Progression Two

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

Monday, March 30, 2009

Chapter 162 - Just a Meds Update

Last Friday she decided she needed more medication. Just needs more help. I am unable to explain why. On our gradual slope to debility I notice that she hardly ever needs help rising from chairs (unless she has sunk into someone else's lounge, which always tries to avoid), or rising from the loo, she has been sleeping soundly, mostly holds my arm should we walk anywhere and if she visits a neighbour sometimes she relies on her walker and in super markets she always pushes the trolley, usually does a piece of machine embroidery each day, completes each week but never wins anything useful from her two "puzzle" magazines, rarely needs shower assistance since her leg healed. Yet she shuffles with small steps about the house. When we walk together my striding forces her to step out, making her short of breath. Her only urgencies I remember from the last few weeks has been when, in a lather of perspiration (being a lady) she has called me on the CB because her blouse or nightie has stuck around her shoulders or her trousers have stuck around her legs or bottom.

So on Saturday morning she increased her Sifrol from 500mg to 1 gram. So her daily meds are now 6am 1gm S 1CR 12noon 1gm S 1CR 6pm 500mg S 1CR & 12 midnight (approx when she wakes) 1CR. No changes have been commented upon or noticed in the two days since.

Some concern 2 weeks ago when she noticed that a 1cm or so blemish that had been a beige colour on the opposite side of her left leg to the melanoma site had suddenly turned very dark. And there was a small lump there. I thought it looked like a blood blister but we decided to make an appointment with the GP. Days later the darkness had begun to fade and he obtained a reading of 5 on a scale of 12 with his mole ultra-violet light machine which only detected blood beneath the skin. So no fears about that. However, since the melanoma problem had disorganised her annual checks, last Friday she had a blood test about which she was quite pleased that the nurse had had no difficulty at all taking the sample. Usually there is a lot of trouble finding the vein. She changed her mind once back in the truck when she found blood seeping from beneath the small circular band aid. the seepage ceased by the time we arrived home after visiting the scanning place to make an appointment to scan her kidneys (a check up on her kidney cancer since she wanted to avoid dye injections etc). Then she was concerned that the blood that seeped was very pale.

Tuesday, March 24, 2009

Chapter 161 - Almost 50 Years On

Last week on Friday I needed to visit my eye man in Doctor's Street in Big Smoke. I suggested she come with me by train, for us to experiment suburban trains in the city. She has a real fear of the gap between platform and train. There were no problems for her boarding at our town or alighting at the city end. Strange - perhaps the gaps were narrow. At the city end I found the lifts at the platforms so that she could avoid stairs and escalators to arrive at the lower concourse. After a visit to a disabled toilet we decided to walk all the way, must have been a couple of kilometers, to the doctor's. Along the way, numerous rest stops, a coffee, seats in Jeckyll Park and then lunch. A small sentimental detour after the coffee along the street that bisects the park; to the downhill slope at the corner where the museum is. For that is where I first noticed her 50 years ago this coming August. I was on an errand from the studios into the city and she (I found out later) was on her way to typing classes about 9am that morning. I had been vaguely aware of her because I had recently begun attending the church where her family worshipped. She came down the footpath towards me; dressed in an avocado coloured twin set (I doubt that colour was known then) and a narrow tartan skirt. Small high heels. Wow! She had a way of walking, heavily placing each foot, each hip accentuating the motion, yet not waddling or wobbling - she doesn't walk that way anymore. I think I said "hello" or similar. Then we were both lost in the crowd. I wondered where she had been going, and looked for her during the next few days, unsuccessfully. That brief encounter, that she now barely remembers, changed our lives forever. Last week after standing on that corner once again for the first time since, we returned into the park and remembered our contacts and bonding during the following weeks after that fateful encounter so long ago.

After my visit to the doctor and several eye tests, we only just had time to return to the country terminus so we walked quickly down hill to one of the inner city stations. She froze attempting to step onto the suburban train; refused to move across the gap; a woman gave a hand from the platform while I helped from the carriage doorway. After the train moved off there was an announcement that "the two women who had held the doors open would be kicked off the train if they did it again". She assumed the message was directed at us; I didn't think so at the time, but if it was I would enjoy being removed from a train by some thick-skulled security moron because of my wife's disability. Getting off at the country terminus gave little trouble.

At the country station we moved to where the front carriages would be because in our experience the train is divided at a station half way to our town. Consternation when an announcement told the waiting reasonably sized football crowd that the train was late and there were to be only two carriages! When this palace on rails arrived we stood back from the bun rush until we were able to make an elegant entrance. She was almost in a panic, shied away like a farm animal not wishing to enter through a gate, a couple of railway security types helped while I encouraged her from the inside; I was about to give up by the time she made the step. We jammed into what must have been the only remaining seats; not together. By the time the train left the southern edges of Big Smoke the carriages were as congested as a suburban peak hour commuter train. Back in our town where the train terminated she was able to alight without problem. In later discussion she said that the time pressure of having to step across a gap onto a train that was only stationary for about 90 seconds, combined with the gap between platform and train was what spooked her. I am thinking of perhaps a small mat to cover the gap should we attempt another trip on suburban trains.

The changes 50 years make. And it's not so long ago.

Sunday, March 15, 2009

Chapter 160 - A Hurtful Question

Earlier in the week she made comment about a new retirement village on the very most southern rolling country edge of Big Smoke. Before we moved to our present village we visited another by the same company in the southern suburbs that had the same emphasis on "55's lifestyle" but stupidly had bedrooms upstairs. Friends of ours in the city decided they should inspect the new development with us.

The 2 hour drive up the highway did not stress her. We stopped halfway for a little junk food. Her tremors bothered her when we arrived 40 minutes after her noon pills and even by the time our friends arrived 40 minutes after our agreed meeting time (they became lost) she was still trembling a lot. Rather than sitting, she kept saying that she needed to walk about the village to relieve her shakes.

We were most impressed with the villas. Resident couples acted as guides in those open for inspection. As expected, they only responded with pleasantry when they were asked questions (to be expected) and we were always referred to the management for hard answers, those alluding to costs and the like. When she asked one gentleman why there were no hand rails in the bathrooms she was assured there were until he was embarrassed to find the villa he was demonstrating lacked these attachments. We later spoke to another bloke who said rails were fitted after they moved into their place. Obviously a marketing ploy not to discourage the fit virile 55 year olds with symbols of decrepitude. If we had the funds we would move to such a village just for the future benefit of the "high care" area where the large single and double rooms are typical of an expensive private hospital. Insufficient room for half a dozen sewing & embroidery machines and 4 computers plus peripherals of course.

One of the nursing staff showing us the high care areas committed the unpardonable sin - she asked me whether I was the "son". Not hearing the woman distinctly the first time I said "Sorry?" and the question was repeated loud enough for Her to hear. I replied "I know you're just trying to chat me up, but I'm the husband". Some confusion & hilarity resulted but the damage was done.

The marketing executive was happy to quote figures, both money and facts, but after doing his duty lost interest in us as other visitors attracted his attention from the doorway of his office. We may not have fitted his vision of "55's lifestyle" residents. Printed price lists were not offered.

Later, while walking about the village, I realised the rear boundary fence of the village was about 10 metres from the rails of the main southern railway line. A resident whose villa backed onto the line assured me they hardly ever heard the trains, only occasionally.

After leaving the place I realise what had made me feel slightly uncomfortable about it - the smiling, polite and neat residents that acted as guides to the units on show. Their happily drugged demeanour reminded me of those characters one sees in TV commercials and the pictures in glossy mags advertising "over 55's lifestyle" housing, insurance, sports clubs etc where the couples wear white sports clothes and carry the odd sporting implement or two against a background of coiffured lawns & gardens. Male hair is silver and the female a soft dyed blonde. And their comments were appropriate to nice people at a charismatic church, "we are happy, the best decision we ever made, we are almost in heaven, we would love to have you join us but please speak to the Manager about sordid details."

We completed our day out by having coffees at the town where we had a van a couple of Xmases ago, one of the towns that serves the retirement village, some 10-12 kms away along a winding narrow country road.

The melanoma crater on her left leg is entirely healed now. Unfortunately, yesterday morning before we left she noticed that a large blemish on the opposite side of the same leg (it has been there for years) had a large bruised blood colouring to half the area and I could feel a bump there. Perhaps she banged the area somehow and it is a blood blister. Maybe not. I took photographs. Tomorrow an appointment with the doctor.

Sunday, March 08, 2009

Chapter 159 - Craftiness

After stitching many, perhaps a dozen or two, embroidery designs on felt and including a few in home made birthday cards, she has graduated to making eye glass cases "in-the-hoop" to standard layout designs. You may have no concept of what I am describing, but be assured that a degree of manual dexterity is required to cut out templates, hoop layers of fabric & stabiliser, some spray gluing and final assembly. Although the design is somewhat simpler than a case I once made an average job of in a workshop, her work has been excellent. She had me enlarge the original design she had been given to a more suitable size for our glasses and now she seems to be on a roll. From another supplied design she cross-stitched a front panel and keeps reminding me to digitise the other parts so that she can construct another version. Birthday presents everyone?

On Friday she complained that her left arm and eye had become very itchy. Thinking back to when I conducted an experiment to prove that 15 minutes in bright sunshine was more than enough to make her skin itch like the dickens, and having learnt that a friend has "seizures" when beneath supermarket lighting, it dawned on her that she had been using the soft light from a fluorescent lamp to brighten the workspace around her embroidery machine. Yesterday that lamp was replaced with another using blue "daylight" incandescent bulbs. The itches have gone! Makes me wonder how much subtle irritation may be caused by those small energy efficient lamps we have been encouraged to use throughout our houses in place of the old incandescent types, which some bureaucratic idiot has probably banned, since I believe they are no longer manufactured. Our friend around the corner is re-fitting the old type about their house. I wonder whether interesting side effects of the newer lighting were researched before introducing the new product on the unsuspecting public? In light (no pun intended) of the current world financial crisis we may soon return to candles which probably produce carcinogens and carbon monoxide anyway.

She is not having enough exercise. Even though her leg wound is completely healed now, she has not returned to her earlier daily exercise activities. The high technology solution that I ordered on-line has still not been delivered so that now I could have bought the stuff locally at about the same price. She is always out of breath whenever I tow her around our village on a late night stroll.

Sunday, March 01, 2009

Chapter 158 - A Weekend Away

Rather than me travelling to Big Smoke by train on Friday 20th on my own for a check-up on my left eye, she decided we should stay the weekend at a motel of her choosing near the river at the bottom of the Mountains. From there she was to accompany me by suburban train into the city.

By the Thursday when we drove from home her lower back was giving her severe discomfort and pain. In attempting to identify the cause I learnt that she had discontinued the Inderal she has been taking for years. This had originally been prescribed by the Three Piece Suit years ago when we returned "home" down south after 10 years in other more westward places. Although several medical professionals had queried why she took Inderal, none had ever told her to stop taking it although they were happy to modify her other meds. What really frightened her was the anaesthetist attending her at her recent melanoma operation telling her that Inderal was "dangerous". No other comment was made & of course, no clarification was asked for, I have since found reference to Inderal being used to minimise the .memories of persons suffering post traumatic stress problems, although she has a better memory than I do so doesn't seem to have been harmed, although that side effect of the stuff is frightening. Inderal was originally prescribed for restless leg. Anyway, she has not taken Inderal again and her PD symptoms have not changed now over the fortnight since she stopped,

In hindsight, I suspect that her enthusiasm for taking up machine embroidery again in the week prior to our weekend away may have caused her lower back & leg pains. Too much sitting, hunched over the machine or PC while seated on an office chair, rather than her special ergonomic stool combined with no exercise at all since her melanoma operation 4 months ago. So we are attempting to correct this with some walking. Which began on the Thursday evening by walking from the motel to the suburban railway station to see whether she could accompany me into the city the next day. Fortunately we did so, because both lifts used to gain access to the the centre city bound platform, were out of order, had been vandalised the ticket office person told us. The stairs up and over the rail tracks were too long & steep for her to negotiate, so next day I made my appointment on my own while she relaxed at the motel by reading novels. That evening we walked about 1.5km to and from a restaurant for our 8 year old granddaughter's birthday.

On the Saturday, on the way to the wider family birthday party (no wonder the youngest generation develop into party animals!) we detoured into an outlet of her favourite brand of rag shop where we encountered a very helpful sales person. I dread them because their skills lay in the ability to encourage her to buy twice as much as she would without assistance. She says she enjoys their help because it saves her the trouble of fumbling through the racks to find her sizes.

Sunday found us in another shop where she bought numerous metres of pretty satins to be made into slinky nighties. "In case I need to go to hospital again" she told me, although I am sure there was no twinkle in either of my eyes.

So apart from her back & leg pains, she had an enjoyable weekend. On the way there we saw her Ugly Sisters (lunch with one, the other visited). The disabled room at the motel was comfortable for her, good beds, appropriate rails in the bathroom which had a dangerous small step at the door that she was careful to avoid.

Her leg pains were strange - sharp shooting pains in both lower legs, that fade as the day progresses. We try to walk each evening and by week's end she indicated that the pain was reducing. Except that yesterday she stitched a large design so this morning at 6am the pain was worse. I don't wish to discourage her sewing so there will need to be more exercise, a matter of returning to the routine she had following her satisfactory visits to the physio last year.

One surprising incident at her regular Monday physio group at the hospital - usually she can throw the majority of 10 quoits onto a peg, but last week she only managed one.

Last night we attended a musical evening at our Village hall. She enjoyed the time there. I remembered this morning that she was sitting sideways to the performers so was twisted to watch them. And that would not have helped her back. I must watch that sort of thing.