Chapter 217 - Some Good News Perhaps

Two weeks ago I contacted ACAT to arrange some emergency "respite" help for her. I was told "we will contact you in the next two weeks to make an appointment for an interview". Well, they have until tomorrow. A month ago I called them, leaving a message on their answering machine but they never returned the call. On the last occasion the need was a little greater because the day before I blacked out - but that's another story. I used to keep an accurate daily record of her problems until doing so became a depressing chore. I am now recording each time she calls me for help; those situations where she would experience great difficulty if no one was available to assist her - getting on/off the loo, showering, drying, dressing, rising from chairs, freezing in inconvenient places. None of these problems are predicable, they change day by day. Help needs to be at hand 24 hours a day. If I were not here the consequences may not be dire but certainly stressful and messy.

She has found smelling menthol eases the shuddering shivers she has across her shoulders. These shivers tend to occur now when she lays on the bed. She uses a nasal decongestant "stick" or smells the horrible (to me) pain relief rub she often applies to her legs & back. An interesting association.

We have been travelling up to the small country town for Bowen treatment each fortnight. She never complains about sharp pains any more, just dull aches in her lower body. The travelling & small cost is negligible compared with the benefit. She has not asked to use the treadmill in weeks (I always help her on & off, standing nearby in case of difficulties.

A week ago we travelled to the coast to a wedding. The trip along 2 lane country roads & the escarpment down to the coast were a nightmare for her. The motel room, although advertised as "for disabled persons", provided wheel chair access throughout (good, even though she was not in a wheel chair) but lacked reasonable grab rails and moving between bed & bathroom was unfamiliar & too far for her without having anything to grasp along the way. On the return trip we called at the disabled toilets in the town at the top of the escarpment. There we found separate disabled toilets, one in each of the ladies' & the gents' and steps from all directions to reach the toilet block. She found the toilet elevation too low & the grab rail inadequate & poorly positioned. Fortunately, she was able to unlock the door & call out to me for help, so I had to enter the ladies'.

At our last local PD Group meeting we discovered that one of our out of town members had been given a supply of Sinemet CR by his local chemist, on grounds of "emergency". I asked our local chemist in our town to discover that he & the other are brothers. A couple of quick phone calls, I made a quick visit to our doctor's for a script and a 6 month supply of Sinemet CR was ordered. Delivery was stated as "at least 10 days" & when I checked later was told the advised delivery date was 7th March. So I suspect that the stuff is being imported; almost sounds like the delivery on books etc offered by Amazon!

Speaking of Amazon, we received a number of quilting books from them early in the week. She continues to apply herself to quilt making, which is encouraging to see. She still works through her weekly puzzle magazines; no recent trivial prizes of late.

Chapter 216 - Better Times

Thursday at 6AM she began taking one Sifrol ER per day. There have been no side effects that she has noticed. The rest of her meds remain as reported in the last Chapter. I have gained the impression that her Off times have decreased and are not beginning as abruptly. She has not been requesting the treadmill for the last few days, until this morning after "laying too long in the one place in bed" when she decided to use it about 7AM & stayed walking on it for 6 minutes, and that relieved some pain she felt in her central back. She has not experienced the shudder, the need to lay down, feeling of "someone walked over my grave" for quite a few days. For the last few mornings she has not needed help to dry after showering or help pulling on her pants. The weather has not helped her; she continues to sweat profusely, so much so that her arms often look wet and her hair is wet & actually drips. She is not going to the loo as often (maybe that's why there have been few cries for help?) even though she drinks litres of water each day; last Wednesday I had to buy a cask of water because she had emptied the one left in position in the kitchen. Even though the weather has been hot she completed two wall hangings for herself during the week. Fortunately her hands are little impacted. She studiously completes her puzzles each week and mails off the results. On Thursday afternoon she had another Bowen session and I suspect this is minimising her pain & discomfort, even though at least a day is needed to recover from the effects of "being kicked by a horse". I can't bring myself to take more detailed daily records I once used to; to do so invades her integrity as well as depressing me, yet I feel I should keep track of the number of times she calls for help etc etc for this record to be more meaningful.

A little later: After writing the above I went to the kitchen to make another cup of tea. In checking on her I found her asleep on her bed, fully dressed, she has showered. Maybe those sudden feelings of a need to lay down are happening more often than she says. I will let her sleep until her next meds time when she will probably wake any way.

10AM. This time when I checked on her she was stirring. I helped her up & to her favourite chair. She said that she had had a slight headache before showering so took some Panamax then after showering she began to feel very tired, as if she closed her eyes she would drop off asleep, so she dressed herself, layed down & slept. She seems a little groggy, a trace of the headache remains. Surprisingly, she had left her trolley out near her chair before having the shower, although she took the CB with her to the bathroom then to the bed. I roused on her for not calling me as she must have been in danger of falling. After getting up she walked OK to her chair. The morning is cool and I opened the doors to allow fresh air through the house; even so, she needed chilled water from the fridge.

In checking on her again she seems subdued. She says she has not felt like this for the last few days. She has a feeling to "meditate" & she needed assistance to rise from her chair to the trolley. A few nights ago she made an urgent response to tummy pains and was pleased she had reacted quickly to the need.

Chapter 215 - Getting Stuck

About 12:30AM Monday morning I woke dreaming I was being called by someone, a soft voice far away. I looked across, she wasn't in her bed. Then my name was called more loudly. I found her at the doorway to the bathroom, stooped, hanging onto the door jamb with both hands, her trolley parked a little way further along. She had had the urge to go to the loo, managed the couple of metres aided with her trolley and simply stopped, unable to go further. I helped her into the bathroom, to sit, then a little later to rise again. Shuffled back to bed, me walking backwards leading the way. In daylight at 10AM after a shower which she managed on her own I found her seated on the side of her bed, stuck with her arms in her blouse above her head, the blouse tangled stuck to her shoulders; she was unable to extricate herself. Sweat was dripping from her. I untangled the blouse, releasing her arms. The blouse was quite damp after it absorbed the sweat across her back.

Today we rose early, about 6:30Am, too warm to remain in bed. She had breakfast then busied herself with her patch work. Too late again, she went for a shower after 9:30AM. I went to check on her. She had made it to the bathroom when she suddenly ran out of steam, was able to pull her shower chair into position then sit in it under the shower. She needed help to rise & then dry. Dressing was a replay of yesterday, although I was there so that she didn't become as frustrated with her attempts as she did yesterday. "I must have a shower earlier" she said.

Her current meds regime is:

0600 2x Madopar HBS 100/25
1x Sifrol 1.0
1x Deralin 40
1x CoQ10 100
2x Omega 3 1000
1x Folic Acid 500
2x Vit C 500
1x Vit B1 250
1x Calcium/magnesium
1000 2x Madopar HBS 100/25
1x Omega 3 1000
1x Vit C 500
1400 2x Madopar HBS 100/25
1x Sifrol 1.0
1x Deralin 40
1x Astrix 100
2x Omega 3 1000
2x Vit C 500
1800 2x Madopar HBS 100/25
1x Omega 3 1000
1x Vit C 500
2400 2x Madopar HBS 100/25
1x Sifrol 1.0
1x Deralin 40
2x Omega 3 1000
2x Vit C 500

This will change in a day or two when she gets a supply of Sifrol ER.