Chapter 99 - The Proof is in the Chocolate

At 3:30am Sunday aching shaking legs predicted another bad day. Yet it turned out quite reasonable, for she rose at 8am to shower & dress herself. Medications at 6am Madopar Rapid and then Sinemet CR & Inderal at 9am, 3pm & 9pm. Perhaps I failed to mention that a month or so ago she added an extra dose of CR & Inderal? I can't remember, but she added it because she felt she was getting less mileage from only 2 doses. Anyway, this regimen means meal times are well removed from meds times, thus removing the old problem of protein upsetting the intake of Eldopa. At lunch she had soup and half a pizza in the evening. At 8pm I gave her six of those delicious chocolates, the same number that she enjoyed on Friday evening. I had six also, purely as a control of course, only to prove the chocolates were harmless! Of course, I know some of you will be saying "heartless beast", "brute", possibly cruder expressions as well.

Around 10pm her tremors began, she felt very shaky. She had to cease her KYB lesson at her laptop because her legs were stiffening and aching, her feet off the floor. She was also very thirsty, probably due to the pizza, as she was not so on Friday night. She went to bed about 11pm.

She woke around 1am Monday with bad leg tremors, legs straightening & poking out of bed, aching in lower legs because she was attempting to control the shakes & keep her legs in bed. She slept fitfully until 3:15am when she woke me for help to rise to go to the loo. She thinks she needed help several times later to rise & get back into bed, although I have no recollection of disturbances until 6am when her alarm sounded for meds. Sleep until8:45am when she again need help to rise. After 9am meds & 2 Panomax for the ache in her legs she returned to bed, unable to remain there uncomfortably she rose again by 9:30 to sit in her favourite chair to where I brought her breakfast.

The time is now 11am, I went to check on her, only to find her showered & dressed, a welcome surprise for today is obviously better than Saturday. She says she is still very shaky though.

So now we know that she must avoid chocolate (we also suppose no more cuppachinos, mugs of hot chocolate, mud cake, a particularly rich chocolate tart she likes at the Club etc & probably anything containing caffeine as well). We already know that curries and Chinese food are bad for her. She says alcohol has "strange effects" as well, so she avoids that as well. I suggest that she live on porridge, carrots & celery for a while. Perhaps not to that extreme, but I will try to record her food intake to see what else may impact her well being.

We have known for the last 16 years that foodstuffs, protein in particular, cause problems with the uptake of the meds so we have attempted to separate food & meds times. But our recent discoveries suggest to me that the foods she seems "allergic" to are playing an active roll in the stability of her nervous system. Then again, we are no experts, just victims.

Chapter 98 - How Unpredictable It Is!

I would not call yesterday a "bad" day for her; just her normal swill of symptoms. Last night she went to bed after me, I was asleep. I can't recall whether she called me or whether I woke to her struggles at 1am. She had been in & out of bed 3 times attempting to position herself, for this is how she gets into a comfortable position to sleep. And the more attempts, the greater the tension, the stronger the tremors, the more rigid her legs. "I can't keep my feet in bed" she says when I ask about her problems. I leave my bed, grasp her legs, which are straight & stiff, swing them like poles over the edge of the bed. I have her link her arms around my neck then tilt her into a sitting position. I loop the lifting belt over her shoulders and haul her to her feet. I need to stand there holding her while she "finds" her feet. I tap her feet with mine. Gradually I feel her body adjust to balance itself. She then shuffles about six steps to turn half a circle to face her bed; says "I'll try facing the other way", meaning she needs to face the window. I'm squatting on my haunches to lift her left foot which won't move. Suddenly it lifts, I grasp her ankle thus lifting her knee over the edge of the bed, push her foot forward so that her knee slides on the satin overlay toward the middle of the bed. She topples forward, too quickly, her face dives into the pillow, I say I'm sorry, trying not to laugh. I ask whether that's OK as I position her legs stiff as poles again and pull the doona over her. "It will do" she replies although I'm aware she won't be comfortable. I want to return under my own bedclothes. It's cold. I just settle under my cooling bedclothes as she calls out "It's no good!" We go through the same dance steps, although this time her right knee goes first so that she lays on her right side. She nose dives again. That usually doesn't happen. I return to my bed. Drifting away I hear her say "No, I must get up & sit outside." I help her into her dressing gown and to her favourite chair. The "My Bid Fat Greek Wedding" DVD is started; light entertainment when she doesn't wish for entertainment.

In the morning she tells me she came to bed at 2:30am. I help her up to the loo and then she takes her 6am meds. Then into bed again. We wake at 9am, takes her meds, I help her into bed twice. Her legs are "glued" together, tremors, stressed, so out to the chair again and takes 2 Panomax. She skips breakfast. At 11am she says she is very tired when I find her still in her chair with her legs straight out in front yet with both feet not resting on the floor.

When I check at noon she is sound asleep in bed. Again at 1pm. At 2pm she appeared looking somewhat refreshed. Yet from 4:30 - 5:30 she was asleep in her chair. I cooked a large meal of fish (since she had missed lunch) which she ate without problems. She is now watching "You've Got Mail" while waiting for her exotic Asian cooking programme to begin. She is still in her dressing gown.

The type of night & day we have just experienced is tending to make us fearful of making commitments to visit or have friends in. Although I still accept invitations to visit ad hoc when I realise I shouldn't. A week or so ago we were intent of going to Hot Air City one morning but I turned around for home before we left our town.

I always attempt to rationalise our behavior to seek the causes for a night & day as we have just experienced. Last week I spent a lot of time troubleshooting a neighbour's wireless network to convince our ISP that the neighbour needed a replacement router. Yesterday afternoon the neighbour gave me a quality box of chocolates in gratitude (not a bottle of Merlot since such delicacies are eschewed in that household). So after the evening meal last night we tucked into these lovely chocolates with cream centres, at least half a dozen each. Other than the chocolates, our food and activities were as normal as they can be yesterday. Chocolates, do you think? I now face the dilemma, experiment with another chocfest for 2 tomorrow night or eat the remainder myself? It will be cruel to put her through the same trauma again. Merlot would have been so much simpler.

Chapter 97 - Talking to Feet

I am tired of writing these notes. Things don't change much and I wonder whether I am repeating myself. You need to understand events that occurred months ago are still happening this hour, day, week & month; the problems don't go away, just the circumstances in which they are noted change. I often lay awake in bed of a morning trying to make a mental note to describe an event that happened to her, yet in the light of day the words/memories evaporate and I puzzle what incident had occurred. I rely on my imperfect note taking in little spiral notebooks to freeze moments to mention to you. My concern increases about her situation should I ever be laid up or worse.

I criticised her some days ago. She had been stiff, unable to dry or dress after a shower, pains in her back & legs. She was miserable. Then the phone rang. Her voice changed immediately she recognised the calling voice, it became light, happy, cheerful, sounded to me as if she had no problems at all. I must be thankful for her ability to rise above her problems.

Take this morning for instance. Her 6am alarm rang itself dry while she attempted to position herself to disable it. She was laying on her back, unable to wriggle into another position. I stretched out my arm to her bed, we grasped fingers, enough tension to enable her to sit for her soluble meds, but needed the loo first. My alarm at 7am we ignored to stay in bed until 9am. Of course, in doing so wastes the effect of the 6am meds, should they have kicked in, for her to have a shower. Bed is nice on cold dark mornings. So she was unable to have a shower by that time so took her 9am meds, sat in her favourite chair while I applied the TENS machine because there was pain down her right leg. The beginnings of a bad day. By 11am she decided to shower, dried & dressed herself except for those sodding little wire clips as always.

And then yesterday, Thursday. She showered & dressed herself without problem. But at 10:15am I was called on the CB to pull her jeans up after a visit to the loo. And the day before, Wednesday, after she showered I was needed to completely dry & dress her. She was in pain stooped like an oriental grandmother in a rice paddy. She had to grasp her toilet fire pole up high to straighten & ease the pain. All that day she was stooped unable to straighten much, poor balance and much shaking. Medication failed to kick in. Tuesday shower help & dressing were needed and by mid-morning a headache began and there were bad tremors in her legs. Yet Monday was a good day, although she mentioned later she almost lost her balance to the right when rising from her chair.

So it goes. All much of the same, yet with an annoying unpredictability. For those of you who know us, please take these variations in her performance into account when in contact with us, because we find planning activities awkward hoping for good days. Quite often mornings begin poorly & slowly.

Last Saturday she enjoyed an evening out at an amateur theatre production in a nearby spud-growing country town. The audience, seated at tables, eat & imbibe their own foodstuffs before, during & after the performance. She was pleased we were able to sit at a table position where she was not crowded.

I will have to begin making cool & hot curries again, rather than middle-of-the-road versions. I think I mentioned her reactions to a recent curry. Further servings of the same brew seemed to disturb her tremors & general well being, although not to the same extent. In mentioning this at our local PD Group, other PWP's are also aware that spicy foods have negative impacts on their PD symptoms.

Last week we ventured to the mattress store in Hot Air City, the place where we bought her favourite mattress last year. For an additional $500 above the cost of a mattress we ordered a non-standard sized one for the van; in anticipation to taking more trips.

An interesting comment from her. Some weeks ago she was sitting on the side of her bed as I put her socks on her feet. I pushed her comfy shoes into position for her to slip them on. "I can't do it," she muttered "because I can't see my feet." My stooped shoulders & head were obscuring her view of her feet. I had not realised that was important to her. She often says she has to talk to legs & feet to connect to them before she can walk.

Chapter 96 - Understanding

I forgot to mention her recent behaviour on her scooter while away on our recent van trip. At that sweet little town known for its cherries I walked from the van park down to the main street, maybe close on a kilometre, to determine how suitable the pathways were for her scooter (we took the scooter disassembled in the rear of the 4WD). I thought quite adequate. I returned to the park and convinced her that an excursion on her scooter would be no problem at all. It was not to be so. First off, we had to cross the main road to the concrete footpath on the other side. Then halfway into the trip was a narrow pedestrian overpass across the railway line and on the far side a downhill slope to another street. She needed to steer clear of a bench seat & a garbage can on the other side. She neither slowed down nor avoided the obstacles. She has difficulty doing both simultaneously. Tripped the circuit breaker on the scooter. After turning into the main street she saw too many pedestrians. Over her protests I bullied her to scooter some three blocks to the end of the shopping centre to a store where I looked for a jacket I have been told I need. It wasn't found there. So after buying some meat pies in another shop, without further dawdling we returned to the van park.

Her only other scooter experience was in the town with the licorice factory. Again I checked the pathways to the town centre. The town fathers have seen fit to lay a brand new concrete footpath a good kilometre long all the way from the van park. Every few hundred metres there is a bench seat to the side for weary travellers. The footpath is quite wide; at least three, maybe four could walk abreast. If I remember correctly, there is only one street crossing in the entire length. I convinced her this scooter experience would be better. And it was, except she was convinced the path sloped to the side. I couldn't see it, but admitted there may be a slight gradient, enough to shed rain water to one side. Before reaching the town centre she wished to return. I persisted until we arrived at the town centre where she remained on the scooter while I crossed the jumble of railway lines to the other side where the majority of shops still trading are placed (for this is another town recovering from poorer times), then we returned to the van.

This morning we made it to church. Only minor assistance was needed to dress. This cold weather is quite a bother for her when she needs to wear several layers of clothes, especially coats. Coats and jumpers tend to "stick" to one another which she cannot overcome no matter how hard she tries. I found her sitting on the side of the bed attempting to pull on a cardigan which was bunched around her shoulders, one arm inserted, other hand groping for a sleeve. My attempts to help result in "everything twisted". Then we had to put on an overcoat. She remained seated throughout the entire church service but was able to rise & walk down for communion where we stand rather than kneel as most others do. Back in the pew her tremors became quite strong and 5 minutes later she was unable to stand without assistance when the time came to leave. At home after some soup for lunch she fell asleep in her chair. Shortly before 1pm she came to the door of my dungeon to say she needed to go to bed. I helped her to bed, asking whether I should wake her later. "No" she said, "I'll wake myself later."

Last evening I made a chicken curry somewhat hotter than usual because I used an entire bottle of mild curry paste instead of 4 tablespoons of the stuff as recommended on the side of the bottle. She commented that the curry was warmer than usual. In the past we have wondered whether spicy foods effect her PD symptoms, perhaps resulting in her behavior at the end of church today then followed by extreme sleepiness after lunch. We decided to abstain from curry for several days then have a curry meal and observe any after effects. I made enough curry for another 2 meals.

This weekend we were invited to day visit family intent on cold weather camping at an old silver mining town some 3 hours from here. About 1 hour on bitumen followed by 1 hour of good dirt road then 1 hour of rough dirt road. Mountain country, probably a few creek crossings, nothing too much for the 4WD. I would have enjoyed the trip and the opportunity to photograph the town buildings. Instead I decided she must make the decision to take the trip. After reading information on a website and contemplating the probable architectural qualities of toilet facilities, she decided to stay home. She says I am a bully for forcing her to do things. I will continue to do so, yet I must temper our activities to suit her nervous disposition. I have added an additional grab handle in the 4WD to help her hang on while she believes I am performing acrobatics on the roads. Also a couple of extra handles in the van to help her rise and enter.

Time to peek at her in the bedroom.