Chapter 42 - The Meaning of the Universe

On Monday she kept her appointment with her local caring specialist physician. He gave her a thorough inspection. He listened to our long winded descriptions of her sleeping difficulties, her attempts, on the advice of our Bowen lady, to adjust her sleep cycle. Although I should not be cynical, caring physician prescribed "Stilnox", technically Zolpidem Tartrate, as a trial. Quick acting, short half life and non-addictive. Just like food I think. Unfortunately not on the PBS, $23 for a packet of 20, no cheaper from the discount pharmacy on the net. So Monday at 11pm she took one 10mg Stilnox. Quickly asleep, woke at 2:30am for loo and midnight meds (for some reason we had not set the alarm). She stumbled to the loo, legs not well under control, after being soundly asleep. Then more sleep until 6:20 when she woke for loo & meds. Rose for a shower at 8:20am, KYB at 10am, visit our neighbour in hospital at 11:30am, at 2pm walked with me to collect our mail. The latter because she was stooped & ill at ease. After 4pm she completed some typing for a neighbour, even walking across the street to deliver it, actually one & a half trips because no one home the first time. I'm thinking this is great, confidence in her own mobility. By 9:30pm she needed bed. She did not wish to take her new pill. Her legs kept sticking out from the edge of the bed. I pushed the rigid things back in. Several times. Then after a loo visit at 10:45pm she said she felt weak, unbalanced. The same problem with her legs so I positioned her body diagonally so that when her legs straightened they would not protrude. Panic. She cried out "I'm all twisted, my whole body. I must get up!" She was stressed, needed help to get out of bed. Asked for a chair to be brought into the bedroom so she could sit. She said "I'm scared to sit outside away from you." Loo visits at 11pm, 11:30pm & 12:20am (the last a firm motion - disgusting revelations to some of my readers but I'm looking for the appearance of side effects to the new pill, even though taken 24 hours earlier). Quite frequently she drank from her Bill Gates water bottle.

When I rose at 6am (Wednesday) she was awake. She told me that she had dozed in the chair until 1am, then to bed where she slept fitfully during the night. Before 7am I heard her sleep noises until the alarm demanded she take her first meds of the day. We had some difficulty bending her right knee to get her back into bed. "It's been a long night" she said, "I shook all yesterday afternoon, and felt scared, and only about 11pm did I feel any control over the shakes." I asked whether she had been seeing "things" - she had not. Relief. We decide she will not take another Stilnox until either Friday or Saturday night. She had taken her mobile into the bathroom in case she had needed to wake me from there during one of her visits. Perhaps I need to bring our CB radio charger base into the bedroom so that the radios can be parked there rather than in the back room. She was still awake when I later returned from a quick walk around our frost covered village. Then she fell asleep while I breakfasted.

I leave her sleeping soundly at 9:10am. My sinuses ache.

Chapter 41 - An Average Week

Last Sunday was a surprise for me. At 11:15am she suddenly appeared at the door of my dungeon saying she would shower. Half an hour later I went to check on her progress. She had showered, was fully dressed & doing her hair!! Although we had missed church I thought we needed to escape the house so I convinced her we should go to that market she had hoped to visit after church. So 40 kms later we arrived there to have lunch on the remaining sausage, pieces of bacon & eggs on stale rolls to be found in the kitchen of the small country hall where the market was held. I swapped my egg for a piece of her bacon. Other than the food scraps there was nothing to buy. We returned to town for some grocery shopping. An early evening to bed at 9:30pm and asleep by 11pm concluded what had the beginnings of a horrid day for her but turned out otherwise.

Then followed a week of normality. The usual stiffness, arm aches that are subsiding, sleeplessness, restlessness. Tuesday she made it to KYB. All day Thursday she had a headache although that night she considered good because she was able to turn in bed several times without assistance. Normally she calls out to me to help her out of bed so that she can get back in laying on her other side. Wednesday evening she lacked ability to proceed with her quilt at our hall, although a pleasant outing for her. Friday an appointment to have her toes attended to by a chiropodist.

Saturday was a bad day, after sitting in a chair for 2 hours she was able to go to bed and sleep at 4:30am. At 7:45 she sensed she was laying "across" the bed (she wasn't) so needed to rise & get back in. She rose at 10am, restless and stiff. Her legs stiffened to such an extent when she sat that her feet lifted off the floor. Her whole body had the shakes. She felt over medicated so decided to skip her midday meds. I am unsure whether doing so showed any results in her later activities. She is able to rise & walk without difficulty. She decided not to shower, just dressed instead so we could walk briskly around the village. That seemed to unwind her. By 4pm she no longer felt she "needed to jump out of her skin" but remained very shaky. Then we walked the village again. To bed early and sleep by 10:30pm, but she spent over an hour on a chair very early Sunday morning. At 8am her right hip ached so rather have her rise to get back into bed the other way I rolled her from one side to the other. She seemed comfortable as I went for a shower. She was calling out as I returned 15 minutes later. Her body was "twisted", in pain, unable to move. I helped her up. She was unable to lay down again. Had to keep rising from a chair to move around. After a little breakfast she was able to shower and dress herself, too late for church. We walked to our hall to attend a Red Cross luncheon.

Have I described how she gets into and out of bed? Sometimes she is able to do so without help. She shuffles to a position at the side of the bed, a position from where her head will be on her pillow. She places her hands on the bed to balance. With much effort she lifts her right knee, leaning forward a little to rest it on the bed. Sometimes I need to lift her leg high enough. With effort she forces her right knee toward the middle of the bed. Now leaning on the bed with her hands she slowly topples forward, landing on her right shoulder. With luck, her body falls into a comfortable position, because she is now unable to move her legs. They lay as they fall, like a tree. Should her feet protrude over the edge of the bed then that is how they stay. I will push them further onto the bed if I am present and awake. Usually she is able to grasp the doona and pull it up. She then grabs the bed pole and pulls her upper body forward until her right shoulder is correctly positioned. Too much dragging herself about using the bed pole causes her arms to ache. Even though she sleeps on satin, she is unable to wriggle for that final degree of comfort. As you would. Try it some time, just fall into bed and see how long you remain comfortable without wriggling your feet, twisting your shoulders, rolling your hips ever so slightly to remove that last little bit of discomfort. Then try to sleep. Stay like that for several hours. When you need to turn, get out of bed to do it. Her problem is not insomnia as many people think when they compare her sleepless nights with their own.

About half the time when she can't get out of bed without help then she calls me. I draw back the doona, pull her legs as a pair (they remain stuck together, it takes effort and some pain to separate them) to the edge of the bed so that when she loops her arm around my neck and I stand upright she is drawn to a sitting position with her legs over the side of the bed. Not a recommended OHS technique. Then her slip-on shoes are fitted, as she needs these for balance. When I think to use it, I loop her lifting strap around her torso and lift her into a standing position. Her feet will be close together so she needs to concentrate to spread them before walking otherwise she tends to sway too much. Once stable she is able to shuffle, if not walk, away. I puzzle that her legs are so useless when horizontal in bed yet they are able to support her to walk when upright.

Early this Monday morning, about 2am, she woke me. Her arms were folded across her chest. She was not able to untangle them. Her arms were cold. I grasped them and felt resistance. A little force and her arms relaxed, came undone. "That's better" she said. This bothers me. Are her arms developing a rigidity similar to her legs? Or as a result of skipping her midday meds on Saturday? When the alarm woke us for 7am meds I checked with her that this had not been a dream, even though I had written it in my little notebook.

Chapter 40 - Attempts to Escape

She wanted to go to church and a market this morning. Neither are likely at this time. I helped her back into bed a little while ago as she said "I've got to have more sleep". Earlier she woke at 6:30am in need of help to get up for the loo. On returning from there "Don't wake me at 8" as she took her early morning meds a little ahead of time. She told me that she had come to bed around 3:30am. As I came out of the shower at 8:30am she woke again for the toilet then returned to bed. Anyway, back to the present in a little while.

She says that if she cannot make it to church at 9:30am then I should go on my own at 8, otherwise people will be concerned, wanting to phone or visit to check on us. I try to explain that is not a reason to attend church. I fail. I fear the thin end of the wedge of leaving her at home. Although I did on Thursday to attend a men's dinner to hear a retiring polly speak. A good speaker who, in my view, has a short sighted view of history, believing that the stability & benevolence of our culture is due to our Christian heritage. I am sure it is, except that it is a brief 20th century phenomenon in our remote dusty part of the world, and then only paper thin.

We seem unable to break her debilitating sleep cycle as advised by our Bowen friend. Chicken & egg Catch 22 problem. I forwarded that "Open Letter" I posted in Chapter 38 to her. (I suppose you think us strange sending emails to one another & calling for attention on CB radios.) Anyway her reaction was that "hating anything is bad"! Now there is the result of a conservative Evangelical upbringing for you. And hate can be such a motivating emotion when compared to passive "love". Aha! I hear you say "love is not passive."

She has had several episodes of a strange sensation that she describes as her head being "jammed" into her shoulders, pain up the back of her head and across her shoulders. Early one morning in the dark I stood behind her, arms around her chest and gradually straightened & lifted her until she said "that's better".

In attempts to alleviate neck pains she has been using her little red seed pillow after heating it in the microwave. She fears using that pillow now because a few days ago, as I helped her into the bathroom, her nose began to bleed. Drops across the tile floor. Attempts to stem the flow and pull down clothing as she seated herself. A packet of frozen vegetables on her forehead. Bright red tissues everywhere. After 5 minutes or so the dripping ceased. Then hassles rising & adjusting clothing. She blames the heated seed pillow, but something for the doctor's visit next week.

Last weekend I decided we were slowly becoming hermits. A neighbour had mentioned a road across the back blocks to a country town we have often driven through without stopping. Beautiful blue skies together with frosty mornings had initiated restless yearnings to be gone. So on Wednesday around "tennish" we, with two friends, headed bush. If we push things, our public day begins about 10am. As we pulled into the town a little after 1pm a friend yelled "There's a pub with counter lunches." Good timing, an hour after her midday meds. Roaring wood fire and battered fish lunch in the presence of a few locals at the bar. They were friendly. Then in exploring the town we found a craft shop offering Devonshire teas. The small tidy caravan park may be a suitable close one to test her caravanning legs, although I fear her van bed will be less enticing than her one at home. And what can one do for entertainment at 3am on a frosty night in a caravan park? We returned home at dusk. She had a good day she said.

Friday evening I popped in next door for a merlot with our neighbour whose partner has been in hospital suffering a disability problem for some 7 months. Surprise, surprise the partner was home after all that time. I rushed back home to break the news & take her in. It seems my friend next door has not been attending too closely to house cleaning during the partner's absence. Such small details are much larger in a woman's eyes. Fortunately the bout of frosty mornings can be blamed for the damage done by his lack of attention to pot plants (no not THAT type) on their back patio. Anyway, mid-Saturday she made a batch of apple muffins for the neighbour as a welcome home.

After inviting 3 friends to a local production of "My Fair Lady" yesterday morning I rushed down to the Information Center where the tickets are sold. No need. The theatre at the disused mental asylum was only half full on a dark & frosty night. Although I suspect that if the friends had not been invited & the tickets not bought we may have lacked the will power to go on our own to see our GP perform in the Professor Higgins role. She did not have an evening meal because that would have clashed with her 6pm meds & preparations to go out at 7pm. As it was, the meds failed to kick in until well after 8pm. She did well to sit in a plastic stackable chair for some 4 hours.

And back to the present. She sleeps soundly at "tennish". I should attempt to break the cycle by waking her, but I won't.

Chapter 39 - Still Asleep

Still asleep at 10:40am on a beautiful clear frosty morning. "Today has been a GOOD day" she said last evening. After stripping the beds for the sheets to be washed, also the contents of the dirty clothes basket. Several loads in the machine. She began to hang the clothes on the line until I discouraged her. She still fiddled around though repositioning items on hangers so that advantage was taken of the weak afternoon sun. Also adjusts things I hang incorrectly. Why do women attempt to make works of art of clothes hanging on a line? Then later she took the clothes off the line, and she shouldn't have. Mid-afternoon we strolled around the village, seeing no one until we made a brief stop at a friend's place. In the evening she completed her KYB lesson for today.

The next worst task to ironing is placing sheets back on a bed & pillows on pillow cases. Even though I checked with her, I still fitted her bottom sheet, the one with the satin piece offset from its centre, the wrong way up, so that she needed another strip of satin when she came to bed, well beyond her new scheduled time of 10pm. The KYB lesson kept her too long in front of her laptop. Pain in her neck & across her shoulders. She sat on the side of her bed until almost midnight when she took her CR, then into bed, but unable to lay comfortably, needed her bed socks removed because they prevented her feet moving, too much friction. She needed her new backrest. That was not helpful, so at 1:15am she was seated in the backroom watching "Shall We Dance?" for the 579th time. I shudder everytime I hear the theme music. She was apologetic. I was angry, telling her she was not to be. Sometime around 3am she came to bed and sleep, me unaware. The alarm at 7am woke both of us. She was unable to get out of bed. Then she was too stooped to stand, unable to straighten, I stood behind her, hugging her tightly to remove her banana posture. "Ah, that feels good" she said as she became vertical. "My head feels as if it is squashed into my shoulders, the pain down my neck spreads out across them." She shuffled to the toilet and needed help arranging herself afterwards. She fell into bed & into the oblivion of sleep. No KYB group this morning for her. No call on the CB yet at 11am so I must check on her. And it's such a beautiful day outside of this prison.

Chapter 38 - How One PWP (Person With Parkinsons) Speaks About His Fellow Traveller

I have copied this from a posting on the Parkinson's Information Exchange Network [PARKINSN@LISTSERV.UTORONTO.CA] that arrived in my inbox today.



An Open Letter to Parkinson’s disease
Terry Ogden
2/12/95

I know you.
It took some time and a lot of pain,
But now I know you and what you are and what you do.
And tragically – how you do it.
I hate you.
I say this without rage and not out of an emotional fever.
I say it coldly, logically and with all my faculties in tact.
I hate you and as long as I draw breath, you are my mortal enemy.
You came into my life unwelcome and uninvited.
You began as an inconvenience; a nuisance.
And I adjusted and went on, but you weren't satisfied.
A shaking hand, an unsteady grip, a stiffening gait was just your
introduction.
You eventually robbed me of the pleasure to be found in the simple act of a
casual stroll, or writing a letter, or taking a drive.
Still I tried to adjust, abide and endure.
But the irritation became an obstacle and the obstacle became a torment.
What had begun as a physical encumbrance, all too soon became a way of
life.
Ever-present, all encompassing, affecting every moment of every day.
And at the end of each day, you deprived me of the sleep that might have
given me strength to face the next.
I am not alone in my struggle.
I have wonderful friends who understand all that they can and forbear what
they cannot.
I have a loving and constantly supportive family, who amaze
me with an unending well of compassion, patience and stamina.
And I have a life partner who is my lover, my best friend, my strength and
now my partner in pain, because she must bear my suffering, but without the
refuge she gives me.
The passion with which I love my family is infinite and unbounded.
It never diminishes and grows with each passing hour.
And, in kind, because you seek to injure and torment my family,
With this same unbounded and infinite passion do I hate you.
What you have done to me would be more than enough to deserve my hatred.
But, you see, all you do to me, in turn, hurts those I love.
And that I can not tolerate.
What did you take from me?
If I might overlook the loss of productivity and recreation,
If I could forget the physical pain and the endless hours wasted in repeated
attempts to accomplish the simplest of tasks. There is another assault
that I can not ignore.
In the taking of my simple dignities you have depleted my tolerance.
In taking away my power and clarity of speech, you rob me of my need to
communicate, to express myself, to teach and to learn.
When you block my ability to dress myself, feed myself and to provide for
myself the basic needs of each day you steal from me the absolute primal human
need for dignity and an embraceable self-image.
That’s when I saw you for what you truly are.
After turning me into a physical caricature of the person I once was,
After taking away my mobility, productivity and creative abilities,
After altering the very nature of how I led my life, you assaulted the last
remaining vestige of the quality of my life; my simple human dignity.
That’s when I knew you for what you are.
You are a bully and indeed, all bullies are cowards.
When I recognized you for the cowardly son of a bitch that you are,
That’s when I gave myself permission to hate you.
Hate can be destructive and counter-productive and as such should usually be
avoided. But when we encounter evil, injustice and cruelty, we are
entitled to hate with an unbridled self-righteousness.
If ever evil existed, it is you.
I now know how to fight you.
You glory in what I can not do, in what you can deprive me of.
So, I will fight you with all the can-dos in my arsenal.
If I get out of bed, you lose.
If I get dressed, you lose.
If I can produce, create, nurture, learn, grow or be of help to anyone,
anywhere, you lose.
It is a battle of one hour at a time and each hour brings me the chance to
look you in the eye and say with all the voice I can muster ‘I DO NOT FEAR YOU’
.
I know you now for a coward and a bully and I know that as such, you thrive
and grow on fear, despair and hopelessness.
But this is where your power ends and mine begins.
My courage and hope can only be taken by you if I give them to you.
I control these and as long as I live, they will be steadfast and ever
strengthening,
Because I know how badly you desire this last bastion of my sanity and
self-worth.
Hope and courage, these are my weapons and with them I plan to beat you to a
whimpering and cowardly submission.
It is only fair to warn you that in my fight, there are many soldiers;
scientists, doctors, surgeons; who at this very moment are planning and
progressing towards your ultimate and irrevocable demise; caregivers, who, though not
afflicted themselves, live with the suffering through their love and stand
shoulder to shoulder with their loved ones to hasten your defeat.
And across the world, millions of my brothers and sisters you have
victimized, tormented and abused.
We all hate you.
We will not fear you.
We defy you.
You can not last.
You will lose.
Now it’s time for you to be afraid.

Chapter 37 - A Non-titled Posting

I look through my notes wondering what to post here. For a change, I will copy verbatim my scribbles made at odd times.

Mon 5th June 1800 1CR 1I KYB lessons 2300 PD exercise 2430 1CR to bed, very cold, heater on, needed seed pillow, to toilet several times about 3 or 4
Tues 6th 0500 toilet 0700 1CR 1I 1 A 1/2L 0930 woken by doorbell 1045 rose for shower 1230 1CR 1I 1800 1CR 1I 2200 1D 2300 PD exercise 2430 1CR
Wed 7th June 0045 to bed 0100 asleep 0500 called out loudly noise like "Harold"??? then woke shaking, unable to get out of bed for toilet 0830 we both woke, she needing help to rise for toilet. Has memory of shaking a lot [in night] - we slept through the alarm meds late 1CR 1I 1A 1/2L 1045 woke & rose with mad shakes, stiffness 1130 breakfast 1145 feels over-medicated, slightly "thick tongue" speech, feels unable to keep balance, very shaky, no pain, not dizzy, but feels like falling backwards, feels as if whole body is alive but feels stiff, wanting to thrust legs out straight 1200 sweating toes curling (first in a long time) 1210 Began PD exercise as experiment [these are exercises done while seated] 1215 unable to continue exercise, sitting on chair with feet on poof watching movie 1330 shakes slowing down 1600 sleep on chair 1630 woke for shower .......

The notes I make only highlight PD issues, only sometimes referring to more normal daily events. Some people recommend doing this on a weekly basis so the patient has a perspective of where their disability is taking them. Well perhaps not the disability, which most say is incurable, but the progress of the alleviation of many of the side effects that develop, such as pain and movement problems. She finds note taking onerous & depressing, so I record my observations daily, otherwise I forget. And this blog is my attempt to summarise, so please be gentle in your comments, these notes are for our benefit, not yours, I just need an audience. Even of one, to talk to.

And so a week continues. We kept a deferred appointment (we had forgotten a week or two ago) with our Bowen lady. When told her of the sleeping difficulties she advised going to bed at 10pm, waking up at midnight for meds, then again at 7am for meds, no exercise before bed until the body clock re-establishes some sanity. I think she even said allow a 6 month time frame for this to happen. Some Bowen movements were done on her neck because that area has been becoming painful & stiff, especially when she wears a coat and hat for walking in the cold weather - the slight pressure on the back of her neck seems to force her head forwards (I have also noticed that slight bunching of bed clothes can become an insurmountable barrier to her when laying in bed). After Bowen we bought a $9 alarm clock at Kmart for midnight awakenings and the sodding thing failed last night and I think I have shredded the receipt.

She is trying to keep to this new sleep schedule, without any change in sleep behavior yet of course, except that she may sleep 1/2 an hour before the alarm goes off at midnight, although last night both she & the alarm failed in that regard.

On Saturday afternoon a short enjoyable visit to our friends recently returned from a caravan escape then yesterday a welcome noisy visit by some small ones.

Chapter 36 - A Monotonous Week

This week was so "normal" that I forgot to keep notes about Thursday evening & all of Friday. I can only presume those hours were much as earlier in the week. Each night she went to bed & to sleep at times ranging between 1am & 4am. We have noted that only infrequently does she need assistance rising from bed or chair - perhaps that is an improvement. She had expressed interest in the hype about the "Da Vinci Code"; it was still showing locally so we went to a movie in I don't know how long on Tuesday afternoon after she had been to KYB. She dozed through part of the showing; had difficulty following the plot, what with the flashbacks attempting to establish the causes of events; she had not read the who-done-it as I had. On Wednesday afternoon she slept for an hour & a half. Her VHS tape copying project was short lived when her copy of "South Pacific" (our personally very symbolic movie) caused our VCR to fail; a case of a tape contaminated with foam plastic crud after having been loaned. Much cleaning & adjustments failed to revive it; the VCR out of the van was also faulty. I resurrected two defunct VCR's out of the ceiling and by combining innards was able to make a working unit by Friday. The house had scattered VCR carcasses everywhere. My theory about spicy foods may be just a theory. On Wednesday I made a chicken curry of sufficient quantity but of little calorific value to last us 3 nights. The flavour was about as intense as a chicken stew. It had no effect on her I thought. Then yesterday we shopped at Aldi to save a small amount of pensioners' funds (I also bought a "toy" for my PC so I can listen to ABC FM as a change to BBC music programmes & that over-compensated for any imagined savings). Then last evening, Saturday, at 9:30pm she came to my dungeon to say she was so tired she would go to bed. Earlier she had said that her 6pm meds had not kicked in & that she felt cold. She needed to walk around the dining table to dispel restlessness & stiffness. Then the nightly horrors began; 11:30pm tremors woke her so a toilet visit, 1:30am woke very stiff & to the loo again, 3am woke stiff with one arm "asleep" - midnight meds not kicked in - headache above right eye (she said she had this for 2 days without telling me) - walked about the house for awhile & took 2 Panodol, 5am to the loo again, 7am woke to the alarm for first meds, then 8:15 she woke me to get up so that we might make it to church early. She was able to shower herself but needed assistance with all her clothing. We made it to church, although she was shakier than usual. I can only wonder about my curry, even one so mild.