Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Monday, October 30, 2006

Chapter 57 - Little to Say

I have lacked motivation to report anything so I'm hoping no one has lost interest in popping in here from time to time. Between the 18th & the 24th there were only 4 visits to this blog. Sorry that I can't write more rivetting material.

She has not needed sleep every afternoon. I think I figured out the problem. Taking last meds for the day at midnight then waking to the alarm next morning at 6am for a Modepar Rapid so that she can shower & dress herself at 7am means she was only sleeping for 6 hours, and that sometimes disturbed. Being too close to the trees to see the forest, this little bit of arithmetic escaped me until I became worried about myself having a slight headache, the sort that twinges when one's head is moved too quickly, day after day. I was about to make an appointment with our GP when it dawned on me that the headaches began in the week following her taking the Modepar Rapid. You can't see the link of course. Well, she prefers me to shower before her because I never put bath mats & such away, thus I had to shower between 6 & 7am, and then I would walk around the village, waking her at around 7am. She rarely needs any assistance in the bathroom now. So lack of night time sleep I believe is the cause of her afternoon tiredness, my headaches and her criticism that I always fall asleep during part of, if not all, of the SBS & ABC news programmes.

And now daylight saving stupidity has temporarily unbalanced her regime. I dressed for church on Sunday morning. At 8:30am she decided that she had better not go. Her meds were out of kilter. Late in the afternoon we supermarketed a trolley full, she pushing most of the time, me pulling a little. At the checkout she went through to sit on a bench seat.

Today we returned to copying old VCR tapes to a more modern medium. Just after lunch I saw (on my own) "Jindabyne", a movie definitely unsuitable for her. Tonight I watched the "4 Corners" programme about dementia while she completed her KYB lesson. Most depressing, the statistics frightening. And we are already a lame duck couple.

Sunday, October 15, 2006

Chapter 56 - Unexpected

Every afternoon except Tuesday's this week has found her so tired after about 2pm that she has gone to bed for a couple of hours sleep. Yet she sleeps well at night. We are even going to bed by 11pm. Going to bed early was initiated by my needing some early nights after returning from our trip. Early in the week she became quite distressed when I said "Time for bed for me" at 10pm. "I'm afraid to stumble about the house on my own" she cried. Her fear decided her to come to bed, tremors and restlessness awaking her for her midnight meds. So we have continued since. The alarm wakes her for 6am meds of Modopar Rapid then she returns to sleep while I breakfast & take a short walk. Around 7am I wake her. And all this past week I have not needed to provide any assistance to dry and dress her after showering (we shower each morning), not even the couple of times when she washed her hair, which usually knocks the stuffing out of her for a bad day.

Today was different. Here I was thinking life was changing for the better. She was dressed for church before I was and seemed about to have a good day. Shortly into the service I noticed her tremors. Nothing new there since by 9:30am her 9am meds (CR Sinemet & Inderal) have not kicked in. No kick in at all so by 10:15 she was shaking enough to rock the pew and make noises with her shoes on the floor, all of which causes self-conscious stress that makes the matter worse. She leaned toward me to whisper "I need to get out of here and walk". Of course, being at the wall end of the pew we had to wait for an opportune moment that came when the congregation stood to pass the peace. Some must have thought we had changed our usually reserved, stay put, behavior when we squeezed passed friends to make our escape. Once outside she wished not to return. "I think it was the pew." she puzzled "The seat was too narrow and too low." I'm quite sure every pew in that church has the same dimensions.

So off to the supermarket where she drove the sticky handled trolley around. She became stressed whenever we paused to long to select articles from the shelves. At the check-out she had to squeeze through to sit on an inconveniently positioned bench seat in the mall. A sharp-eyed but young shop assistant watched her go. After having dented the credit card & enjoyed the exercise of re-packing the trolley, I had to trundle it to where she was seated to help her to her feet.

On Tuesday we celebrated her birthday with friends at the club. No stress, no problems, a pleasant day.

A speech therapist spoke at the PD group at the club on Thursday. Her birthday present arrived that same afternoon, just as she went to bed to sleep. While she quietly slept, I quietly installed it, only having a little difficulty fitting one of the hoses that insisted on cross-threading to dribble water everywhere. The tiles were cold yet pleasant on a hot day. When testing the contraption I squirted myself in the eye.

Return to the present at 1:30pm. I just checked on her; she is sitting watching a TV gardening programme; she tremors. She supports her head in her hand. I ask whether she has pain. "No, I'm just trying to stay awake until 2 o'clock." At 2pm she will take her meds. Then she will go to bed to sleep.

I suspect we have reached a point of change. I hope it's for the better. Perhaps taking the anti-oxidants for many months has had an effect. I hope.

Tuesday, October 10, 2006

Chapter 55 - Return to the Rut

It's her birthday. She woke me near 5:30am to help her out of bed for the loo. I remained awake waiting for the 6am alarm, she returned to sleep. Many chirps from the alarm before she woke. I helped her recline on her right elbow while she sipped her Modepar Rapid prepared last night in a pill bottle. Some extra water needed to be added to swill down the dregs. She slept again while I showered then walked around the village. As has become our habit lately, I woke her at 7am by which time the MR should have licked-in for her to have sufficient movement to have a shower. Today she was unable to move her legs sufficiently to drop them over the side of the bed, so I pulled them over the edge then helped her to a seated position. "I'm as stiff as a board" she said. With fists pushed into the bed forcing her upwards she attempted to stand; failed. More attempts. She moved her bottom further over the edge. She rocked backwards & forwards trying to stand. She was unable to lift her body even though her centre of gravity was well over her legs. If she continued like that she was likely to fall forwards onto her face. So I grasped her hands and raised her. She slipped her feet into her shoes & shuffled to the wardrobe. Once vertical, her movements were sluggish. After preparing her clothes & things she came to the door of my dungeon to say that she couldn't yet shower, so took a little breakfast. I just checked; she is showering & washing her hair. That will have a debilitating effect on her; good days are not hair washing days.

On Saturday our friends suggested we all go to one of the local pubs for lunch to celebrate her birthday. We agreed. Yesterday she decided she preferred the Club so she could have a roast dinner, although I know she is inclined to avoid unknown eating places likely to be crowded or cramped and she is familiar with the layout at the Club.

Since returning from our van trip last Friday she has been very tired, frequently sleeping in her chair. Yesterday afternoon after I went to visit a friend in the Village she slept on her bed for over an hour. (She just called my name on the CB radio; she had showered, washed her hair, dried but was unable to put on her underclothes, so needed help.) Our trip through north central towns in the state to the opal mining town and return lasted 3 weeks. We always stayed at least two nights and always travelled less than 300km each day. That way we both had a relaxed time away. She mostly used the shower & toilet facilities in our van because most van parks either lacked or had unsatisfactory disabled facilities (creators of signs should label such facilities "disabled persons" showers & toilets instead of suggesting that the equipment is out of order). Her decision to take MR at 6 and rise at 7 fitted in well with our travels and now that we are home has "encouraged" me to rise early rather than lay in bed until 9 or so. Unfortunately, I flake out between 10 & 11pm, leaving her up until she takes her midnight meds.

An amazing incident while we were away. We were near the countryside described in one of the important books I have read, titled "A Million Wild Acres". I told our friends (they travelled with us but came home a couple of days earlier) about the book but the author's name escaped me. One of those times when my mind was unable to search its index system. Most annoying. A day or so later, completely out of the blue, she said "That author. Eric Rolls!" Now why should she remember, let alone know the name? I think the book was written in 1981 or thereabouts and I bought & read it within a year or two. I bought several more of Rolls' later books, the last more than 10 years ago. She never read any of them. Neurologists have said her cognitive skills are unimpaired (and I know that because of her ability with the weekly puzzle magazines) and now this example of memory. I am alarmed at my poor retention of recent memories and frequent inability to recall things. If only she was able to move her body easily.

I am not one to bother about parking our van neatly and squarely or level. She is bothered by her bed not being level, or rather, level to her senses. For even when the van is dead level according to the bubble level on the A-frame she may be restless, unable to fall asleep, because she senses that her bed is not level. A few days into our trip I bought a couple of pieces of 12x40mm pine to pack beneath one side of her bed so that she tended to roll toward the wall of the van (the platform that supports the mattress is hinged on the wall side). Strangely, some nights she needed one or no pieces beneath the bed, even though the van had not moved. After our first night home she mentioned that she had felt more comfortable in the van because she was able to rest against the van wall. I was about to re-arrange the bedroom so that she would be hard against the wall, but she decided that bed-making would be too difficult. No further problems about this.

I ordered her birthday present yesterday. It won't arrive until week's end.