Chapter 263 - The Long Lost is Found

I just went to check on her, sitting in her chair in front of the TV, head to the right, almost asleep. "How are you?" "Awful." "Pain?" I query. She rubs the thigh of her left leg. "Why don't you try the Machine?" "I have." "Already?" "Yes". That surprised me; she has only been showered and dressed for a short time.

The Machine was found last Wednesday, at long last! The Machine is a so-called Circulation Booster, a TENS device, with foot pads. For weeks now we have turned the house upside down looking for the damned thing, ever since she has experienced severe pain in her legs. On Wednesday I began searching all the cupboards, all plastic containers & boxes, up in the ceiling, all of which had been searched before. We were standing in her sewing room when she said "There is another cupboard on that side of that sewing table." "There is?!!" "Yes, but but there is too much on the table to pull it out. Mind the machine!" she said as I pulled the table away from another cupboard to gain access to the door. There it was, the Circulation Booster wrapped in a plastic bag. She immediately set it to use, seated in her TV chair. So for the last few days her pains have been much reduced, although perhaps the pain relief effects from the Machine are lessening. She said "It must be used no more than 6 times a day. I wonder whether it makes my shakes worse." "I doubt that,' I dismissively replied, " It's function is to deaden the response of the nerves involved in pain, a sort of anaesthetic." I suspect too much use acclimatises the body and less pain relief is experienced.

I'm not tallying the daily count of the times she becomes "stuck", on the loo, rising from chairs, unable to move around cluttered areas as in her sewing room, yet I am sure I am called more frequently, perhaps 6 times a couple of days ago. And once I begin to help her she immediately needs to begin moving forward, and panics if unable to, when her feet point in directions her body is not facing, and her feet are anchored to the floor. She seems to need the jolt of her body about to move to motivate her feet, which seems very dangerous, as she grasps for the handles of her trolley, wheezing through her nostrils as a frightened animal.

She has begun some more embroidery projects after spending some time crocheting butterflies for her Sheltered Workshop Xmas tree. Yesterday evening she became very frustrated with a design whose long axis was to be across the fabric yet was hooped to be oriented along the fabric but because of its size was not able to be rotated 90 degrees within the machine. She seemed unable to appreciate that the fabric should be rotated instead, something she was intent on not doing. I was unable to convince her so I left her to it. Later I noticed that the design was being stitched OK except that the hoop had popped so part of the stitch out was poorly registered, although not badly.

During the week she completed a questionnaire for Jane the PD nurse in Hot Air City. Yesterday I spoke to someone at the state Parky organisation about a PD conference to be held in a southern city next month. This lady's husband had been on apomorphine injections some years ago, seemed not to be very successful; a diffusion pump had not been used and the lady knew of no one using one. I would have expected someone in the state organisation to have heard rumours of diffusion pumps if they were in use. Anyway, I have made motel bookings for the conference. We plan to spend the day before (her birthday) in the city & will visit our friend who is on chemo. Perhaps not the ideal birthday present for someone entering her 8th decade.

Chapter 262 - Fear of Change

It was after 4pm last Thursday when we saw the PD nurse at the General Hospital in Hot Air City. The appointment had been made for 3:30pm, she was running late processing patients, a good thing if she was giving extended attention to her patients, as she obviously was, for we left her at 5:30pm.

So that day was a long and tiring one for us, commencing by picking up a PD friend at 10am to take to our local PD group meeting. That friend lost her live-in carer so has no transport - she has a car but is unable to drive. Our meeting was addressed by two nurses from our local district nursing team, although are not PD knowledgeable. An informative meeting, probably providing the district nurses with some future work, assuming the State government does not apply funding cut-backs.

After returning the friend home we headed toward Hot Air City, stopping on the edge of town at a MacDonald's, since it was lunch time and because it was raining I did not want her to walk through the rain, so we ate in the vehicle, something we must not do since we both dribbled hamburger juice down our clothes. I had forgotten to collect paper napkins so we had to rely on a box of tissues.

She used her walker for the long slog between the high rise car park and the bowels of the hospital. Fortunately it was not raining. On this visit I checked with the secretary that our appointment was valid, it was, unlike last time when we learned that the PD nurse had been ill. We sat out in a general waiting area until appointment time, having arrived an hour early. Then we waited in the small reception area for almost an hour. By this stage I was beginning to feel grumpy.

I immediately had the impression that the PD nurse was officious and blunt, as she herded her toward the office, watching (to be expected) her shuffle along behind her walker, then upbraided her, in a Matronly fashion,  for not backing up against the chair she was directed to sit in, before flopping into that chair. I thought "This nurse thinks she is a recently diagnosed PD patient, without experience." As the interview progressed I changed my opinion. I shall call the PD nurse "Jane" for very obscure reasons.

Jane began asking for medical history. As always, we have trouble remembering the details & dates; I should have brought a typed list of all her history, for verbally, from memory, details are given disjointedly, out of sequence, actual medical terms are forgotten and the whole is prone to error. For this appointment we went armed with her current meds regime and a diary of ON-OFF times for 3 days at the beginning of the week. Jane possibly thought me a pedantic twit. Jane seemed surprised that she spent almost half each day "OFF" and her effective levodopa intake was about 50% more than was considered the upper limit in the UK (Jane is a Pom). Jane continued to ask questions about activities, falls, bodily functions etc etc all the while entering information into a database which returned scores for various aspects of her PD. To my understanding she scored well considering she was diagnosed 21 years ago, although I can't remember exactly what the scores related to, although Jane seemed intrigued by the results from someone with "early onset" after so many years. YES!!! I didn't realise it on the day, but we saw Jane on 13th September, the date in September 1991 when she was given the awful news.

Jane was of the opinion that she may benefit greatly from using an apomorphine pump, something we have a natural fear of, inserting a needle into the body. Even DBS was suggested. She is very uncomfortable about both approaches, especially the latter. We left Jane having made an appointment for 6 months time unless she decides to proceed with an apomorphine trial, in which case she has to contact her neurologist for a referral to consult with another doctor associated with Jane to carry out the trial, so if she does decide to proceed, then she will be hospitalised for some days in about 3 months time. So the ball is fearfully in her court. She remembers the apomorphine trial she experienced over West when an initial 1mg test dose sent her to "sleep" for about 4 hours, causing the test to be discontinued. Anyway, I was very pleased with our meeting with Jane for she was the first person I had spoken to in 21 years (I didn't have contact with the PD nurse in the West) who had a full understanding of the feelings, behaviour, problems, and medication issues of a Parky patient, and that includes neurologists, general practitioners and even PD patients. And I thought my idea of a "fireman's pole" in front of the toilet was unknown to anyone, yet Jane was aware of such an idea, there is nothing new ....

Back home I spent an evening locating information about apomorphine, its side effects, pump usage, costs etc., printed out a bundle & left the lot for her to read. She has decided she will not proceed with a trial. She says she had made notes or marked the print outs with her reasons. We are yet to have another talk about all this. Before that I must search for written personal experiences using an apomorphine pump and failing that, or in addition to, asking Jane to arrange a meeting between us and a user of the device. The reader may be unaware that the pump is a battery powered pump (clipped to a belt or kept in a pocket) attached to a cylinder of fluid with a fine hose attached feeding a needle inserted in the skin of the stomach, or upper thighs, or shoulders. The position of the needle is changed each day to avoid complications. She would probably require normal meds during the night although some patients keep the pump attached 24 hours each day.

Her inability to rise from a seated position, to walk easily, feet freezing, continues. A couple of days ago she called me (perhaps on the CB, I don't remember) and I found her cowering in the corner between the vanity cupboard and the wall, too afraid to cross the short distance to the fireman's pole in front of the toilet. When going "OFF", her tremors begin, triggering her bladder, her feet freeze usually too close together, she fears falling, "talks" to her feet for them to move, and when very frighted she breathes  in bursts through her nose, making short mewling noises in her throat. Last night at some forgettable hour, she called my name. I woke in a stupor. "I can't get off the bed" she said, I left my bed, helped her up to her trolley then I think I waited at the bathroom door to help her return, I don't remember returning to bed myself. This is becoming dangerous.

Chapter 261 - Changes Going Downhill

On Thursday 23rd in Hot Air City she saw the neuro again. He queried why she had not had a thoracic (lower back) scan that he prescribed a year ago. We had forgotten all about it. A year ago is yesterday yet we had little memory of it. Back  home we realised our GP had said not to do it because she had not long had a back scan - I don't remember that either. Anyway, she described the impact of slowly reducing Deralin dosage to nil, the excessive tremor and that she had returned to 10mg yet was still with too much tremor, so he recommended raising it to 20mg. He gave her the usual wrist bending tests and after she said although there had been no more mini-blackouts (when she experienced momentary loss/fuzziness of vision, she feels that she is falling backward, so he gave her the usual "tug backwards at the shoulders" test & said she was normal. She had received a request by post from the hospital, following our abortive visit to see the PD nurse, for another referral so he said he will FAX another. He agreed that perhaps she should additional Sifrol and replace the Stalevo with Sinemet because she suspects that Stalevo may be causing loose bowels. Although later, after she explained the problem as something more that simple "urgency", I wondered about the quantity of Metamucil I put in her evening glass of fruit juice, so for some days now she has had none and matters are much better, but then it could be because she has now started with Sinemet again.

One morning recently I woke puzzled by a musical sound; about to doze off again and the sound occurred again; I began thinking evil thoughts about the T-hub tablet beside my bed, when I suddenly realised that the sound came from the door bell alarm I had fitted behind her toilet and on my bed-side table. I went to the bathroom to find her seated on the shower chair beside the toilet. "How long have you been here?", "About a quarter of an hour.", "How many times had you pressed the button?", "Four" she replied. So much for being a reliable alarm with which she can alert me. This must have been after 7am; she had gone to the loo, not been able to rise & walk even with the aid of the fireman's pole, yet had been able to swing herself somewhat sideways to sit more comfortably on the shower chair rather than the toilet seat. This type of problem is happening more frequently.

A day or so ago she CB'd me for help to get out of her usual chair in front of her TV, she needed the loo. I was able to help her mostly upright but noway was she able to move her feet, firmly placed on the floor, too close together. She begins to breath in puffs through her nose, she makes mewling noises in her throat, her body stiffens all over, she is terrified of falling. I suggested, hopefully, the wheelchair; normally she dislikes being moved in a wheelchair because she is afraid of falling out of it. I was able to wheel her into the bathroom and she even agreed to being wheeled out again. She now finds sitting in the wheel chair more comfortable in front of the TV, although with the footrests removed she finds her feet need support. At the moment she is using her square steel framed chair so maybe the wheelchair will return to her desk in her sewing room.

Are we becoming forgetful? We seem to be re-creating the wheel. For instance, after some months of aches & pains up & down both her legs, much applying of Ice Gel, I suddenly remembered we had bought a Circulation Booster a year or more ago for just that purpose. It had been put away once her legs were not such a bother at that time. We even briefly loaned it to people to try out. I am sure it was returned but we can't find the sodding thing, only it's empty box and remote control. Then in a moment of inspiration, I remembered the TENS machine; the same technology except the Booster is physically designed with foot pads. She found the TENS of some benefit, using it several times over the last few days.

Her wheelchair is collapsible (did we buy it for that aborted cruise holiday we didn't take nor ever will?) so the seat is of canvas. We had made a square foam cushion for more comfort while seated at her desk, but even then it sank in the middle when sat upon. So I cut a piece of chipboard (part of a desk she used when we lived in the Centre 12 years ago; never know when something will be useful) to go beneath the cushion; much more comfortable. A couple of afternoons ago we both heard a sound, like a rifle shot, which I thought may have been of electrical origin, although no circuit breakers had tripped, no brown smells. No bottles in cupboards had exploded, all equipment was working. We were sure the bang had originated in side the house. A few minutes earlier the Village handyman had replaced the batteries in both smoke alarms, most suspicious. Next morning I found one tire on the wheelchair was flat, so cursing a little I connected the compressor to the battery in our 4WD but found the tire would not inflate. On removing the inner tube I found a section of it shredded - the source of the ban the afternoon before! I must of over inflated it by using the compressor. So down the street for a new tube. Then down the street a second time because I had been given the wrong size even though I had shown the section of old tube displaying the size. The wheelchair is functional again.

She has a difficulty verbally describing her medication dosages to medical professionals (lay persons have absolutely no idea about the matter) so when The National Parkinson Foundation's Aware in Care campaign was introduced in the USA I downloaded the documentation from www.awareincare.org and use the Medication Form to list both her prescription and over-the-counter meds. So far medical professionals give it a cursory glance, preferring not to retain a copy, rather making there own scribbles or typing on keyboards (I have often seen this behaviour & wonder whether this provides them with some form of isolation in litigation matters?) Anyway I will persist since we have discovered that professionals have incorrectly recorded incorrect dosages or daily number of same, not that they can be blamed, since verbally attempting to convey the list of her daily intake can be very confusing. See her meds list below.

These days she may need some coercion to go shopping. In July the Federal Government introduced eHealth, a centralised system of collating personal medical records; a Big Brother system which has had a slow voluntary uptake so far. In our situation, at our time of life, I don't give a stuff about that and see the benefits to ourselves since in the near future we are sure to suffer invasive procedures and hospitalisation and any help to inform practitioners to make best decisions will be to our advantage. Astounded at the apparent complexity of the process, the amount of on-line bumf to be absorbed, I found the actual data entry reasonably simple, although the average computer illiterate person may find the process impossible. Since a long time ago I had set up on-line access to Medicare, my linking it to australia.gov.au was straight forward. Not so hers, because we had no idea what her password was, and we had changed ISP's long since then. So she had to visit Medicare in person to get another password. Later, at home, I was able to register her completely with eHealth. Anyway, she was not keen to visit Medicare but we went down the street mid-afternoon. Her password renewal was quickly over so I suggested we walk a little further up the street (she was supported by her walker) to buy her weekly puzzle magazines; then she was tempted to look in the junk shop a few doors further on. We finally visited 3 junk shops, buying knitting wool and fabrics; she was doing well, and when I suggested a coffee at the Club she was agreeable.

One afternoon we saw Meryl Streep in "Hope Springs" which was not as good a movie as she had thought. Very hard to find a non-violent, non-tension, non-violence movie for her.

A few days ago I pointed out to her that she hardly exercised anymore. She replied that most on most Mondays she attends a one hour physio group (Falls Prevention) at the hospital and on Tuesdays there is usually some Tai Chi at her Respite Centre (what I call her "sheltered workshop"). I encouraged her to do some stepping using the Wii Fit which we have not used for at least 6 months. After using the board alone she asked for the pedestal for it so that her steps were higher. She requires to hold her walking frame to maintain balance. I have noticed that her right foot is not lifted as high as her left, so she tends to stub the toes on her right foot when stepping onto and drags her right foot on stepping off the board. She is aware of this & attempts corrections when I mention her right foot.

This morning she has been stitching some commercial embroidery designs on her machine. In the periods between thread changes she is knitting scarves. She is sitting on a wooden kitchen chair. No need for the wheel chair today. She is able to stand and walk reasonably well. I have not been called on the CB.

Below is her medication form as mentioned above. She has been on this regime since last Thursday, two whole days away. Each evening she sorts the medications into old pill bottles appropriately labelled with times to be taken. She does not lack cognitive skills to perform the sorting!

Some excerpts from emails I sent to someone close during this week:

"It's a matter of her feet not parallel, pointing in different directions, too close together, unable to be moved to give her a more stable platform. Any slight movement of her upper body changing her centre of gravity cannot be corrected by moving her feet. She just can't move them. When she can get her feet to move she looks as if she is walking along a corridor in a fast moving train, or on a boat being rocked by wave motion, her hands reach out for hand-holds such as doorways, cupboards & the like. When her meds are working she is much better, yet hardly moves anywhere without pushing her walker in front of herself. When her feet are "stuck" and I try to move her to a seat or to grasp her walker, she begins to breath strongly through her nose, making mewing sounds, body becomes rigid, on the verge of panic."

"I was just called to help P to the loo, feet not moving, somewhat terrified. Then unable to get off the loo & take steps, so I had to bring the wheelchair into the bathroom then some stress having her turn to sit in it. Then out at the TV she was too scared to leave the wheelchair & sit on her normal chair, so she is remaining in the wheelchair for awhile. Perhaps this is the beginning of the next phase :-(( Her feet just remain on the floor, yet her legs tremor."