Chapter 7 - Space

Tears in her eyes when I met her outside the church where she attends KYB meetings. She had phoned me while I was still at the Cottage "Can you come? I can't get out of the chair". By the time I arrived she was pushing her walker to the footpath. "Fortunately a woman and her daughter were able to assist me. The rest were too old with problems of their own to help me. The seats are those terrible plastic stackable things and we were seated in a circle around a coffee table - it was a barrier; and the chair lacked arms to support me to get up". The rest of us have no knowledge of the everyday circumstances that are terrifying for the disabled.

For quite sometime now she has avoided crowded places, a trend in her behavior. Ages since we last went to the movies or a theatre. When her mother was alive the two of them took much pleasure inspecting clothes at "Millers" outlets. No longer, especially the shop in our local town. "The clothes racks are too close together, too crowded for me". Even shopping at our re-furbished Coles supermarket with its wider isles is daunting. The other afternoon she was tempted to enter K-Mart but changed her mind because it was too crowded. Crowded restaurants are a nightmare; sardined customers seated on lightweight chairs at rickety tables are horror to her. We sometimes go to our local club at quiet times, although not often.

Last night about 21:00 she needed to walk. I procrastinated until the end of a programme about a local lad who had run foul of the "thought police" for associating with high level bad chaps in Afghanistan. She walked quite briskly on my arm for most of the circuit of the village, although by the time we returned to our front door she was dragging her feet a little. No where near as badly as she did after we entered the house though. She commented about it. Once in a confined space she shuffles. This was news to me. A development. We may re-arrange her sewing room for more open space. In the past few months she has done very little work on her embroidery machine. Perhaps a layout unlike a pilot's cockpit may encourage her.

A phone call after we returned home this morning from KYB "Were you having one of your attacks this morning? I saw you walking so well last night!" That's just the way it is, dear. Now you know a little of what the brave faces on the disabled can keep hidden from view.

Chapter 6 - Dressing for Church

We have just returned from church after a detour for meds from our local chemist. She needed to keep walking rather than sit down for the ten minutes or so that it takes to have those little labels attached to the packets & bottles. We bumped into friends so our time was put to good use.

After we arrived home she needed help to undress. Partly because her blouse adhered to her moist skin (she was sweating a lot) and she often has difficulty raising her feet enough to put on or take off slacks. For a number of mornings this last week she has needed assistance to dry herself after showering, unable to bend sufficiently without overbalancing to dry herself below the waist. For the upper regions she wears a towelling bath robe, I rub a towel over the rest. Back in the bedroom I sit on the side of my bed while she stands in front of me. I lift her feet one at a time to thread each in turn through her under-mentionables. Then to raise the clothing I find my face buried in her cleavage; if I blow a raspberry she laughs then admonishes me. How do women ever join the hooks on a bra? I find the task difficult even when looking at the things. And I usually attempt joining the clips before the pockets at the front are properly filled. Back down on the floor to thread her feet into her slacks. Pulling these up is not as much fun as the bra is in the way. The slacks always end up twisted, so I wriggle them until the wearer is satisfied.

These are the issues that cannot be mentioned when any of you ask "How is she today?" We are thankful she slept better last night but is that the answer you need when you are unaware that most of her previous night was spent sitting at the table reading, sometimes interrupted by vain attempts to get into bed and sleep? Much like describing the local weather to someone on the other side of the world.

I am concerned for her well-being while this afternoon I drive to a place to photograph some old farm sheds. Lately we have not been apart for very long. My common sense tells me we have friends close at hand and communications enough to raise an alarm.

Chapter 5 - A Bad Night

As light broke this morning we both shuffled down to the hall to our respective conveniences. I was banished long ago to the second bathroom because I dribble too much. And now she has a raised toilet seat permanently attached to hers to assist her rising from the throne, and even so, at times she can't make it off. Women always complain that men always leave the lid up; now she has to leave the lid up as the raised seat prevents it being lowered. Whenever visitors are expected I am detailed to "clean your toilet" - I suspect she enjoys directing me so which makes her comment to others "he doesn't do toilets" null & void now.

Anyway, back into bed, the small desk fan was on, blowing cool air across the beds. I simply rolled into bed as I suppose most people do, it's a skill no one takes much notice of. She paused then walked her knees across her bed then fell on her side as previously described. Some short time later I heard a noise so turned to see her standing beside her bed, slightly stooped, slightly tremoring. "What's wrong dear?" "I just can't figure out how to get back in". She had become uncomfortable so needed to rise to get back in, and now couldn't. In a drowsy state I watched for 10 or 20 seconds. She made no move to get in. Like a diver at the end of a diving board high above the water unable to commit to launching herself. I rose, had her reverse up to the edge of the bed, then seat herself, I lifted her legs, swung them onto the bed, then rotated & lowered her so that she was on her left side. She remains in that position, more than half an hour later, so I presume she is comfortable. She had told me that last night she suffered pains in her lower legs, not in her back or hips. Sharp pain where she injured her ankle in the fall. While I slept soundly last night, she repeatedly got in & out of bed until chamomile tea and Panedol gave her relief around 02:00. "Why didn't you wake me?" "I didn't like to" she replied.

As mentioned above, a small fan blows air across the beds during the night. This is to alleviate hot flushes she has, even though the nights are comfortably cool at this time of the year. During daytime she usually sits near a pedestal fan to cool her sweating face which she frequently mops with tissues. At times her upper body is quite warm to the touch. Just another symptom. Our small air conditioner in the lounge room does not cool the remainder of the living area well enough to help her, or perhaps air flow from the fan is better.

A few days ago a very good friend of mine offered me a bottle of red Burgundy, genuine French, Bouchard Aine & Fils, Nuits St Georges, 1971 that he had been keeping for a time not meant to be, a sad & personal story I musn't reveal. To his horror when he turned his bottles, an act he performs quarterly, in his wine rack (although this man has not imbibed during some 20 years or more) he detected that this special bottle was leaking. Although he thought the wine probably unpalatable, he could not bring himself to pour it down the sink. So he offered it to me to taste. To my cretin taste the wine was quite acceptable. So my friend left me to consume it as soon as possible. I sealed the bottle and invited two other friends around the following evening for a wine and cheese binge. Over the course of 4 hours we feasted on wine, cheese and fruit and a few good stories. And remembered my friend who no longer drinks. All this time we sat at our dining table on hard wooden chairs. The point of this story is how she was able to rise from the table without pushing herself up by her arms as she usually does, even after forgetting to take her evening meds. Then we walked around the village. Simply amazing, yet since then she has not been very comfortable, although able to walk the village each evening quite well.

Technically good news - I read the Blogger help file to discover that I needed to allow pop-ups from the Blogger site for spell checking to work. So a few errors in this particular post have been corrected but several doubtfuls remain just because I like the look of them. And we all know that the Cousins are unable to spell proper anyway.

Chapter 4 - A Simple Task

I shouted at her yesterday, she says. I thought I spoke sternly, forcefully. She was having difficulty copying files from a CD into another folder on her laptop. Comprehending a hierarchy of folders seems difficult for her and not made easier for her by a proprietary embroidery application display designed to make it easier for users to locate designs. This is a recurring problem for her. She seems to be concentrating more on filing designs than stitching these days. She tells others that once I "go" she will have to give up using a computer because she will have no one to call on for help. I need to ease her from such dependence, haven't succeeded in all these years though.

Last night she watched an ABC programme about aged care. I caught something about an 86 year old being digitally raped, but, being busy with other things, I did not watch it. I don't think "digitally" referred to high technology either. She is concerned this morning that if ever she ended in an institution she would suffer, unable to lay comfortably in bed. "Nursing staff can't attend to anyone often enough to be able to help me in bed" she says.

Getting in & out of bed is no great problem is it? This is how she does it. She stands on the left side of the bed. The other side of the bed is too close to the window to provide her sufficient personal space. She faces the side of the bed. "Why don't you get into bed?" after she stands motionless for some 30 seconds (a long time in the middle of a simple action). "I'm thinking about how to do it" she says. Then she very slowly lifts her left knee onto the edge of the bed, hands now in the centre. Some seconds later her right leg is raised. She is now on hands & knees facing across the bed. Very carefully she moves each knee a few inches, scared that she may fall off the other side (we have king-sized singles; were all kings large?). Then she gently topples sideways onto her left shoulder & if she has gauged her position correctly, her head will be on the pillow. Her legs are a different matter. While in a horizontal position, her legs are immobilised. They tend to remain glued together, unable to flex or stretch. With the aid of a bed pole on the left hand side of the bed or a monkey bar & chain above (definitely not for erotic positioning) she may be able to remove twisted feelings in her trunk. Her left arm is often jammed beneath her. Should I be awake & present, I may be needed to rotate either her shoulders or hips slightly to untwist her. On a good night she may exit & enter bed several times & often the activity inspires a trip to the loo as well. Sometimes she has me pull downwards on her legs, or push her bottom more centrally onto the bed. She fears falling out. Sometimes fears she is too close to the edge when from where I stand she is in the very centre of the bed - a slight push one way or the other dispels the feeling. Thus she spends much of her time in bed on her left side which results in hip & back pain. This morning she wished to be on her right side to relieve hip pain. After rotating her from left to right side she decided she was too twisted. The only solution is to get out of bed & start again. I went to have breakfast. When I returned asking whether she was comfortable, "No, I'll try laying on my back". After some pushing & shoving she was in position, with her knees raised. "Put you knees down". "If I do pain shoots down my right leg". I left her to check my email & write this. I just went to check on her - her bed was made (that means I must pull mine into shape today). I found her in the back room sorting chemist prescriptions. "I couldn't get comfortable. I got out & in again. I couldn't get un-twisted. It was hopeless". She came out to our document shredder to dispose of some old cash register dockets, still with the ABC programme on her mind. "No wonder they drug people in those hostels. How could nursing staff provide enough attention to make me comfortable? When I was in hospital (in the maternity section for lack of space elsewhere) with my inured foot the nurses were great but they were not able to come every time I became uncomfortable!" Thanks ABC - your reality reporting has raised fears before we need them - a case of piddling before our water comes.

Yesterday, down at the Cottage, I watched her inter-act with the "clients". So easy, smiling, happy & involved in small talk with all & sundry. I envy her.

By the way, if you are interested in reading about my earlier "Progression", have a look at

http://24july2005.blogspot.com/

for a description of our recent bad past.

Remember that these blogs are reverse time order; last-in-first-out (LIFO) , which to me makes it devilish difficult to read postings in order of oldest to newest, so in this new blog I give each posting a chapter number.

Chapter 3 - One Sunday Morning

There are several reasons for scribbling this blog; friends & neighbours ask "How is she today?" to which I usually reply - better today - having a poor day - sleeping this afternoon - and the like without beginning a long rambling explanation for which I lack the verbal skills. Also the text provides ourselves with a picture of how things are because we so easily forget, even though ever since she came out of the southern clinic we keep daily notes of her meds & brief notes of pertinent events in small spiral-backed note books (the type that easily fits in the shirt pocket should I not wear T-shirts). We are now well into our 3rd notebook. But those notes, apart from our codes for the meds, are sometimes cryptic & hard to read. And every so often I enter the meds data into a spread sheet where any changes can be easily seen, such as knowing when she has been in pain by the number of pain killers taken (very few these recent days). I see people cringe at all this! I have found writing a descriptive diary like this blog forces me to make a better job of it rather than compiling private notes. One plays to an invisible audience. Is there one out there?

We have noticed a change in her behaviour following each Bowen treatment. At first she felt physically worn out immediately afterwards & during the following day, not that there was any pain, but just as if she had had a lot of exercise. More recently she needs to sleep following the treatment. This last Friday she rose about 9:00 & by 11:00 she was so tired she returned to bed to sleep till 12:30. Then again at 15:45 more sleep until I woke her at 17:00 for dinner in order for her main meal to be well clear of her evening meds.

Yesterday we drove north to be at our youngest grand-daughter's 5th birthday party. We stayed 4 hours then returned home. I don't think she slept , as she usually does when we drive somewhere, at all during either 2 hour trip. On the return trip, we pulled into a rest stop just short of one of the service centres because she expressed a need to stretch her legs. Thankfully, she lacked the horror signs shown on other trips when she was over-medicated. I parked well clear of gum trees because a storm was breaking & a few spits of rain discouraged me from jumping the barbed wire fence to grab a few apples from very old trees on an old house site. Anyway, she would have become up-tight about my daring to steal.

She says she slept well last night although a sharp back pain halfway down her spine required some rubbing at 7:30. Then she showered & returned to bed after taking her meds. I am to wake her by 9:00 so we can make church by 9:30. A special programme begins this week, "40 Days of Purpose", in which she is keen to participate. Me? Well, not so keen on another packaged process seen by some as a way to get people to come to church when the aim should be to get those already in there out & about in the world.

Time to wake her & for myself to put a few clothes over the little I have on.

Chapter 2 - A Few Days Later

I really don't know why I'm up at this hour of the morning. The clock on the monitor desktop shows 03:43. I woke about an hour ago after staggering off to bed at maybe 22:00 last night (actually this night as it's very dark outside still). She called me once on the CB radio ( we carry a small handheld CB so she can call me should there be difficulties) to say "Have you gone to bed?" and I muffled through my CPAP mask "I said I was" so I have no idea how easily she managed to position herself in bed. She was breathing noisily when I rose at 02:30 for a short walk down the hall and then for the next hour while I attempted to sleep again. So having switched on the CB's again (we leave them on the charger cradle each night) I came out to my dungeon to search for information on a "Jackaroo" BBQ we placed on lay-by at Kmart yesterday. She has been making suggestions that we need a new one which could be plumbed into the town gas supply to the house. Unfortunately Kmart have them on special at the moment. So I was interested to find the company's web site to seek information about the burner jets. But the company seems to lack this very necessary marketing tool - should we really wish to buy their products? I may have to rely on telephonic communications.

Did I mention that in the past week she noticed toe curling symptoms? I'm too lazy to check what I wrote. Yesterday we called around to Margaret's for another Bowen session. Bowen is really improving her physical condition as she no longer feels a build-up in her movement problems as her fortnightly visit approaches, and that I see as a good sign. We mentioned the toe curling. I had already searched for info about this so we were not surprised when Margaret suggested rolling a ball under each foot. The surprise was that Margaret reached to a shoe box on top of her book case to retrieve a pre-loved tennis ball, from a collection kept for such purposes & donated by her tennis coaching gardener. It seems such exercise is beneficial for a number of foot problems. So last evening before I staggered off to bed early (withdrawal symptoms on my part because a storm had encouraged me to shut down our systems) I frequently asked whether her toes were curling. They weren't, because as she told me after a number or queries, "I have my shoes on". How can useful experiments be conducted when the parameters are changed? So I sat in front of her to remove her shoes. A short time later I needed bed, so I have no idea whether toe curling occured and whether the tennis ball was used. She says the toe curling happens about an hour & a half after taking Sinemet, which almost suggests she experiences dystonia due to over-medication, like in the horror days of a few months ago. But now she is taking a much lower dose. This is illogical.

The night before last I prepared our meal at 17:00 just in time to watch my daily dose of Yank politics on the "News Hour" (rather than synchronising at 18:30 with the SBS news) in an attempt to move her Sinemet meds well away from her evening's protein intake. At 19:00 we went up to our village hall where a small group of quilters gather every Wednesday fortnight. She remembered her meds an hour late at 20:30 thus providing plenty of separation! Since yesterday morning was a good one, although she slowed down considerably during the afternoon while visiting that all-intrusive Big Brother department we expect to regularly dispense some tax payers' contributions to us & while shopping for the BBQ, we repeated the timing of food intake & meds last night. Yet to find out how well she was able to get into bed. When we resolve the bed/sleeping problems we will know that progress has been made. She is making comments that after 12 hours or so without meds overnight her walking & general movements are good although she slows & stiffens as the day goes on - I would expect the Sinemet to improve matters during the day.

On the return trip from downtown yesterday she had intended to visit our next-door neighbour in hospital but lacked the energy to do so.

I will now return to bed - yawn. And the sodding spell checker remains dead - I must read the help file.

Chapter 1 - Another Beginning

She woke at 7:45, twelve hours after her last meds (1x Sinemet CR 200/50 & 1x Deralin 40) in which time she only needed to rise once at 5:30. A marked change from the night before when she repeatedly had to get in & out of bed because she was unable to make herself comfortable; however in the early hours she was able to walk around the house easily for quite a time in an attempt to tire herself.

She called me out to my "dungeon" (where I am now typing this) to demonstrate how, this morning, she is able to enter, turn & then walk out of the room. Big deal you say. Well, yesterday she came to the corners of the desks then made her exit by taking very small shuffling steps, without lifting her feet from the carpet, in reverse without being able to turn to see behind. She was scared then. Of course you need to appreciate that my "dungeon" is an area of 3x3 metres, populated with two largish desks meeting at right angles , the adjacent corners of which are 100mm apart. Close enough to do a short bloke like me a serious injury if he doesn't stand on tippy-toes as he queezes through. Fair enough, a tight squeeze and too much equipment in here, however an average person complains about the lack of space & quickly escapes.

People tell us & items in this great library-in-the-sky tell us that Parkinson patients must live day to day. There is no way to predict how their symptoms will exhibit from hour to hour, day to day. And this does seem to be the case. Although I suspect that is because of our ignorance of the impact of events & circumstances the patient experiences each living moment. There are just too many interacting variables for us to note & remember to determine how each impacts the symptoms. Many years ago I taught a problem solving course, which at that time was managements' attempt at fixing all their problems; a major premise of the course was that when investigating a fault condition in equipment (or organisation) one must identify & pay particular attention to "changes" made to either the equipment itself or its environment in order to determine the cause of the problem. And many of these "changes" are found to be introduced by human intervention.

She started us on a high protein diet last week. On the diet I'm only supposed to have at most three 100ml glasses of red each week but I compromise by only having half a glass each evening. Now protein upsets the absorption of Sinemet into the blood stream so patients are advised to have meds well clear of meal times. This is difficult now that she only takes three doses each day. Last evening I, the cook, brought forward our meal to 17:00 when I had to be cruel & wake her for she was catching up on sleep. She had her Sinemet CR two & a half hours later, although she complained that "kick in" had not happened by three hours later. So was this the change that impacted her "good" night last night? More observations will tell.

We try to walk around our village each evening, usually between 22:00 & 23:00. A couple of nights ago we stopped near the hall to chat to another moonlight wanderer. After a few minutes mosquitoes discovered us so we hurried home. Application of anti-itch cream & cooling gel together with rubbing alleviated her itching, burning feet & hands, but it took about an hour. Perhaps this "change" induced her very bad night mentioned above?

A few days ago she mentioned that her toes had begun to "curl", one of those known, painful Parkinson problems although she had not experienced it before. It seems the symptom may be either a Parkinsonian symptom or one induced by medication. Now in her case one would say that medication could not be the cause since hers has been reduced appreciably over the previous months. On the other hand, her toe curling, which affects both feet, begins an hour or two after taking Sinemet and seems to stop about the time she is "on". Yes, these days her "on" times are short & "off" times are very long but she prefers that to the horrors of over-medication she experienced a few months ago. This new symptom concerns us because it causes balance problems & what must be avoided is another fall.

About walking. Our village neighbours note whether she walks around the street with the aid of her walker, hanging onto my arm or without support. Some comment that she is getting better when she is walking un-aided; then are surprised that on the following day she needs the walker. Sometimes she is too stiff & shaky to bother walking at all.

Many months after her last visit to Emergency when she saw Dr R. she was able to have an appointment with him. He was the one that flatly stated that she was over-medicated & should gradually reduce medications over a period of months. And that is what she has been doing. Over an hour with him. While Dr R. physically examined her he noticed that the nails on her big toes needed attention (she had delayed returning to the chiropodist). Some of you will remember reading earlier gruesome details about her toe-nails. This doctor believes in treating the whole person. Without ado, after taking a blood test etc, he whipped out clippers and trimmed her nails, smoothed them & rubbed lotion into her toes. I really didn't mind paying $116 for the visit although I was pleased to receive a discount of $16 because we are old timers with the appropriate card.

Some weeks ago she had a call from Mary, the physiotheripist associated with a research project at a university down south. Mary was studying the impact of exercise on Parkinson patients. She was examined by Mary while in the clinic last August and there was a promise of a follow-up examination some months later here at home. We had assumed that would not happen because of the distance involved and because we have not attended any video conference consultations since the over-medication problems resulting in Emergency visits to our local hospital. Mary flew to the national capital on a Friday then drove to our place the following morning where she arrived at 07:00. No meds had been taken before Mary put her through "sheep dog" trials on our patio. Timed walking of 10 metres & return, sitting, standing, ability to use eating implements, ability to get in & out of bed. After meds & kick in of same the tests were repeated. Mary left at 11:00. Over the next few days & nights the patient had very disturbed sleep, calling out loudly enough to wake me even over the noise of my CPAP machine, was up & down repeatedly for the toilet, aches in legs, sensations of floating, once there was writhing of her legs reminiscent of the horror days. By the following Wednesday my notes indicate she had returned to "normal" if there is such a state.

We have the convenience of a Bowen practioner, Margaret, just around the corner from our village. Since last November she has been attending once a fortnight to gain relief from back & leg pain. After each visit she feels as if "kicked by a horse" but without pain, which gradually returns as days go by. Her relief makes life more tolerable.

About the same time she began the regular Bowen treatment I on-line ordered a bucket of anti-oxident vitamins for her. She takes them twice a day; B1, B6, C, E, Folic Acid, Grape Seed Oil, Co Q10 & Omega 3. These cost more than food! She will trial these for about 6 months. Alternative health advocates swear by them to alleviate Parkinson symptoms. Of course, how will we know & in particular which one/s will she need to continue to take, if it all? This is the hard part of identifying which "change" made which impact to the collection of symptoms.

Today is overcast & cool. She is emptying the kitchen cupboards of items I don't use for my cooking exploits (I don't need much) so once I learn the new places in which items will now be hidden perhaps I will not need to complain about all the plastic junk falling on top of me or the difficulty of removing a large saucepan when there are half a dozen smaller ones jammed inside.
When I checked on her she was sitting on a chair, sweating like a pig (do they actually sweat alot?) with rubbish all around her. The sweat gushes out of her whether active or not - just another symptom which if she was able to get rid of would improve her quality of life. I opened the front & rear doors. "That's better" she said as a draft went through the house.