Chapter 222 - Handyman Day

Using some brick pavers & lengths of timber I raised the head end of her bed about 100mm, well actually the mattress, yesterday. She was a little hesitant about getting into bed last night. My Heath Robinson construction was a little rickety but quite stable, if you know what I mean. About midnight, time for pills and complaints about tingling in her head, due of course to the raising of the mattress, to her mind. I suggested that the cause was probably her digestive system recovering from the anti-biotics she has been taking for the UTI, and the amount of levadopa now in her system is producing the slight effects of over dosing experienced before. She accepted that & returned to sleep. Only rose once during the night. This morning stiff, bent over her trolley, shuffling, lower leg pains. I talked her into a few minutes on the treadmill. She needed her shower chair, then I needed to dry & dress her. The day was not starting well. She was feeling miserable & I was becoming depressed at the start of a good day.

So I thought "Stuff it! I am going to complete some little jobs, get them out of the way." About to go to the hardware store I asked "Would you like to come for a drive?" "Yes, I should get out more." Not much of a trip, 5 minutes down to Magnet. As usual I asked whether she wanted to get out, and was surprised when she said "Yes, I will." Over to the timber section where we talked about the pieces I wanted cut to size, 3 different thicknesses of pine and a sheet of MDF. While that was cut we went into the shop area and bought some power cabling, fittings and clips and a door bell. She was not bothered walking along the aisles between the racks, although I did not waste time finding the bits. She was even able to wait patiently at the check out queue. Then back to the wood area where I left her standing while I went for the truck. She flagged a bit when we returned home.

You need to know why we need another door bell, don't you? You know that we already have a door bell, really two, one in the kitchen and the other out here in my dungeon so that while I am employing myself with whatever I do at this computer all day, accompanied by loud music, there is little fear that our infrequent callers are ignored, and more particularly, so that she doesn't need to respond. And you know that both "bells" actually produce a barking noise, realistic enough to confuse callers. Now our new 3rd door bell? A few mornings ago, after her 6AM meds she needed to meditate on the loo for an extended period; I went back to sleep, dreaming a retirement nightmare (a recurring theme even though it's now over 10 years since i escaped) probably at the time she was yelling her heart out perched, unable to rise off the loo. When I finally woke after she eventually returned to bedroom complaining that I was deaf (I am in one ear) I pointed out that she failed to take her CB radio with her. Then I thought of the alarm button on the wall of the bathroom, why not another to awake me if the situation happens again? So now close at hand to the loo is a door bell button, wirelessly connected to the "bell" screwed onto my bedside table. It plays an unrecognizable tune rather than a dog's bark; otherwise I might race half asleep to the front door in the nuddy!!

So far today she has had 3 five minute sessions on the treadmill. I placed more masking tape strips from the door of my sewing room to guide her to the side of the treadmill.

We have decided that unless she has improved within a few days then our trip down to Pivot City to see the performance of Seusical the Musical (in which a couple of our grand children have roles) will have to be cancelled. If she remains as she is at the moment, the extra stress of travelling & living in motel rooms will make the experience memorable for its horror.

She is very bent whenever she walks, pushing her little trolley in front wherever in the house she goes. When I try to hold her when in places the trolley won't go she prefers to open cupboard doors so the shelves inside can be clutched with one hand to prevent her falling. She senses that when her feet freeze to the floor, any slight tilt off centre means a fall is imminent. Her worst horror has not happened.

She just called me on the CB. She is at one of the embroidery machines making a calendar; the bobbin had run out; full bobbins were on the other side of the room. She was unable to lift herself from her chair to push her trolley a couple of metres to get another bobbin. Some may think she wants to be "waited upon"; no way, she really struggles to remain independent.

Chapter 221 - Odds & Ends

"Those strips between the beds really help me get back into bed at night. Before you put them there, I froze as soon as I returned and reached the foot of the beds." she said a few mornings ago. The strips are just ragged bits of masking tape stuck to the carpet. Our cleaning lady will need to be cautioned next Friday otherwise some of the strips are likely to end up in the vacuum cleaner.

She has decided to continue to sleep on her older harder mattress so I nearly busted my pooper dragging the expensive shape molding mattress back into the ceiling. Last night she queried whether the head end of her bed could be chocked up a little. I'll see about placing some scrap timber between the base & the mattress. She says her breathing is restricted when she lays on her back on a level surface; that's why sometimes she asks for extra pillows.

The course of ant-biotics has about finished. She still rises a number of times in the middle of the night but she has not been complaining about the number so I suppose the UTI has gone. She asked me this morning to return the commode to the shower recess in the other bathroom (a convenient storage space for un-used exercise gadgets, walking frames, scooter etc etc.)

Yesterday when I collected medications one of the chemists asked how the Sinemet CR was helping her. I really could not give a definitive answer. So much interacts. I think some her difficulties are withdrawing - she has not had intense hip & lower back pains recently but is that due to the Bowen sessions easing pain thus improving her posture? (no Bowen recently, school holidays & the lady seems to be away) What contribution was the UTI making to her general non-well being? She seems more conscious of her lower half freezing; often talking to her feet, telling them to move, counting "1, 2, 3, 4" softly out loud. I noticed recently on the PIEN group that some North Americans say they have experienced little or no benefit from Sinemet CR - good luck to them; they who haven't been deprived of the stuff for the last year!!

She has used her walker to visit her friend around the corner a few times. Thursday last week I took her to our local PD Group meeting and I came back home because a solar panel man was calling for a site inspection. A number of the Parkies commented on her light clothing and no jacket when every one else is rugging up in our cool autumn weather. I find, in general, that Parkies are largely ignorant of the problems of their fellow sufferers, seeming to believe that every one exhibits the same problems as themselves, little more than a few shakes & tremors. I suspect ladies think the flushing & sweating of the autonomic problems of PD are due to "change of life" matters even though that happened to themselves 20 years earlier. I don't know about the blokes that may have the problem. At times I can sense her dampness like steam rising through her clothing.

At "off times" her vision, even with reading glasses, is very poor. Yesterday we made appointments with our optometrist for late June. I hope a prescription can be made to suit her when she is off.

There has been no inclination to use the Wii lately and only occasional requests for the treadmill when her calf muscles cramp.

On Sunday our son & family visited so we took them to the club to celebrate the grandson's 12th birthday. Afterwards we returned back to our village where we experimented with water & compressed air powered rockets down near the pond. We had a great deal of fun but she had no desire to join in the frolics so stayed inside. Interestingly, our youngest (10) grand daughter stayed with her for company & it seems they had quite a conversation. She has so little opportunity to be grandmother.

Chapter 220 - Fear in the Night

About 10PM last night I decided to go to bed to read on my eBook. I have noticed recently that when I go to bed early she becomes slightly agitated to go to bed as well. I try to tell her that she doesn't need to, that I have my CB radio. She suspects I may fall asleep & not hear should she call. She doesn't mind when I am out the back on-line in my Dungeon, I usually don't go to sleep out there. She needed help to rise from her chair, unable to walk, just shuffle behind her trolley. "How about a little treadmill?" I suggested. A little slow treadmill usually frees her legs & feet. Hanging onto the doorways, the shelving in the built-in wardrobe, and me (although she says I am "unsafe" because I "move") we approached the treadmill which was in a position where she had to figuratively leap across space to reach the bars on the treadmill. She couldn't do it. She was breathing in bursts, huffing/puffing on the verge of a panic attack. So I had to reverse her out of the room to her trolley. Do you remember that episode of "Wallace & Gromet" where Wallace designed those robotic trousers? Well, she was walking like that - clump, clump, clump, as if there were magnets on her feet. So once again she sat in the bedroom in her director's chair and I set up her small portable DVD player. Unfortunately I chose a movie for her that became too dramatic for her; I should choose something light for her.

On the floor of the aisle between our beds she asked me to lay strips of masking tape. "Why?" "When I enter there to get into bed I freeze. Strips across the path may help." "How far apart?" "About the length of your foot." I stuck 4 or 5 strips to the carpet. They seem to help her get to the place where she hesitates before lifting her right knee to topple into bed. Often I need to help to lift her knee high enough. She is unable to roll into bed, either forwards or backwards as I can.

Her original hard mattress has been replaced on her bed; the super-dooper "mould to your body" mattress creates a hollow beneath her hip, preventing her from turning easily. It now leans against the wall in the hall; easier than returning it to the ceiling where we keep spare mattresses.

At one of those god forsaken hours, maybe 4AM, she woke unable to walk to the bathroom. I rose to help. I don't remember, I think she used the commode. I think she rose again about 5AM. Then we both slept in until a glorious grey 9AM on a rainy day.

About a week ago she made a discovery. I doubted her, going along with her idea anyway. For ages now she has used a satin draw sheet across any bed she sleeps on, at home or away. The person who made the sheets added a piece on each side to cover the width of her king single bed. So there are two seams running parallel to each edge of the bed. She believed that she tended to lay on one of these seams on her right leg, causing tenderness & pain. I couldn't see that such a small ridge of the seam was causing her the pain. But on the other hand, after many visits for Bowen therapy perhaps, I thought, the removal of the more intense sciatic pain may have exposed other underlying pain. So last Sunday we went down to one of her favourite rag/junk shops to buy several metres of satin which have been turned into quilted wider draw sheets. She says the experiment has been successful.

One night she rose for the 'loo 6 times in 3 hours. After deciding that she needed meds to help retain the fluids she made an appointment to see the doctor. He was not much impressed with the idea, and as well the meds she asked for is contra-indicated for Parky meds. He asked her to have some blood tests. Next day 7 phials of blood were taken at the pathology place, then a call from the doctor to pay him a return visit. She has a UTI for which he has prescribed anti-biotics. Within a couple of days her nightly frequency dropped down to one or two 'loo trips.

Unfortunately, the anti-biotics have caused her to have up to 3 bowel movements each day and that she now blames for her severe freezing of her legs. She is probably correct; something in this last week has caused her legs to become almost paralysed. One day she thinks she forgot to take her Sifrol; not good.

On Thursday she endured an hour in the dentists chair. Her dentist, a woman, must be the world's best dentist to be able to drill & fill a cavity beneath a gold cap without causing undue stress to the patient. I have heard none of the usual choking problems. Although I could, I do not sit with her during the ordeal, preferring to sit in the waiting room with my eBook. her jaw was quite numb from the procedure and on return home she slept for an hour or two.

Yesterday was a beautiful sunny day, good for photography. Although she was agreeable for a country road drive, I remembered other trips down country roads when she became stressed with the narrowness, stopping in "dangerous" places to take perfect shots, she never wishing to get out of the vehicle anyway, that the thought of a pleasant country drive depressed me. I compensated by on-line buying some hardware, some CDs, some books for her & me as well as a kid's birthday present.

This morning she tried the treadmill in its new position I moved it to at 11PM last night and then used her circulation booster.

She has suffered enough this week.