Chapter 52 - An Interrupted Night

Yesterday afternoon both of us at the tax accountant's to have confirmed that we really don't need to complete a tax return. Our pitiable income would get under the radar screen. Although in light of our arrangements this year with our superannuation fund we decided to pay a few dollars to ensure that everything is honky-dory. We were in a small broom cupboard sized office for about an hour from 2pm, so she was rather tensed from attempting to control her shakes in front of a stranger, a woman tax accountant that never stopped talking; she belted keyboard and scribbled paper in between words. After we left I thought a coffee at the Club was a useful fill-in since we were due at the caring physician (C.P.) within the hour. However, his receptionist told me he had almost caught up to his schedule, so come back about 4:30pm. We went home for a rest stop then returned at 4:30 then patiently waited until 5:30pm; she attempting to control her shakes in a waiting room full of patients. We had prepared a list of some 20 matters of interest for him to refer to as we tried to give a picture of the effects of discontinuation of the StillNox sleeping pills; and only 1/2 a pill each night at that, prescribed by him. I suspect other variables as well. He declared that perhaps she should not take any more of those but perhaps take another of the Dothep anti-depressant she has taken each night for at least a year, for they are good for relaxation for PD patients. I believe that she is now very much under-medicated. C.P. made no comment when I made suggestions along that line. He stated that she would break her neck on a tread-mill exercise machine; something we wondered about for exercise. He gave her the usual thorough physical examination. So we left his rooms at 6:30pm, good value for money compared to other doctors, and half an hour beyond her medication time.

At midnight her usual Sinemet CR and Inderel on going to bed, very stiff, shaking legs. Unable to sleep, legs rigid, she rose to walk around the dining table at 1am, 2am, 3am for 10 minutes or so each time before returning to bed. She remained up between 3:30am & 4am. Each time she went to the loo, legs shaking & aching. When in bed she held the bed pole very tightly with her right hand for fear of falling out of bed. At last sleep then the alarm woke both of us at 6am for meds. By 7am she had to get up, walked, then watched breakfast junk TV, to bed & sleep at 8:30am. Woke next at 10:30 for the loo. Finally at 12 noon she woke, called me on the radio, had a shower & dressed. A quiet afternoon completing puzzles before a walk with me to the hall to collect mail. I left her on her own this evening for a couple of hours while I went to a meeting.

At 10:30pm she poked her head in; she was on her way to bed. I'm off now too.

Chapter 51 - Dancing in the Dark

I woke to find her sitting on the side of her bed, shoes on her feet, needing to walk the house. Before dawn, I don't remember the time. Her legs were frozen (in PD terms). Out of bed myself I helped her stand. We stood there between our two beds, arms around each other; lovers in a lane. She was unable to walk; both feet stuck to the floor. I swayed her a little, I twisted her body a little, attempting to initiate movement in her legs. "I'm going to fall. I'm too heavy for you to support" she cried. I wanted her to turn for her to get back into bed. I tapped her foot with mine. No reaction. A hesitant dancer. "I can't connect with my feet." Some more swaying and tapping. One foot came free; I was almost sure I heard the sound of a foot being pulled out of a bog. Gradually we turned, one faltering step after another. I struggled to raise her right knee onto her bed (this is the way she usually does it), her leg was almost rigid, afraid to leave the floor. "I still have my shoes on" as I toppled her onto her bed then removed them. "My legs are straight." Both of her legs were "springy" (I can't think of a better word) as I attempted to bend them. Just like a thin branch on a tree; able to be bent yet on release returns to its former shape. After several attempts I was able to position both legs suitable for her comfort.

This last week she has been very stiff. She calls frequently for assistance to rise from a chair. Last Monday - Tuesday she developed a pain in her left groin and into her hip. Late Tuesday afternoon, thinking a walk around the village might help, we set off sedately, slowing as we completed the circle back to the house. I was afraid she may not make it back. We called our Bowen lady who said to come straight away. Thankfully she is so close and readily available. Over the next few days a little soreness remained. Just think, the average GP would have prescribed pain killers.

Last evening I found some down-loadable PD videos and was struggling with the non-intuitive download procedures of Google's video viewer when she appeared distraught at my dungeon door. She had been calling me on the CB for help to rise from her chair. I had not heard over the noises coming from the speakers. Since the material was PD related I did not feel as guilty as if I had been listening to folk music from Radio Ulster. She had scrambled to her feet by using the latch on the sliding door near the chair where she most often sits, but that had taken a lot of effort and stress.

She is stopping the StillNox, not to be used long term for sleep. Last night her feet were very cold going to bed, needed a pair of my socks and her little heated seed pillow. I think she needs more PD meds, she remembers panic attacks of a year ago. She is attempting to limit the regular anti-depressant prescribed ages ago by a neurologist, mainly to help her sleep he had said. A certain government department requires a medical report on her condition by next week so we have an appointment with her caring physician later this week when we can discuss all these matters. Not a neurologist but he listens and cares.

Chapter 50 - Lost & Found

The 6 o'clock alarm woke us to the darkness. I touched my bedside lamp. "Do you need help?" I asked as she attempted to raise herself slightly on one elbow. "No - I'm alright" as she opened her little bottle of pills prepared last night at a bed-time ritual. She struggled with Bill's XP water bottle. "I've dropped a pill." I get up. Scramble around on the floor. Look in her bed clothes. "What colour was it?" "It was a vitamin C." "Vitamin C? I thought you took the vitamins at breakfast?" Apparently she has been taking four 500mg vitamin C's a day. Long ago I stopped recording the vitamins she has been taking for more than 6 months and only pay attention to the officially prescribed chemicals. As we both hunt for the pill she says "I'll have to get up now anyway. It has disturbed me too much." As I swing her legs over the side of the bed and raise her to put her shoes on, the offending pill falls to the floor. "Be careful Dear" I call as she almost runs on her toes in very small steps towards the bathroom. Her gait is showing signs.

Yesterday after I returned from assisting someone with a technical problem she was concerned that she had taken her noon time meds with her breakfast at mid-morning, thinking they were the other vitamins she has been taking. She has never muddled her pills before. A quandary - had she really taken the meds early or had she not prepared them last night? As the afternoon came she showed no extreme signs of "being off" so the conclusion was that the meds had been taken early.

She has decided to wean herself of the anti-depressant Dothep 25 prescribed over a year ago by the neurologist in the hot-air town to help her sleep. She will take one every second night. A good idea. The new mattress is helping her a lot. Sleeping better. I suspect she is losing her fear of going to bed. She has much less pain, although there has been a day or two when there have been pains "inside" her left leg. Looking back through my notes I have not helped her dry after a shower or helped her dress (except maybe assistance with a coat) for over a week.

Our local PD group met at the Club last Thursday. We were the first at the room set aside for us. "The lay out is better" she said, "It's not as cramped." I had her sit closest to the door at the corner of the table where she feels less cramped. The barrier of the table's edge bothers her. After the meeting our friends from hot-air town had lunch with us at the Club, then a slow walk about town then coffee back at our place. A wearying day for her, not used to socialising for so long.

A strange effect on Friday. Her 6pm meds acted very quickly, her legs became rigid. She thought she was over-medicated with too much dopamine, as she would only too clearly remember from her horror period a year ago now. This was prior to the muddle with her midday meds on Saturday.

Her nose was very stuffy on Tuesday & Wednesday to the extent that I took notice of the number of times she needed to blow & wipe her nose, more a congestion in her sinuses, but not a cold. The blowing caused slight bleeding on Wednesday night. By Thursday the problem cleared so I suppose a slight cold.

The day we collected the new mattress she also bought some slippery material to make herself some new sheets. That was on 27th July. Then we went away for a couple of days. Since we returned she has continued to sleep on the slippery sleeping bag. Last Monday 7th August she was able to cope with cutting the new material into two pieces, then a couple of days later she partially hemmed one piece. She finds difficulty motivating herself. Ages since she has embroidered anything.

Yesterday she enjoyed sitting near our front door in the sunshine. Things lost, some found.

She calls on the CB "Have you had a shower yet?"

Chapter 49 - Strange Things

Did I mention that on last Monday at her Aunt's place she experienced a lot of tremor (not really visible to outsiders) and what I call "heart flutters"? Well, yesterday after she rose at noon the same symptoms developed. All afternoon & into the evening. A headache began at the same time she later reported to me (I find she tends to not mention "minor" aches & pains unless they become "bad"), peaked around 9:30pm when I convinced her to take a couple of Tylenol, so by 10pm the headache was receding. At 5:30pm she said she felt "flushed", had a little colour but was not hot to the touch. In the evening I attended a meeting for about 2 hours and on my return she was somewhat subdued. I suggested we have an early night, which advice I followed, yet she lingered until about 11pm. We both slept beyond midnight so her meds were taken at a quarter to one but no Stillnox. She later rose twice without me waking. Then at 4am she got out of bed on the window side of her bed and found herself "stuck". There is little room to move on that side. She woke me. I had to raise her legs & rotate her on her bottom seated on the bed so that she faced the other way, then raise her to her feet. She told me she had had little sleep, had been shaky the whole time, toes curling, hot & sweaty. She was cool to my touch but her forehead was clammy. After a few minutes back in bed she needed to walk the house to unwind. The experience had stressed her. By 4:30 am she was able to get herself back into bed. The alarm woke us for her 7am meds. The sheet & doona on her bed were in tangles so I remade the bed for her. Before she dozed off I told her I will wake her at 9am, an attempt to re-sync her sleeping times. I took a walk around the village, she was awake on my return. I breakfasted & read mail. Now time to get her up for hopefully a better day.

She really wanted to stay in bed. "I've only just been in a deep sleep." "Any aches & pains?". "None." "No neck pains? Back? Hip?", I insist. She replies, "None. But it has cost $1200."

"Will you have breakfast or a shower first?" I ask as she totters along between our beds. "A shower while I can still move."

Another day.

Chapter 48 - A Short Holiday

I tip-toed into the bedroom to check on her a little while ago; as I have all through the morning. She has been asleep since 9:15 am when she returned to bed after rising three quarters of an hour earlier. No breakfast. She was able to lay on her back on the new mattress, but I found her both on her left & right sides during the morning so she has been able to move readily on the slippery surface of the sleeping bag used as a sheet. She has been unable to make a sheet from the material bought last Friday, partly because of her condition, partly because we drove north on Sunday morning. During the trip we broached the subject about her condition forcing us to be in close proximity to each other at all times, not far apart. Perhaps we had been avoiding acknowledging this fact. She needs help close at hand to help her in & out of bed during the night, rising from chairs during the day and an arm to assist with walking (she finds a helping arm more satisfactory than her walker which encourages stooping). We wonder how she will cope should I be "laid-up" for any reason. I suggest a little more medication may help, although that reminds us of the terror of over-medication, diskynesia and trips to emergency.

When she sleeps for so long I become uneasy. I quietly inspect her, not wishing to wake her, observe her breathing, hoping she is just catching up with lack of sleep. And just as I began this blurb she poked her head in the door, bright as a button. Medication time at noon, about to have a shower.

Our visits to friends, aunt & cousin on Sunday, Monday & Tuesday were good for her. Not the travelling during which she sits rigidly, often holding the grab bar on the dash, especially in thick traffic. She had booked us a room with disabled facilities at the motel where we stayed. She used the double bed while I had the single, the mattress of which was matured concrete. My hips ached after the first night, so I doubt the double bed did her any good either. She yearned to return to her new mattress used for only two nights before we went north. The gift of a bottle of bubbly in the motel fridge we brought home with us; now if it had been red I would have left the empty bottle behind. Two $30 vouchers for the Chinese restaurant next door were exchanged for an excellent meal & a good chardonnay (it was a "white" night) plus an additional $34. She finds staying in a motel preferable these days, where she has easy access to the toilet, is able to roam without disturbing a household, able to delay going to bed till 1am, able to sleep after morning meds until late morning.

Her head in the door again "The clothes need to be taken out of the washing machine." She has showered and dressed during the time her meds should be ineffective, unable to shower & dress. Yesterday she often complained that her meds were not working at all.

To the clothes line.