Chapter 102 - Peripheral Pursuits

A few weeks ago at our local PD group we had two speakers; the first a practitioner of PEMF (Pulsed Electromagnetic Field) therapy, the second a local physio. The reluctant PEMF person was encouraged to attend our meeting to describe the benefits of applying her $28,000 machine to a wide range of illnesses, including PD & MS. The PEMF person said she had alleviated her MS symptoms by using the machine. Talk of "energy levels" and like terms tend to raise my inherent scepticism of such alternate procedures. The PEMF machine consisted of a heavy box mounted on a trolley of a pair of wheels and a handle; two cables ending in loops of heavy gauge wire (all insulated) were attached to the box, a control (intensity?) knob and a start button on the front. Solidly made yet a prototype look about it. When turned on, loud "clacks", that sounded like a large contactor operating, came from the box. I thought the machine was some form of low level induction heating device, possibly able to cook a body and not much else. Except that our local member declared that after one half hour treatment his PD symptoms had lessened and after three treatments his movement problems & stiffness had been relieved. He was quite positive about the changes in his body, he exhibited the joy of a true believer. He is a farmer from a small spud growing town near here. He was the PEMF person's only PD patient to date and herself the only MS patient. At the conclusion of her short talk group members were invited to move the PEMF coils over their bodies. Some felt sensations in parts of their bodies, others didn't. Costs? $50 for one session although a reduction to $40 for three sessions taken over a week. Some Internet searching found plenty of positive information about PEMF yet nothing really negative, about the dangers surely associated with such equipment. So we made an appointment. Last Wednesday we drove out to the spud town for her first PEMF session, short applications of coils to chest, upper & lower back, each side of head (concerned about that!).

Mid-afternoon Wednesday at home she was shaky, without pain or balance problems, yet felt cold (weather outside was lousy) and yawned a lot. Later she felt bright. Then early evening she was asleep in her chair. Between mid-afternoon & bedtime she went to the loo six times. After watching a movie she went to bed at 11:30 saying "I will sleep as soon as my head hits the pillow", and she did except for when she needed the loo at 1am, 2:30am, 4:30am and 6am. The effect of the PEMF?

The following morning, Thursday, she showered, dried, & dressed except for one item with small hooks, cardigan & socks. Then to her weekly physio session at the hospital. Afterwards, shopping & lunch. She was feeling well, although this is a Thursday pattern and must be due to the physio. She steps out much better. Yet we can't establish a routine to perform similar exercises at home, even though we have bought dumb-bells, leg weights, a small stepper & use a small box for stepping to take advantage of the benefits to her. (A short time ago I stopped typing for her to go through the physio routines - we MUST set aside time mid-mornings). She spent the remainder of the day & evening reading a recently published book exposing the inner workings of a happy-clappy "Christian" institution (business?) modelled along the lines of similar mega-churches in the land of the free. She did not feel tired. When the PEMF practitioner rang to ask how matters were going she was told the day had been good, mentioned the numerous trips to the loo and also an extreme amount of flatulence. Seems the latter was expected but not the first.

Yet on Friday she needed drying & dressing after her shower, then the TENS machine on her right hip. Just the nature of the Beast. Later her balance was bad. She fears that soon she will fall badly. Mid-afternoon a-snooze in her chair & on waking she was not moving very well. Then I drove her down to the local park named after that old & round Pommy queen. We have been doing this regularly now for perhaps 3 weeks; just a short walk, maybe 10 minutes around the paths, frequently sitting on the garden benches, otherwise her back/hips stiffen enough to cause her pain. When we first began this afternoon walk I had her walk for too long and I became concerned I was in danger of not getting her back to the truck. Also on Friday she decided we were running out of clothes, so by the time she sorted dark & light things to place in the washing machine she was quite done in. The washing machine is something I'm prevented from using (the last of her domain?) although I usually, as this time, get to remove the damp clothes into the dryer, or onto hangers and the clothes line. It seems I can't be trusted so separate things to prevent her underclothes becoming a neutral shade of gray.

A reversal on Saturday when she showered, dried & dressed completely, even those little hook things! Although her back was somewhat tender, blamed on bending during sorting clothes yesterday.

Last night she woke me at 2:45am when she was stuck in the middle of turning over. How can a normal healthy person understand that problem? Then at 5am a cramp in her right leg required her to walk the house for awhile. We woke just before 9am. Again she showered, dried & dressed completely yet had insufficient energy to get her bowl of breakfast cereal with sultanas (or are they raisins?) on top. No church today.

Last weekend friends from the southern steel town (not that there's a northern one any more) paid us an impromptu visit; I felt as if I had had a holiday.

I don't think I have mentioned her medication changes, so for the record, 1 only Sinemet CR & 1 Inderal at 9am, 2pm & 7pm, then rather than take a dose around midnight and then a Madopar Rapid at 6am, she takes only a Sinemet CR sometime during the night between 1am and 6am, just one of those times when she wakes. Yes I know, the average neurologist would tell her she is under-medicated!!

Oh hell, I am past lunch time, so must cook something frozen.

Chapter 101 - Much Less Than Perfect Service

Two weekends ago we attended the wedding of her niece. I let her make the arrangements for suitable disabled accommodation. Loxley, the wedding reception venue, (www.loxleyonbellbirdhill.com.au) assured her that their place was disability friendly and that they would organise accommodation for us at the Hawkesbury Race Club Motel (http://www.hawkesburyraceclubmotel.com.au/index.html). We had to pay in advance of course. We booked two nights, Friday & Saturday, at the motel to ensure that she felt well enough to attend the wedding. And we thought we may as well spoil ourselves a little for $355. Loxley's acknowledgement letter to our booking stated "Gourmet Continental Breakfast at the Motel & Transfers to & from Loxley are included in your room tariff". Check-in time was 2pm; we arrived shortly after. It wasn't easy to find the motel, not well sign-posted, hidden behind a racecourse complex. Cheery reception staff; we joked about having to travel along a dirt road to get there. This was not really the fault of my GPS this time, truly! I was told "cooked breakfast on Sunday morning"; not exactly what we booked. When I asked about the restaurant I was told there wasn't one - "we have only been open a year. We can book you a table at Hog's Breath". Not exactly what she required after 2 hours of travel plus a short visit to our elderly ex-neighbour now in a nursing home. Anyway, disabled parking was in slot 2 beneath the building, a lift to the first floor to Room 4, their room with disability features. Quite a large room, good furniture but a double bed - why not singles? The spacious bathroom had grab rails in appropriate positions except that at the loo positioned on her wrong side and not placed well for lifting herself. The loo was positioned far enough from the facing wall that she feared falling forwards. A well stocked mini-bar that we avoided.

She rang Loxley to tell them that the motel knew nothing about continental breakfasts. She was assured the matter would be corrected. Shortly afterwards motel staff arrived with a chromed "basket" containing nothing that I considered "gourmet". Six slices of bread wrapped in plastic, lots of those little plastic tubs of jam & margarine, only one small bowl of apricot halves, no fruit juice, lots of those small packets of cereal, none of which she can swallow . I suppose the expensive mini-bar was intended as the source of fruit juice. Early evening hunger pangs sent me looking for food. The "Hog's Breath" & associated local pub were generating considerable din as were the rowdy crowd. Not a pleasant place for a person with disability. At the service station next door I bought 3 frozen dinners for $23. Although she protested, I encouraged her to eat one frozen dinner, I had the other two after heating them in the microwave in our room. Voices & racket from other guests carried through the walls, I drowned them from our room's TV set.

Saturday morning we breakfasted on the typical edge-of-town motel continental breakfast. She was feeling bad, sat in her dressing gown until midday when I showered, dried & dressed her, a "Do Not Disturb" on the door handle kept cleaning staff away. Although I removed the sign when we left, I forgot to replace it with a "Make Up Our Room" sign (if one existed) so our room was not made up on our return after the reception. During dressing she doubted she should attend the wedding; teary. Feet were swollen, stockings tight, so they were left off.

At the church we sat in the rear corner. She did not mingle. After the service relatives spoke to her where she was seated, then to the truck & back to the motel where our "transfer" was to take us to the reception at 4:30pm. We walked, she stooped, the few yards to the motel office, She saw the "transfer", a small 10 seater bus, decided she faced difficulties getting in & out of the narrow doorway and its steps (she avoids our village bus for the same reason). When I told the motel manager (?) that I intended to drive to the reception in case I needed to bring her back early he said that was a good idea since waiting time for a cab was at least an hour for a $50 fee. A cab had been booked for 11pm to return us since we were the only guests of the wedding staying at the motel. When I attempted to return for something in our motel room I found that our room key cards had failed (probably 24 hours after our arrival the day before, probably we were the first to stay longer than one night) so the motel manager had to re-enable them for me. Better then than late at night on our return.

At Loxley we had to leave our vehicle on the lowest level car park, some 20 or so metres elevation down the hill. Fortunately our son arrived as we did, so he on one side & I on the other, we hauled her up the bitumen driveway to the pre-dinner drinks level. A little later she had to pull herself, using both hands on the banister, up a narrow stair case to the dining room. There was insufficient space for me to be at her side. She was seated well at the end of the centre table so she didn't feel congested. I checked the disabled toilet with its token grab rail on the wall. She did not rise to be part of family photos out on the verandah. I asked the MC to check that the cab booked for us had been cancelled, perhaps he did, for I had discovered that the reception was to end at 9:30pm, not 11pm as mentioned by the motel. I was pleased I had driven rather than waiting at least an hour in the dark at Loxely for a cab.

As the reception was drawing to its conclusion, I walked down to the truck after having found a parking spot near the front door. Even so, she had to go down & then up some stone steps to get up to the level of the truck. Also there was a step at the front door. Loxley was not designed for the disabled. Drunks would also have difficulties.

Back at the motel there was no sign of another continental breakfast. Not in the morning either. Although the majority of the previous day's breakfast remained, neither of us touched any of it. I rushed her to get out of the place as soon as possible. When I handed in the key cards, the motel manager queried "You didn't come down for a hot breakfast at 7am?" I bluntly told him that was not part of the deal.

Spending the rest of Sunday with grand children eased our displeasure a little. When we arrived home late that night we found a message on the answering machine from the motel manager. He woke us at 8am on Monday by again talking to the answering machine. I returned his calls at 9am to learn that he wished to sort out discrepancies. $20 worth, for, I think, a breakfast. I told him I wanted a refund for unused transport. He said that since I had "refused his offer" of transport I wasn't entitled to a refund. So I told him that if we had we would have waited an hour & a half in the dark for a cab. He said he had mistakenly confused the date, 11th August, for 11pm on his paperwork from Loxley. I called him a "Fool" in a loud voice. Have you ever noticed that obnoxious persons react more strongly to socially acceptable words such as "fool" than vulgar sexually explicit words? Anyway, by this time I had lost it, so I think I hung up first. Then I composed a long email to Loxley, and now after a week they have not seen fit to respond, in words by phone, email or as a Visa credit. I just checked the latter.

The following is what I consider the very polite email I sent last Monday. I don't expect a refund now. Names have been removed to protect the innocent. Don't read unless you have to; it's just a Readers Digest version of the above.

"Loxley Manager,

You arranged accommodation at the Hawkesbury Race Club Motel for myself & [my wife] for Friday & Saturday nights 10th & 11th August. The night of Saturday 11th we were to attend the [family name] wedding reception at Loxley. I understand [my wife] had several telephone conversations with your staff to ensure that the motel room was suitable for a disabled person. [My wife] has Parkinsons Disease. Also we were to be provided with continental breakfasts delivered to the room on both Saturday & Sunday mornings. We understood that transport was booked for 4:30pm on Saturday afternoon to take us to the reception at Loxley and another to return us to the motel after the reception. [My wife] was told there was no need to verify the arrangements with the motel because Loxley made all the arrangements. We understood the motel cost $155 per night plus $45 transport to & from the reception.

When we arrived at the motel on Friday afternoon we found the room quite satisfactory but were surprised to learn that it lacked a restaurant. I was told that although the motel had been open for a year, the need for a restaurant was yet to be decided. The motel staff offered to book a table at the nearby "Hog's Breath" for us. I declined because [my wife] was not in a condition to eat out. When I queried our breakfast arrangements I was told we were to be given a continental breakfast only on Sunday morning. [My wife] then rang Loxley & was told that the matter would be sorted for us to be given continental breakfasts on both Saturday & Sunday. Late Friday afternoon a breakfast "basket" was delivered to our room for Saturday morning. I went to the local Shell outlet to buy some take-away dinners which were heated in the motel room microwave oven.

On Saturday [my wife] was not really in a condition to leave the motel room, let alone attend a wedding. She needed assistance to shower and dress, and I only mention this to indicate how unpredictable are the symptoms of PD. After the wedding we returned to the motel only to discover that our room security keys required resetting because they failed to open the doors. At 4:20pm we went to the motel office to wait for transport. The motel staff advised me that since there were only the 2 of us requiring transport a cab was booked for 11pm to bring us back from the reception. Because [my wife's] balance was very poor at the time we had to keep walking around the path outside reception. When she saw the bus she doubted that she could get into it. So I told the motel staff that due to [my wife's] condition I had decided to drive to the reception. And doing so would allow me to bring her back to the motel early if she was unable to last the whole evening. I was told that to do so was wise because a cab fare was $50 with up to an hour waiting time.

On arrival at the reception I asked the MC to check that the cab that was booked for 11pm was cancelled. We enjoyed our time at the reception, the food was excellent & we left as soon as the reception ended at 9:30pm.

We left the motel on Sunday morning while [my wife] was able to do so, shortly before 9am. When I returned the security keys to reception the comment "You didn't come down for breakfast" was made. I replied that "We were supposed to have a continental breakfast, and we intend to claim back the cost of transportation".

On arrival home last night we had a message on our answering machine from the motel wishing to settle "discrepancies". There was another message at 8am this morning as we were waking. I returned the call at 9am. I was told that $20 would be refunded from the motel, but since I "refused" the offer of transport there would be no refund on that. It seems the cab (fortunately cancelled) had been booked for 11pm instead of 10pm because of confusion in misreading the date, 11th, as the required time. A nice view from Loxley, but not if we had waited an hour & a half in the dark for a cab. Anyway, I said that since all arrangements were made with Loxley, our account was paid in full with Loxley, that the motel was a sub-contractor to Loxley, that I intended to deal about this whole matter only with Loxley.

Loxley described a "gourmet continental breakfast" in the letter acknowledging our booking. I think that is stretching reality to describe it as such, 2 slices each of white, rye & wholemeal bread wrapped in plastic, some half dozen small cartons of standard breakfast cereal, one (and only one) small bowl of apricot halves, some dozen or so assorted jams, butter, margarine etc. I expected perhaps the odd croissant, a piece of cheese rather than standard Okka fare to be found in any cheap motel. There were no additional tea or coffee bags to replace the ones that we used the evening before.

Yes, I did "refuse" the "offer" of transport but I don't see why I am not due for a refund since the motel was put to no inconvenience because the bus was parked at the side of the reception building, and its engine was not even started and we did not get aboard the thing. Loxley assured us that two continental breakfast were included in the package.

Please credit my Visa card with a refund for un-used transport and one continental breakfast."

A shame neither of us will have the need to return to either Loxley or the motel so that I can refuse their hospitality.

Chapter 100 - A Late Night Visit

Two nights ago, blood dripping from her nose, we visited emergency at our local hospital. At least this was not for a PD related medication issue. Around 9:30pm her nose began to bleed. Fifteen minutes later, after I failed to respond to her calls on the CB, she came looking for me in the garage where I have set up my embroidery workshop (our "truck" is now old enough to tolerate the weather at the front of the house). Somehow I had skilfully leaned against the radio in my pocket and turned down the volume - skillful because two buttons need to be pressed. By 10:15 I became worried that the flow had not slowed even though I placed a packet of frozen broccoli on her brow and neck as well as plugging her nose with tissue, so I said "If the flow has not eased by 10:30pm we will head to emergency". Similar thoughts must have been in her mind; she did not argue. However a loo stop was required. While she held onto her fireman's pole with one hand and pressed tissue against her nose with the other, I lowered her clothing. Did I mention that her tremors had increased with her stress level? And I had to dodge the drops of blood which made a mess of the tile floor. Seating her was easy, raising her another matter. A hand towel was then found to be a more effective drip catcher. Then we faced a challenge of the "truck", our 4WD. She must use a small plastic step to attain the running board then must hang onto grab bars to support herself while I push. Even more difficult than usual, she managed the movement using only one hand. At the hospital we reversed the action, not a drop of spilled blood. ( Most people are puzzled that she finds getting into & out of a 4WD easier than a conventional car.) The triage nurse took her details; then we waited; she occasionally needed a drink from her water bottle for her mouth was very dry and my task was to wipe blood from the spout, for it is difficult to drink while holding tissues to a leaking nose. About 10:45pm one of the doctors she remembers from her horror visits of almost two years ago called her in - he didn't remember her though. After his examination we waited some time for him to return. Blood dripped from both nostrils. He cauterised the right nostril with silver nitrate, later returned with a plug he said "worked like a Tampon" for her. He withdrew a long dark snake of clot before some 60mm of the plug was forcibly stuffed up the nostril. The last few mm hurt like hell. She later developed a headache and her left eye tended to weep until the object was removed next day. I saw her caring physician in the emergency area attending another patient. When he came over I asked "Is this the way you spend your evenings?" He said "Quite often" before asking what had happened.

We were home again a little after midnight. I made her a bedtime warm drink. She measured her blood pressure - 163/94, pulse 62. Into bed at 01:15 after sponging her face clean but by 01:45, headache, pain around her left eye and her left shoulder and a stiff neck forced her out of bed to sit in her chair until 03:30 when she returned to bed, not noticed by me.

One observation puzzled me, but experts were not interested. During the day prior to the bleeding nose I frequently found her asleep in her chair. Granted, my notes show that she had been up some 4-5 times during the previous night and needed to walk the floor for awhile at 6am. So maybe irrelevant.

Tuesday began as usual at 6am for a shot of Madopar Rapid before again seeking comfort in her chair. After an 08:30 shower she needed drying and dressing. The nose plug was now a bright red bulb protruding from her nostril. I rang our local GP for an appointment as directed by the hospital. When I began to show excitement at being told "she could be squeezed in at 4pm", another small gap was found for her at 11am. As it was, our GP was running late, so a wait of about 30 minutes. Being a man of action, our GP called the hospital to arrange for the surgeon on duty to inspect the nose. So back to the hospital shortly before noon. Some more waiting. After the plug was removed only some pale pink fluid; a nurse quipped "The GP could have done that." Home by 2pm. No sign of blood since. And today has been a reasonable day; she even dried and dressed herself this morning. Everybody has agreed she should not take any more Astrix, at least for awhile.

Since the last post, apart from the above saga, there have been a couple of incidents. One day, she was caught short and we had a couple of minor accidents. The first ever that I know of. Her symptoms fluctuate from day to day, some mornings she is able to shower, dry and dress and on others, no. Some days she needs the TENS machine for pain, most often not. We had been talking about returning to the meds level she was on before experiencing the horrors following her stay at the clinic down south, back when she was not "too bad", when the neurologist at Hot Air City believed she needed more medication. She has made a step in that direction, since reducing meds is no longer the direction to take, so now MR at 6am, then CR & I at 9am, 2pm, 7pm but only CR around midnight. She has shown no desire to use her scooter on the few times we have been shopping. She continues to have "good days" after Thursday physio sessions. For a couple of nights she needed to get up during the night maybe up to 5 times, not all to the loo, often "just to get comfortable".

One morning an interesting example of her claustrophobia. While in my dungeon I heard some very loud thumps in the house. When I found her she was in our guest bedroom (where guests hardly ever stay). She had been rummaging about in the built- in wardrobe. She had slid the three doors into a closed position before she realised there was a clothes trolley behind her and wardrobe doors close to her face. In a panic she had to fling the doors apart so that she could escape. The thumps I heard were from the doors hitting the ends of the wardrobe.

Now for the next 100 posts.