Chapter 338 - Nowhere Very Much

In the gloom of 5am last Monday morning I peered across toward her bed; noted that her overnight catheter bag appeared empty; thought "She will need to be taken to hospital if she has not produced 500-1000ml of urine over night"; then noticed a circular dark patch beneath the bag then thought "Damn, I must have forgotten to close the tap!!". Late Sunday night I had replaced the overnight bag as a matter of routine to avoid bacterial problems. The overnight bag sits on the floor mounted upon a blue plastic stand, its long hose plugged into her leg bag. But no, the tap on the bottom of the bag was closed and I found a leak in the plastic welding at the bottom edge of the bag; which almost made me feel relieved (no pun intended) until I soaked up the urine with paper towelling, and after running out of that, toilet roll paper. Then some spray on carpet cleaner. I should've gone looking for a carpet cleaning machine. We once had a small steam cleaner but gave it away. Moral: Never give anything away; hoard instead. The overnight bag and stand now sit in a plastic box.

That same morning the woman scheduled to arrive at 8am failed to arrive until 8.35am by which time I had completed the shower duties, she having patiently sat in the nude on the shower chair for 15 minutes. When the woman arrived she said she slept through the alarm. Fair enough, happens to anyone occasionally. However what she wrote in the daily report sheet was that because of our catheter bag leak I had given her a shower "early". So I wrote a few words indicating the woman's arrival and departure times and when I had given my PWP a shower. Each morning a different woman comes to shower and one of them must have read my note, reporting it to their supervisor who rang and visited at 8am on a morning later in the week. I pointed out to the supervisor that had the woman written that she had been just plain late I would not have written any comments at all.

Tuesday was Respite as usual.

Physio J. returned on Wednesday to bind her left foot in an attempt to ease the discomfort and foot "turning". Mildly successful for a few days until the top of her foot became slightly itchy several days later, so I removed the bandaging, replacing it the following day. I think I bound to tightly because by day's end her foot was uncomfortable.

On Thursday physio A. brought out a podiatrist to inspect the errant foot and clip toe nails. There was much discussion about the foot; decision to obtain some sort of fabric brace to prevent the ankle rolling over. Whenever I massage the foot with lotion or adjust the bandaging I note that she experiences pain, even though I attempt to be careful.  Later the RN arrived to give her a check-up. There is consensus that her leg bag should be filling more rapidly, rather than not requiring emptying until afternoon each day; she needs to drink more fluid each morning; she doesn't. I learnt something - laying in bed at night tends to force fluid retained in the legs back into the blood stream, causing the kidneys to produce more urine; although her legs do not show signs of excessive swelling during the day.

The Uglies and the good husbands visited on Friday. We had an enjoyable day with a BBQ lunch.

This morning she had me inspecting her bed and the carpet beneath. Part of the skirt around her adjustable bed gave her the illusion that the carpet was coming adrift from along the skirting board. The bed was hollow in the middle and sloped to one side; a length of timber and a spirit level showed that she was correct so I reversed and rotated her mattress, hoping that doing so (the slope is barely detectable now) will remove this bother for her, at least foe awhile. I am surprised that she is so sensitive to levels in her environment, both actual physical gradients as well as perceptions by eye.

Even though she is no longer rising up to 6 times each night, she wakes around 2-3am for a "tide-her-over Sinemet" and again at 6am for her first daily dose of meds. Although she doesn't wake me, I must be disturbed enough to wake around the same times then have difficulty returning to sleep, trying various techniques to induce sleep, yet thoughts tumbling around in my head discourage sleep. My only satisfying sleep inducer is reading a book and that of course is not recommended, as in the book "Night School" which I had great expectations about from a review I heard on the radio and ordered from the UK at great expense. I probably know a lot more about sleep now yet my days are growing wearier and more irritable. So far sleep deprivation has only minor impact on my Lumosity scoring; should my BPI figure decline quickly I will be very worried.

Her stomach bloatedness tends to persist. I give her a "Yakut" as often as I remember. Frequent mugs of warm water help her ease the discomfort. In like manner, the catheter, although resolving the need to rise so often during the night, is a discomfort to her and as yet there is no solution to that.

Chapter 337 - On a Sunny Sunday Morning

Last Sunday I was intent upon taking video clips of the dyskinesias in her feet and legs. But I gave up. She was feeling just too awful. Minimal shaking yet her stomach was in revolt, causing her to retch repeatedly. She had pains, making her think she had diarrhoea, with her head tingling at the same time. At 9.15am I found her on the loo where she remained for an hour, yet had no sign of the "trots". I helped her back to her recliner. She looked whoozy and sleepy. I left her with the large plastic bowl but she never vomited. At 11am she was retching again, felt hot, wanted the sliding door opened for cool air. She had no lunch. At 3pm I found her in the laundry sorting clothes to take her mind off how awful she felt. She had a bread roll lightly spread with margarine for an evening meal. The urine in her leg bag was of a light colour and required frequent emptying by early evening. She was in bed by 8.30pm.

Monday saw a milder repetition of the day before. I encouraged her to do some Wii stepping which did not last long before her left leg tingled, then some passive pedalling. Late in the afternoon to Dr I, our new GP, who wondered whether her recent courses of antibiotics for UTI may be the cause of her stomach problems. He gave her a referral to a urologist  up the 4 lane and an appointment has been made for a few weeks time; to discuss her UTI problems, nocturia and a possible supra-pubic catheter as a replacement for the normal type she now uses.

Much the same on Tuesday, almost not going to Respite. She had slept soundly, missing her 2am optional Sinemet. Possibly in consequence at 8.45 she was feeling dippy with a tingling head, which continued with a squeamish stomach even before a breakfast of toast, then on the loo for just wind. She made a call to Batman City where a Kinetigraph Data Logger was being prepared for her to wear to monitor her PD "shakes" 24x7; this has been arranged through Dr M the neurologist. By 9.40 her sick stomach "felt different". More wind on the loo at 10.20am before I took her to Respite, a little late. She seemed to have a reasonable day; yet at 8.45pm as she lay down in bed there was a pain below her ribs on the LHS. When I emptied her leg bag at 9.30pm I realised to 300ml was all she had passed all day. "Walking Over Grave" feelings a little later.

Her legs were aching on Wednesday so no compression stockings for the day; in the afternoon she commented that her toes were tingling. The RN visited mid afternoon. Her urine quantities were OK today; 600ml at 0715, 300ml at 1345, 300ml at 1655 and 300ml at 2115.

Her 2am Sinemet was missed on Thursday; perhaps in consequence she needed assistance to sit on the wheeled shower chair, although I think her 6am meds would have masked any lack of meds so much earlier. Her stomach problems are easing.A driver  (courtesy the TACP scheme) came at 10am to take us to an appointment to see Dr M. in Hot Air City. After giving her a usual PD physical he decided against a nerve conduction test planned for this visit. He advised immediately cancelling her afternoon 0.5mg Sifrol, then her morning 0.5 Sifrol in 2 weeks. Home again by 2.30pm I found the Kinetigraph waiting in our letter box. It was attached to her right wrist as instructed, no difficulties have been experienced so far except for the first acknowledgement button press, light flash and buzzing at her 10pm meds. And the device has not been worn into the shower, although almost one morning! On the way home we called at Hot Air Hospital to collect a second Apomine pump as an emergency spare, although I am preparing each pump for use on alternate days. So now I can prepare a pump and its syringe ahead of time then swap pumps with minimal changeover time, since I attach the prepared full one before removing the attached depleted pump; of course I switch one off before starting the other. Anyway, J the Physio arrived later that afternoon and we began showing her how she (my PWP) was able to do some Wii stepping; well for a few steps before her left leg gave was, an, fortunately we caught her before she fell; strange, she shook violently (in fear I suppose) as we grabbed her. No more stepping on the Wii. Physio J inspected her left ankle, noting how the foot turns inward and causes her ankle to tilt outwards; suggests binding the ankle may provide some stress relief  on the muscles in the left leg which have become quite sore to finger pressure. She was asleep prior to her 10pm meds, waking after much yelling, kicking, throwing off bed clothes and told me we were all chasing a mouse in her dream.

Friday another day of the above.

Saturday a repeat although her stomach problems may be lessening.

So these days our daily routine begins with disconnecting her overnight catheter bag from the leg bag; placing the Apo pump into its case before sealing the join with adhesive tape then mounting it on an elastic belt around her middle; I prepare breakfast once the TACP lady arrives to shower her (after removal of the kinetigraph from her wrist); leg bag emptying from time to time; sometimes transporting her in the wheelchair between her revolutionary chairs, her recliner and the loo; preparing Apomine pump and swapping pumps after 10pm. When we get the chance she sews items for the "Sheltered Workshop" to sell; I attempt to be creative with my 3D printer; a day of Respite; minimal shopping; regular visits by shower helpers, RNs, physios, social worker plus others. For lunch lately we feast on spuds boiled in their jackets in the microwave, then sliced in two before covering with grated cheese, sour cream plus salsa or pickles; evening meals are often those "healthy" frozen delicacies although I grill fish at least once a week and often chops, snags or supermarket cooked chook. Not much TV, many books (at least for me). Somewhere in the middle of this we still enjoy life a little.

Her current schedule:

Chapter 336 - A Brighter Day

One of those crisping days in early autumn, a day wished to enjoy for a lifetime, sunny and enlivening. I woke near 3am for my usual nightly excursion, possibly disturbed by her taking her middle of the night Sinemet, thinking I won't be able to return to sleep so counting my breaths - odd numbers breathing in and evens breathing out. Quite positive that sleep escaped me again but on next looking at the T-hub I saw 0550. She woke about 0615 as I was setting up the video camera; problems with finding a compatible  SD card then I began taking video of her lying in bed, expecting her feet to be thrashing. They weren't. Used her bed side clock she takes everywhere on her trolley in place of voice-over or later added time stamps, for today's Cecil B. production I intend send to Polly the World Wide Wonder PD nurse who recently queried whether her shaking had reduced. Damned stupid question I thought at the time; if anything leg shakes were more popular than ever!

Doesn't seem that way this morning, so far an occasional odd leg shake, some un-intended finger movements, otherwise calmness. She even seems to be rising from seated positions and shuffling about the house better than recently observed. Just now, 0915, I went to check on her to take another video clip to find her on the loo. Some minutes earlier after drinking grape juice laced with Metamucil, two crumpets covered in margarine and malt extract followed by a cold chai latte (the way she likes it made  straight from the foil tubular packet with milk) she developed stomach pains, taking herself to the loo. Her head had been tingling and she felt as if she was about to be sick. Acknowledging that decorum must be observed I refrain from videoing as she sits there in quiet contemplation.

No more catheter replacements!! Last night I replaced  her leg bag as well as the overnight bag to avoid infection.  I had an accident a few mornings ago; Overnight the leg bag drains into the over night beg which I empty each morning well before the shower helper arrives; except that morning I forgot to close the tap at the bottom of the leg bag, sometime later I noticed a wet patch on the carpet :-( Some carpet cleaning spray, some mopping and I like to think the signs have gone, now that a hair drier has been directed across the area involved. Although this morning she speaks about opening windows to freshen the room.

She coughs more often than I like while she eats. On one occasion I went to check on her during a bout of coughing and she said she had not been eating but had just "swallowed phlegm" the wrong way. Hard edges on her toasted breakfast crumpets "tickle" her throat, inducing coughing, so the crumpets are now warm rather than toasted.

She has decided that if she must use a catheter then the supra-pubic type will be preferable, to tomorrow we have an appointment with the doctor (we have changed clinics to another, seeing a very good GP of sub-continent origins) for tomorrow to obtain a referral to an appropriate specialist. Also she needs another script for Motilium, which she has reverted to taking two three times each day because she no longer calls for a large bowl because the biliousness following the last Apomine increase seems to have passed, her present  situation perched on the loo not withstanding, and she remains there at 0950 with what seems to be mild diarrhoea (aaah, isn't a spell checker a fantastic tool?). She has asked for a pair of incontinent pants to put on to guard against mishaps, but I discourage that because I believe such things are perfect breeding grounds for bacteria, and do you know what? there have been no signs of UTI since the last catheter change Thursday before last after which she has worn conventional briefs (suitable for a little old lady of course, no G strings!!) so I prefer her to avoid the padded things.

I have become very concerned that her lack of ability to stand up and walk is indicative of a soon-to-be phase of immobility in a wheel chair and bead-riddeness. The wheelchair has been needed more often to get her to and from the loo, the kitchen table where she mostly sews (continues to make lined bags for sale around at Respite).

She is visited once or twice each week by physios cordinated by TACP. Noticing their behaviour as well as others in the past, there is a hesitation on their part to assist this Parky Patient with exercise when she is "off", not moving very well. I think this is a mistake; granted, exercise to strengthen muscles tone when the patient is able to move reasonably well BUT movement training when OFF encourages brain plasticity to develop other neural pathways to compensate for the loss of normal motor ones. I think this is why LSVT BIG helped her until she ceased practising it.

She had her 10am meds then left the loo at 1015, standing and walking more easily than usual, even though she still has tummy bad feelings, now sits in her recliner, nursing the large bowl in case she is sick. I gave her a mug of warm water. She watched news commentary on TV. I took another video clip, minor movement in her left foot.

Chapter 335 - Where Are We Two Headed?

I subscribe to both the CARE and PARKINSN listservers although of late I very rarely read any of the messages; some are too close to home, some suggest where we are going. A little too depressing and perhaps to be avoided. Perhaps I am too with my scribbles here? A rhetorical question because I do not seek answers.

Intending to write a lot yesterday, Sunday, I became bogged down searching for pleasant music to play for her from a laptop through her TV. And other things, as someone once sang "If I only had time".

I needed to give Polly our PD nurse an update and ask a question by email this morning so here the messages are suitably edited.

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[She] had another catheter replacement on Thursday 3rd March, the 4th catheter beginning with the initial insertion on 6th March in Re-hab. This last due to UTI/bladder; lots of sediment and dark colour, some spots of blood. The nurse at District Nursing that did this last recommended more anti-biotics so we had the script provided by Re-hab for Clamoxyl Duo Forte 875/125 twice a day so had that filled (except I just checked, counted, to discover someone has been only taking one per day!). The same nurse said there were signs of thrush, recommending the appropriate cream from the chemist plus a tablet. When I consulted with our very helpful chemist he advised against the particular pill because it had complications for many other medications so only the cream has been applied. Today, Sunday, the colour in [Her] leg bag is reasonable.  She complains that the catheter is uncomfortable at times when she is seated, and I think this may occur in the time leading up to needing a bowel movement.

On Saturday I needed to visit the doctor again (in recent weeks my ears have been clogged, clear now) so [She] saw him as well, to discuss the existing catheter and the possibility of a supra-pubic catheter. He was prepared to refer [Her] for the latter but since she is a bit hesitant about that he prescribed Ditropan 1/2 tablet twice a day to see how she reacts to it. [She] took Ditropan from circa 1997 and benefited from it at the time (she was taking PD meds while doing so), and ceasing Ditropan after she had a successful operation on her bladder in [Sunny Western City] in 2000.

I had the Ditropan script filled before [She] remembered that Dr D at Re-hab discussed Ditropan with [Neuro] who recommended against Ditropan, so thus [She] had a catheter inserted.

[She] has not begun taking the Ditropan.

Dr Google indicates problems taking Ditropan and PD meds.

Please confirm that [Neuro] advises against [Her] taking Ditropan.

[She] comments very little about tingling and burning in her legs and feet, often finds her hands too sluggish to sew, and I suspect her thought processes are very slow at similar times. I doubt she is able to walk 20 metres or so using a walker without sensing that her left leg/foot is failing her. Once or twice she commented that her right foot is developing the same symptom. T, the [Aged Care] bloke, offered to take [Her] for the catheter replacement last Thursday mid-afternoon but we were unable to get her into his vehicle so had to resort to using ours. Each time she goes to the loo for poo she needs assistance on and off, sometimes having to remain there longer until I am able to help her onto the wheel chair. She frequently needs the wheel chair to get to the loo and back again anyway.

This morning she decided she was capable of going to the loo on her own; an anguished call on the CB indicated other wise, I rescued her standing, holding for grim death onto the fireman's pole with one hand the other holding her pants halfway down.

In helping her off the loo the other day I dropped my CB radio into the bowl and without thinking I quickly grabbed it then washed it off in the hand basin. On this occasion after drying the CB worked, not like last time when another CB died an early death.

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Thanks for the reply. Ditropan will remain in the cupboard in its bottle; [She] hasn't taken any.

I just went out to see how [She] was after her breakfast. She was attempting to to attach her catheter bag to her right leg which was shaking vigorously for her, mildly in the left; an hour & a bit before her 10am meds. On the whole I think dyskinesias have eased. I just asked her how her shakes were going and she said "Some days are good, some aren't."

What I have noticed is the lack of comments from her about leg/foot tingles and burning sensations. Perhaps fewer comments about her left foot "turning in" and cramping.

Of great concern to me though is her inability to stand readily from a chair or the loo. She is unable to walk very far (with walker or trolley) without her left leg beginning to "give way" and she has made several comments that her right foot/leg is beginning to feel the same way. At least once a day I need to take her to the loo in the wheel chair because of her leg problems. As she attempts to stand her legs don't straighten to support her weight. So then it's a matter of breaking all OT rules, linking arms and slowly pulling/swivelling her into/out of the wheel chair. She wants to independently get to the loo and back; I really fear a serious fall.

Recently she has been using her bowels twice a day, and sometimes she goes to the loo to get rid of bloated/flatulent feelings. Just now she is sitting in her recliner suggesting the current bout of shakes is causing her to feel bloated. Shortly I expect her to wish to go to the loo "just in case". This morning she had a poop at 6.30am, earlier than usual, so I didn't give her Metamusil in her fruit juice this morning, although that may not be a good idea either, because often she sits on the loo for maybe half an hour waiting for a "pebble" to pass. Usually the stools are well formed but fragmented.

Urine colour is good and is not showing any signs of sediment since the catheter was replaced last Thursday. Unfortunately, [She] was only taking one antibiotic until Saturday, rather than the two prescribed per day. As usual, little enters the leg bag until lunch time.

The catheter fitted on Thursday occasionally causes her discomfort when she is seated but that may be only when she has a full colon. Pam is drinking plenty of water and her urine is staying clear.

She just called for assistance to the loo; she pushed her trolley there, a lot of wind during 15 minutes.

Phone reviews? Hey, let's be 21st Century and talk your bureaucrats into using Skype ;-))

Now 10am.

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Yes the left foot turning/pointing inwards is probably dystonia, it is there whether or not there is dyskinesia, but the loss of tension in the left leg is another matter altogether, usually happening after she has walked at least a few metres.

Probably the inability to rise from chair or loo is freezing; her lower half is as responsive as a sack of spuds.

I stand corrected; I just queried what [She] meant by "it's happening in my right foot now" and she means the slow twisting/inward pointing dystonia. Her right leg is not failing her (a relief to me).

OK I'll keep the Metamusil up to her. She seems unable to let off a pleasurable fart without fearing she will mess herself and then stays longer than necessary on the loo just to make sure. I don't think she ever strains, even when I query "how much longer?" and she says "there feels like something there". Although the expulsion of a catheter complete with still inflated balloon suggests otherwise, but that may be female plumbing. I have never seen her red-in-the-face when I poke my head in the doorway to check on her.

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If I checked my notes I can write more but 'nuff is enough; except to say she has been wearing compression stockings since someone suggested them over a week ago. Expensive they maybe but I still laddered one with a thumbnail. Today she chose not to wear them because she dislikes the tightness, sometimes she mentions mild aching and has always requested them removed by late afternoon.