Chapter 90 - A Slow Week & a Bit

After a day of recovery from the friend's birthday party we were off to the shopping centre on the outskirts of Hot Air City to unsuccessfully buy fittings to hang curtains across our garage door. The garage has become my embroidery workshop. I bought a hedge trimmer instead at the enormous hardware store. I had convinced her to ride her scooter about the place so when we came out from there with some further persuasion she agreed to ride the scooter a few hundred yards along an unmade footpath to the remainder of the shopping centre. Along the path at one point the ground sloped to the right and suddenly the scooter turned at right angles heading for the roadway. "Why the hell did you do that?" I yelled as I ran after her. "It just went that way because of the slope." Frightening, on what was really not much of a slope. After touring the shops, buying stuff and a coffee we returned home.

Next day after needing help drying & dressing she felt chilly & light headed. Then she said her head was "pressing into" her shoulders. A headache. Her arms were very itchy & red, reminding us that yesterday she had driven the scooter around in bright sunshine without covering over her arms. You may remember (perhaps I didn't record the incident in a blog) that a year or so ago she suddenly developed a heightened sensitivity to sunlight; I conducted an experiment by having her sit in the sunlight with one arm covered & the other not; the uncovered arm became extremely itchy after 20 minutes. Her doctor was not overly concerned; prescribed high density sun screen. Anyway, she felt "wobbly" and needed bed for two hours. After waking we went to see "Mr Bean on Holiday" with which she was not impressed although it was her choice.

In church on Sunday her tremors became bad enough for her not to go up for communion. During this last week she has needed almost daily application of the TENS machine to her lower back. Then on Thursday we were taken by friends on a day trip to a town 80 kms away then to a reservoir. While in the town she walked completely unaided for about an hour before we had lunch at the local club. Since then she has complained of much soreness in her calf muscles of her legs, requiring application of TENS there for the first time. Last night I thought a walk may be helpful but she was only able to go about 50 metres before we had to turn back and applied the TENS again. Her legs seem better this morning.

After several months of waiting she now has an appointment to be checked by the community health physio next Tuesday. Watch this space.

Chapter 89 - A Night Out

She didn't wish to go. She wanted me to go on my own, and that I want to avoid as it seems to me as a first step away.

Some weeks ago we were invited to a birthday celebration for an 80 year old friend, to be held last evening at a local restaurant. At a starting time of 7pm, her scheduled meds time. We discussed attending/not attending almost on a daily basis. Several times we went looking for the restaurant without success because we lacked the address details & did not wish to ask & raise awkward questions. We wanted to inspect the place to see how cramped it was, how flimsy was the seating.

On Tuesday we concluded we would not attend. Then while she was completing a little embroidery for the friend's wife (a delayed birthday present) the lady visited, then the other friend who was organising the party popped in as well. I muttered that we were not attending the party. The ladies were disappointed. The organiser, a widow, said that her crippled husband wheel chair bound never had problems at the restaurant in question. We decided to go.

Then yesterday the birthday friend rang to say they would pick us up in their car. I suspect this was to guard against the possibility that he & I may have consumed too much merlot. She was then in turmoil that she would not be able to get into & out of their car. Remember that we have a 4WD into which she can pull herself with some assistance, a car tends to be more difficult for her. By 5pm she was in tears, regretting her decision to go. I convinced her to take her 7pm meds at 6pm.

Our friends called for us at 6:45pm. I collected the black plastic sheet from our 4WD for her to sit on; it helps her slide in & out. After we arrived at the restaurant our friend said "You are doing well, hardly a shake." (or words to that effect) I muttered "If only shaking was her only problem." Once inside the restaurant an enormous sense of relief - solid, wrap around chairs at small firm tables arranged into a square to seat perhaps 20 persons in a private room. She was able to sit at a corner where her right hand side was not crowded, for I sat on her right hand side but around the corner of the table. Sound complicated? The food was fantastic (except servings were unusually large!) and courses were separated by plenty of time. I ate far too much, finishing with sticky date pudding because it was on the menu. The mud birthday cake was far in excess to requirements at the end of the party. She was able to enjoy a protein free warm pumpkin salad for her main course; I didn't look too closely.

Back home we both went to bed feeling somewhat uncomfortable, myself more so. She had a very bad night; restless, waking and sometime before 5am I connected the TENS machine to her lower back to relieve the pains going down her legs. After her 6am meds I suggested we sleep through, not shower till well after her 9am meds had kicked in. So around 10am she rose & showered.

She called my name on the CB, by the hollow sound of her voice I could tell she was in the bathroom. I hurried to her to find her dripping wet bent over in the bathroom. She was unable to dry herself; she clung to a grab rail while I rubbed her down all over. Then holding her I walked backwards into our bedroom where I dressed her. After that she became sufficiently mobile to move under her own steam. Even had breakfast. I avoided having any at all.

She wants no lunch. Sits shaking in her chair in front of the TV doing her puzzle magazines. The penalties of having a good evening, once in a while or two.

Chapter 88 - A Moment of Enlightenment

This morning I experienced a revelation. This morning so many pieces fell into place. This morning I realised how she may feel in motion, in contact, in collision, in orientation. All those quirky sensations; going too fast, things not level, surfaces sloping, objects too close, spaces too cluttered, spaces too confined. In almost 16 years I have never looked at all the pieces as a whole. Until this morning.

Her reticence to make use of her scooter in the manner she dreamed before we bought it has been bothering me; why won't she use it? why won't she take it onto our village bus twice a week for shopping trips? why does she still want to supermarket shop (if at all) during off-peak hours? why won't she drive the thing into shops? around the malls? along the strip shopping of our main street? Where is the Independence that she dreamed of?

This morning, prompted by all the clues above I searched on "spatial disorientation parkinson" and received the small number of 27,200 hits. In the first ten some academic waffle, then "Resources - The shopping experience: Is it really fun?" at

http://www.brisinst.org.au/resources/brisbane_institute_adkins_smith_shop.html

Please read it when you have time. Although the article speaks about the negative aspects of supermarket design I can identify that it describes how she must react to motion, congestion, moving objects, dimensions in all circumstances.

I have treated her problems as whims, new experience discomforts, shyness, eccentricities and any other reaction to be expected from a "normal" person. Do the people in suits who prescribe pills understand these things? If so I wish we had been advised; perhaps we were, yet not understood.

We know that stress aggravates her PD symptoms. She is stressed by the following situations that readily come to mind; roundabouts, my driving too close to other vehicles, confined within cars allowing her no leg room, her bed must seem to be level, her bed must be square to the wall, bed clothes which have slipped off the bed onto the floor must be picked up for her to walk, people & objects approaching quickly, walking through narrow aisles in shops, entering clothes shops over-filled with display racks, confined toilet rooms in motels & many homes, overly large toilet rooms lacking suitable grab rails, stairs & steps, unfamiliar homes, frail chairs, chairs without arms, deep soft lounges, congested restaurants, irregular walking surfaces, some patterned tile floors.

Today we attended our local PD Support Group at which people from the big city up north spoke about PD symptoms & issues. Mainly for the benefit of recent diagnosees. All others in the room had been diagnosed in the last 5 years. As someone said "Does he want us all to become hypochondriacs?" I think that's humorous in a gathering of Parkies & their carers! She was diagnosed in 1991 (perhaps 1990?). I feel we know enough about symptoms, yet do we really? We do need to know how to deal with them.

I think I'll suggest a walk around our village.

Chapter 87 - Freedom

Last Friday we attended the fish & chip dinner at our local hall; she drove her scooter, I walked beside. Her face showed concern, perhaps fear, when she realised that she needed to navigate between tables & chairs to reach the table where she wanted to sit. Once in position she was able to relax, enjoying the evening while remaining seated in the scooter. Just as she had often described her use of a scooter before we bought one, several months ago.

Yesterday we drove to her favourite rag shop in the border town near the hot air city. We walked inside the shop; she would not take the scooter, perhaps it is a little congested. After a light lunch I proposed scootering around a big department store, as she had dreamed of doing in pre-scooter days. "Let's go home" she said. I decided that the new "factory outlet" shoe & clothing complex near the airport was an ideal place for her to practice scootering. She said nothing, but circumnavigated the place, chatted to a security guard while I rummaged in a book shop - yes, one has opened here but only contains remaindered stuff on special, nothing of which interested me.

Last night, too close to medication time, we consumed scraps of cheese & dips lurking in the fridge. After falling asleep several times in front of the TV I went to bed early. In the dark of early morning she called me "I need help, my legs won't move, they are stuck together." I pulled a stiff pair of legs over the edge of her bed, she tilted upwards to a seated position. Found her shoes (she needs footwear to be able to walk to the bathroom) and once upright she was able to shuffle away after asking for her torch, the little LED model I bought for her when she was at that clinic down south. We don't turn on the lights for these short walks in the dark. The torch light, wobbling from her slight tremor across the floor in front of her, seems to aid in synchronising her steps. She arrives back at her bedside before me (we have our own little problems), fists pressing down on the bed as she attempts to raise her right knee in slow motion. When I am up I bend the leg slightly until she overbalances forward onto the bed then pull up the doona for her; if I am asleep (often she does not wake me) she must take much longer to get back into bed. In the dark of this morning I lay wake solving the world's problems for what seemed to be hours then to be woken by the alarm for her first med at 6am. She woke me "Are you having a shower?" around 8am when I really needed to remain asleep, but we were already running an hour late. Her day is much better when we kick off the day around 7am. After showering she emerged from the bathroom saying that her back was "going". The TENS machine to the rescue once again.

The freedom offered by her scooter is yet to eventuate. Her fear of hitting someone or something causes stop-start motion unless the way ahead is clear for 20 metres or more. I suspect her right thumb used on the forward control gives her pain, so I may need to modify the controls for left handed use.

Chapter 86 - So Easy

Last night we were to bed late; more like months ago. She has had trouble for a few days aligning a two part embroidery to stitch correctly. Her machine needed a trip to a local sewing machine shop (mine went along for a similar adjustment as well) and that corrected part of the problem but we still had to fiddle to jog the designs together. Yesterday she stitched the first half, I helped align the second half then shortly afterwards a thread tangle caused some very tight stitching. We both attempted to un-pick the bad stitches, gave up, yet later in the evening she attacked it again to clean the design quite well of rogue stitches, then proceeded towards completion. Towards midnight she had removed the hoop for some reason and was not able to re-fit it. Quite stressed by now, she decided to quit. I fitted it for her so that she could go to bed without the incomplete work bothering her thoughts.

By the way, at midday she had an appointment with the podiatrist to attend to her feet. Afterwards we decided to have lunch at the club where we met some friends. Then to retrieve some medical benefits and post some letters.

This morning I had an appointment for my annual check-up blood test. A fasting test, so not to delay breakfast for too long I went there a little after 8am once she had had her shower. Feeling tired she returned to bed until I returned home. I always take a book to read while waiting my turn but this morning no one else was waiting, so within 5 minutes I was off home again. She was still sleeping. I went out to my dungeon, forgetting to take my CB radio. Each half hour or so I checked on her, still asleep. The last time was around 9:30am when I made a cuppa. Around 10:15am I checked again, this time finding her awake, flustered, sitting on the floor between our two beds, her slacks only part way up her legs. "I've been yelling out for you for half an hour!" she complained. She had risen, partially dressed, sat on the side of her bed to pull on her slacks then slipped to the floor, coming to rest on her knees. With some difficulty she managed to sit on her bum but was unable to raise herself to a standing position. The emergency phone on the bedside cupboard was too far away to reach. She has been weary today.

On Tuesday she had a check up with the caring physician. He seemed pleased she has been able to reduce her PD meds and continues to comment on her "animated expression". She told him not to bother with her feet because she was to see the podiatrist the following day, so her gave her boobs an inspection as well as the usual range of thumping, listening etc tests. He certainly believes in giving value for money.

So easy to leave her by herself, so easy to forget to use our communication gadgets.

Chapter 85 - Communicating

Sometimes I don't care to write this stuff; once a moment of interest has gone I quickly forget then trying to regurgitate it from memory or from my little notebooks makes a lifeless story.

Our "standing from chair" timing tests have dwindled in number to none over the past few days while we took a picnic drive north & had visitors another day. However, I did buy a stop watch at the K place for the fantastic price of $5.25 & then spent another $50 for a few DVD movies on special. Quality movies. We have not had time to watch them all. But what we found was that over the week her standing times became lower & more regular. Must run another "trial".

She made a discovery Saturday morning a week ago. After taking Madopar Rapid at 6am each morning she has been of the habit to lay in bed until a wave of shudder flowed up her neck & through her head indicating that the medication had kicked-in, and her legs didn't require a lot of stretching. On that morning it didn't. You know me, what's changed, what is different. It seems that the night before she had dissolved the Madopar Rapid from the kettle soon after I had boiled it for an Earl Grey, and the following morning there was no sediment in the bottle of the little pill bottle. Usually there had been, requiring one or more refills of the little pill bottle with cold water to flush away the residue; sometimes she complained of "grains between my teeth". So, even though the medication had the night time to dissolve it had not done so completely, and swallowing lumps, although very small, of the stuff had been sending bursts of L-dopa into her brain. And schoolboy chemistry knows all about temperature & dissolving of solids. So each night since then she has been using very hot water for the Madopar Rapid. The medication instructions simply say dissolve in water & drink. Since that discovery she has risen a little after 7am each day, showered & dressed herself, even the dreaded bra clip, except for Wednesday morning, after a bad night when her legs wanted to be rigid, she suddenly had severe lower back pain as she left the shower, then needed the TENS machine & help dressing. One morning she even washed her hair without me being aware she had done so.

I believe travelling upsets her equilibrium so was concerned that our picnic trip north on Thursday would have bad consequences for her. Having visitors on Friday may have taken her mind off problems. All she told me was that her legs shook all Thursday night.

Earlier in the week I discovered that one of our two cordless phones was unreliable, so I decided that the time had come to replace them with three cordless handsets. She found in the junk mail a special on a 4 handset cordless set down at the K place so first thing, well 8am, I was down there. So now we have a handset in the kitchen, beside her favourite chair, next to her laptop in her sewing room & one here in my dungeon. So with the emergency call phone in our bedroom we have 5 handsets on our land line, 2 VOIP handsets for cheap calls, 3 CB radios & a broadband connection. Can we communicate or else? We nearly had some new CB radios as well; I accidentally dropped my hand held CB into the yellow in the toilet bowl. I retrieved it, washed & dried it & before I was able to remove its battery the poor thing had started audibly chirping to itself. Dis-assembly, contact spray & overnight resting cured its problems.

She's ready for church; must fly.