye specialist.

The toothpaste I buy for her is too "hot" and drys her mouth even though several types have been tried. At least 15 years ago her first Hot Air City neurologist had her use a type of eye drop for dry mouth problems; that concerned our chemist at that time. In the years since, speech therapists, dietitians, GP's and PD nurses and neurologists have offered advice about her problem yet none have ever mentioned tooth paste. Last week one of the Wild Dog carers assisting her to bed, which includes teeth cleaning, on hearing our comments about her tooth paste difficulties said "Have you tried Biotene?" On the side of the tooth paste tube are the words "gentle care for dry mouth". I bought a tube, not cheaply priced, and she finds the product effective.

The Duodopa pump remains set at 5.1 mL/hr; I am following instructions maintaining that rate until advised otherwise, but I haven't had any check up phone calls supposed to occur weekly/fortnightly yet since the last clinic. And shutting the pump off for a period each morning is only following instructions (from months ago) to shut off the pump when dyskinesias begin but that seems ineffective once she goes beyond the trigger point of her legs becoming tight and heavy, so I'm only being proactive by not starting the pump for an hour or so after her morning shower.

Since attending clinics at West Beer is a stressful, costly (to the tax payer) and time consuming exercise, I queried the PD Clinic at Hot Air City only to learn they don't support Duodopa treatment, although they are happy for her to attend their clinics for conventional treatments.

Also at the last West Beer Clinic it was suggested that the script for Duopa be reduced by half since only one cassette is used each day because at 5.1 ml/hr plus the morning dose just, but only just, lasts the 16 hours from 0600 and 2200 and 16 hours is the daily usage spec for each cassette. I will have our GP write a new script for next month.

Chapter 425 - When Experts Tell Me ......

To West Beer PD Clinic on Wednesday 29th when we were consulted by two neuros unseen before. I was unsure which was the senior; for one asked questions while the other remained quiet.  The usual range of questions. Of course her legs and feet exhibited few signs of dyskinesia, she appeared well medicated. I showed the communicative neuro an abstract paper "Apomorphine and Diphasic Dyskinesia" by Duril F. et al I had printed out way back when she was still on Apomorphine; he skimmed it and reacted as if he was familiar with the problem of a PD patient being reasonably stable of a morning then deteriorating with increased dyskinesias in the afternoon. No one at West Beer has seen her transition between these states, the clinics are always in the morning when her legs are reasonable; appointments to Dr F. are always in the afternoon when her legs are bad. Although discouraged from showing video clips, this time I came prepared with a USB stick with clips throughout the days of  24 Mar (flow rate 4.2), 21 April (4.8), 26 June (5.2). Interestingly, to me at least, is the fact that on 21 April her feet barely trembled at 1615 the time of the last clip I took that day. Perhaps the neuro did not look at that clip during the Clinic session; he made no comment about it and it slipped my mind to mention it. In looking at my diary I see no comments about changes or difficulties that occurred on that particular day, if I could figure out why life would be so much better. I think she gave them the impression that she suffered serious hallucinations by recounting when I used a step ladder to assure her that there were no spiders on the top of the bedroom window drapes. I just searched this blog for a reference to spiders; I made reference to that incident in Chapter 110, Tuesday November 13 2007 when she was taking a heap of pills. Hardly relevant today in her current condition! And that was way back before Apomorphine. Neuro Dr H then came into the room and directed the Duodopa flow rate be reduced gradually by 0.1 mL per week or so even though we had been increasing the rate at Dr F's direction. They set the pump to 5.1 mL/hour. They also object to my idea of running the pump overnight which I suspect may be better that transitioning to Sinemet every night. When I asked why, hallucinations and dyskinesia were mentioned. Do we really know what we are doing? Nurse J replaced the PEG fittings and inspected the stoma. I was asked to run only one cassette from 0600 to 2200 each day. On the way out she had to complete a psychological type of survey.

We missed a phone call on Friday 1st July from the local hospital Rehab for her to be admitted on the coming Monday. Thinking they wanted to only discuss her admission I rang on Monday (no one could tell me anything about the matter over the weekend) to find they were serious; so much rushing about to gather items for her to take. She took little interest in the matter; she is fearful I will take her to an institution and leave her there. She concentrated on pulling apart destroying an excellent knitted back completed a few days ago but in attempting to correct a small defect she had wrecked it so over a period of days pulled it undone and chopped parts undone with scissors.

The Rehab staff settled her in quite well. She was admitted with her current medications and a medication list which was ignored. Monday night they lacked a luer fitting to connect the syringe to the PEG fittings to flush the tubes. On Tuesday I made the comment that I thought such fittings would be normal hospital equipment. Fortunately, on Monday Nurse J of West Beer rang in response to an email I had sent her about the admission and she emailed me sheets of instructions for starting the pump at 0600, stopping the pump for showers and stopping the pump at 2200, much more detailed than anything I could provide. I told the staff that she must have Movicol and the appetite medication.

She is being exercised twice each day, dyskinesias permitting on afternoons. They seem unconcerned about her wearing the cast on her left leg.

I have spent an hour or two at the hospital each day, except yesterday I quickly visited, leaving clean clothes and 7 cassettes of Duodopa, because I have been sneezing quite often all day. Today is much better, so I suspect my problem is the form of hay fever I get at this time of year.