Chapter 291 - What We Call an Average Week These Days

She was very uncomfortable at Respite last Tuesday, having to leave a water colour class organised for the group, then from mid-afternoon needing to sit with her legs raised, all due to pain and the horrid tingling sensations in her legs. Then on Friday we had lunch with the friends around the corner to celebrate his birthday and shortly after 2pm she asked to go home. We had walked the couple of hundred metres or so, she pushing her walker and she was able to walk home again.

Last Friday morning I was wakened with a start about 7am to see her grabbing for tissues; there were patches of bright red on the sheet and the pillow case. Not like a couple of years ago when I had to take her to the hospital for her nose to be plugged; this time the bleeding stopped within, maybe, ten minutes. I suspect the bleeding was caused by her tendency recently to "snort" through her nose while asleep, quite loudly, as it is such noises, loud talking, occasional screams that wake me in the middle of the night. She often mentions a "lump" or a "thickness" in her throat and that causes her difficulty at times swallowing her meds. I talked her into sending an email to update Polly the PD Nurse, who replied suggesting a visit to our GP for a check-up. When she rang for an appointment our "official" GP was away and when he returns he is booked solid for ever. Fortunately, she was fitted into an appointment at 10am this morning with Doctor Flower, the new, and probably temporary doctor, we have seen several times before. We are more than pleased with her approach, asking lots of questions, providing information and advice, this morning speaking to us for well over half an hour and then only bulk billing us! Dr Flower thought it best for a blood test to ensure that the pains and tingling in the legs are not due to some "balance issues", took blood pressure and temperature readings, and heard no breathing or heart irregularities by stethoscope. I gave Dr Flower a copy of the 7 week spread sheet showing the meds changes before we visit Hot Air City (we had been asked to advise the local surgery of the changes in her meds, because although an official letter will be sent, the public system is guaranteed to take up to a month or more) I need to provide Dr Flower with the contact details for our new Caring Neuro so that she can forward the blood test results to him. We forget to ask all these doctors whether they are signed up to eHealth yet, for that would save a hell of a lot of trouble. After leaving the surgery we went straight around to pathology where she was immediately attended to, donating 5 vials of blood. To celebrate a successful morning we walked (she pushing her walker) to one of her favourite rag/junk shops where she bought a number of metres of cloth, then we had a light lunch at the club before coming home.

She and I have been attempting to recall her experiences with Comtan. Unfortunately I have been unable to find any notes (before my blogging) I may have made maybe ten years ago when the Peter Ustinoff neuro had her trial Comtan, as he sometimes did with a few meds pulled out of his cupboard. She vaguely remembers Comtan producing "funny feelings" in her head so he told her to discontinue with it. And she was taking Comtan as she was leaving the Clinic in the Southern City, a disastrous panic trip that was, then more recently the New Private Neuro in Hot Air City had her on Stalevo, that little package with a "Comtan like" component. In Chapter 199 25 July 2010 I noted that she had had Stalevo "some years ago ... which she stopped after having strange side effects, including tingling, creepy feeling in her scalp." On this occasion, our local GP prescribed the Stalevo, for I think this was the year that Sinemet was unavailable. She must have had a similar sensations because in Chapter 201 after she began replacing Stalevo with Modopar CR her scalp tingling reduced. By Chapter 261 on September 01, 2012 the neuro suggested replacing stalevo entirely with Sinemet, although I recorded no obvious reason for doing so, perhaps loose bowels, but this was also after a time of reducing and then increasing Deralin which had a large impact on her tremors. I'm afraid my blog notes are not very useful for tracking the changes for meds changes.

She woke me in the dark this morning, wanting to discuss whether she was on the correct dose of Comtan, something about a different bottle shape or size, maybe the chemist had given us the wrong dose size, I couldn't grasp what she was talking about, was she having a nightmare or was I? I sort of believe her when she says Comtan is bad for her. Yet I want to see her progress though this current 7 week period of controlled and gradual changes without deviation. We have lived through so many years of this a few more weeks hardly make a difference. Only 3 days, five weeks to go, counting. I am pleased I spread sheeted the process, she would be lost without it.

She continues to sew, I think some final work is to be done on the baby quilt, making padded and lacy coat hangers for the Sheltered Workshop on Tuesday. There was much unpicking and re-stitching with the quilt, to the extent that she thought she was losing her abilities. Also says she is losing her memory, yet I think her memory is better than mine, so she may be correct.

Interestingly, she has needed no help in the shower for what seems like a long time.

On one of the PD groups I saw a question from someone who has "red ants crawling inside his legs". When I told her she just said "I don't know about them being red."

There is a tentative invitation to a 21st birthday party way down south for which I must send an extra early apology.

I feel like crap. I can't imagine how she feels each day, in pain, tingles and shudders inside her legs, sometimes her head, freezing before during and after meds times, using the commode 3 to 6 times a night.

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.

Chapter 289 - Changes in Constancy

Meds have remained the same after she reduced the Comtan to two a day as below.


0600 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200, Sifrol 1
1000 Sinemet 100/25, Sinemet CR 200/50, Deralin 40
1400 Sinemet 100/25, Sinemet CR 200/50, Deralin 40
1800 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Comtan 200, Sifrol 1
2200 Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1


And being lazy, I went back to Chapter 287 to copy & paste the list, noticing that I had omitted "CR" so I edited that while there.

I vaguely remember the week beginning well, possibly because I have been sleeping more soundly, since she wrote in her little notebook (sometimes after I rouse on her she makes a few notes) on "10/4 Woke at 2am with aching legs & back needed to go to loo [she means the commode] took 2 Panamax at 3am & eventually went to sleep around 4am. [She has taken to reading Mills & Boon again] Woke at 5.30 - Loo & back & legs aching & P+N [pins and needles]. Took tabs (5) at 6.00 am & couldn't get back to sleep because of back ache. Sweats started at 10.00am".  Since then she has kept few notes.

Most of her days were spent making baby quilts and fancy coat hangers for the fete held yesterday by the centre she attends on Tuesdays, so there has been little embroidery stitching. She will now return to the quilt, pieces spread across the lounge room floor, since the recipient has now arrived, although she seems not to be in a panic to resume the assembly of the quilt squares. I can't recall a morning this past week where she has needed the shower/commode chair or any help with showering or dressing; almost sufficient reason not be needed as a carer!

She scared me on Thursday evening. Partway through a TV show I was watching she decided to go to bed. She must have been very tired because most times that is where she experiences most leg pain. When the programme finished I went into my sewing room to complete some stitching. Perhaps half an hour later I heard her call on the CB in my pocket. I found her sitting on the plastic shower chair in her bathroom, quiet, calm, unflustered. "How long have you been sitting here?" "About 3/4 of an hour" she replied. I felt numb. Apparently she had called me on the CB several times but because of the noise from either the TV or my embroidery machine I hadn't heard her. I asked her in future to leave the bathroom door open and scream. She continues to close the bathroom door most times when attempting a bowel motion. An automatic action we all do I suppose.

One morning, probably Friday, she needed to get up (pains in legs, uncomfortable) after taking her 6am meds yet was unable to walk so I wheeled her in the wheel chair out to the TV room then I returned to bed for several hours.

Yesterday, Saturday, she said she had had a bad night yet was able to shower herself then dress without help; I remained in bed. Yet when she needed to leave the bedroom about 0900 she asked to be wheeled out to the TV room. By 1100 she said she was tired; she looked so. I helped her lay down, but almost immediately she had to rise and go to the loo for a bowel motion. On returning to the bedroom she didn't want to lay down because "that's when my legs pain." I convinced her to take a Panedine  ("Polly doesn't like me taking pain killers" she said). By 1130 she was sound asleep sitting in her bedroom chair. I guided her into bed. Obviously I was not going to make it to the computer club so I rang my apologies; and we were still able to set up a Skype demo while I remained in my dungeon at home. She came to at 1355 just in time for her 1400 meds. By 1420 she was hungry; she wanted spaghetti on toast, so I microwaved the contents of one of the small tins kept in the cupboard for this whim.

Over a year ago I introduced her to Lumosity; my idea being that "game" brain training exercises may be good for her, as I'm sure that her finger and mental activities are most beneficial for her. Yet from the beginning she was unable to meet the challenge of Lumosity, was discouraged and only completed the exercises very intermittently (they send daily reminder notices), although whenever I asked she said "I last did Lumosity a few days ago." For whatever reason, the Lumosity subscription did not automatically renew, so when I asked her yesterday whether she wished me to pay for renewal she said no. In like manner, I don't often see her using the passive pedaling machine we recently bought. Although I am positive of the benefits of both Lumosity and the pedaling for her, there is little to be gained by haranguing her and raising stress levels.

So this morning I came to about 0530 to see her reading a Mills & Boon. Her legs were shaking under the bedclothes. After the 0600 meds she seemed restless and excited, she said it reminded her of the trip back from the  clinic in the southern City many years ago. Unable to return to sleep, I had a shower about 0700. When I returned to the bedroom, she was sitting on the bed, anxious for my return (I never have quick showers). "I need the loo!' she exclaimed. On my way to the shower I had pushed the commode out of the way ( at night we have her pill & water bottle laden trolley plus the wheeled commode parked between our two beds and a remotely controlled pedastal fan at the end of hers; a bedroom of hazards) beyond her reach and she was unable, partly due to the urgency, to reach it without accident. So I positioned the commode for her to slip sideways onto it. Then the wheel chair was needed to take her out to the TV room. I made her a piece of toast. About 0900 she took herself off for a shower and then dressed without needing help. Now at 1000 she is about to take meds and is organising things to stitch together the quilt for the new arrival.

In preparation for our visit to Hot Air City on Wednesday next, I downloaded and burnt to DVD a number of YouTube videos detailing apomorphine , or apokyn as some call it. I was in two minds about showing the material to her. Last evening I asked whether she wished to watch the several hours of videos; she did, and on completion only commented on a three part Pommy demo intended for nurses showing how to assemble the syringe and pump mechanism. I had to agree that the procedure looked unduly messy and complicated. Otherwise she was unmoved by watching the material. We both noticed, in a useful Yank marketing video, one patient who had a DBS also needing apomorphine.

She occasionally mentions the "shivering", "shudders" and the horrible feelings she has in her head, shoulders and back. I suspect she experiences such horrors a lot but no longer mentions them. From time to time she still needs a fan turned on in the TV room, her sewing room, the bedroom when she has the "sweats".

I suspect she has begun to avoid using the phone. On several occasions lately, people have rung and left messages while we have been out and I need to pester her to return the calls. One difficulty is that in holding a phone against her head she seems to bump buttons, disconnecting or silencing the calls. When she uses the handsets on the VOIP she is able to set them to speaker-phone, whereas our standard land line handsets lack that capability  something to remember when next replacing them.

Chapter 288 - From One day to the Next

I awoke bleary eyed about 0800 this morning. Large heap of pillows on her bed I thought was her. Then I heard a rustling from the lounge room. Her trolley, CB radio were still here in the bedroom, maybe she wasn't beneath the pillows on the bed, upside down as she often is. I rose, went to the lounge room; there she was, sitting on a lounge chair, leaning forward shifting squares for a quilt she is  rushing to make for a prospective niece. The pieces were arranged on the lounge room floor. Yesterday, to relieve her stress, I stitched 8 butterfly designs for her, and these she was arranging loosely. I stooped to help. Feel free to see this as conjugal bliss.

But to back up to Thursday. An uneventful day, as days go. Polly, PD nurse, rang to check her condition and suggested a Sinemet 100/25 should she need it in the dark hours of the night; also to add a Comtan at 1000 each day. That night at 2330 she called me on the CB to help her into bed; I found her standing beside the bed, looking slightly bewildered, I guided her onto the bed. From her own notes she took a Sinemet 100/25 at 0300 Friday, noting it had little effect and pain in her legs continued until she fell asleep. Later on Friday she remembered that her legs "went wild" about 0030 that morning. At 0600 she took her usual mix of Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1 & Comtan 200 then slept until 0800, telling me she had had a bad night. (Thursday she woke at 0930) She showered and dressed herself without needing the commode/shower chair. A "normal" Friday is when our Sadie comes, which means the beds are stripped for the sheets to be washed. I collected everything for the laundry, she put the lot through the washing machine, later I hung it all on the outside line to dry. She added a Comtan 200 to her usual Sinemet 100/25, Sinemet CR 200/50, Deralin 40 at 1000. When Sadie arrived to clean I popped down the street for some frozen finger food for our planned attendance at a small "concert" at our village hall late in the afternoon. A little after noon Sadie poked her head in the door of my dungeon saying "I think she may want you to ring the PD nurse." I didn't respond immediately, then she called me on the CB. She was sitting on the lounge, miserably. "Please ring Polly, I feel just as I did coming back from Southern City." A referral to either the saga she experienced after leaving the PD clinic down there years ago or a more recent return trip from the same city, both resulted in panic attacks and hospital visits. Before ringing Polly, I delayed by making notes, also I wanted Sadie to finish her cleaning for us to be alone. My observations: frequent licking of lips, frequently taking sips of water from a bottle, saying there was a large lump in her throat, panting, breathing noisily through her nose, unable to concentrate, seemed confused, when I asked whether she had unusual "feelings" in her genital area (as she had on the return trip from the clinic) she didn't answer looking confused.  As Sadie left I rang Polly's mobile, twice, due to braking-up at her end. Polly asked me to ring back in 5 minutes when she may be in the clear but she rang first. As the 1400 meds were due it was advised to drop the Comtan then and also at 1000 the next day (Saturday, today). I was asked to have her breathe deeply, suggesting her body was full of smoke, to be expelled. We did this as she began to look sleepy. I suggested she take her 2pm meds, she doubted she was able to swallow them. She said they could be broken. I had her sip water, then gave her the half pills, one half at a time. After a couple she was confused, having decided she had taken sufficient, so I had to encourage her to take the remainder, sipping between each. She began to nod off, decided she needed to eat something. I made her a piece of toast, took a mouthful then felt strange in the tummy. I helped her onto the loo at 1425, where she sat looking drugged, drooping forward until 1445. I helped her off the loo, she finished eating the toast, sitting quietly when at 1510 she wished to sleep so I helped her to bed. She woke at 1600, remained in bed with a slight headache. I took our finger food contribution over to the people organising the concert; they said "Things are running late, come along when she is awake." I doubted that. She dozed on & off till 1800 when the pill alarm went off for her to take Sinemet 100/25, Sinemet CR 200/50 Deralin 40 but no Comtan. There was no lump in the back of her throat, yet "things were walking up & down" her left leg, the back of her head was numb, as she limped into the loo. Then out to her TV chair with her head was "buzzing". She needed a couple of firm pillows beneath her feet, her legs ached especially from the knees down, generally feels awful, yawned a lot. At 1900 we each had a bowl of pasta then at 2130 she went to bed.

So today, Saturday,  at 0600 she began with Sinemet 100/25, Sinemet CR 200/50, Deralin 40, Sifrol 1, Comtan 200. At 1000 Sinemet 100/25, Sinemet CR 200/50, Deralin 40 which began kicking in about 1115 allowing her to begin some quilting work she brought home from Respite last Tuesday, needed for their sale stall next week. As I pointed out, she has no need to rush with the quilt for the prospective niece who is yet to see the light of day. I am always complaining about her inability to prioritise her work.

She fell on Monday last, needing to support herself heavily on the corner of her sewing machine table as she stood, popping the side door open, tangling herself in it & coming down on the right side of her bum, without hurt or bruise. Speaking of bums. She noticed in the junk mail that the super market I detest was selling incontinence pants, her size, for $3 discount per pack and also chair cushions that mold to the shape of one's bum; so on Wednesday we bought 9 packs of pants and 2 twin packs of cushions, three for the kitchen chairs she sits on at her two computers/sewing machine and the kitchen table (where she cuts out these days) and one left over for the kitchen chair in my dungeon. You may remember that we had found that office chairs gave us hip problems. I feel the benefit of the cushion.