Chapter 290 - Frogs and Other Things

One night last week I felt stupid reacting to what I thought was a serious case of hallucinations. About 2115 as I watched the conclusion of a TV programme, one of those moments when one hates being disturbed, she said from the kitchen table where she was sewing "There's a frog!" I grunted a reply, continued watching TV. Then some 15 minutes I was receptive to hearing her describe the "frog". Trying not to be dismissive, I checked in the dimness beside the cupboards where she pointed, fetched the dustpan and brush to remove some fluff (something our Sadie must have missed) without finding a "frog". So I went on with other activities. Some 15 minutes later she exclaimed "There it is!". And there it was , not far from her chair, a speckled greyish-brown frog about the size of a 20 cent piece, almost tame I thought, as I scooped it up in my hand to put on the garden bed at the front of the house. About an hour later I found another in the hallway to the garage and my dungeon. In the past we have found them in the house after wet weather. On this night in question there had been a heavy down-pour; this species of frog must not enjoy water. I must be careful to remember that some "hallucinations" are actually "real", although I have wondered where the small creature had hidden when I first looked for it.

To Hot Air City on Wednesday last for an appointment at the public hospital to see a neurologist specialising in movement disorders. After an extended interview and examination with his registrar, the most helpful neurologist we have ever encountered in almost 22 years came to speak to her. After observing her he made recommendations to replace several doses of the Sinemet CR 200/50 she takes each day with Sinemet 250/25 and to increase Sifrol by 1/4 mg but only in fortnightly steps for seven weeks until her next appointment in early June. Although the appointment timing was not planned to be so, it began about 1/2 an hour before her 2pm meds and continued for half an hour beyond, so the neurologist was able to observe her in an OFF state, perhaps transitioning to ON. He commented on the dyskinesia in her legs. I now understand that due to the quantity of Sinemet, both ordinary and CR, the carbidopa component in her system is high enough to cross the blood-brain barrier, which it shouldn't, thus causing side effects. We also asked about a replacement for Cenovis Magnesium that contains Vitamin B6 and Blackmores MagMin was suggested. Below is her schedule for last Friday when she began the new regime. That below continues for a fortnight before changes are made.

WEEK 1 Commencing Friday 19th April 2013
Friday 19th	Actual Time								ON approx	OFF approx
06:00		Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1
09:00							Vit C 2x500	Mag 500
10:00		Sin 250/25		Deralin 40
14:00		Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 0.25
18:00		Sin 100/25	Sin CR 200/50	Deralin 40	Comtan 200	Sifrol 1
22:00		Sin 100/25	Sin CR 200/50	Deralin 40		Sifrol 1
Panamax 500			Panadeine 500/8

I included two columns for her to record her ON and OFF times which I have assumed happened rather abruptly most of the time. In the past I have attempted to chart her state, either on a scale of 1-10 or simply ON and OFF. Always failure, always with a degree of debate about what is meant by 1-10 and ON and OFF. When she is able to move relatively easily and without pain there is no problem with describing an ON state. But when she has pain, some stiffness she is unable to say whether she is ON or OFF and lacks the ability to grade herself on a scale 1-10. The latter does not only apply to her ON state, but also to questionnaires, you know the sort of satisfaction surveys for health reasons or product marketing; at those times she tends to mark all answers as 10 or 0, saying she is unable to figure out how she feels about any given condition.

On Saturday morning I had decided to forget about attempting to chart her ON-OFF state when she reminded me that in the clinic she attended in Southern City they timed the patients rising from a chair, walk some 10 metres or so down a hallway then returning to the chair from which they began. This was done on the hour. So I found my stop watch and we worked out a route between our back and front doors, almost a straight line, a deviation around our kitchen table in the middle. She walks the route pushing her trolley, for safety reasons. The following chart shows the timings taken since Saturday, the route is too short to minimise starting & stopping errors on one hand and recording two decimal places is pointless but that's the reading straight off the stop watch (digital of course!). Some comments are made to highlight her state at various times. Note that at 1500 on the 20th she was unable to begin because she was too stiff and in too much pain to walk. At times she is walking quickly at the times she is due to take her next meds, suggesting to me that the timing and dosage rate of her meds are not synchronised (see above), although I suppose the ideal state is never to go OFF. And pain discourages her walking at a "normal" pace so long times don't necessarily mean she is OFF. She is quite happy to do these walking tests but I will discontinue them after today; maybe at the next change to her meds regime in a week and a bit.

		Hourly Time Trials
		Back door to front door return
20 Apr 13	11:00	30.56
	12:10	24.80
	13:15	34.57
	14:00	44.59
	15:00	nil	incapable, too much pain & stiffness to complete the course
	16:00	42.72	toes curling under, painful legs
	17:00	28.57
	18:00	28.44
	19:00	28.37
	20:00	28.75
	21:15	27.16
	22:00	45.91	out of breath
21 Apr 13	10:00	24.38
	11:00	27.31
	12:00	27.44
	13:15	32.57	beginning to step heavily
	14:05	42.50
	15:00	30.72
	16:00	27.10
	17:00	27.40
	18:00	54.00	unable to lift feet from floor & much pain
	19:00	28.94
	20:00	29.41
	21:00	26.31
	21:50	33.10	to bed
22 Apr 13	09:50	30.40	painful legs
	11:00	26.97

She continues to have her horror feelings of what I call "shudders" in her back, shoulders and head, plus the "things" running up and down in her legs. Most nights finds her awake reading or propping herself up on pillows (some six or more on, under or around her) between 3am and 5am; sometimes she wishes to hear the radio, other times not then i use an ear piece to help me return to sleep.

Our friendly Occupational Therapist came this morning accompanied by a mobility equipment supplier to demonstrate a better commode/shower chair which will ideally do the job except that it will not quite fit over the bidet fitted to her toilet, so we have decided to live with that until the day arrives when she needs to be wheeled over the toilet and then it will be a matter of taking her to the other bathroom.