Chapter 21 - A Night to Celebrate

Last bight she dispensed with all the pillows I used to prop her into an almost sitting position in bed the night before, after settling comfortably. She had suddenly realised that she was tipping toward the window side of the bed. She wasn't from where I stood. But at 12:30am I wasn't arguing. My theory has been that she needs to sleep on her back as much as possible to apply balanced forces on her lower spine & hips; since she spends too much time laying on one hip or the other, usually the right, while unable to reposition herself during the night. For example, should her feet protrude from beneath the sheets she is unable to draw them in again. I think they protrude when her legs sometimes strain into an extended & rigid position. Most of yesterday she had the sensation that she was losing her balance, although at times she was able to walk well, especially with the MP3 player. We almost failed to attend the fortnightly quilting group at our village hall because of her balance feelings but at 7pm she felt reasonable so we went.

Anyway, returning to last night. She was asleep on her right side before 1am. The only time she woke was at 6:20am, almost half an hour late for her meds. As far as I can tell from my notes, last night was the first time since late February that she has slept without interruption of any sort!!!!! I went back to sleep and when I rose at 8:30am she was having breakfast. And while I was in the shower she was nimble enough to don a dressing gown to answer the door and accept the delivery of a large box of anti-oxidant pills (we are spending more on these than food lately). Then she returned to bed where she remains sound asleep at 10:30am.

A ray of sunshine. We are thankful.

Chapter 20 - Days Gone By

I woke in panic this morning, hearing her cry out. Had she fallen? No, in the dim light I saw her form in her bed; dreams can sound so real.

As I look back a few days in our little note book I see a pattern at night - bed around midnight, then up at 1:30am, 3am, 5am, sometimes an extra trip to the toilet, sometimes she sits in the lounge or the back room for an hour or so, sometimes reads, sometimes restless needing to shuffle about. She regularly takes an hour or so of sleep each afternoon, although such pleasure can upset nightly slumbers.

Saturday after rising around 11:30am she was able to accomplish most activities without assistance. Without prompting from me she decided to take an extra Sinemet CR dose at midnight to aid her through each night, so now her meds are spaced every six hours and we continue to space our meals well clear so that medication absorption is not impaired by protein intake.

Sunday was a good day with a puzzling end to it. In the morning she surprised me by showering & dressing for church without any assistance at all. After church I had a "stall" at the mission fair where I showed a Power Point Presentation (how else does one do these things?) from my laptop & extra monitor so she sat in the truck patiently because her meds were due. Around 3pm we went shopping, noticed that the ladies hair salon was almost empty of customers so she boldly entered & had her hair trimmed. The hair dresser talked 90-to-the-dozen so I wondered how she ever grew a large basket ball shaped stomach. Early evening we popped next door to have some papers witnessed, a bit of a chat & and an obligatory red. Then about 11:30pm she appeared at the door of my dungeon to say that "I feel as if nothing is working", she was a little glassy-eyed, a bit "dippy". She said her balance was OK. I feared a repetition of the hallucinations & memory loss she experience at the clinic down south. We went to bed to go through what has become our normal routine.

On Monday she was able to shower but called for assistance to dry & dress. Even so by mid morning she was in reasonable condition to spend an hour or so down at the Cottage. We have a copy of John Coleman's book - "he says playing loud music helps a PD patient walk better." So I rummaged in my junk cupboard to find the portable CD player (the one returned by the cops over on the West Coast after some sod had pinched it by smashing a side window of the car while parked in a motel basement carpark). I thought "marching music!" so found something containing bagpipes I thought may be appropriate. Ear-pieces in her ears, she pranced up & down the back patio until a track of an Irish jig became too much for her. Comments about 4-4 time & the like confused me. A CD of Gospel music was a little more suitable. I perambulated behind for some dozen circuits about the patio until she tired of it. She told me that evening that the muscles in her upper left arm are painful; have been that way for a few days, although did not warrant comments each time I had asked about any pain.

Today, Tuesday, off to KYB while I went to the Cottage. Then to KMart to find a cheap MP3 player to replace the CD fossil which cost some $300 a few years ago. Expecting to pay about $100, I was studying the specs on the sides of boxes when she said "What's wrong with that Batman one for $39.95?" Nothing at that price. It displays the Batman logo (the one that I am unable to perceive as anything more than a mouth wide open displaying those epiglotis [spell checker failed me here] things) on the case. Never played with these gadgets before so once back home the new toy was quickly filled with the Gospel CD tracks (note that this is a back-up copy only) for her to use while walking the patio for almost an hour while I read a book.

Life becomes monotonous but you have no need to read this, you know?

Chapter 19 - Down

Tonight the plot of the final episode of my currently favourite "who-done-it" was reaching its climax as she said "I'm feeling very slow. I'm going too bed." At 9:30pm that is early for her. Torn between asking her to wait 5 minutes & rushing, I hurried her to bed. She stands on a little shelf a friend made me for other things so that she is able to kneel further into the bed, tumbled down on her right side, I rotated her hips into position, eased her right shoulder, pulled up the quilt and back to the TV. She called just as the titles rolled up the screen. Her toes protruded from beneath the sheet & over the side of the bed. "Can you push my feet in?" As I did so I tickled the sole of her left foot, she giggled. Back in the kitchen to clean up when she called a few minutes later. I found her attempting to reverse off the bed. "What's wrong?" "I can't get comfortable - I need to lay on my left side." So through the gymnastics again. I puffed up her feather pillow into a ball beneath her head. "Oh, that's nice" she murmured. She sleeps.

Puzzling, isn't it? She is able to maintain her balance, walk or shuffle at varying pace yet when she lays in bed the lower half of her body seems paralysed. Somehow, her legs had moved her feet over the edge of the bed, she was able to detect that her feet were uncovered yet was unable to draw her feet back. And she responded to my tickling. She sometimes says that her legs are "stuck" together, that to move one both must.

Wednesday just an average day. Our group met in the afternoon, she was comfortable.

By Thursday her lower back became painful again, but without the leg pains. We had decided to move her med times as far as possible from her meal times, so meds at 6am, 12 noon & 6pm when she takes 1 Sinemet CR 200/50 1 Inderal (Deralin) 40, and meals about 2 hours later. This is quite low compared with what she was on when she had those horrible panic attacks and although she is afraid of inducing those horror times I feel she will need to increase her dosage, perhaps with another late at night which may help her through the night. Many PD sufferers take much more. She tends to suffer bad tremors about an hour after meds (peak dose dyskinesia) and also as the medication wears off, about an 1 - 2 hours before taking her next dose. But this is far from consistent; especially in the afternoon when there may be no relief at all. She experiences an increasing restlessness somewhat pacified by a walk around the village. That will be uncomfortable as the weather turns colder. Anyway, her regular Bowen therapy was at 11am and that relieved her problems considerably. In the afternoon she slept for an hour & a half. Toilet help was needed each visit. After a late evening meal her tremors eased. She said she had not sweated nearly as much today. Friends emailed they would visit on Friday after lunch; we suggested they come for lunch. She looked forward to that.

Last night only one trip down the hall. Waking at 5am she was uncomfortable & restless so sat in the lounge recliner, at 6am there were no tremors or pain although she needed to move. By 9:15 the tremors were bad, a dull ache in her lower back, she feels miserable and distressed. She asked me to ring to cancel our friends' visit. After a shower she was unable to dry herself. Restlessness continued then after her midday meds bed called. She slept, woken by the door bell a little later then dozed off again to wake 2 hours later. Two hours before her 6pm meds the tremors returned. And so back to the top of this chapter, somewhat depressed.

Chapter 18 - Weirdness in the Early Hours

After rising late morning yesterday she could "feel" her hips but there was no pain there. Her appointment to see the local caring physician at 2:45pm was delayed on advice at 2:15pm when she rang. "One with him now, two waiting; come at 3:30pm". We did so & still waited about an hour. Another eager patient made a false start by rushing in before us out of turn, only to be herded out of the surgery by a staff member. The poor coot had probably been waiting before we had arrived, so thought he was next in queue. The doctor was interrupted by several phone calls while he was attending to us, so we left about 5:45pm. He gives value with his time. I was disappointed with our visit however, presenting a 14 point list of her present state, only to be advised to keep things going as they are. And where is that toward I might ask? I had intended to give him a printed copy of this blog, chickened, then she mentioned it, I said "No, not now" and he pointed out that blogging was not confidential. Tell me about it. Without the aid of the NSA & some of our local chaps the ordinary citizen (dumb user) would have difficulty determining our personal details from this blog. I am confident of that.

A call from a dear friend thanking her for a birthday card. She remembers these things; I don't. To bed without settling well by 11:30pm so up to sit outside a half hour later. I woke at 1:30am to help her into bed. She called me at 3:30am for assistance to the toilet. Stiff, shaky & unsure of herself we did our shuffle dance, me in the lady's position backwards, into the bathroom. "Hold me" as I pulled up her nighty & she attempted to pull down her undies - I was, my arms were around her, she felt unstable. She felt the need of a tranquiliser, a Kalma, a pill she tries to avoid unless she feels panic. She had "Loosened up" a lot by 4:15 when another dance to the toilet was required. Again at 6am. She wonders whether she is dehydrating from so many visits. I point out that when dehydrated the body does not piddle at all (I think that's correct) & she is taking plenty of fluids from the XP bottle Bill Gate's minions gave me years ago. There must be a new version of that bottle due for release soon. We had laid her down wind on her bed to rest her right side. Within a half hour she called "I'm falling backwards". I looked, she remained centrally on her bed. "How about I lay behind you & hold you?" so I snuggled in on the window side of her bed. OK for a little while until "I have to sit up, I'm falling." Sitting on the side of the bed, she tilts to her left. "Sit up straight & relax." "I can't - I'm trying not to fall that way" she indicates her right side. I release my arms from around her. She slowly tilts to the left. I lay her down on her left side, she is comfortable but feels she has to force herself to remain in that position. She must think she will float away. I remember having such sensations after one too many glasses of red. By now 7am I think it best she has her meds; that disturbs her, she must sit up and that on the recliner in the lounge room. A time there until she must draw her legs up which causes the recliner to not be so. So back to bed doing our shuffle dance. "Be careful today, nothing must happen to you, I can't get by without your help" she says. I feel that too, and it makes me afraid that someone is physically dependent upon me. I must avoid the luxury of even laying in bed with the 'flu - which reminds me, the doctor gave her the injection yesterday, so the prescription from the GP is not needed. I will return to the GP for my "free" prescription (I am now in that age bracket) although the visit will not be.

She sleeps soundly, even through our doorbell barking (yes it "barks", none of your jingoistic or sentimental clapcrap for us) as a delivery lady delivered the last of her entitlement of incontinence pants. There was a moratorium on the supply until we re-established our middling poverty rating with our friends at CentreLink. You may not believe this, on the whole they are caring & considerate people.

Almost forgot. As she dozed off, she noted that the dull headache (a secret she kept from me) she has had for a couple of days has now gone. I remember her experiencing similar with some types of medication; those bumps ("olives" do they call them?) on the back of her head is where she has the ache.

I just discovered that the spell-checker on Blogger does not recognise "blog" or "blogging". Is that an over-sight?

Chapter 17 - Relief

Office hours Tuesday morning and she sleeps soundly.

Where was I? I am confusing myself with this journal. About 1am Sunday morning, uncomfortable, pains in both her legs when lying down in bed, she decided to sit out the rest of the night in one of our reclining lounge chairs, with the foot rest up but not with the back down because she has trouble maintaining the chair in an unfolded condition, so she says. Several toilet visits with assistance. A stiff neck by morning. She was in better condition than I was to go to church, although she had difficulty rising from the pew. We had showered around 9am and entered church just after the service began half an hour later. We can't move that quickly on a good day. Afterwards our weekly shopping was completed in a rather sluggish hung-over manner. Last Sunday she noted that the hair dresser in the mall was open, without customers, so this Sunday she primed herself to have her hair cut ( she fears shaking, embarrassing herself while her hair is cut. And sometimes a hair-dresser has difficulty coping with a customer who won't stay still.) Unfortunately, a number of people were waiting for attention so we continued walking by. The afternoon dozing in front of the TV. A few phone calls. One commented how well she sounded. A stiff, slow walk around the village in the evening after we ate. About 10pm, pains down both legs, she went to bed. By 1:30am she had to get up and retired to the recliner. I insisted the thing be fully extended and I covered her with a quilt. She slept until 7am. She showered herself but needed assistance drying and dressing. By 9am I had her call Margaret around the corner to seek Bowen therapy to ease her leg pains. In the conversation her fall a week ago was mentioned. Margaret said she should see a doctor & perhaps have an Xray prior to any therapy. I made the appointment at the unbelievably early time of 2:30 on the same day.

The GP thought an Xray was not necessary after a cursory examination of the bruises and a "warm" patch on her right leg. He gave her a prescription for Panadol Forte with the comment "Should the pain continue for another month then come back & I'll have another look at it." Also a prescription for a 'flu injection, saying that it was just coincidence that we have both come down with the 'flu following our last three yearly injections (I refuse to say "shots" since that is a colloquial term originating in a country where they "shoot from the hip" pre-emptively).

On the drive home we decided to visit our elderly neighbour who remains bed-ridden in hospital. Afterwards, we stopped at Margaret's place as she drove in behind us. Margaret had been out, intending to pay us a house call on her way home. Five minutes or so of Margaret's gentle manipulation eased the pain from her hip area, leaving only a dullness. Margaret said the warm patch on the right leg was where damage had been done to the muscle, cautioned not to walk too much, just a few steps along the patio every half an hour or so, no walk around the village.

Very weary, she went to bed a little after 9pm but got up 15 minutes later due to tremor & toe curling. An hour later she was back in bed asleep. When I checked on her later I noticed that she had turned in bed several times, an unimportant simple action for others who are well. Help was needed at 3am. She had to get up at 5am, no longer comfortable, so she sat in a chair until 8am, some pain in her leg, then returned to bed to sleep once more. She remains asleep at 10:15am.

I can only wonder why many of the medical profession fail to recognise and prescribe, or themselves practice, therapies such as Bowen. Undoubtedly, there are many shonky "cures" but Bowen is not one of them. Prescribing a strong pain-killer is little better than telling a drowning man to keep swimming until the ocean is drained.

Chapter 16 - Friday Night or Saturday Morning

We just this minute returned from a brisk walk around our village. Cool is setting in for the season; we wore jackets again. She walked briskly on my arm, only swapping sides a couple of times.

Do you remember from the last post that she was up at 4am Friday morning? Well, she then slept 2 hours till 10:15am when she rose, showered & dressed without assistance then surprised me by poking her head into my dungeon. No tremors. By late afternoon she had strong tremors everywhere, except her left arm & hand. And she was stiff. Her regular meds had little effect. She was in bed by 11:30pm, me soon after & sound asleep. I woke at 2:30am (Saturday) asking "Where are you going?", thinking she was off to the bathroom. "I'm coming to bed. I was all twisted earlier & couldn't get to sleep." I helped position her into bed. Fifteen minutes later I woke to find her getting up. At 4am on my usual early morning trip to the second bathroom (I'm banned from hers) she was still seated in the back room. Still there at 7:30am, having had her meds half an hour earlier. To sum up, she had had no sleep since 10:15 the day before. She says there have been few tremors in the last few days & then only while in bed. Memory is fickle, my notes aren't, but there may be a decrease in shakes and we hope & pray it lasts. "I couldn't go to sleep because the bed slopes." Against her protests I rotated her mattress & remade the bed. After some breakfast she went to bed at 8:30am. Woke at 11am for a walk to the loo then at 12:45pm rose for the remainder of the day. Her afternoon meds failed to kick in, so mild tremors. Late in the day a shower, washed her hair and needed help drying & a little help dressing. I doubt any male would be able to "do up" a bra, I have difficulty doing hers. She spent the afternoon watching disgustingly abnormally fit athletes on TV at the Commonwealth Games.

Some days ago I convinced her to stop using a well-known brand of roll-on deodorant containing aluminium (no, that isn't a spelling error you confounded foreign national spell-checking rubbish!) oxides, the sort of toxin I shunned 20 years ago & close friends say I am just as sweet.

I'm looking forward to evolving events tonight through tomorrow; church & shopping day. Stay tuned.

Chapter 15 - Unpredictable

I am surprised that I need to post some words this morning.

She said herself on going to bed at 10:30pm "Today has been a good day". Speaking relatively of course, day to day. I made very few notes yesterday. She rose, showered herself, only needing minimal assistance to dress herself. I can't remember anything about yesterday morning, it was so ordinary. After lunch a friend came to discuss VOIP & other matters with me while she watched a movie. Late in the afternoon I took candid photos at the church's kid's club for the friend who runs it. I rang home a couple of times, she answered clearly & promptly so I assumed she was OK. My dated, expensive mobile needs brain surgery again because its microphone does not work once again! We dined late after my return on turkey-leg steaks (or chops?). Jackets were needed for a cool walk around the village. I commented that the warmth of her arm, linked through mine was quite noticeable. Both arms. Her brow was cool. At 10:30pm assistance was needed to help her out of her chair, as usual, on her way to bed. Quite early for her to go to bed. She woke me a couple of times in the night for either toilet trips or to turn her in bed. The last was about 4am. I woke at 8am this morning to find her gone. TV breakfast junk programme playing softly outside. "How long have you been out here?" "Since a bit after 4am - you were sleeping too soundly to wake you". She had had breakfast, her meds at 7am, little trouble moving. She asked for the pedal exerciser. With only slight hesitation she was able to pedal slowly for a couple of minutes. Then she said "I think I'll go to bed. I feel a little whoozy." On interrogation she said not dizzy or light headed, just in need of sleep. She rose from her chair unaided, walked normally to the bedroom and got into bed after kicking-off (!) her shoes. She kneeled on the bed to get in. "Do you always get into bed by kneeling on it?" I asked after 42 years. "Of course" she said. She showed me a bruise that has come out on her right leg. I drew up the sheet & quilt. Time to peek in to check on her. She's breathing gently, sound asleep.

Chapter 14 - Days Go By

I tip-toed in to check on her and on the way re-positioned the toilet seat disturbed last night. "How can I call you if I cannot reach the radio?" (after a toilet trip in the night she was wrong way up in bed so as to lay on her left side). "There was nowhere to place the radio except on the bedside cupboard". Perhaps I need to hide it beneath her pillow, she will remember where it is. I lowered her legs over the side of the bed, raised her to a sitting position then assisted her to stand. Held her in my arms until she had her balance. "Hold me" she said. We shuffled in congo-line manner to the bathroom, me in the rear. I held her nighty up while she lowered her pants, then sat. I withdrew, she needs some privacy even though the door is wide open. Then I raised her to a standing position. Sometimes she needs her slip-on shoes on her feet so that she feels her feet solidly on the floor. My arms are around her as we struggle to raise her pants. "Are you holding me?" "Yes enough but not too tightly" "Hold tightly, I don't want to fall". Whenever she returns to an un-medicated state any slight incline becomes a steep slope, inches in from the edge of the bed becomes not-far-enough-in-not-to-fall-out. Shuffling back to the bedroom she decided she was half an hour late for medication but in checking our daily notes 7:30am is about average. We should be stricter with these medication times; on the other hand some suggest medicating as needed, we fear that approach so strictness in timing may remove some of the un-predictability. But does it? I suspect events that occurred days before may modify her performance today but there are too many variables to identify. For instance, on Monday she was alive enough to pedal the exercise machine; shower, dry & dress herself without assistance; make her bed & pack chicken pieces into little bags for the freezer. The remainder of Monday completely lost.

On Tuesday, expecting the much the same of the day she prepared for her KYB group, needing assistance in the shower (the floor sloped "too much"), assistance with dressing until at 10am she rang the ladies to apologise for not making it. I needed to visit the Cottage, suggested she come for a ride in the truck & we take her walker plus a firm garden chair in case she was up to going to KYB. She felt capable when we arrived there so I helped her into the hall with the ladies & returned after she phoned me almost an hour later. She was restless, sweaty & slow until late in the afternoon when she felt ON (alive) for a period and a reasonably tremor free evening.

Wednesday just a slow day. In the afternoon she was able to remain seated in the one place during our group meeting. Our friends were caring and laid hands on her & prayed for her. In the evening to the little quilting group at our village hall where she laid out a few squares onto backing paper that makes positioning easier.

She is needing more frequent assistance to rise from chairs. She continues pain free except for the tenderness from her fall on Sunday, her right hip hurts. Her sweats continue, requiring fans blowing on her - often her blouse & bra are damp to the touch - her skin is clammy. Her fear of unbalance ever present.

As I type she appears at the door of my dungeon, radio in hand. I look down, yes, mine is hanging around my neck. "Can you bring the washing basket out to the laundry please?" Another day has started. We decide she needs to increase her medication, no more than another dose a day, and perhaps move away from the slow release type. Some literature suggests it encourages her current symptoms. We will discuss this with the specialist-physician, the caring doctor who is not a neurologist, next week. Till then, we cope.

Chapter 13 - A Changeable Day

I had a shower after she rose at 9am. When I came out of the bathroom she was furiously pedalling the machine. She followed that demonstration by showering, drying and dressing herself without needing any assistance at all, quite surprised me when I came to check on her progress. From the fall yesterday she has some pain near her right hip & below the knee but with neither swelling nor bruising present. A great day in the offing! Around 2pm she became tired, went to bed & slept for over 3 hours. From then she went downhill; increasing restlessness, needs to walk but only shuffles, sweats needing fan or air conditioner, unable to rise from any of our chairs without assistance. She is now sitting in the bedroom after needing assistance to go to the toilet. Too restless to read or watch TV. We skipped our nightly circuit of the village. It's now midnight, a long morning ahead.

Chapter 12 - A Weekend

Our intention had been to shop on Saturday. We didn't. Awake from 5am she needed a sedative an hour later to calm her because she was very restless, very stiff and needed more sleep. She then slept for 3 hours from 8am but she was not up to showering until 2pm. Then later while I was at the embroidery machine I heard loud sobs from the lounge room. Unbeknowns to me she had decided to attempt pedalling the small exercise machine at which she had failed the day before. She had failed a second time. She took quite some time to calm down, then slept for an hour in her chair. Then suddenly she bounded out of the chair, almost ran (up to then her walk was a shuffle) into the lounge room, sat in front of the pedal machine and pedalled for all she was worth for some 10 minutes. The sun briefly shone through a break in the rain clouds. Then she returned to "normal". She glowed with the success, short as it was, of proving that she was capable.

Sunday saw her determined to attend church, possibly because she knew I wouldn't leave her at home on her own. She wanted us to be there during the "40 Days of Purpose" programme. We made it there only slightly late. Some hesitation at the rear of the church attempting to locate an uncrowded pew where she would feel at ease. Afterwards we even stood out of the sun talking to some friends before returning a bag of DVD's, looking in KMart for a treadmill machine advertised on special and doing the week's shopping in Coles. Including a very large pavlova base and fillings to take to my cousin's place in the evening. By the time we arrived at the checkout she had had enough and sat on the bench seat outside. Back at the house she watched some movies until time to head bush to the cousin's place the far side of the town at which we lunched last Thursday. And to think that I was so doubtful about her condition that I almost rang the cousin to cancel our visit. Little faith.

On the way into the house she tripped on a small step and fell, not heavily, but enough to hurt her right knee. With my assistance she was able to rise, able to walk, without pain. No swelling occurred. Then followed an excellent pasta, salad, red &, of course, pavlova evening. Lot's of laughter. Cousin's youngest sister & husband from down south were visiting. Such occasions bring reality back into our lives. Although each of us had large helpings of pavlova, at least half the thing was left behind in the self interest of our diets. There was no problem walking to & getting into our truck. But back home she found she was unable to climb into bed in her manner of walking on her knees across the bed, her right knee hurt too much. No swelling or bruising evident. I was unable to remain awake, she decided to watch a movie until she was tired after taking a sedative. I was wakened at 3:30am by a distressed screech from the CB radio. She had spent over 3 hours roaming the house attempting to make herself comfortable enough to sleep, & failed. I coerced her to bed, lowered her onto the bed then moved and rotated her parts until she found comfort & sleep. More calls at 5am & 7:30am for trips down the hall. I left her asleep on her left side wrong way up on the bed. Still wrong way up, she is now flat on her back, legs outstretched, most unusual for her, still sleeping soundly 2 hours later.

Some good news to report. In the last few days we have realised that she has had no back or hip pain since her last visit, a week ago last Thursday, to Margaret the Bowen practitioner. We bumped into Margaret at KMart yesterday and happily told her this.

Chapter 11 - A Sleep Filled Day

Just as I began this chapter at 8:45am she called me on the CB radio. For the last hour or so she had been on her right side in bed and her right arm ached but she was unable to move her shoulder for relief. I helped her get out of bed to untangle herself. Deciding to give her right side a rest she toppled back into bed on her left side but with her head at the bottom; her solution to not being able to roll over in bed. I have tried to roll her from one side to the other only to have her feel "twisted" and that requires getting out of bed & in again to "untwist".

Yesterday she slept from 7am till a little after 11am, then again for an hour from 3pm. She had no meds until 2pm & that only a half dose. At 8pm a full dose. Consequently, when awake she was very stiff & slow. At 4pm she showered with some difficulty. She feels the need to exercise, is only able to complete arm exercises shown on a video tape, leg exercises are beyond her. Yet she walks reasonably well. The last time she visited our neighbour in hospital (poor thing has been there for some 2 months, unable to walk) she asked to borrow a small peddling machine. So next door I went, borrowed the machine from the neighbour's partner, adjusted the thing for minimal drag only to find she is unable to make the pedals turn. She felt she may be able to peddle backwards, so I turned the machine around (the pedals rotate in one direction only) and she was able to make one hesitant jerky rotation. Utter failure.

We dined with Al Fresco on our rear patio on fried chicken pieces dusted with curry then I went next door for awhile to discuss, over a glass of red, the idiotic results of a Washington Post poll of USERS that has determined that about 50% of the US population believe that the Islamic world is becoming more violent. Talk about the emperor lacking clothes!!! We also resolved a few of the world's problems.

She needed to walk so around the village circuit we went at a reasonable brisk space. The peddle machine beckoned as we came in our front door. This time an odd revolution or two was completed whenever I assisted to provide a little momentum. But useless as a form of exercise! So what is different about being seated in a chair to peddle and walking upright (I think that is the only way to do it) for 20 minutes without hesitation? Did evolution provide different logic paths for walking than for peddling? Not likely since peddling is a recent innovation.

To bed and sleep at 11:30pm with hot milk, honey & two panodol. I woke at 3am expecting her to wake, which she didn't, even though I went for a stroll down the hall. She woke at 5:30am. By the dim morning light I watched her "getting up"; at least a minute (maybe more) to raise her body and hang her legs over the side of the bed. The average neurologist worth his pills will immediately shout "under-medicated!". I helped her rise on her feet then to the toilet. I talked her into a sedative. And that returns me to the beginning of this chapter.

Except for an interesting observation she made yesterday. Well, she says she has made it several times in the past few weeks without the idea sinking into my head. Her left hand does not shake, well not often, much less than earlier. Somewhat the same for her left leg. She tends to carry objects in her left hand, using her right makes it tremor badly. Perhaps this is an indication that she is reversing out of her morass? Back in 1990/91 it was her right side where tremor was first noticed, not her left for a long time after. Is it too much to hope & pray that some layers of her PD onion are beginning to peel away? Surely not.

At 9:50am she sleeps the sleep of an innocent, on her left side, wrong way up in bed.

Chapter 10 - A Sunny Day

Our friends called about 11am for us yesterday. A drive over the dry hills and beyond the Don Quixote sentinels into the small country town. Maureen welcomed us to her country-style restaurant with her usual friendly chatter. Maureen's husband brought the necessaries for the white & the red which accompanied us. Others began with curried king prawns that I avoided. Two courses & several hours later we ambled into the second hand store close by where she had bought a large bear for $4 some months ago. She returned this time with a photo of Leslie Bear dressed in his tartan vest & tam o'shanta. A shame the lady who had sold it to her was not there yesterday. A chance meeting with a distant cousin (my great-great grandfather & her great grandfather were brothers, we are that close) resulted in an invitation to the cousin's place next Sunday evening, a locality about 10kms further on towards the black stump. A pleasant return drive including a side trip up a bush road brought us home by 5pm or so. She had a good day, slow perhaps, fortunately lacking other uncomfortable movements. We enjoyed our friend's birthday.

Both tired, we went to bed at 10pm. She to sleep quickly. Most unusual, not the normal midnight or later. But awake at 3am, tremors, very stiff, uncomfortable and took half of one of her meds a short time later. The collapsible chair in the bedroom was unsuitable this morning so after walking (more shuffling rather) she sat in her sewing room's office chair reading a Mills & Boon until 7am when she returned to bed exhausted, quickly falling asleep. Around 5:30am she had taken milk & honey with panodol. We both woke at 9am, she to toilet then returned to bed. I remained up.

As I conclude this note at 11am she remains sound asleep. I will remain hirsute for some days yet.

Chapter Nine - Experiments

I came to at 8am chilled by the fan blowing across the room. She remains asleep. Nights have been bad lately. I was supposed to be at the barbers to repair my shaggy-dog look at this time this morning but another day added to a month overdue doesn't matter much. We were in bed asleep by 12:30am. Awake at 3am uncomfortable, restless, slow, sluggish and unable to find relief by shuffling about the hoses, she took half a CR at 3.30am (not usually done) then woke me because she had difficulty moving. By 4am I had her seated in one of our new collapsible chairs that I positioned at the end of her bed. She began showing signs of stress so I gave her one of the sedatives she has not needed in a long time. An anxiety attack was forming. I made her some warm milk & honey. For a time she looked glassy-eyed, staring around the bedroom dimly lit by my bedside lamp. Her restlessness increased until she needed to stand. A trip to the toilet. A few yawns thankfully. Then into bed. An attempt to play one of her favourite movie tapes failed because for unknown reasons the damned VCR would not display on the TV in the wardrobe. I gave up, my reasoning powers a little sluggish at this hour. Slight snoring. I fell asleep also.

This portion of our saga began last Sunday. After church she needed to sit in the truck while I said a few words about our Wednesday group to someone. Back at home she felt off so she decided to have half of a rapid release tablet (none of this has been taken in about 6 months) as her scheduled medication was due some time away. A bad decision. Within 20 minutes she felt bad, her feet were stiff & toes curled within 50 minutes. Two walking circuits of the village after which she attempted to follow some taped exercises which she discovered she was unable to perform as well as the last time she did them. Her early afternoon meds were skipped. She was showing the signs of over-medication she experienced some months earlier. Her evening meds failed to kick-in.

Monday morning was good, able to move easily, down to the Cottage. By mid-afternoon sweating, toes curling, bad tremor in right hand & both legs, her bad ankle began to swell from the "exercise". Much the same at 11pm, so we walked around the village for some relief. By 1am she moved easily, no tremor, to bed. Her meds this day had remained at the level accustomed to over the last few months. It seemed she was over-reacting to the second & third doses.

On Tuesday after she woke at 5am forced by discomfort to walk the house for a few hours we decided to reduce her meds slightly. Normal dose first & last but half around midday. There was some discomfort after the morning dose and more so after the evening dose.

Wednesday began with early morning blood tests for a routine checkup requested by our GP. Always stressful to her because of the difficulty they have to find her veins. After yesterday's reduction in discomfort after a half dose, we decided her 3 doses today should be halved. In hindsight not a good idea. Her symptoms which I now record at half-hourly intervals show that Wednesday was much worse for her than on Tuesday. We seem to have forgotten that her time constant for changes to be effective is about a week. At our afternoon group meeting we both sat outside the lounge room area where I was able to assist her to rise when she became uncomfortable so that she could stand leaning against the kitchen bench top. This time she was able to speak more loudly to attract attention. More circuits of the village in the evening.

She called me on the CB a little while ago. I helped her shuffle to the toilet and back to bed after taking her meds. "What time will G. come?" "At 11am". "Make sure I'm up by 10am". We will celebrate a birthday at our favourite country hospitality restaurant in a little town not far away.

Chapter Eight - Ordinary Days

Wednesday afternoon saw nine people seated in our smallish lounge room for a study group. She sat at the rear where she became uncomfortable and found the need to stand at the kitchen bench top. "I said something a couple of times but I don't think the rest of the group heard me. You were near the front so I was unable to catch your eye" she said later.

After a night of disturbed sleep, awake from 4am, meds at 7:30am she slept between 8am and 10am. Then for a session of Bowen therapy. Margaret suggested she begin spacing her visits three weekly rather than two now that her muscles need less treatment. Perhaps this is the way to go now that her major leg and back pains have subsided, not that she is without pain. A few days ago she experienced severe pain between knees and feet because her legs wished to extend stiffly whenever she was seated. Then down the street to join the local video shop for light entertainment for her. We collected six DVD titles for $6. The girl advised us that video tapes were only 50 cents on Tuesdays. Do we look so much like old age pensioners & who wants old technology? Her selection contained a few tear jerkers that have not been good for her emotional state. More comedy & musicals next time. Anyway, to celebrate a pleasant day we had fetta & spinach rolls with salad to break our diet at the club (the thought of sticky date pudding & the like entered not our minds) . Such behaviour also indicates we are not Anglicans in this season of Lent. Although our dieting made us feel bloated after this lash out so in the evening we ate very little.

Then followed a good night's sleep (11pm to 5:30am followed by dozing) that dawned to a day out of sorts. She needed to do the washing so stripped the beds. Later I went looking for her to find her stuck down the side of my bed attempting to position a fitted sheet. She was upset. The confined space prevented her backing out. Two king-sized singles in an average sized bedroom leaves little space at the edges when she needs a reasonable walkway down the centre. "You get upset when going to bed to find your bed not made" she accused me as I pushed my bed aside for her to escape. She is correct on that point, although I don't expect her to do the chore for me. To me, facing a bed lacking sheets at midnight tends to ruin the desire for sleep; perhaps this is the male horror equivalent to the female revulsion of seeing a raised toilet seat (about which I was educated many years ago). We hung the washing late in the afternoon. Concern that the clothes be left on the line overnight. Later she had a long phone chat with a friend who has been through extremely difficult & stressful times in recent months. I overheard her comment "I'm fine" followed by her usual laughter, obviously in response to a question about her health; I concentrated on the movie I was watching in the other room - although our problems may be slight in comparison I made comment later. "People don't want to know about my little problems" she replied. Just before going to bed I found her printing daily encouragement notes emailed to us for our new Wednesday afternoon study. She wants to give them to the email-challenged ladies who attend from our village. While I frown and explain that this will be at least 120 pages of possibly wasted paper she says "I can't do much so maybe this will encourage them".

Although the nights are becoming cooler now she needed the fan blowing across her during the night.